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hopeful girl 1
Posts: 454
Joined: May 2010

I am new to the boards. I look forward to communicating with everyone.

I am 46. I was diagnosed with uterine cancer stage 3 in Feb 2010, and had surgery end of Mar 2010.
Recovery was long as I experienced a few complications including fluid retention of about 25 pounds in legs and feet which took several weeks to flush out. I also had bladder surgery one week following first surgery for another complication, tear in bladder, so I had to wear a catheter for about 3 weeks. Once catheter was out and fluid retention went down, I was able to walk without the walker and I began to get stronger. My doctor was pleased when he saw me at my appointment pre-chemo. He told me my chances are good with the therapy of 3 chemo/25 radiations/3 chemos. I have a wonderful surgeon/oncologist.

My first chemo was May 7. I go for bloodwork/labs this Friday, and my second chemo the following Friday. The first few days I had diareah (spelling) and about 3 days in I started to get a lot of pain in my joints. I still have that but not as intense as it was for a several days. I also still get some wierd pains post surgery (such as my back etc) which I am told is part of the healing process.

I had serious appetite issues pre-and post surgery and went from 118 to 107, but as of yesterday was back up to 113. I have been eating high cal items such as scones and drinking two protein drinks a day. I'm not sure how I was able to force myself to eat more-I think my brother inspired me with his words and ideas (he suggested the scones).

I find it hard to sleep at night-I wake up every hour to hour and a half. Part of this may be due to worry.

Can anyone tell me, do the joint pains get worse as treatments continue or just come on same way each time? Do we always lose our hair with the Taxol/Carboplatin mix? Are there any board members who have not lost their hair? I have a wig ready to go, that I received at no charge from American Cancer Society.

For now I feel ok, and I am grateful to be alive!

Does anyone have any advise for keeping the mind somewhat at peace and relaxing?
Any tips that help with the whole process? My doc offered an anti-depressant if I would like to assist in mood elevation, but so far I am trying to do it naturally. I find if I get out of the house a bit I feel more uplifted.

Thank you.

Always Hopeful
Posts: 234
Joined: May 2010

I, too, am a newbie on the boards. My surgery was March 22 and began chemo on 4/28. My regimine involves six 3 week cycles of Carboplatin and Taxol (with the taxol being given every week and the carboplatin every third week), to be followed by internal radiation. Although the tumor "resided" in the endometrial lining without any other gyn organs or lymph nodes being affected, my colon did have two "dots" of the cells on it. Because of the aggressive nature of the papillary serous carcinoma, an aggressive attack is being taken.

I am fortunate in that side effects of the chemo have been very limited. Similarly, my recovery from surgery was also without problems. I am, though, so sorry to hear of your problems and side effects. Hang in there!

My chemo/medical oncologist, as well as the oncology nurse, told me to expect hair loss. Well, just this past Friday, at 3pm, my hair starting thinning. I had my granddaughter's communion on Saturday and luckily didn't have to wear my wig. Handfuls of strands came out when I washed my hair on both Saturday and Sunday so on Sunday I asked my best friend to cut it really short. Now there are shorter strands constantly falling out. I've resorted to wearing a cotton/poly wig liner when I'm in the house. I'm contemplating buzzing it soon if it doesn't all fall out. I'm not really a vain person, but the hair loss for me has been quite difficult...I guess it's because there is the constant reminder of what we are going through. Thankfully, it is only temporary and that is what I keep telling myself! Each day seems to be a bit better as far as my accepting this. I also keep telling myself, this is the price we pay for wellness...in the end, not a big price at all! It will grow back!!!

I, too, have had sleeping issues. I think, at this point, because of the need to constantly be hydrated, I've many nights gotten up about every two hours to void my bladder, after which I usually drink another 8 ounces of water. No wonder I'm not sleeping!

I've also become more spiritual because of this and when I wake up anxious and worried, I calm myself down but saying a prayer, asking for this worry to be taken from me right now because sleep is so necessary for recovery. One of my cousins told me to accompany this prayer with my hands over my heart "holding" my worries and concerns. Slowly I extend my hands and arms to the heavens as I continue my request. I know it may sound odd to many, but it does absolutely work if you are willing to "give it up." In fact, just last week, I had to share this with my daughter who unfortunately just experienced a miscarriage of her first pregnancy. As odd as it sounded to her, she tried it and did have a good night's sleep.

I have also been reading a lot...recreational reading, as well as, various books on prayer and healing. I have been very fortunate to have a really large support system and believe that all of their prayers and positive energy have much to do with my surgical recovery and now, my positive chemo experience. Such power can not be discounted. I am proof of that!

