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Uterine Papillary Serous Carcinoma (UPSC): any others here???

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was diagnosed with UPSC, and had a total hysterectomy and 25 lymph nodes removed for staging 2 weeks ago. The cancer had penetrated into the 2nd half of the uterine wall and into 1 fallopian tube, but my cervix and ovaries (all cut out now) were clear. One of the 25 nodes removed showed microscopic traces of the cancer, jumping my diagnosis to Stage 3-C. So now I have another 2 weeks to heal from my surgery before radiation and chemo begin. I had absolutely NO symptoms; this was originally caught during a routine annual PAP test this July, (which apparently never happens). UPSC is very resistant to treatment with a high incidence of recurrance. I guess I was hoping to find someone else here with the same cancer type that would tell me that the upcoming long months and months of aggressive radiation/chemo will allow me to greet the spring cancer-free. I can't find anyone who has this rare cancer.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Try not to let the falling hair get you down, Teresa. It's all a part of the battle. It's a bummer when it first happens to you, even when you know it's coming, but you'll get used to it pretty quickly. Still, I wish I were there to give you a hug. I'm glad you have your wig already. Be sure and sign up at Heavenly Hats (google it) for their free hats for cancer patients so that you have a nice surprise box to look forward to.

I heard from Marge off-board. She made it through her last round of chemo yesterday just fine and is hoping for a fun day tomorrow watching the Eagles football game, so, MARGE, I hope you continue to feel good and GO EAGLES!!

deanna14
Posts: 733
Joined: Oct 2008

We had about 1/2 inch of snow on Friday and it is gone already. It has been very cold, but not much snow. Looks pretty!
Teresa, thanks for the reply. I think once we get through the first round and he sees that it isn't as bad as he is imagining, he will go on to work. He'll probably have my SIL check up on me, which is okay. I never mind a visit from her, she's great. I am sorry about your hair, wear like a badge of courage! I know it will be harder when it actually happens, but remember in the BIG picture, it's a little thing. Please remind me of that when I start losing mine! I am just ready to get the fight back on and get it done! Tuesday is the day. I got a box of hats from Heavenly Hats, it is fun to get a package!
I hope everyone is feeling okay. Love and Hugs!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Have a friend that always has her chemo on Fridays. Her husband is home with her for the week end. By the time her achy time is there she is able to send him off to work and rest. Leaving for the next couple of days, but my thoughts are always with all of you in prayer on one of your scheduled days. Glad you like the hats. They are a lot of help. It seemed like I had to have a lot to like a favarite few. Don't be afraid to 'stack them' too. They are even fun to wear over you wig for winter and they seem to make you wig more real too. Gods blessing on you next steps.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

My WBC, RBC, HGB AND HCT are low so the steriod effect is not helping, don't have the burst of energy from it. Other then that all other blood work is normal. I'm starting to feel that off balance effect today. The nurse told me that it would take about a month and half to two months to start feeling back to normal. I also understand that it could take up to a year to have the tingling feeling go away from feet and hands. I'm guessing by the end of this week and through the weekend I will be doing a lot of napping knowing the blood counts are going to be coming down some more! My daughter had caught a cold also so we have been avoiding one another.

Teresa, keep you chin up with losing your hair it's part of winning the battle. Sometimes it's not easy looking at yourself in the mirror without it. I had my husband shave mine off when it got real thin. My best advice with not having hair is to make sure you have a night hat, sometimes your head can get so cold I have to put it on and then again it's nice to throw it off and have the cold head when you are having a HOT FLASH!!!!

Linda, NED is wonderful. I pray that NED will be our best friends for the rest of our lives!!

I will be praying for all this week with your journerys through chemo!

I'M PRAYING THAT I WON'T HAVE TO TAKE A NAP THIS AFTERNOON, I HAVE TO WATCH THE EAGLES MAKE IT TO THE SUPERBOWL. E-A-G-L-E-S, GO EAGLES!

MIND, BODY AND SOUL.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

No chemo today. Here I am all pumped up with steroids, all psyched up for the ordeal, new bloodwork done with one stick, feeling ready,...then POW! Oncologist says: "We can't let you have chemo today. Hemoglobin and platelets too low." I tried to talk him into it by maybe getting a lower dose today, but he said no oncologist in the state would allow me to get chemo today. I had the option of getting a blood transfusion today, or do as he recommended and give it another week for my body to recover better. He seemed to think I was close enough to borderline that I would be okay for chemo by next Monday, so I passed on the transfusion and set up an appointment for next Monday. I cried while I waited to get my new appointment; I am so bummed. There is an added platelet-building drug he is looking into to perhaps add to my chemo cocktail from now on. I was so upset that I didn't catch the name of the platelet-building drug. I'll see if the oncology nurse can help jog my memory when I call tomorrow for my new CA-125 drawn today but not done by the time I had to spin around and leave so quickly. Any of you have any idea what it might be? (I want to do some research.) I sooooo wanted to have 4 chemo rounds into me by today. I really could cry again.

My GOOD news: The CT-scan I had Friday was still NED! So if my CA-125 continues to drop or even holds below 35, I will take some comfort in that. If I had OVARIAN cancer, my understanding is that they would cut off the chemo at that point anyway, considering me in remission, and saving my body in preparation for the next re-occurence. But I plan to HAVE no re-occurence and push on with my chemo/radiation regime as soon as my body can handle it again. I asked about intraperitoneal cell exfoliation (as it has always bothered me that my cancer was discovered when an exfoliated UPSC cell wandered down to my cervix and was picked up on my PAP, and found microscopically in the peritoneal 'wash' they did and the one lymph they removed during my surgery.) Dr. White said that even if UPSC cells were exfoliated from the polyp and were left behind during surgery, the chemo was killing them just as it does anywhere in the body. That was reassuring.

DEANNA: I asked about Cisplatin. Dr. White said Cisplatin causes more nausea, pain, and neuropathy that any of the other chemo drugs, and the carboplatin has largely already replaced it, ahead of this Clinical Trail that is now trying to formally compare them. You did the right thing passing on that trial. I asked about the Lynch Syndrome, but Dr. White said that with no family history of cancer, I should put those worries out of my mind completely.

Now I have to go climb into bed and pull the covers over my head and be sad, and try and get over this set-back disappointment. :(

deanna14
Posts: 733
Joined: Oct 2008

Linda, I am sorry you didn't get to have chemo today. I will pray that your body recovers by Monday and continues to produce RBC and platelets so you don't have any further postponement. Congratulations on the scan results, that is so encouraging! I am also happy that you do not have to worry about the Lynch Syndrome. The only reason I will even pursue it is for my nieces and nephews. I almost hesitate to do that as my brother worries that if they know that they are genetically predisposed to cancer, will insurance companies try to deny coverage? I'll just cross that bridge when I come to it.
Anyway, next week will be better for you. Rest, and eat lots of spinach and other good foods.

I had blood drawn and all systems are go for powerport placement and first chemo round tomorrow.

Hang in there. I'll keep you posted on my first day.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I called my oncology nurse and my CA-125 has dropped again: now 26.2! So that's good at least. It's my low hemoglobin counts (reds) that was the deciding factor in my not getting chemo today. Hemoglobin count was 9.6 and it has to be at least 10, and my chemo-onc seemed to think giving my body an extra week would do the trick. He gave me an option of getting a transfusion today, but advised against it. But I am so worried that if I wait a week for my counts to rise, and they DON'T, I will wish I had gone ahead and had that blood transfusion today. Anyway, the oncology nurse said that if my counts aren't adequate when I come in next Monday, they can get blood over in about 2 hours, and I can get my transfusion that same day, and possibly even chemo if time allows; otherwise chemo would be next Tuesday. So my maximum delay would be 8 days. The chemo-onc said 30 to 50% have a 1-week delay some time in their chemo rounds, for one reason or another.

