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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.

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

Thank you for Rae. Sorry your rabbit died. (wasn't there a joke about that in the 'old days'?) I would bet quite a bit on this symptom being thin lining from lack of estrogen. That always caused a bit of pink for me. My gyn is so worried for me on this too. Try to stay with non petro product with no estrogen if you need lubrications. That is what they tell me.... now if you find such a product let me know!!

deanna14
Posts: 734
Joined: Oct 2008

My doctor recommended Astroglide saying that it was "more natural." I haven't needed it since I am still restricted, so I can't give you any insight. I did buy some and there isn't any estrogen listed on the ingredient list???

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

D 14, Sounds like a product to try. Thanks !! I was also told that if we suspect any type of vaginal infection or change we should have our husbands use condoms until we heal. Less invasive infection. When we are in chemo we are so vulnerable. We are not supposed to eat fruit with peelings, handle things like potatoes or anything with soil/germs on it. It is very odd to think like that. Mouth sores are another big topic. Do you have specific concerns?

deanna14
Posts: 734
Joined: Oct 2008

First I was wondering if you were restriced from sex through the entire radiation period? If so, when did they allow you to resume? I would prefer using condoms over abstinence! Don't you need that to heal emotionally/mentally?
I'm just a little nervous about what to expect from chemo. You hear a lot of horror stories, see movies, etc. that make it sound/look as if you feel like dying. How did you feel? I've heard a little about the mouth sores, the doctor said I would lose my hair probably by the end of the first week of the first cycle from the Taxol. I'm not sure what other drugs they are going to use. How about the nausea/vomiting? I've read some blogs about people ending up back at the hospital for IV fluids from getting so dehydrated. Do you feel sick like staying in bed all the time?
I guess if you wouldn't mind sharing with me how you responded to the chemo. That would give me something to start digesting and preparing myself for. Do they use a lot of steriod, and do you get bloated up from them? Did you/do you have any peripheral neuropathy?

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

I am sitting here wondering how to answer your restriction questions. I can not remember them telling me I was restricted. (other than too darn sore from the surgery.) I know I waited a bit after the internal radiation. Just have to be a bit cautious. You may be surprised how most of this is not even going to change your daily routine. I can tell you that I only had one off day during my entire chemo. I wasn't sick, (thank God and my Dr for aloxi ) but I COULD NOT eat. Really hard to explain that unless you experience it. I think maybe God wanted me to have that experience to gain compassion for others if I can help them somehow. I was never dehydrated. I did 'push' myself during radiation and chemo to drink fluids. I also required that they give me extra fluids with my chemo drugs. I felt as long as they were doing an IV they may as well do it right! I learned REAL fast that when you are sitting in chemo.... start early for the rest room, it takes awhile to get your machine pushed in to the room with you and also takes awhile to get 'situated' once you are in there. As far as a port ... I think you are wise to go with a port if you have tough veins. I did not have a port. I had easy veins and even then some of the times they had to start over 3 times to get the IV working. I did sit and cry one whole session ( I didn't hurt in any way except emotionally).... Sometimes the drugs change your emotions quickly. I also had a very tough case of RLS that session. Most of the time I had friends along and we played cards. It is not difficult. I did not have a lot of nerve tingles or damage. Most of my damage is from the radiation . I have a herniated disc, and lots of aches and pains from just plain getting old!! Your Dr will write your prescription for your chemo according to your life style and your history. Your will have the drugs for your cancer, but the Dr decides how strong to order your nausea meds and your steroids. He may ask you how many hours you normally try to sleep, how many hours you work etc. They usually send your prescription to their pharmacy to custom mix this for you after you get there for each session. I had my first chemo the day after Thanksgiving and I lost my hair just before Christmas 2006. I went 16 months before I could style my hair with my hot rollers. Like I said in one of my earlier comments, I felt totally energized after chemo. The thing that knocked me down was the neulasta shot that I had to have 24 hours later. Not everyone reacts to that either. If you have questions please ask. Like I told Linda... I WILL WALK WITH YOU ON THIS JOURNEY AS FAR AND AS LONG AS YOU NEED ME . I have you in my prayers.

deanna14
Posts: 734
Joined: Oct 2008

It helps to hear a real live account of what it is like. I know all the drugs are different and everyone responds differently. I tend to have a pretty high tolerance for pain and such, but I am trying to mentally prepare myself. I do believe that prayer and attitude are everything.
Thank you again. It is good to know that not everyone gets deathly ill, that helps me face this. I tend to be an anxious sort when walking down a new path. I appreciate you and Linda walking along... it really is a comfort.
Deanna