I also found it beneficial to walk, both inside and outside. It's the perfect season to clear your head in outdoor walks and "commune" with the natural happenings all around us. The newly leafed trees, the chirping birds, the beautiful flowering bushes all point to spring's rebirth! It helps to walk with someone who you can freely express your thoughts, concerns, fears etc. but if I'm walking alone, I sometimes find myself whispering my thoughts to myself and to my powerful Creator. So what if anyone else hearing me thinks I've flipped my wig (no pun intended). Let them think it...who cares!

I have also found that reading through many these postings has helped me broaden my knowledge base tremendously. So many of those who post are so willing to share their experiences and knowledge so that through them you feel support and the peace that accompanies it.

For now, this is Always Hopeful signing off to Hopeful Girl 1 with my best wishes for hope and peace,

JJ

Kaleena's picture
Kaleena
Posts: 1975
Joined: Nov 2009

Hello Hopeful:

Sorry you have to be here! Because I was unable to take Taxol, I took Gemzar/Carboplatin and I did not lose my hair (I had bought a wig though). You will get pains. Some days more than others. My initial treatment was six doses of Taxol/Carboplatin (once a month). When I switched to Gemzar I went twice a month. A year later I had three brachy radiations.

After treatments, my second day I would get really really tired. I did a lot of brain games. I had "Chemo Brain". Although they say there isn't anything like that, what it is that you sometimes have a hard time thinking because you are tired. I went to work daily and really didn't miss much.

Actually, my husband went with me and where I went to the infusion office, there was a big room and we would all talk and joke around. We also brought in pastries and stuff to share with staff.

Hope all goes well for you!

Kathy

(diagnosed in 2005 endo adencar. Grade 2 IIIa - NED!)

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

Be strong and you will get thru this as we've all done.

I had the same drugs you did, last year during my treatments. You will loose your hair in approx 14 days...almost to the clock. You'll feel like a shedding puppy around the home, but be proactive and have a stylist cut it short...not a buzz at it hurts! I picked out a wig while they could see my regular hairstyle and color...worked great!

Chemo is cummulative, therefore, you'll feel more tiredness as time goes. Just take your naps and try to drink many fluids. ALso taking protein twice per day is exactly what I did to help build your strength. It would take me approx 4 days after chemo infusion day to gain my strength....be careful around crowds the first 2 weeks as your immune system is down. Doesn't mean you should be a hermit, just don't go out to stores at every whim as you might have before. Wash your hands a bit more frequently. I was okay as never even had a cold...lucky girl!

Try to force yourself to eat, but avoid fried and rich foods as might upset your stomach.

Hang in there and come back here often...
Jan

Ro10's picture
Ro10
Posts: 1579
Joined: Jan 2009

Sorry you are having to join our sisterhood. Feel free to come and ask any questions you may have.

I too was diagnosed with Stage III-C UPSC. I too had the sandwich treatment with chemo/radiation/chemo that you are going to have. I started losing my hair on day 12 after my first chemo. It does grow back some during radiation, and then falls out again. It is an adjustment to see your bald head, but it was not as hard for me as I thought it would be. I have quite an assortment of hats. I only wore my wig to church or a special occasion. I had minimal side effects from the chemo, and being tired and nauseated were my main problems with radiation. The treatments were so much better than I had anticipated. But I know I worried how my body would react to the treatments. The fear of the unknown does cause anxiety.

Sounds like you had quite a few problems after surgery. Wondering if you had robotic surgery since your bladded was knicked. I am glad you are feeling better now. The protein drinks are a good way to help healing and increase strength.

If you use the search engine and type in Resources you will find books, tapes and CDs that others on this site have recommended. As time goes on you will find peace with your situation. As others have stated, I found walking and being outside a great way to help when I was feeling down.

Keep your positive attitude and it will get you a long way on this journey. Take each day as it comes and enjoy each day. In peace and caring.