My white counts are still good. My platelets dropped down to 49 (under 100 is usually the chemo cut-off), but my oncologist said he would still give me chemo even that low if my reds come up. They will be adding some new stuff to my chemo cocktail to help build my platelets and reds, and I am still waiting for a call-back to see what the names of those additional drugs are. I want to look them up and see what I'm getting into. Meanwhile, I have an extra week where I feel good, so I will be able to go out with my husband for his birthday tomorrow, and I have already scheduled a lunch Wednesday with 2 friends, and my son Eric is coming home Friday and bringing his new girlfriend and we will be going out with them. So a 'free week' isn't that awful I guess.

PS: Kris Ann, whose MOTHER has just finished treatment for Stage 4 UPSC, emailed me after reading a post I made on the Ovarian Cancer discussion board. I encouraged her to post here and hope she does.

Kris Ann
Posts: 26
Joined: Jan 2009

Here I am... This is the sight you wanted me on right? I'm trying really hard to be able to navigate this site...

And yes my mom was finished her treatments as of Oct. 3rd. Since then she has be looking and feeling better and better and put some weight back on. And her hair grew back with some curl to it.

But yes she was diagnosed with stage 4 pap serous/clear cell uterine cancer. She had the hysterectomy/debulking with 28 lymphnodes taken out as well as her omentum (fat pad) etc. The cancer went to her cervix, 1 fallopian tube, omentum, a small peice on her intestine, and 1 lymphnode out of the 28. Her washings came back negative. So anyways her Drs. had their work cut out for them with her. Plus my mom was completely terrified thru most of this ordeal. She is getting better mentally now..

This has been an eye opener to say the least.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Welcome to our site, my best wishes to your mom. I hope we can help her. ( and you!) How old is your mom? Does she read our posts too? What a kick in the you had today Linda. "This too shall pass." A phrase that kept me going through the set backs!! It is not like we have enough on our plates with normal chemo, but then to go and have to be turned down. Let's hope it is only a week. Is this something nuelasta would help for the last sessions? Teresa how is your emotional state after the fall out? Sorry about the Eagles Marge. Deanna........tomorrow you have my prayers too.

deanna14
Posts: 733
Joined: Oct 2008

Welcome, I think we have lots of love and support here! God's blessing to you and your mother. I am happy to hear that she is looking and feeling better. It's wonderful to talk to other ladies in the various stages of this fight.

Linda, even though you didn't get your treatment today, you got some great news. And you get a week's vacation. You'll go back next week stronger and ready to fight. You must be feeling a little run down with counts like that. Take good care of yourself.

Peggy, thanks for the prayers. I'm feeling really good about it under the circumstances. I'm ready to get going on these treatments. Looking forward to May... when I plan to still be NED and finished with treatment!

Marge, I hope you are feeling okay post treatment. Did you get to watch the game? Sorry they didn't win.

Teresa, I will soon be right behind you with the hair loss. Since it has to be, I'm going to try to have fun with hats and scarves. I will pick up my wig on Monday and then go to the Look Good, Feel Better seminar. I'm looking forward to that.

Hugs of strength to all.

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Hampster Days are here again; the SKYS above are clear again; let us sing a song of CHEER again; Hampster Days are here again! (SING IT, GIRLS!!)

Just thought I'd take down the photo I had up of my rose arbor in the snow (a view from my back porch) and post my AFTER photo from the 'Look Good Feel Better' workshop. They drew on those eyebrows and liner. and the makeup is all new. I try to copy it, but the eyebrows I mess up half the time. That's my wig, worn just 5 times so far, more a 'special occasion' look. They taught me to tie scarves into turbans,....soooo comfortable but nothing I would ever leave the house wearing. My husband calls it 'Taliban Head'. This is too much the 'sticks' of Pennsylvania for such an exotic look, but a scarf turban is even more comfy than a hat for me. If I get a 'Taliban Head' photo made, I'll post it, for a giggle.

Today my face is bright red and round: steroid face for nothing, since I couldn't get my chemo after being pumped full of steroids. Seems to make the redness and swelling even worse when you don't need them. And I was awake all night, but made myself lay there and rest from 11 to 4, and then got up cause I couldn't stand it anymore. I researched all the platelet-building drugs and hemoglobin-drugs, and I sure hope I don't have to take them! They can cause life-threatening blood clots, and they cause bone pain. I'll do it is I have to, but I hope this extra week will do the trick, and will get a blood transfusion before I take any of the drugs and maybe that will be enough if this week off doesn't do the trick.

Thinking of Deanna on her 1st chemo day. It's exciting to get it underway, but I know I still got weepy and scared when I walked through the door the 1st day. It still affects me that way as I walk up to the door, then I get in the chemo wing, and I'm fine and it's like an adventure, almost. It's funny; I cry a tiny bit as I walk in to get my chemo, but cried harder when they said I couldn't have it. Just a cry baby hampster I guess!

Kris Ann
Posts: 26
Joined: Jan 2009

Hi again ladies!

So nice to be meeting you and hearing your stories. Its great to finally have the support of others who have that same type of rare cancer. I have a couple questions..

Deanna, did you say cancer ran in your family? I see that you are pretty young for this.. When I go with my mother to Dana Farber I have asked on a couple of occasions if this was genetic. At first the answer was no but then a radiologist said possibley. My mother's parents are both healthy and pushing 90. Her siblings are fine too. I keep trying to figure out why she ended up having this particular type of cancer. I just like to know for my own future. I am 37 with 2 little girls. I see you have a child from your picture. How are you feeling with the chemo etc?

And Linda, what does NED stand for? You mentioned it when you talked about your ct scan.. does that mean it came back negative?

Thanks for talking with me!! All of you! Kris Ann

Kris Ann
Posts: 26
Joined: Jan 2009

Me again.

I was just reading more of your stories in depth. I just wanted to add that my mother had 35 treatments of whole abdominal radiation. She did make it thru. She did have a week when she needed a blood transfusion and some time off but then she got right back to it and finished it out. The most major problem was diarhea. Week 3 and 4 were the worst. She had lots of stomach cramps but they gave her an xray to make sure her intestines were intact.. and they were fine. When she was finished with the radiation all the doctors and nurses threw confetti at her and gave her a little diploma for completing it. After that she went on to have her 4 brachies..

As of now she is back to work full time. She hasn't had a ct scan in a while so I'm assuming that will be coming up fairly soon. Her CA-125 was a 17 as of 3 weeks ago. But that number was never very high to begin with.. and she was a stage 4.

I'd be happy to answer anyone who wants to chat with me. My mother has always been my other half. She is my number 1 chum.. always was and always will be. Therefore her well being is huge concern for me. But I must say that I really think she is fine right now. The way I'm looking at it is if it happens to come back we'll deal with it. Kinda like a chronic thing. When I look at the big picture of life so many people have their challenges healthwise and other ways.. we will just work with it. It will be okay!!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

NED, or No Evidence of Disease, is what it says on your CT-scan results when they can't find any cancer anywhere. NED is the BEST they give us. 'CURED" is not in the oncology vocabulary apparently. It's NED and REMISSION. But we'll take a NED for CT-results every time and be happy! The goal for our cancer is a NED CT-scan and a CA-125 that gets low and stays low for every 3 month check up forever. We 'UPSC Sisters' still in treatment are all planning to be "NED Sisters" with Peggy and Marge by the end of the 2009!! Your mother is a 'NED Sister' and I pray she stays in that happy group forever.