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

I'll let Peggy or Marge respond on the Astroglide, as I am like you, "restricted" and sex is fast becoming a distant memory! HA!
I had my first consultation with my chemo oncologist today, and my chemo is starting MONDAY. The initial plan is 6 cycles of the carboplatinum/paciltaxill (sp???) we all get, once every 3 weeks. And I just got back from having my baseline CT-scan. So my stomach in gurgling from all of the contrast liquid I had. The nurse at the chemo place said everyine is different, but that I might start losing my hair as easly as 14 days, so my family may be coming for Thanksgiving to a BALD hostess! (the least of my worries, believe me!)

deanna14
Posts: 734
Joined: Oct 2008

Hey Linda,
How are you feeling about starting. I think it's best to jump right in, then you don't have to sit around waiting and wondering. I will be having 8 cycles and I know one is Taxol, but I don't know yet what the other is. He briefed me on 2 different regimens, one is 2 drugs, the other is 3. Did you get a port? or will they start an IV for each treatment. I requested a port because they have a terrible time starting IV's on me.
I will be thinking about you on Monday as you begin treatment. Take care of you!
They make some really cute hats, wraps and wigs. My insurance will pay for a wig up to $350.
Good luck on Monday, be strong, we are going to beat this!!!!!

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

Glad you have your scans and your consult behind you. Is there anything I can say to help you? My prayers go to you and your family.

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

Now, with my chemo scheduled for Monday at 9:15am, I get a call close to the end of the business day on a FRIDAY from the hospital, saying that my insurance needs 6 to 7 days to pre-certify my chemo costs, and would I rather WAIT until they get that Pre-Cert, or come in early and sign a paper saying I'll pay if the insurance doesn't??!!! What THE HECK is wrong with the insurance industry in this country???!! Haven't I got enough to worry about!? My husband is doing hurry-up phone calls to the hospital's billing department and trying to get an authorized person to actually come on the line at the insurance and rectify this. 45 minutes until close of business on a Friday!!! ARGH!!! More stress....

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

I know thatinsuarnce problems are more the norm than not but what a heartless business. Do they not understand when you are going through these things time is of the essence. You're right the one thing you don't need is the added stress. God we need something done with the health care system!!!

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

It wasn't bad at all. Went in a little teary eyed and nervous, more so than the surgery. They started me out with a steriod and benedryl and hour before chemo treatment. The one chemo takes three hours and the second takes twenty minutes. I had a nice little nap because of the benedryl. Be then end of the day I had the nurses laughing. I have different ring tones on my cell phone and my daughter had called me. Well, I have a big sense of humor and my daughters ring tone is of a drunken squirrel. It makes you laugh just hearing it.

The only side effects so far is that my head felt groggy. I had a hard time with getting some sentences out. I have a slight headache this morning but don't feel sick at all. They told me that because of the steriod medicine I might not be able to sleep but my head hit the pillow at 10:00 p.m. and I was out cold. Woke up at 3:00 a.m. with a night sweat and am having a hard time getting back to sleep. I ate an amazing dinner last night and had a snack before bed. Some people say the fourth day is the hardest, we'll see.

The doctor gave me steriod medicine to take for the next three days, it helps with appetite, and she also gave me nausea medicine if needed. Can't take that for three days said it won't work with the steriod medicine. They also gave me a prescription for a stronger nausea medicine, said it was expensive so don't fill it if I don't need it.

I will be thinking of you on Monday Linda and will be praying for all. Cyber Hugs!

I think I'm going to try and get more sleep now....

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

So glad you got through that one.... and it should get even easier. My chemo lasted 9 hours. Yours sounds much shorter and that is so much better!!! Don't you just love those night sweats!! My husband often checks my water bottle for ice from freezing solid in my arctic room. He moved across the hall to our spare bedroom for survival!!

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

You've been on my mind so much since your chemo. I so appreciate you posting how the 1st round went, knowing that I will be the one with that same IV in 2 days! Please check in when you feel up to it and keep us posted, and I will try to do the same. Chemo buddies. I admit to being nervous about it. I'll be glad to have my first round behind me. Just 5 more to go; we can do this Marge! ((((Marge)))))

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

Feeling a little nauseas today and tired. Hope this is my bad day. My chest is turning red too. Still not as bad as I expected!

Would it be wrong to find out where everyone is from. Like to know how far apart we live...

Hang in there and God Bless.

