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

deanna14

lindaprocopio said:

GOOD news: CT is NED!; BAD NEWS: No Chemo today!
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.

I'm so sorry!
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

deanna14 said:

I'm so sorry!
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.

Some good news since my earlier post
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

lindaprocopio said:

Some good news since my earlier post
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.

Here I am... This is the
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

Oh my goodness!!
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

pjba11 said:

Oh my goodness!!
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.

Welcome Kris Ann
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

deanna14 said:

Welcome Kris Ann
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.

Posted my 'Look Good Feel Better' AFTER photo...
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

deanna14 said:

Welcome Kris Ann
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.

Hi again ladies!
So nice
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

Kris Ann said:

Hi again ladies!
So nice
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

Me again.
I was just reading
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

Kris Ann said:

Hi again ladies!
So nice
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

NED = 'No Evidence of Disease'
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

lindaprocopio said:

NED = 'No Evidence of Disease'
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.

Welcome Kris Ann...
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...

Beav

UPSC
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

Beav said:

UPSC
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!

Welcome Beav!
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

deanna14 said:

Welcome Beav!
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!

I was just curious if anyone
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

Beav said:

UPSC
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!

Hi Beav,
Glad to meet you
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

Welcome Welcome
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

Welcome, Beav! & hugs to Deanna with 1st chemo over!
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

lindaprocopio said:

Welcome, Beav! & hugs to Deanna with 1st chemo over!
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))))

Thanks for all the warm welcomes!
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

Hello ladies
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

Welcome, Barb! Another UPSC Sister on the NED side!
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

lindaprocopio said:

Welcome, Barb! Another UPSC Sister on the NED side!
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!!

Hello again
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.