It doesn't sound like you need to worry about genetic tendency towards cancer. Lynch Syndrome is a genetic disposition for UPSC and rectal cancer, but if you have no recent and multiple incidences of these types of cancers in your family, try not to worry about it as it is unlikely. There is no rhyme or reason for UPSC striking someone; it's just bad luck and totally random. More black women get it than Causasian; weight doesn't seem a factor; lifestyle doesn't seem a factor. It's like lightning striking: rare and random.

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Welcome Kris Ann. Sorry to hear your mom is in this boat with the rest of us, but happy you found this site. It does feel better to know your not alone in this.
Deanna, hope your 1st chemo went well for you. On my 1st round as soon as I got to the check-in counter I started crying and kept it up for about an hour.(I mean big tears, I was a mess) They gave me Lorazapam and Benadryl and I slept for 4 hours and was still groggy when I got home. Anyway your 1st round is over with and I'm glad for you.
Linda, sorry to hear about your week delay. My sister-in-law said that happened to her daughter last year when she was going through chemo. But I know how you feel, I just want this all over with too.Congratulations on your CT scan!!!!. I went to a Look Good... Feel Better last week. I don't want to sound like a complainer, but I'm sure it wasn't as nice as the one you went to. Plus the woman sitting across from me had a bad cold.She said she asked and they told her it would be alright if she attended. I was not happy about that.
Marge, hope your doing well after your chemo. Sorry about the Eagles. I had my head shaved today. Couldn't take it anymore, there's hair all over the place. I was like a shedding shaggy dog. Thought I would cry when she started shaving, but was surprised I didn't, think I was just relieved to get it over with.
Peggy, your moral support is so wonderful. Makes me feel that "I WILL" get through this...

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Tried to edit my comment on the Look Good... Feel Better but for some reason the edit is not working. I re read what I wrote and felt bad . The girl was really very nice and gave us alot of useful information at the program. And I got alot of great make-up. It really is a wonderful thing that they do just for us. Think I was more upset with the woman with the cold. I didn't get sick so guess I should just get over it.....

Beav's picture
Beav
Posts: 2
Joined: Jan 2009

Hi,

I just found this site . I also have UPSC. I was diagnosed in April 2008. I am a 62 year old American married to an Aussie and living in Oz for almost three years.Had hist. and staging in May. I had one node involvment so I was Stage IIIC.I had a terrible post-op. Had many complications including a blood clot in the lung, partial small bowl obstruction, an absess in the abdomin, break down of the surgery insision. So my treatment had to be delayed some what.Just before I started Brachy theropy,I had a recurrence in the vaginal dome.Then I had 5 weeks of external radiation and I have just finished my last of six chemo sessions consisting of Cyclophosphamide/Carboplatin. I thought I would be dancing with Ned, but a resent chest CT found some very small Mets to lungs.yuk!, how lucky am I? So now I am recoving from my last Chemo and will see my Medical Oncologist to see if I am in for more chemo now, chemo after a break or observation. Looking forward to hearing from my sisters in this horrible fight we are in. HUGS to all!

deanna14
Posts: 733
Joined: Oct 2008

I am sorry that you are going through this, but happy to meet you. I'm glad you found our thread. I was diagnosed with endometrial ca in July 2008 from a D&C. In September I had a total abdominal hysterectomy where they found mets to one pelvic lymph node. Pathology comfirmed mixed endometrial ca with papillary serous ca. I finished 25 external and 3 internal brachy treatments in December and had my first chemo yesterday. Carboplatin and Taxol. So far, it hasn't been too bad. I had a port placed and then chemo. I am having the facial flushing and have been taking some benadryl and having a little trouble sitting down without falling asleep. I guess my body must need it. I am having a CT scan today, my last one in October NED and CA 125 was 11 in September and 9.9 lthis month.
I am sorry that you are battling reoccurance. Fight, fight, fight! That is a beautiful view in your picturew. I will be here for you, holding your hand from a distance and I know the other ladies on this thread will feel the same. I will pray for you you. Hang in there.
God Bless you!

Kris Ann
Posts: 26
Joined: Jan 2009

I was just curious if anyone on this site considered a clinical trial.. my mother qualified for one which instead of radiation she could have had a chemo called Avastin for 1 year every three weeks. I guess the actual infusion would have been a 1/2 hour versus the long chemos she had in the past. She opted to have the radiation instead so that she could get the treatment done and over with. But I was just wondering if anyone ever went that route instead.

Thanks, kris ann

Kris Ann
Posts: 26
Joined: Jan 2009

Hi Beav,
Glad to meet you even over the circumstances. I joined this site because my mom who is also 62 was diagnosed in March of 2008. May I ask what or if you had any symptoms? My mother started to get some vaginal discharge i'd say a year or two before.. none of us thought anything of it..just thought it was incontinence from having babies. But then is Jan. of 2008 she had a bit of spotting.. they thought it was a uti. which she was treated for but then the spotting came back in Feb. She called her obgyn and had the biopsy and we found out in March.. After surgery she was labeled as stage 4. She had 4 rounds of chemo, 35 whole abdominal radiation treatments then 4 brachies. She got thru all of them..not without a few snags of course. She also lost a ton of weight. But now I'm happy to say she is looking great. Her hair is back and curly, she put on some lbs. and is back at work full time. She eats well and is back drinking her wine.

Of course she will be getting a ct scan soon to check everything... so I'll feel more at ease when she gets the NED.. but if there is something spotted I am trying to mentally prepare to push her thru another treatment if needed. They never took her port out. she has had it for almost a year.. so we'll see what happens next. Positive thoughts!!

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Beav very exciting to meet you... how we would all pray that it would be for other reasons to meet each other, but here we are. So sorry to hear about your DX and your set backs. I wish you the best for your next run at recovery and NED. I have been NED since my surgery in Oct 06, (Stage 1C) had chemo and both radiations. Blood clots and lots or neuropathy. Needless to say it is all worth it.... if as you say can 'dance with NED.!' I am due to scan (every 3 mo.) at the end of the month. I would like to be brave enough to call my Dr and set my scan at 6 months this time to off set some of the radiation. But I am very scared of recurrence so I do not know which theory will win! So glad you are through your first session and back up and running ( or resting!) Deanna. Keep up the fight all of you .... as I have said before this is the biggest fight of and for our lives.........give it H***. (and a prayer!!)

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I feel like I came late for a party, when I saw all the new post messages in my In-Box this morning! Warmest welcome, Beav, to our UPSC Sisterhood, a little club we all wish we weren't a part of, and yet a community that provides a lot of genuine caring and support. I don't know how I would get through this without this outlet and theses wonderful women. So sorry about the re-occurance; we all live in terror of that and yet all try to prepare ourselves mentally for the possibility. Your participation here will add that new insight and experience to our collective knowledge, and hopefully make the possibility not so scary for the rest of us as we hold your hand through this next leg of your journey. When you have time, you may want to read through this long long Discussion Board thread from the beginning, like an interesting book written just for you. It may take you a few days, but you will know us all so well after that exercise, and know so much more about UPSC and how we can help you by taking your questions to our own Oncologists for extra opinions and options. PLEASE STAY ACTIVE WITH US! ((((Beav))))

DEANNA: First chemo day! Sounds like you did okay. I wish I got that sleepy reaction instead of my hampster days of sleeplessness from the steroids like I get. Were you weepy or did it seem like an adventure? Did you meet some chemo buddies, or did they keep you too busy to chit-chat? GREAT CA-125!!! So happy about that! Beav has Stage IIIc, just like you and me, so I know her re-occurance is as scary to you as it is to me. Reach out to me if you need me, girl. Your body is so strong and you have been able to stay right on schedule with your treatments, and that is why your prognosis has to be VERY good, as you haven't been plagued with delays that allow the cancer to get its second wind. I am ready to do whatever it takes to get back into treatment on Monday for that very reason. (((Deanna))))

Beav's picture
Beav
Posts: 2
Joined: Jan 2009

It is so nice to be here with others in the same circumstances.It is so hard to find sites for our kind of cancer.I know how scared I was when I learned about UPSC. I now how scary it really is.Thanks for being here.