Marge

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

Sorry to hear your are not feeling well. What is going on with the red chest?? I have not heard of this. Chemo is only as good as your doctor writes your prescription. I would hope that once you tell them of how you feel they will customize it more. With all of the technology now chemo should be nausea free. I am from right in the middle of Mn. How far apart are we?

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

I'm in Central Pennsylvania. I'm posting my email address again, too, since I think we are the only 4 on this thread : lindapro@ptd.net

I have a website for my business where you can see a bunch of cute photos of my grandkids if you are curious: www.procopiofundraising.com

My grandkids (ages 6 & 7) slept over Friday night and tried on my new wig and asked me all about my cancer and chemo. They just stopped in at 6PM to give me a 'good luck' kiss before my chemo tomorrow morning. I'll be so glad when I get this first round behind me!

What could that red chest be about? Reaction to the steroids? I hope that eveyone is babying you, Marge, and that you are taking it easy. I'll try and check in tomorrow night and let you know how my 1st chemo went. Love and hugs to each of you, my UPSC sisters!

deanna14
Posts: 734
Joined: Oct 2008

Thank you for sharing your chemo experience, it makes me feel better just hearing you talk about it. I'm really nervous about it, don't even know for sure what the regime is going to be. I am sooo glad that you are doing well. Keep us posted. I will be praying for all of us!

I finished external rad tx #13 on Friday... halfway through. Yoo Hoo. So far tired with mild stomach/intestinal upset. Nothing I can't deal with.

Hang in there, stay strong. We are in this together.

Deanna

hope_floats
Posts: 5
Joined: Aug 2011

Hi Linda,

I've read your many posts and wanted to introduce myself in hopes that you might be able to help with answers to the many questions I have.

My sister has recently been diagnosed with UPSC and had a full hysterectomy done, and peritoneal tissue removed from the abdominal lining.

They removed 24 lymph nodes and everything tested negative, and this is wonderful news, however it is still this rare form of cancer and I have a lot of questions.

We are going to meet with her oncologist this week to discuss her chemotherapy treatments. I am a little confused as to why they still have to proceed with chemo. I know it's more than likely a preventive measure, but would just like to hear some of your stories or reasons why this may be the case.

She is a colon cancer survivor and was almost to her 5th year as a survivor when they discovered this cancer through a Pap smear as well.

Any insight would be greatly appreciated.

hope_floats

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

Do they not realize that this is a very aggressive condition? Even a day can matter. It is not like you are doing something elective. I had noticed some advocates on this site ..... maybe they have advise and have done this before. ?? Sorry for your more stress.

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

Just a thought... I ran into this with my brachy too. Since their phase 2 trial was so untried I went ahead with my brachy not knowing if I had coverage. They did cover it. NOW I HAVE SOME GOOD NEWS FOR ALL OF US. I need to follow up on this and get an actual article. BUT........... I think it was Ireland that a trial out on UPSC and they are certain that if women have a gyn/onc. doing the proper surgery our chances of longer survival DOUBLE. Anyone seen this on the sites??

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

It's not really the insurance company's fault; apparently the details of my chemo are still laying on the oncologist's desk, not yet sent over to the hospital's pre-authorization financial people. And without knowing the details, the insurance isn't going to Pre-Certify. So it's a matter of 'fast appointment / slow paper trail'. How much of a financial hit did you take with your cancer, Peggy, if I may ask? I already paid my crazy 'out of network' $10,500 deductible, and was hoping that would be the extent of my 2008 out-of-pocket hit. (In January, the deductible requirement kicks in again, but I am having my chemo 'in network' so my deductible will be $7,500 more for 2009.) I hate to agree to pay for my 1st chemo round. But I also am unwilling to wait a week to start chemo now that I have myself all mentally prepared for this.

On a more fun note, I made an appointment with a 'hair replacement' salon that specializes in cancer patients, and came back with a $250 wig and a couple really cute hats. I wasn't even going to get a wig, but then I thought there would be times when I won't want to look pitiful and may want my privacy. This hair really looks real. They thinned and styled it for me. I feel a little embarrassed to have fake hair on a stand in my bedroom now, but I do feel READY now for whatever's coming.

rainyjane10's picture
rainyjane10
Posts: 8
Joined: Jan 2009

Wow! After everything I went through with the hosital billing department and the doctors not filling out paper work like they should I'm not surprised at your hold up but I don't understand how the very people who know how important this insurance stuff is can be so lax and so indifferent. I wish I had known about this site a year ago when I was oing through all of this. At least I would have found solace in knowing I wasn't going through this crap alone. Keep strong!

