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Calling all UPSC survivors for advice!

willbesurvivor's picture
willbesurvivor
Posts: 48
Joined: Jan 2011

Hi all of you USPC survivors! I have read most of your posts dating back to 2008 and they have helped me immensely in dealing with my mothers USPC diagnosis. I am sure mum will write on here eventually, but at the moment she is concentrating on eating the right foods to build up her immune system (a lot of raw juices etc) and is a little too scared to start reading about USPC yet.

Mum was told she had uterine cancer in December 2010, age 58, and a week later had a total hysterectomy. From this they told her she had stage 3C USPC. The cancer has spread to an ovary and they also found microscopic traces of the cancer in her lymph nodes. She starts 4 months of chemo followed by 5 weeks of radiation mid Jan. She didn’t really have any symptoms and it was only caught during a routine pap smear. They are still sure they have caught it early even though it is already stage 3C.

I have some questions for you lovely ladies because I am trying desperately to find information on the internet but don’t really know where to look!

• I see that a lot of you had 6 months of chemo and more than 5 weeks radiation. Do you know why mum would be getting less? I also know a woman with ovarian cancer of the same stage and she is also getting 6 months of chemo.
• What type of chemo is the best to start off with (so that we can see what she is getting, she doesn’t know yet)?
• Are there any questions we should be asking when she goes for her first round of chemo? At the moment we don’t know much.
• Are there any good, uplifting books for her to read (she is currently reading Lance Armstrong’s book)?
• What are the best resources for reading about the cancer and possible new treatments etc?
• Have many of you worked during your treatments? She was concerned she couldn’t because some people aren’t able to be in public while having chemo?

She is such a tremendously fit and strong woman and seeing her struggle with this diagnosis is almost unbearable. Mum and I are also incredibly emotional people so I don’t think that helps much!

I do however know that she will get through this with flying colours and I think once she starts chemo she will feel like she is doing something towards getting rid of the disease.

Thanks in advance for all of your responses!

Always Hopeful
Posts: 234
Joined: May 2010

Sorry to have to welcome you to this discussion board but, as you already know, this is the place to be for support and much information. Your posting leads me to believe that both you and your mom are positive thinkers and fighters...very necessary qualities in this battle. Keep up the great attitude! Dealing with a cancer dx is never easy, however, having the support of loved ones does make it easier. Your mom is lucky to have you take such an active role.

To the best of my understanding, the first UPSC protocol for chemo is Carboplatin and Taxol. Some were administered both every three weeks, six times. I opted for 18 weeks of Taxol and a total of 6 treatments of carboplatin administered every three weeks: week 1, 4, 7, 10, 13, 16 during the taxol. Some have been administered a sandwiched radiation: 3 carbo/taxol treatments...then radiation...then 3 additional carbo/taxol treatments. The plan for me was to have completed the carbo/taxol protocol and then go for a few sessions of bracytherapy (internal)to the vaginal cuff, which seems to be the most common point of recurrence. This did not, however, come to fruition since I was basically immune to the carbo/taxol, causing profuse tumor growth during treatment. This situation, thankfully for others, is not the norm. Yes, UPSC is known to reoccur after treatment but not usually during treatment!

As a public school teacher, my docs did not permit me to work during treatment. I found it necessary to apply for Social Security Disablitiy and retired in November (I am 61).

I have found it extremely helpful to always have someone with me when I go for a consult and, as often as possible, for my chemo treatments. Since so much info is "thrown" at us, it is very difficult to retain it all...to this end, I ask whoever is with me, to take notes in my notebook. This provides me with a chronological record of information, treatments etc. Believe me, this was quite necessary when I went to Memorial Sloan Kettering for a second opinion. They expected me to retell my "story" to them from day one...dx, tests taken and dates, etc. Without my notebook, I would not have been able to do that.

I have been extremely fortunate to receive my chemo in a hospital unit that has wonderful chemo nurses. From day one, they have provided me with information I would not even have thought to ask about. They provided step by step explanations for the premeds, possible reactions, long term effects etc. If that is not the case when your mom begins, I would believe that your questions should center on those areas...what premeds and why, short term reactions to the drugs, long term side effects.

As far as recommending various books, I know there are others on this board who feel quite passionately about some and I'm sure they will be making their recommendations to you. Although I've read many of them, I have not yet developed such an attachment...reading and rereading seems to work for me...this whole experience is quite a process!

Please continue to reach out...the women on this discussion board are phenomenally informative and supportive!