Kris Ann to answer your question. My only symptom was very light spotting.Never had pain or discomfort. Just goes to show how sneaky this disease can be.

Living in another country, it will be interesting to see how the treatments differ. I already see that I have received a different combination of chemo drugs then most of you. I really wish I could be home for treatments, but it's just not possible.We do have free medical coverage here which has been good. However, I am not yet a permenant resident. Have just applied for my permenant spouse visa.I had to reveal by cancer on the application. I am very concerned about the outcome. So worried that I may not meet the medical requirements now.My husband says no-way will they not let me stay. I'm not that optmistic.Just something else to worry about.

Linda (I'm also Lynda, but to keep it easy I'll just use Beav) I have read just about of the tread and have been inspired. It takes do much to fight this monster. I am in awe of all our sisters. Keep up the fight and giant HUGS to all. My prayers are wil all of you.

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Hello, I found your group today and thought it would be helpful to check in. Hard to know where to begin. But I'll start with something I think you'll want to hear- at least I wish someone could have shared this with me when I first found out about my cancer. I was diagnosed with stage 3C UPSC over a year ago. I completed my surgery, chemo and radiation treatments last March. So it will be one full year- four lovely seasons of being cancer free for me in March. I'm looking forward to my one year celebration because I earned it. Since, I'm a little further ahead than the rest of this little group ( I think), I wanted to write- and let you know that I am doing well and that I shared so many of your experiences- both physical and emotional.

I know I'm not over this battle, I still get frightened, but I am moving on with my life and I'm having fun. I've learned many lessons- most importantly to accept help when it's offered. Give yourself permission to accept it. Right now my biggest issue is still fatigue -it gets better all the time but is not what I remember it being. I exccercise regularly -need tons of sleep, no longer have neuropathy and have gained back the weight I lost during my treatment. The only other physical issue that stays with me right now, is that over the course of my treatment my osteopenia turned into severe osteoporosis- I'm not happy about it, but I'm dealing with it. My CA 125 was 15 last month. I don't know if I 'll ever really feel safe from cancer world but it is easier to look ahead. I see my docs every 3 months. I sure do celebrate each day though- and find myself saying lots of corny phrases like, "Each day is a gift." Coming in at this point in the discussion, I'll just say for now that the protocol my hospital used followed Dr. Schwartz at Yale pretty closely. If anyone is having issues with nausea from the chemo I highly recommend talking to your doctors about Zofran. It is expensive, but when I didn't use it I ended up in the ER from dehydration, tremendous dizziness and head pain. After that episode I took Zofran and it really helped. You might also want to look into vitamin B6 to prevent future neuropathy- it might help. I hated the steroid reaction. Ativan helped a little with that - I was fortunate to find an amazing massage therapist and she got me through some really tough days- . I hope my experience can help the group a little- reading yours has helped me put perspective on mine- the treatments do end-life comes back- stay strong. Barb

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Congratulations on getting through your treatments and being on the 'No Evidence of Disease' side of this journey, Barb, and WELCOME here. Of the 'UPSC Sisters' that posts here regularly, Peggy, has been out of treatment and NED 2 years now, and a couple of the UPSC Sisters that post here recently finished up treatment and are NED. Others of us are still in treatment. We had a UPSC Sister pop in once that was 5 years NED, which was so wonderful to hear, but she hasn't stopped back in and I imagine that she has gone on with her healthy life and rarely looks back. (Is that possible?? To not look back every day?)

Did you have your radiation sandwiched into the middle of your chemo rounds? We are all fascinated with the various different treatment regimes everyone gets, as there doesn't seem to be a consistent treatment for UPSC that all oncologists believe in. My oncology team believes you need all your chemo as fast as you can get it, with radiation tagged on at the end. Marge had her radiation concurrent with her chemo; and Deanna had hers first, Peggy had hers 'sandwiched'. etc. Please share, if you would, about your surgery and treatment regime. And thanks again so much for posting!!

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Thank you for your warm welcome. Before I go any further I want to appologize and correct something I said in my first comment. It was not Zofran that helped me, but Emend- it's not always recommended because it is expensive but it really helped me with my chemo and recently helped my mom during her chemo treatment for lung cancer. I've never participated in a thread like this- and need to be more careful about any medical info I share. As for my history- I had a total hysterectomy, oophorectomy, and had 39 lymph nodes removed-my doctor said it was a hospital record. I had extensive lymph involvement and metastasis in both ovaries. An infection after the operation held my chemo treatment up a few weeks- it was very hard to wait. I was so anxious to get fighting.MY treatment sounds similarly aggressive to many of you gals. It began with 4 cycles of carboplatin/Taxol and then I had 5 weeks of abdominal and periaortal radiation. I was supposed to have 3 vaginal treatments but my radiologist stopped after the first due to his concern that there was a possibility of bowel damage. I had such mixed feelings upon hearing that- thrilled to be done and yet concerned that we hadn't done everything. I finished up last March. Doing well now- almost a year NED. I don't know if it's possible to get to a point when you don't look back everyday- but it would be great to find out.

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Wow... more of us again. This is so good for something so bad. Congrats on your NED! I am about a year ahead of you ?? (Nov 06 to March 07 in treatment) so I hope that gives you encouragement. I agree on your recommenation for emend. I had Taxol, Carboplactin, Aloxi, Dexomethasone, Compozine, Ativan, Emend, Benadryl, Zantac and Dexomemcjen. I think the aloxi dexomethasone was a betisec chemo IV. (thank God for Aloxi) I was scheduled for 6 chemo sessions but did 5 before blood clots ( 3 sessions chemo then external rad then 2 chemo then the brachy) Now I am an after effect mess, but I am alive and happy. Scared to death every 3 months to hear my results. I have spots in both lungs on my scans. But Drs are saying NED so far. I just got word today that my pap was negative and now the end of the month I scan and do CA125. What is your follow up and do you do CT or Pets ? We are all so hungry for what works to be NED!! God bless.... Hope you continue to stay on our thread and share with us!!