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

I am so very glad you did the wig. I was so certain that my hair coming out was no biggy... but it hit me hard. I stood in the shower and pulled all of my hair out. I kept the shower running so I would not be able to tell the water from the tears. It is alos a hard day for your husband... even when they say it is fine.. it is still another hurdle. I had 2 very nice wigs that ran over $350.00 each, but I found I only liked one. I did wear both, but one not much. It was great to have a chance to try them on while I had my original hair. It was an easier color match, plus the stylist could see what I wanted. I still wear my wig if I am in a hurry or want a lazy hair day. When you go to chemo, ask for hats and scarves. They usually have an unlimited supply that volunteers sew for us. I got hit for over 1.5 million on my cancer. I pay prem. of over $700. month now since I am 'uninsurable. It is ridiculous.

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

I don't have $1.5 million, so they won't be getting that much from ME! They have to fix the insurance problems in this country. No matter HOW MUCH they raise my insurance rates, now that I have cancer, I will just have to pay it because no one else is going to cover my 'pre-existing condition'. I'm trapped into staying with my same insurance company no matter what, and I know that they will raise my rates crazy-high, hoping that I do cancel or can't pay and they can get away from my cancer bills. Because I am in business for myself, I have private insurance and am not a part of any kind of a group. I hope Obama can come through on his promises.

deanna14
Posts: 734
Joined: Oct 2008

Sorry to hear of your added stress Linda. I had a similar experience that day I had the hysterectomy. At the last minute, when I was in the holding room, they figured out that the insurance had denied coverage of the robotic hyst. I had already mentally prepared, physically prepared (nasty bowel prep that made me vomit!) and insurance wouldn't cover it! My surgery was over a week after the gyn/onc appointment where we scheduled the surgery. I cried like a baby, they wanted me to wait a week to see if insurance would chance their mind. I said, no way. I was NOT spending another week worrying and preparing. So, we did an open hyst. Longer recovery, but it all worked out. I know yours will also.
Anyway... Good luck tomorrow Linda. Marge, I hope you are doing okay. I am thinking and praying for all of you.
Deanna

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

I supposedly had one of the best gyn/oncol in our state, he made it very clear that there was no way that a properly staged surgery could be done unless it was open. A few days ago I saw the statistics on UPSC chances of survival doubled if we had the proper proceedures done during surgury. Insurance 'policy' sucks in many ways... but could be it blessed you there??!

deanna14
Posts: 734
Joined: Oct 2008

I truly believe it was a blessing that I didn't have the robotic surgery. I was diagnosed Stage I after the D&C. It was during the hyst that they found the serious papillary and mets to the lymph node making it Stage III. The original plan was total hyst with no follow up treatment. I do believe I was being watched over that day.

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

I am the same. We farm and have a business. We pay private insurance. I too face the fact that they 'say' they can not discriminate by pushing my prem. up, but now they increase it each time by large amounts. I had to pay $15 per visit, plus approx 20% of our 1.5 so we got hit hard. I was in 17 medical facilities in 2007.

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

About 10 percent of endometrial cancers are papillary serous adenocarcinomas, and 5 percent are clear cell adenocarcinomas. Clear cell adenocarcinoma is a very rare form of uterine cancer that appears in women who were exposed in utero to an estrogen drug known as diethylstilbestrol (DES). From 1938 to 1971, DES was prescribed to some pregnant women to prevent miscarriage. The female children of these women have an increased risk of a rare type of cervical, uterine, or vaginal cancer.

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

I had heard of this before. I knew my mother has a miscarriage 2 children before me and that I lost an older sister, so I asked my mother if she had ever taken this drug. She had not. I lost my mom to cancer in 1994. They just recently raised that number of UPSC from 5 to 10% because it is becoming more common. It would really be good to know why. I do not fit in any of the commmon reasons to have gotten this UPSC. Did any of you? My prayers are with You both Marge and Linda in these first chemo stages. This cancer is aggressive so do what you can to let the chemo work. Eat right and drink a lot. Rest if you need to. Listen to your body. This is a time when you have to be your own best friend. I hope that soon when any of us see UPS it on the side of a big brown delivery truck and it doesn't affect us!!

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

I don't fit into any of the UPSC-characterics. Women that get UPSC are often black women, in their 60's, with concurrent problems like diabetes. My oncologist also noted that UPSC is on the rise. I think it may just be better diagnosed now. It's so sneaky, without the heavy bleeding symtoms of the more common uterine cancers. Everyone seems to find out by surprise during testing for something else; maybe women are doing better at getting routine testing and 'just-to-be-sure' testing done. Or maybe it's environmental. My oncologist mentioned that he worries that the high cancer incidents in our region may be related to the 2 nuclear power plants nearby and the open coal mines.