nempark
Posts: 683
Joined: Apr 2010

Hi hopeful girl: I am so sorry you had to join the board in the first place. I was diagnosd in November and had surgery immediately, radical hysterctomy, omentum lymph nodes everything removed by robotic surgery. four button holes which was not bad at all. I had six sessions of carbo/pax no side effects (not one day did I lose my appetite bummer at least I would have lost some weight) with the exception of those leg pains., but I only got it at the first or second session and then it went away. I don't think it will get worse, if anything it will go away. My treatment is completed and I had my first ct scan that was clear. Thank God for that. When I was diagnosed, I thought of the worse situation. But now six months later I look back and it is as if I am looking through a veil, everything looks like a dream. But due to good friends and a good family I managed to save my self from depression. Please do not add more to your condition right now by taking more pills.
Try to develop regime of prayers. It really works I am a Jehovah's witness and without the support of the congregation I don't think I would have made it. We pray for each other all the time. About the hair, I was more than happy to cut it off when it started to fall out, at first I cut it short and when I showered it felt weird on my skin so I just shaved it off. I too got a wig from the cancer society and then I bought a really nice on. Prepare yourself you will also loose your lashes and eyebrows. Believe me it will come to you like second nature after a while. time will go by so fast you will not believe it when you are finished.Cancer is not the end its the beginning of a new life for all of us besides the Doctors and nurses we have to make changes that will benefit our health and help ourselves to recovery.
So I do know what you are going through, but you cannot imagine how the God of this Universe has made each and every one of us so strong and with such a powerful mind that when we face these horrible hurdles we surprise ourselves how much we can endure. You will see how well you will cope because we have not other choice but to be determined to fight and get back your health. YOU CAN DO IT. LOTS OF LOVE - I WILL PRAY FOR YOU.
KEEP ME IN TOUCH --I SEND POSITIVE THOUGHTS YOUR WAY.JUNE

hopeful girl 1
Posts: 454
Joined: May 2010

Thank you to everyone for their words of encouragement and strength.
I will remember about the walking. I do find that my spirits are better
when I get out to run errands and see people. What about going outside in the sunshine?
I thought I read in my notebook from my hospital that the chemo makes us sensitive to the sun and the eyes as well?

My treatment is 3 treatments of taxol and carboplatin every three weeks and then 25 radiations and then three more chemos every three weeks.

I was encouraged to hear that some of you note the leg pains will get better.
I am already nervous about getting the second chemo which will be end of next week, for fear of those pains getting worse. Did anyone ever have any sensitivty in their jaw, almost feeling alittle like swollen glands that would come and go? I have had that too since the first treatment.

Did anyone drink the Ensures, or protein drinks? I had a lot of appetite loss but now have been able to eat some things better and for calories. Starbucks scones (high calories), macaroni and cheese, pizza, steak, bagels etc. I try to drink two Ensures every day for the protein. I also found that I seem to feel better if I drink at least 64 ounces of fluids a day. I don't think I was very good about that in the past. And yes, I am up every hour at night for the bathroom between worry and the need to get up.

I am so glad to meet all of you on these boards and share our experiences and help one and other.

Peace and healing and love to all.

lovingmylife
Posts: 6
Joined: May 2010

In the middle of the treatments seems like it will never end but please know it does. I was diagnosed by surgery with stage IVB uterine cancer March 2009. Had a large tumor in my omentum that came from the uterus which was how they found the cancer.
I had the same chemo regimen as you. My joints did hurt but my onc gave me a steroid pack. I took the first one on day 2 after chemo and it really helped with the pain. I also was given a shot to induce the bone marrow to send cells into the bloodstream the day after each treatment due to my counts dropping to bottom after the first treatment. Not sure of the shot made my pain worse or not. But if you are having pain ask your dr. to see if he/she thinks this may help.
I was also given large doses of antinausea via IV just prior to each treatment and then had pills for afterward. Please take them if you get feel nauseated as you do not want to start a cycle. Once a pattern starts it is harder to break it up. All to say I had very little problem with eating after my surgery. Lost 30 pounds prior to surgery though due to not being able to eat anything.
Now all my tests are great and no evidence of disease at almost a year out.
Please know everyone here will keep you in thought and prayers. I did not find this site until recently and would have loved to had such great information and support during my illness. I am also encouraged by read others stories that are surviving this disease.
If you have any questions do not hesitate to ask as it will help you find some peace hopefully. Also, I read a lot of books. I pray you find peace during this time.
God Bless!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

It was most difficult for me to keep my mind at peace. Reminding myself each time I get anxious that I am alive right now helps. Not to waste the moment that I am living in anticipation of what might be in the future. Live in the present not the future. That helps me a great deal. I feel great right now. Tomorrow is tomorrow. I can only live in today. And today is a good day.

Always Hopeful
Posts: 234
Joined: May 2010

I recently found the following saying:

We cannot change YESTERDAY, that is clear.
Or begin TOMORROW until it is here.
So all that is left for you and for me,
is to make TODAY as sweet as can be.
Emma C. Dowd

I have it framed and in a location I see often throughout the day. I enjoy stopping read it and this truly helps me to focus.

Peace and hope,

JJ

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