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Peggy (right?) I am glad you brought this up because I've been wondering about CAT/PET scans myself. Right now I see my oncologist every 3 months and noticed that I don't have another appointment till March which completely blew me away. I am so used to going to see doctors constantly. My radiologist sees me every 3 months as well. Not sure why so often, but I know he's very careful and I know he performed a lot more radiation than he usually does so I think he just checks in for any late after effects. I also checked in with my surgeon a year after the surgery partly to thank him, and partly to note the time passing. He told me to stop by as often as I want. I got the feeling he was very happy to see me- it hit me that we don't have time to give feedback (especially good feedback) to a lot of the people who are taking care of us- we are too overwhelmed physically and mentally so it isn't a priority. It was a gift to me as well as to him to have the chance to go back and let him see me healed. I haven't had a CAT scan since August and my doctors haven't recommended one for my next appointment in March. When I inquired about follow ups a while ago they told me they were comfortable with bloodwork and the CA125 as a good marker and physical examination every 3 months. If I had a specific physical complaint which I did once with stomach pain then they would schedule a CAT scan- which they did. I need to follow up on this question again. At the time, I got the feeling that they saw extra scans as unnecessary- maybe because I'd been through so much already, and it didn't provide that much information. I know the decision was not based on cost. When I am down I imagine that the decision may have something to do with catching my cancer so late but I'm still here and better everyday. I will ask about PET scans next appointment. I do know that PET scans are not effective for identifying all kinds of cancer- I need to look into it. Gotta go - phone call. Take care everyone!

barb55's picture
barb55
Posts: 91
Joined: Jan 2009

Peggy (right?) I am glad you brought this up because I've been wondering about CAT/PET scans myself. Right now I see my oncologist every 3 months and noticed that I don't have another appointment till March which completely blew me away. I am so used to going to see doctors constantly. My radiologist sees me every 3 months as well. Not sure why so often, but I know he's very careful and I know he performed a lot more radiation than he usually does so I think he just checks in for any late after effects. I also checked in with my surgeon a year after the surgery partly to thank him, and partly to note the time passing. He told me to stop by as often as I want. I got the feeling he was very happy to see me- it hit me that we don't have time to give feedback (especially good feedback) to a lot of the people who are taking care of us- we are too overwhelmed physically and mentally so it isn't a priority. It was a gift to me as well as to him to have the chance to go back and let him see me healed. I haven't had a CAT scan since August and my doctors haven't recommended one for my next appointment in March. When I inquired about follow ups a while ago they told me they were comfortable with bloodwork and the CA125 as a good marker and physical examination every 3 months. If I had a specific physical complaint which I did once with stomach pain then they would schedule a CAT scan- which they did. I need to follow up on this question again. At the time, I got the feeling that they saw extra scans as unnecessary- maybe because I'd been through so much already, and it didn't provide that much information. I know the decision was not based on cost. When I am down I imagine that the decision may have something to do with catching my cancer so late but I'm still here and better everyday. I will ask about PET scans next appointment. I do know that PET scans are not effective for identifying all kinds of cancer- I need to look into it. Gotta go - phone call. Take care everyone!

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Welcome to all our new comers. Support is a wonderful thing, holding each others hands in cyberspace!!!

I sit here tonight knowing that stopping the chemo treatment is the right thing to do. I am at peace with it. I am having more side effects then last time. Numb all over, not just my feet and hands but my face, tongue, legs. Having the off balance effect too but at least I haven't had the eye problems this time. My husband and daughter told me yesterday that for the first time through all of this I look sick. Silly, cancer free but I look like I have cancer.

I've lost all of my eyebrows, so tonight my husband shaved the little stubble on top of my head. This is the new beginning, the start of new life!!!!

Linda, I hope all goes well for you and you start your treatment back up on Monday but remember you need your strength also to help the fight. The discussion I had with the nurse was great. Talking about how chemo has become our security blanket, we feel safe on it. But we need to stay healthly too to fight the fight.

Deanna, hope you are doing well with your first treatment.

MIND, BODY AND SOUL.

Hugs.....

deanna14
Posts: 733
Joined: Oct 2008

I've had a long few days after my first chemo treatment. I had port put in on Tuesday with chemo to follow. No problems with this and probably slept better than I had in a while when I got home.
Wed. I went to have CT scan and they weren't able to access my port. Couldn't figure out why, so they put an IV in my right arm. When they did to big injection of the contrast, the IV infiltrated and contrast went into the tissue in my arm. They sent me to my follow up with radiation dr. and back to chemo for Neulasta injection, which I did. Then back to see the radiologist and when they measured my arm, it was getteing larger. So they sent me to the ER to be evaluated to see if I needede to see a plastic surgeon. We waited 5 1/2 hours in the waiting room, finally saw the ER doc who said my arm looked okay and to keep warm moist packs on it and if it got worse to come back.
Anyway, my arm is better (thank God)! I had to go back to radiology today to have a port injection done. They think that the port is fine, that it is deep under the tissue. I think that was a nice way of saying I have a lot of tissue in that area! lol. Hopefully it will work for 5 more chemo treatments.
I haven't had a lot of trouble, I just been very sleepy and achy. So I will give in and let my body rest for a few days. Then I'll have to get moving!
Marge, I'm happy for you that you have found peace in you decision to stop with this treatment. I pray that you will remain NED forever.
Linda, I pray that you will be strong enough and healthy enough to have your chemo on Monday.
I am going to continue snoozing this chemo off. I think by tomorrow I will be feeling much better.
Hugs to all,
Deanna

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I tried replying to Deanna's post twice over the weekend, but mid-post I got booted out, probably because I had too many other things open on my desktop. (I was trying to make sure the info I was sharing was correct.) I don't want Deanna to think I wasn't concerned about how she's doing and about that swollen arm. That really sounds like the CT-tech went right through your vein, you poor thing. And, Marge, please let us know if that facial numbness went away yet; that doesn't sound like much fun either!

I have been stressing that I didn't get a port, now that I've started to have more complicated chemos. With my platelets this low, I don't think they'd take the chance of inserting a port now. Now instead of the usual 2-sticks-per-chemo (blood work stick, then chemo IV); beside the CT-scan stick and bloodwork stick I had last week, tomorrow I may have to have a bloodwork stick, transfusion stick, 2nd bloodwork stick, and then finally chemo IV. That's a lot of needles for veins the CT-tech already said were showing a lot of scar tissue. Oh, well, one day at a time. I'm really worried about tomorrow and can't wait until I am through with whatever it takes to get Round 4 of my chemo into me. I'll post a report as soon as I feel up to it, but tomorrow will be a LOOOOONG day if I have to get a transfusion before my chemo.

The info I wanted to post is a new disgnostic procedure that is really what we should ALL be fighting to get if any of us has to have any further surgery for cancer re-occurence (God Forbid!!). This new technique involves taking the LIVE tumor cells harvested from the surgery and TESTING them with various chemo drugs to see which chemo drugs work best SPECIFICALLY for your INDIVIDUAL cancer! That way they already know BEFORE you start chemo exactly what drugs are most apt to be effective in killing your specific uniquely individual cancer. Isn't that amazing?!

The reason why this is so important to all of us is something that Peggy emailed to me from a very complicated medical report about endometrial adenocarcinomas (that's us, right?). It said: "In the serous papillary and clear cell category, EGFR positivity decreased survival from 86 to 27%. EGFR strongly correlates with tumor metastasis and patient survival in endometrial cancer. Altered expression of this oncoprotein may serve as a guide to prognosis and treatment in these patients." and "Seventy-seven percent of patients with metastatic disease were EGFR-positive versus 36% positivity in patients with no evidence of metastases."