Deanna, I looked into Da Vinci robotic surgery for my hysterectomy (Did you watch the video of them doing it on YouTube?) and was fascinated and thought that was what I wanted also. But the Gyn-onc I saw doesn't do robotic hysterectomies, and when I went to another facility to discuss that option, they needed to run a bunch more tests on me (uterus size, etc.) to see if I would be a candidate, and I didn't want to delay my surgery again. My Gyn-Onc has 27 years experience and is a firm believer in open staging surgery for aggressive cancers. He took out 25 lymph nodes to find the ONE lymph with microscopic cancer in it. If you read the posts on the Ovarian Cancer Discussion Boards here (worthwhile because that cancer is so similar to ours in its aggressiveness), it seems like the women with their cancer reoccuring in 15 or 20 months after their treatments are those that just had 7 or 8 lymph nodes removed and biopsied, with lymph node penetration not found during their hysterectomy. I think their surgeon probably didn't look at ENOUGH lymph nodes and missed the one that may have shown their cancer was on the move. Then, with their Stage 1 diagnosis, they just had radiation and no chemo, and BAM! It comes back. Reading those posts, I'd decided to argue for aggressive chemo and radiation even if I was Stage 1. My hysterectomy pathology diagnosed me as Stage 3C, so there was never a doubt that we'd go at this with everything my body could stand.

My chemo is at 9:15am. Think I should try again to sleep? My adreniline is already pumping with nervous anticipation. I slept 4 hours. That may have to do. I'm WIDE AWAKE!

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

I was born and raised in NJ (cancer alley). I moved in 1985 to NC because of this. I was afraid that my kids would get cancer. My in-laws live in the pine barrens and we watched for two years the government cleaning up a toxic waste dump. That was during the Jimmy Carter era. When Regean got into office he stop all funding to clean up the dumps in NJ.

Let me know how everything goes. Yesterday was rough but I feel better today. I got up and went to work for the first time in four weeks. Can't stand being in the house anymore.

I found some very peaceful music to listen to while in bed if I wake up in the night. It's american indian, flute and guitar. It is so soothing it helped me fall back to sleep and I got a really good night sleep last night.

God Bless and you are all in my prayers.

deanna14
Posts: 734
Joined: Oct 2008

I am glad to know you are feeling better today, Marge. I was just sitting here wondering how Linda is doing.
I'm off to take a nap, I'm feeling a little washed out today. I think I may have an upper respiratory bug.
Just wanted to let you all know you are in my thoughts.

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

I realize it may be the steroids and the other 'extras' in today's chemo cocktail, but right now, I feel good! Tired from my sleepless night of jitters last night, but otherwise fine. First they did blood work. Today's CA-125 was 95.5 which they will use as my baseline and disregard the 2 numbers from the other hospital. Then they called me in and did vitals. Them the chemo itself. I was there 6 hours, 3 hours for Taxil; 1/2 hour for the CarboPlatinum; and then a 5 minute saline line flush. I had saline the entire time also. I did my chemo on a big Barco-Lounger, with heat and massage you could turn on (fun!) and they had all kinds of snacks and Boost and coffee, tea, sodas. I spent over half of the time talking with a woman having chemo for breast cancer, and have made a new friend. When I am not so tired I'd like to share her story with you, but not tonight.

I made one big faux pas as a chemo newbie. When you are new to the chemo drugs, they monitor you right at your side the first 15 minutes in case you have a violent allergic reaction. When my 15 minutes were up, they took my blood pressure (which was fine) and then clipped a Call Button to my lounger and said to call if I needed them. About 15 minutes later, my IV-thingy (???) started beeping. I didn't know what that meant, so I hit the Call Button. It was DEAFENING! A SUPER LOUD repetitive blast that could be heard across the entire facility!! It was like CODE BLUE on TV. 6 medical professionals came flying to my side!! I thought any second someone would be coming at me with the defibulators paddles and shouting "CLEAR"! Apparently the Call Button was to alert them that I was having heart palpitations, trouble breathing, allergic reactions, something bad. If she told me that, I sure didn't take it in! (blush)

I hope that Marge and Deanna are feeling better tomorrow. And I hope that I don't wake up nasueated and achy. But ONE ROUND DOWN, 5 to go! Thanks for being here for me!