This scary EGFR "epidermal growth factor receptor" is a protein on the cancer cell that causes it to reproduce and grow at a CRAZY-fast rate, and unless someone tests the live tumor cells with the chemo drugs that are so effective on EGFR, they don't know who has it and who doesn't. That's why it's so deadly, because EGFR goes untreated during chemo even though there are several very effective chemo drugs being used for other cancers that do a really effective job of suppressing EGFR, and that give the taxol/platin chemo drugs time to kill the cancer cells with EGFR before they reproduce too quickly to be dealt with. I'm not explaining it as well as I should, but if you are interested, you can put "EGFR" in the SEARCH box at the top of this page and there has been a LOT of discussion about this on other Discussion Boards here, and a lot of information about the various drugs that have worked so well to address this for people with other cancers. I know I would be afraid to learn that my survival rate had dropped from 86% to 27%, but I would be glad to know that I could still save myself by taking the newer EGFR-suppressing drugs. And that's why knowledge is power in this battle. I don't know that there is any other way to test for it except with live tumor cancer cells at the time of surgery, which is why it isn't commonly done, I'm guessing. But it seems important for women with UPSC to know, since there are drugs that really negate the power of it, and if our cancer cells have this EGFR mutation, we want those drugs!

deanna14
Posts: 733
Joined: Oct 2008

Linda,
They have done some genetic testing on the tumor tissue that they removed from me at the time of surgery. I was of the understanding that this tissue is stored for a period of time in the event that further genetic testing is deemed necessary when evaluated by the genetic counselor. I am going to check into this and I think that we all should. It has not been all that long since you and Marge had your surgeries either. I am wondering if it common practice to store the tissue or if that was done in my case due to the concern of Lynch Syndrome. Or perhaps I am mistaken and the tissue was not kept, either way, it is worth asking about.
Thanks for that excellent information. I am of the opinion that this testing should be routinely done when one is found to have cancer! That is huge for battling particularly our aggressive cell type!
By the way, my arm is bruised, but back to normal in terms of size. It was very swollen. I had a port injection done under flouroscopy on Friday and the port worked fine. They had to use a longer needle as I am blessed with plenty of tissue in that area. I am praying that it will work for my next chemo on the 9th.
I had a couple of rough days with aching and being very tired, but am feeling much better now. I started taking the Compazine they prescribed on the evening of day 2 in anticipation of the Aloxi wearing off. I also took benadryl for a couple of days for the flushing as I have had a lot of hot flashes anyway. I think it helped to keep me relaxed and resting better.
Marge, I hope that this finds you feeling better. As always, you have been in my thoughts and prayers. Thank God that you are finished and can start anew and begin to increase your strength and build up your health!
Linda, I pray for peace for you to rest tonight and that you will be strong enough to receive your 4th chemo treatment tomorrow. Hopefully, your counts are back up and you won't need blood and your day will not be as long as you had anticipated.
I am going to the Look Good, Feel Better seminar tomorrow. I'm kind of excited about it. My SIL is going with me. It should be a fun day out for the girls!
God Bless all. Take care and be strong....

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I have to head out, but wanted to pull this added info for you (and print it out to discuss with my oncologist today!) This is from another post on this same website we are on, really good stuff!:

Findings presented at the 41st Annual Meeting of the European Society for Clinical Investigation in Uppsala, Sweden, April 18, 2007, concluded that "functional profiling" with cell culture assays is relevant for the study of both "conventional" and "targeted" anti-neoplastic drug agents (anti-tumor and anti-angiogenic activity of Iressa, Tarceva, Sutent, Nexavar, and Avastin in primary cultures of "fresh" human tumors).
Cell Culture Assays with "cell-death" endpoints can show disease-specific drug activity, are useful clinical and research tools for "conventional" and "targeted" drugs, and provide unique information complementary to that provided by "molecular" tests. There have been more than 25 peer-reviewed publications showing significant correlations between cell-death assay results and patient response and survival.

Many patients are treated not only with a "targeted" therapy drug like Tarceva, Avastin, or Iressa, but with a combination of chemotherapy drugs. Therefore, existing DNA or RNA sequences or expression of individual proteins often examine only one component of a much larger, interactive process. The oncologist might need to administer several chemotherapy drugs at varying doses because tumor cells express survival factors with a wide degree of individual cell variability.

There is a tactic of using biopsied cells to predict which cancer treatments will work best for the patient, by taking pieces of live "fresh" tumor tissue, applying different chemotherapy treatments to it, and examining the results to see which drug or combination of drugs does the best job killing the tumor cells. A cell culture assay test with "functional profiling," using a cell-death endpoint, can help see what treatments will not have the best opportunity of being successful (resistant) and identify drugs that have the best opportunity of being successful (sensitive).

"Functional profiling" measures the response of the tumor cells to drug exposure. Following this exposure, they measure both cell metabolism and cell morphology. The integrated effect of the drugs on the whole cell, resulting in a cellular response to the drug, measuring the interaction of the entire genome. No matter which genes are being affected, "functional profiling" is measuring them through the surrogate of measuring if the cell is alive or dead.
For example, the epidermal growth factor receptor (EGFR) is a protein on the surface of a cell. EGFR-inhibiting drugs certainly do target specific genes, but even knowing what genes the drugs target doesn't tell you the whole story. Both Iressa and Tarceva target EGFR protein-tyrosine kinases. But all the EGFR mutation or amplificaton studies can tell us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if Iressa is better or worse than Tarceva or other drugs which may target this. There are differences. The drugs have to get inside the cells in order to target anything. So, in different tumors, either Iressa or Tarceva might get in better or worse than the other. And the drugs may also be inactivated at different rates, also contributing to sensitivity versus resistance.

As an example of this testing, researchers have tested how well a pancreatic cancer patient can be treated successfully with a combination of drugs commonly used to fight lung, pancreatic, breast, and colorectal cancers. The pre-test can report prospectively to a physician specifically which chemotherapy agent would benefit a cancer patient. Drug sensitivity profiles differ significantly among cancer patients even when diagnosed with the same cancer.

The "functional profiling" technique makes the statistically significant association between prospectively reported test results and patient survival. It can correlate test results that are obtained in the lab and reported to physicians prior to patient treatment, with significantly longer or shorter overall patient survival depending upon whether the drug was found to be effective or ineffective at killing the patient's tumor cells in the laboratory.
This could help solve the problem of knowing which patients can tolerate costly new treatments and their harmful side effects. These "smart" drugs are a really exciting element of cancer medicine, but do not work for everyone, and a test to determine the efficacy of these drugs in a patient could be the first crucial step in personalizing treatment to the individual.

Author/Speaker/Performer :Larry Weisenthal, M.D., Ph.D.;
Contact information: phone: (714) 596-2100.
Link: http://weisenthal.org/Weisenthal_ESCIa.pdf Source : Eur J Clin Invest 37 (suppl. 1):60, 2007

deanna14
Posts: 733
Joined: Oct 2008

Good luck, I hope and pray you get your treatment today!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I was able to have my chemo today! It was conditionally approved, as long as I agreed to come back next Monday, have another blood test, and am prepared to have a blood transfusion unless my hemoglobin (red counts) miraculously go UP after the chemo instead of further DOWN, which is the expected result. But for today’s blood work, the extra week’s delay allowed my platelet count to triple to well within the safe range. My red count only went up from 9.6 to 9.7, ALMOST to the safe threshold number of 10, and good enough for him to make an exception, with the transfusion next week. All I have to do is be careful not to faint and I can’t drive all week. I just have to get up slowly from the couch or out of bed; keep my head above my heart when I bend over; and not take any long hot baths or showers. And I’ll hold the rail and stop when I go up and down steps if I feel whoosy. I’ll be fine. So I have 4 of my total scheduled 6 chemo rounds in me, and a plan for the getting the last 2. They had to make 3 tries before they could get the intravenous in me for the chemo, as my veins are getting all scarred and hard from the earlier chemo. Surely I have 2 more good veins left and won't have to get a port just for those 2, although the poor girl poking me with the needles said she wished I would! So I am fine and very happy tonight, glad to be one step closer to this ordeal being over.

I asked Dr. White about all the research I did, and he said that it will be many years before that type of testing is done in this country. He told me that he thought I should take a break from internet research. THAT isn't likely! And if I have any kind of recurrance that involves surgery, this WILL come up again, but next time with my gyn-onc surgeon. So don't be surprised if your oncologists aren't receptive to this idea initially.