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

I can't quit laughing about your code blue. They did not tell me any of that. If I would have done that my husband would have needed the team for real!! Glad you met someone to talk to. We always had to do a private room so I only got to meet the nurses. Do you do neulasta tomorrow? I always enjoyed the meals they brought us when we were in chemo. I could get hot blankets, and recliners, but not the masssage etc!! Sounds like you had excellent care. I will be looking forward to hearing about your new friends' journey too. Keep the faith and stay well!!

deanna14
Posts: 734
Joined: Oct 2008

I'm so glad to hear your first treatment went well. It also sounds like you had a good laugh. I hope you are feeling alright today. As always, I'll be thinking of you all.

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

Someone on the Breast Cancer message board calls all this steroids-induced artificial energy after chemo "hampster days" and that seems to fit me. I woke up on my 'day after chemo' after just 5 hours of sleep still totally jazzed up.... no nausea, constipation or body aches yet, rammy to go-go-go. I put in 2 hours of work before going out to breakfast with my daughter-in-law (my 2nd breakfast of the day: classic voracious steroid appetite), went grocery shopping for yogurt and cancer-fighting food, did a mile on the ellipticle machine (my 1st workput of any kind since my surgery October 10th), ALL before LUNCH! My face is all rosy red and puffy today, but with make-up I just look sunburned and apple-cheeked. I keep expecting to crash when these steroids work their way through my system, but I'm still revved up. Feels so good! (drug-induced or not!)

The good news I neglected to post yesterday was that my CT-Scans came back clear and 'No Evidence of Disease' which may just mean this sneaky cancer is travelling microscopically, but good news is good news!

Another blessing to share: my insurance TODAY pre-certifed my chemo for 12 months and grandfathered in yesterday's treatment. Maybe they're not out to screw me as I feared.

I mentioned the new Breast Cancer survivor I chatted my way through chemo with. All the horror stories about chemo must come from the awful chemo that breast cancer requires: Abraxane. She told me that she couldn't even lift her head off the pillow, couldn't even make WORDS come out of her mouth when she took that poison. She was so traumatized by her chemo taking that drug that she had to have a sedative worked into her PacquiTaxil (sp?) she was getting yesterday and cried when they were plugging it into her port. We can be grateful that our cancer doesn't call for that horrible stuff. Somehow I thought chemo would be like that for me. Maybe it will be much worse later. But today I feel like I will be handling all this so much better than I thought I could.

MARGE: how was it to be back to work? I work from home, so can take a break whenever I want. How was it to go out to work? I thought of you all day.

DEANNA: How's the radiation now that you are deep into it? I worry more about the radiation than I do the chemo.

PEGGY: You are my rock! Keep those funny and inspirational emails coming!

My UPSC sisters: I love you guys! (Babbling is another of my steroid side effects; perhaps you noticed?? HA!!

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

I made it a half a day at work and came home. My head was starting to feel fuzzy and I started to feel weak. Today I woke up feeling fuzzy headed and weak. I'm thinking I'm still recovering from surgery too, it hasn't even been four weeks.

Tonight I sat on the floor and stretched and it felt good. I have low blood sugar problems so I'm fighting that a little too. Hope I have more energy tomorrow, going for my mamogram.

Stay charged up Linda!

Hugs to all...

deanna14
Posts: 734
Joined: Oct 2008

Don't worry about the radiation. The first week I had some mild nausea even though they told me no side effects for 2-3 weeks. I think it was mostly anxiety because since then I have had very few side effects. There have been a couple of days after my treatment that I have felt tired and I just took a nap in the afternoon. Today was day 15 of external treatments and did have some loose stools. Sorry that's normally kinda personally, but it's the nature of the radiation we are having. I took 2 imodium and haven't had any more trouble. I am trying to follow the recommendations they gave me for the low residue or low fiber diet. I think it really does make a difference. It's funny that you say you are more worried about rad. tx, I am more worried about chemo. Maybe it is just anxiety over the unknown and once you get there, it isn't as bad a you make it out to be in your mind. I sure do pray that you continue to feel as good as you have today. Congrats on the CT's coming back clean and the insurance getting it together.

Marge, I hope you get to feeling better. Hang in there girl!

Thanks to all 3 of you for being there to chat with, it means a lot to me.
Keep the faith...

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

I feel much better this morning. I bought some Ensure and drank two yesterday, I believe that helped and I made myself eat, eat, eat. I made broccoli cheese soup and my daughter made a wonderful dinner for me last night.