It was like a reunion today, with 3 of my "every Monday" chemo buddies all in for treatments, and that always makes the time go by faster. Now I need to email my family and friends that I promised to report to. I am exhausted, but may not be able to sleep tonight again, and "hampster days are here AGAIN" (so soon!) with the steroids jazzing me up.

deanna14
Posts: 733
Joined: Oct 2008

I'm glad you got to have your chemo today. The transfusion won't be so bad. I will keep praying that your body will allow you to receive all of your treatments and that your veins will hold out.
You rest now and take especially good care of yourself. We'll cross the bridge of getting testing IF we come to it. I hope and pray that none of us will ever have to worry about these things again.
I went to Look Good Feel Better today. I took my SIL with me and we had a great time. Such a sweet group of ladies. Lots of free make up, advice and met the hairdresser that does wig trims and chemo cuts for free. I'm excited about that. She also makes herself available on a volunteer basis for make up help. Like learning to draw on eyebrows when they come out. It was a fun girls days out!
Every body take care.
Hugs around. Be Strong.
Deanna

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda, glad to hear you have four down and two to go. Now you need to get yourself some funny movies, a comfy blanket and rest up. I bearly got out of my jammies last week, took it real easy, the whoozie head is crazy. I'm feeling much better this week, still get a little off balance when I'm tired but the numbness in my face and everywhere but my feet is starting to go away. My husband is sick so I'm trying to avoid him as much as possible (so far so good). My DIL came over and showed me how to draw on eyebrows, not so hard except my eye hand coordination is going due to age. Question, does the inside of your nose really hurt? Mine is sooooooo dry it's painful. I sleep with a humidifier and that seems to help but sometimes it hurts so bad it brings tears to my eyes.

Deanna, glad you had a great time at the Look Good Feel Better. Pray you are holding up well with your first chemo treatment. I pray for everyone everyday.

MIND, BODY AND SOUL!

Hugs

deanna14
Posts: 733
Joined: Oct 2008

Marge, I have been having sores in my nose. I guess the combo of the cold dry weather and chemo. My doc told me to put a little antibiotic ointment in my nose a couple of times a day and it seems to be helping. I got a tube of the antibiotic with a topical pain killer in it.
Also, at the Look Good Feel Better, the beautician who put it on show us how she puts her eyebrows on. She went to one of the public beauty supply stores and bought and eyebrow brush, eyebrow powder and there are stencils you can buy. I haven't been to check it out yet, but she said they come in different sizes and shapes, so you can pick one that works for you. I think I am going to look for them, I'm not great with makeup so I think they will help. I am glad to hear that most of your side effects are starting to subside.
Linda, I hope you are feeling okay post chemo. Take care of yourself and stay warm. We have a lot of ice and it is really cold. I am just staying in...nadir starts today. I got some masks and hand sanitizer to keep around in case anyone visits with a bug. Everyone is being pretty conscientious so far.
Love and prayers to all!

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

This probably falls under the "too much information" category, and I apologize for such a gross topic of conversation. I guess taking all the steroids last week for the chemo I DID'NT get, and then following that up 6 days later with a pile of steroids for the postponed chemo,...plus the iron pills I'm taking for my low red counts,..got me so constipated that I was getting worried. I took a stool softener the first couple of nights, then a couple of Ducolax when that didn't work. Then, this morning, when I thought I would have to go in there with dynamite or a jack-hammer, I decided to treat myself to the humiliation of a self-inflicted enema, just to give myself some relief. UGH! GROSS! I have NEVER done that before and actually read a "how to give yourself an enema" tutorial online before I tried it. I hope this isn't going to plague me for the rest of my chemos. I enjoyed pretty normal eating, sleeping, and bowel function for the first 3 rounds of chemo. I'm careful to eat a lot of fiber and drink prune juice every day. Do any of you get constipated from your chemo? I know constipation can sometimes be a kind of internal neuropathy thing, but I really think this is related to my blood-count problems. They did a detailed blood analysis in preparation for my transfusion next Monday, and my sugar was sky-high, which I was told was a steroids side effect. I am going to see if I can get my bloodwork done the day BEFORE my remaining 2 chemo rounds, so that I won't be taking the 'night before / morning of' steroids unnecessarily if my chemo has to be delayed again. This doubling up of steroids is bad. Forgive me for sharing this gross tidbit.

About the nose sores, I had that a little when the nose hairs started falling out, but then it never re-occured. So hopefully it will quickly go away for you both. (Now, with no nose hairs, my nose drips when I go from inside to outside, or vice versa.) I use Mary Kay's moisturizer (the one that looks like pink Vaseline) around my eyes every night, and I would just smear some of that around my nostrils before bed and that really helped a lot. You may want to try Vaseline to keep the skin and membranes protected.

So glad the "Look Good/Feel Better" was fun! I'm getting pretty good at drawing on the eyebrows. The trick is to use a LIGHT eyebrow color (like for blonds) and put it on in small strokes. I run my finger along my brow-bone before I start, and feather in that top line first. Then I just thicken it up a little towards the center edges. My drawn-on eyebrows are thinner and lighter than my natural brows, but they don't look too fake. You really have to be GOOD to use a darker pencil, and I know my limitations.

I haven't been faint at all, even with these low red-counts, so far. It's only 2 days past chemo, and my counts may not have dropped as far as they will yet from this last round, so the faintness may still occur. But so far, so good. And Monday I'll get my transfusion to get me through next week safely.

Marge, I am so glad that numbness is going away. I was worried about that. Still some UPSC Sisters among the missing this week. I hope the others pop in and let us know they're doing okay. I notice I haven't been getting the automated emails that there are new posts. Anyone else not getting those? How do I turn them back on?

deanna14
Posts: 733
Joined: Oct 2008

I had to bump up the fiber intake and it is helping me with the constipation, but giving me what we refer to as "man-gas", long and loud. I remember my brother talking about the chemo gas, so it make be a combo of the chemo and the increased fiber intake.
I am having this odd tingling sensation in my lips and tongue. I woke up with a cold sore at the corner of my mouth the day after chemo and have never had one before. Now this fleeting moment of tingly lips and tongue? Does this ring a bell with anyone. I was just going to ask about it at next appt. I will be curious to see what my counts are after the first round of chemo. I think I look very pale and my gums and mucous membranes look very pale. Any suggestions besides liver on what I should be eating?
That class was really fun, it was so fun going through all of the free bees. I am going to find myself some of those eyebrow stencils b/c I am having difficulty with free handing the eye brows. I look like a clown, so my next trip to town, I am getting some stencils.
I never have gotten email notification of posts, but I would like to know how to turn it on also, if you find out let me know.
Do any of you know anything about Cancer Treatment Centers of America?

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Beav and Barb, sorry you have UPSC, but happy to read you posts.For myself knowing I'm not alone and reading everyone's stories has given me comfort and made me feel stronger. It took me about a month to stop grieving over my loss of the great health I had for 61 years, but now I'm ready to fight.
Linda, picture of your grandchild is precious. Happy your 4th chemo is over. Hope the transfusion makes you feel alot better. My husband had to have one last year and he said he must have got some young blood because he felt great after the transfusion.I also have the constipation problem. I've been taking a tablespoon in the morning and in the evening of Phillips Milk of Magnesia, also a juice glass of Plum Sweet that you suggested. It usually works, but right after chemo it does seem to be at it's worse.
Deanna, did not like to hear about the tingling sensation on your lips and tongue. Marge had so much trouble with that. Hope it goes away soon.
Marge , hope all is going well for you. I got my copy of The Wellness Community: Guide to Fighting for Recovery from Cancer, by Harold Benjamin, that I ordered from Amazon. I love it, it really makes sense. I live about 40 miles from the Wellness Center in Santa Monica, Ca.
Had my 2nd chemo yesterday and feel fine. I had the dry nose thing, used Ayr, saline nasal mist, worked for me. Saw my Gyn/Onc the day before my chemo. My ca-125 dropped back down to 24 after going up to 115 after surgery, made me very happy. So far I have my blood tests and see my Gyn/Onc the day before chemo, after what happened to you Linda, I'm glad it's that way.She also has me get a blood test between chemo's. I asked her about the Kombutcha drink that I like, she said it should be okay, just not to put any other new thing into my diet, so if it did have a negative effect we would know where it came from. I asked her about having my teeth cleaned,she said if my blood counts were good I could bump my chemo up one day and have my teeth cleaned the day before chemo.Post are not showing up in my e-mail either.
You are all in my prayers... Teresa

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I'm glad to say I have not had the constipation problem, but the lips and tongue yes. My tongue is still feeling funny. Funny Deanna about the man gas, that I do have. It can be embarrasing!

Well, I went and saw the the oncol yesterday. They are setting me up for my CT scan and if everything is clean and looking good I'm on the three month schedule. And I don't like using the "if" like the doc said, so I told her I "would" see her in three months. She told me that would take at least six months to feel my normal self. We'll see about that, I plan on going dancing in the next few weeks.

Teresa, happy to hear your done with two and you CA-125 is down and I'm glad you got the book.

My prayers to all. MIND, BODY AND SOUL.

Hugs

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I haven't had much of the neuropathy-related side effects like that tingly mouth, but I did have it in my toes the first 2 rounds and then not again,.. so far. I was told to always call in anything related to neuropathy to my oncology nurse, as this should be carefully monitored and they may want to play with your chemo cocktail if it continues. Speaking of that, when they showed me the bag of carboplatin (a 'final review' policy they always go through before they hook you up where I go), I noticed that my carboplatin amount was different than the time before. The oncology nurse went to check and she said the amount of carboplatin I get has been different each time, based on my creatinine levels; I got as much as 760 mg (??) when my creatinine was high, and as little as 665 mg (??) when my creatinine level was lower like this time. I haven't looked it up to see if this is an attempt to ward off neuropathy symptoms, but I will see what I can find out. If it is related to neuropathy-management, it might be worth mentioning to your chemo-oncs.

I should be happy today that I was able to poop without any more heroics than a stool softener, 2 big glasses of PlumSweet, and a bowl of Fiber One. But I feel all weepy today. I was trying to do some work yesterday afternoon for a client, and I emailed off a '1st draft' proposal that had at least 6 typos in it. I have a great staff that can be doing this work, but I just want to still be RELEVANT, to still be more than just a SICK person 24/7. Anyway, I got copied on an email this morning from my client's Executive Director saying that the client's Board Chairman was unhappy with "Procopio's shoddy work" on the draft. And I just bawled. I have always been so good at what I do, and this was just an early starting-point draft to get the process underway, all highlighted with questions and ideas I had that I wanted us to go over. But I would never have made typos like I did, 6 months ago, or allowed them to go out! Why am I so off my game?? Chemo brain?? I don't know. Maybe it's just hard to care about picky details, hard to focus on anything else. I don't want my business to be a casualty of my cancer. Now I am crying. Sorry. Maybe a nap will help me pull myself together.

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Linda,

Thanks for the smile, I'm so glad you pooped without much trouble today. :)

I have notice that not only typos but I can be thinking one word and type another. I've learned to check, double check and triple check. So frustrating.

I found out that the color for uterine cancer is peach and I found a website with wristbands and ribbons. The link is: http://choosehope.com/commerce/catalogType.jsp?catId=48.

Peach, I like peach.

Hang in there. MIND, BODY AND SOUL.

Hugs

Teresa 61's picture
Teresa 61
Posts: 84
Joined: Dec 2008

Oh Linda, this UPSC we all have is pretty much a 24/7, and only those who walk in our shoes understand the struggle. Like Marge said, check, double check and triple check. Two more chemos, then your body and mind will start getting back to normal and your work will to. I could never do your job, with or without chemo. Take Care....

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

Here is a women who lost her mom to uterine cancer. Maybe we should all join up with her and make women just as aware of uterine cancer as breast cancer!

http://beatuterinecancer.com/Home_Page.php

deanna14
Posts: 733
Joined: Oct 2008

Marge, I am so glad that you said that. Someone started a movement to make women aware of breast cancer. Now the screening tools are better, it is found sooner and the survival rate has gone up. You don't hear much about uterine cancer, they have lousy screening.... and people (like me), believe that if they are getting their yearly gyn exam that they are okay. That is just not true! I never missed a yearly gyn exam with pap smear and look where it got me! I don't know how one gets it started, but there needs to be a push for better screening for uterine cancer. Any ideas? I want to hold a sign and scream out to the whole wide world!!!

Linda, I am so sorry you are having these troubles. I have noticed that I don't concentrate well right now and have not since the diagnosis was made. There is just too much on my mind.
I am normally quite good at typing and I type words backwards and stuff like I'm dyslexic or something. ?Chemo? Hang in there, like Theresa said 2 more chemos and you are done. You can do that and let it be okay to ask for help right now. It IS okay, it's only for now and then you will be back stronger than ever. I believe that this bump in the road is making us stronger, better, more passionate and compassionate women.

My lip and tonque tingling is like just for a fleeting moment and then it is gone, kinda gives me a creepy ewwwww feeling, then it's gone. Maybe it is not the chemo? My 3 month CT scan was good... thank you Lord.

God Bless you all. Hugs.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi Linda and all,

I have been reading your posts - boy there are alot! and very interesting and informative - but had to respond to this one immediately. Lucky for me I had the functional profiling done after surgery - I guess I thought this was a standard procedure. It showed the Taxol/Carboplatin to have the best response of all the combinations tested. Others included Carboplatin/Gemcitabine which was also responsive, carbo/docetaxel (still responsive), and doxorubicin (not responsive).

The staging process is also interesting to me. After surgery I was told I was stage IIIc - all lymph nodes tested from surgery were negative. But subsequent PET scan showed metastasis in several distant areas - which I assumed changed my stage to IV, though my doctor has never foramlly told me this. I thought he was trying not to scare me. I guess it's time I came out at asked him to explain.

Daisy

pjba11's picture
pjba11
Posts: 192
Joined: Nov 2008

Just spent nine days in hell... and it is not me but my husband in the hosp. We thought it was 'just' gall bladder. Ended up with 'hot super prancreatitus'. One night in a cardiac unit on one to one and then off to the the oncology floor for 6 nights and days because of a lack of beds. hard on me.. a mind game.) He was loaded into a chopper to be airlifted, then out again to a ground crew because of instability. We had to transfer 90 miles on ground. Wrong pain meds made him see little green men and all unknowns, meanwhile I have had a 9 day run of trying to stay ahead of him jumping in and out of bed with IVs and all 6'3 and 305 pounds of him unstable...........I am exhausted. Finally got him out of our small town hosp and into a hosp with pain managemant and now he is not a danger to either of us. They gave him the wrong mix of pain meds and was horrible abused. I have an attorney and will put all I have into this one. Horrible inhumane treatment and unprofessional ethics. Sorry to not be there for any of you.

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