I will feel fabulous tomorrow, it's my 49th birthday and on the 24th it will be my 29th wedding anniversary. I must say one positive thing about this stupid cancer, it has brought my husband and I close again. He has been my rock, my love and my life. We were even dancing in the kitchen last night, can't remember the last time we have done that!

Deanna glad to hear everything is going well that the rad is not that bad. Your picture is great. The love of your life I see is a Marine, many thanks to him. (I'm an Army Mom).

Linda and Peggy hope you are doing well today. MIND, BODY AND SOUL we will all beat this together.

Hugs, Marge

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

49.......... it was a great era?? Now what? In my opinion it just gets better. We seem to apppreciate our family and the grandkids so much more. I am so glad you are doing good. Hugs back to you too. Enjoy YOUR day. Happy Birthday.

deanna14
Posts: 734
Joined: Oct 2008

Happy Birthday Marge! I hope you are feeling well and have a wonderful day.

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

I am sitting here crying for all of us!! Happy tears. We have had quite a journey... each of us. I pray each day many times that we can all be healed. I did not have this site when I was going through all that you 3 are. I feel very blessed to have all of you now. I sure wish we could find someone out there that has had this longer even than me. So very happy that no one is having any bad reactions. Heal in Jesus name you three.

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

I guess my 'hamster days' steroid high is over, because I slept 10 hours last night and woke up with something similar to what Marge described, a sort of fogginess. It's not bad, but I feel like if I crawled back under the covers, I just might go back to sleep again. (Not doing that!) I agree that we are all doing so much better than any of us probably dared to hope. There are surely some rough days ahead, but one day at a time is the way to go, and making the most of each good day. I wonder if we will continue to come here after our treatments are over??? I see 20-year survivors posting here on other boards, wanting to be here as a resource to those that come after them with their same cancers. I'd like to think we'll be like that, with this thread always 'flagged' for email alerts, ready to jump back in when those newly diagnosed with UPSC using the SEARCH box, find this thread. Even if any of us decide to close the door on this chapter of our life and never look back, think how great it will be for someone with UPSC to find this archived thread! I think of how alone I felt when I posted here initially, and no one responded at first. And then how wonderful it was, and still is, to find you 3. Even someone coming here later and finding our WORDS will have an important resource. But I like to think that we will still pop in, years from now, as long-time survivors, to comfort and advise the newbies.

And on a completely different note: anyone else attempting to make Thanksgiving dinner or entertain over Thanksgiving? I have my whole family coming in (16 people, several staying 3 or 4 days), and would love to think that I will be well enough to pull off the feast I traditionally prepare, but I have a back-up plan for others to make Thansgiving dinner for us all just in case I am in a low place in my chemo cycle. I am famous for my holiday dinners and love traditions and exactly duplicate all of my mother's and grandmother's recipes for cornbread filling and broccoli souffle, and homemade cresscent rolls. I know my "back-up plan" Thanksgiving won't have any of those dishes. Maybe I can just make those few things that bring back those Thanksgiving mornings of my childhood when I would get up really early with my mom and grandma (who lived with us in our house) and we'd chop vegetables to make the filling, and my mom would always let me cut one of the pumpkin pies to have a piece for breakfast. I love looking at their handwriting on the old recipe cards; I lost them both so long ago. Usually my grandkids sleep over the night before holidays so that they can do the same kind of things with me. Last year they made the rolls with me and rolled out the pie crusts, and Emily gathered little crabapples and dried seed heads and rose hips from my gardens and made tiny flower arrangements for each place setting. Wow! I'm so sentimental this morning! I'll be blubbering in my coffee soon! Sorry. Love you guys!

deanna14
Posts: 734
Joined: Oct 2008

I used to try hard not to cry, now I am actually learning to let it go when it comes. I never realized how cleansing a good cry could be and still not mean you are weak. So go ahead and blubber in your coffee. Those sound like amazing memories and I'm positive have and are going to make many of those same memories with your kids and grandkids. You might not feel up to it this year (and don't push too hard!), but you will have many, many years ahead to make memories. I know you have to believe that and I do too, we all do!!!
I'm glad you are still doing pretty okay with the side effects, despite the "foggy head." Hang in there, you guys have become my inspiration, I'm not nearly as afraid of the chemo as I was a week ago.
Marge, I'm glad you are having a great day. Yes, that is my Marine. He was in for almost 12 years. He planned to be a lifer and ended up with knee/back injuries. He is the love of my life and I would not have the courage to fight without him.
I am also glad you girls are here and I do hope that others can benefit from our correspondence.
Did any of you look into clinical trials? What do you think of them? I saw both of my docs today and the oncologist is offering me a clinical trial. I'm wish I would have written it down, because I don't know the name of the drug. If I go into the study, I could receive a third drug in addition to the Taxol and Carboplatin (?spelling). The drug works by weakening the membrane of the cancer cell, so that it can not survive. It can cause swelling and high blood pressure, but reportedly has shown positive results in our cancer type. It has been FDA approved for lung and some other cancers, but not uterine/endometrial. The trial is to help get FDA approval. So it is being used routinely, just not for uterine CAs. What are your thoughts? I will have more info after my chemo teaching which is the 3rd week of January.

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

This is the first I heard of this clinical trial. Please get the details for Marge and me. And be sure and run the extra drug by your insurance since they often balk at untested meds and may not pay. Sometimes the drug companies pay for it for you, but not always. Aside from the cost, I really don't know, healthwise. Once you get the name of the drug we'll all jump in and do research and run it by our respective oncologists and maybe we can help you make an informed decision.

I worked on the computer most of today, so I am keeping my little business going. I tried to do the elliptical machine again today, and only made it 3/4 mile before my guts were aching and I quit. I used to do 10 miles every day, so this is discouraging, but at least I am doing something more physical than sitting on my butt all day. I've just felt 'off' a little all day, nothing major and still no nausea, but like little gas pains pinching at me, just enough to be anoying. I'm making spaghetti for dinner for my husband and step-daughter, but I think I'll just have an Ensure, since that seemed to help Marge. I think the extra protein in it might be good for me today. And I'm going to bed early, since I have been longing for a nap all day but didn't take one,

deanna14
Posts: 734
Joined: Oct 2008

I'm sorry I don't have all the details about the trial. I searched all afternoon on the internet and couldn't find it. I did remember the name of it is Avastin. I don't know enough about clinical trials to figure out which of the trials they are offering me. We will be discussing it further the first week of January when I go back to my gyn/onc. The little understanding that I got from it was the the "gold standard" is Taxol and Carboplatin, the trial randomly includes Avastin. The way it was explained to me is that it somehow interferes with the cancer cell wall, causing it to be to weak to survive. It is currently only FDA approved for use in lung cancer, colorectal cancer and metastatic breast cancer. So, the trial is to try to get FDA approval for our cell type. When I do a search the clinical trials finder, they ask for zip code and within how many miles you want to search. So I think they may be area specific, so that may be why you didn't hear of it. They told me that the drug company pays for the drug, not your insurance.
Anyway, if I find out any more I will let you know.
I hope you feel better tomorrow. Sleep well. I think naps are a good thing, do you have time during the day for a nap? My doctor is always very concerned that I am sleeping well at night and resting when I feel like I need to during the day. He explained that this is the bodies way of healing. You are not that far post op and are still healing from that, then the chemo is another blow to your system. Try to get some rest during the day. I sound like a mother hen, lol. The other lecture I get from the doctor is you must eat, not just drink the Ensure. Okay I'll stop now. Take care...

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

Okay, I did eat a cup of spaghetti with my Ensure. Every time I ate or drank anything today I had to go to the bathroom. It wasn't really diahrea, but something sort of like that. I thought constipation was a more common chemo side effect and have been on a high fiber diet leading up to my chemo, so I think I'll switch to a low-fiber diet tomorrow and see if I do better. I've always been a whole grain/fresh veggies kind of girl so a low fiber diet will be something totally new. Meanwhile I'm pounding the fluids to keep hydrated: green tea is my evening drink tonight.

Deanna: use the SEARCH box on the top of the page and type in "Avastin." There are lots of posts discussing this drug, mostly stuff about side effects, which are, of course, different for everyone and every cancer. But it may give you a feel for the drug. I plan to spend a little time reading about it, since I want to at least bring it up to my oncologist.

Just washed my hair: still hanging onto my head! I felt a little silly conditioning it, knowing what a short-timer it is! HA!

deanna14
Posts: 734
Joined: Oct 2008

That's funny, I just got the prescription today for my "cranial prosthesis." It's a wig for heaven's sake!
I will check that out. Check out the clinical trials finder on the left of this page under cancer.org. You can fill out all of your criteria and it will do a search and give you all of the clinical trials available. The will show you what is available closest to you.
I'm thinking about doing it, but I do want to research more.
I feel better that you did eat. Now if I can only get you to take a nap tomorrow. lol.
Sleep tight. I'll talk to you later.

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