Peace and hope, JJ

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

So nice that you are helping your mother. My husband found this site well after I started treatment in Fall 2008 for UPSC. Like your mother I was fit and had no risk factors!! this is a strange disease.

Your tx will be based on your stage and your doctor's evaluation of you and your situation. I think JJ's idea of the notebook and taking someone is excellent - I wish I had kept my notes neater and more organized.

I was stage 3a (though it might have been higher than that in retrospect). I had the standard 6 rounds of carboplatin and taxol every 3 weeks. In hindsight, I and others have thought that UPSC might need more than the standard 6 - you might ask your docs about that and of course it will depend on your mother's stamina.

I did not need any neulasta shots and worked throughout treatment - taking 2 days off the weeks I got chemo (has tx on Thursdays). My doc did not recommend radiation for me because he said that he did not think the risk was worth it - I don't think this is the norm.

I was symptom free for about a year before I had recurrence in lymph system. I successfully completed combined chemo and radiation treatment and am thankfully in surveillance mode again.

I recommend "Getting Well Again" by Simonton, and "AntiCancer Way of Life" by Sirvan Schreiber are excellent. I also recommend guided imagery and meditation (Simonton teaches this in his book and you can get other resources from internet), an alkaline diet, and LOWERING STRESS. I am now retired and on disability (got easily due to recurrence) and think stress from work may have contributed to recurrence.

Get copies of your medical records and stay educated, ask lots of questions, but most of all stay hopeful and enjoy life. Hair will grow back!!! Laugh and sing alot!! All this is on the hundreds of threads on this website.

My best wishes. Mary Ann

Cler
Posts: 26
Joined: Jan 2011

Hello,

My UPSC seems to be immune to Carbo/Taxol. My scan 2 weeks after chemo finished showed an enlarged lymph node under my arm which a biopsy has confirmed to be cancer. I can't believe I have a recurrence already with no break of a even a few months for some normality.

I'm 34 and have been given a 2 year survival prognosis. I went from dealing with never being a mother last summer after a total hysterectomy, right into dying. It's very frightening and heart-breaking.

I am wondering what treatment will be offered if the normal carbo/taxol doesn't work? What treatments exist out there if the chemo doesn't work? And is it possible to experience remission if you didn't the first time round? I really need some time without cancer!

I'm looking for some hope. Some chance to live a semi-normal life. Is it possible for people who are chemo resistant and who experience recurrence to survive for a considerable time? Is there any chance this will ever go away now?

Cler X

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

Likewise, I'm sorry to have to welcome you and your mum to this board but it is a great support system for those who find themselves here. Some confusion over chemo duration may be time frame - 6 rounds every 3 weeks is an 18-week or just over 4 month course of treatment. My onc had me set for 6 to 8 but decided 6 was enough. In retrospect, due to early-ish recurrence, 8 rounds might have been better. I did not have radiation as it is expected that if cancer has migrated beyond pelvic area, chemo is better way to reach, radiation has side effects and is only local area treatment. I was Stage IV.

I agree with Mary Ann's book recommendations as well. Also, I was an active person, considered myself ( and still do ;-) ) a healthy person, who adhered to a healthy lifestyle. But I ended up with both breast cancer and UPSC - both Stage IV. Maybe the 'healthy' part is why I'm still here -- going on 18 years since first diagnosis, so do not give up hope! I do think stress was main impact on my body. I've just got to quit worrying about everything!

So glad you are able to provide support for your mum. Check in here whenever you need to .
Annie

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Jus to be different, I was diagnosed and had surgery in July,2010, Stage IV B, and started Chemo Aug, one month after surgery. I received Taxol weekly and carbo once every three weeks, a day after the taxol day. I needed two or three days to 'regroup' but worked three days a week till next dose.

Next Wednesday is the end of my protocol that was four rounds of taxol/carbo as described above, and two rounds of Doxil/Carbo at four week intervals, when I really had energy to work a five day week- I'm a psychologist who works in a hospital,actually the same place I'm getting the Chemo.

The books mentioned and positive attitude, help a whole lot. I also find that reflexology after carbo treatment was very helpful.
There is research that shows that post op patients, of all sorts, benefit from Marching Band music, so I bought Sousa disks.
;-)
Hope this helps.
Sara Zipora

Always Hopeful
Posts: 234
Joined: May 2010

Sara,

I was not aware of the Marching Band music benefit. My dad, a World War II Vet, would love to hear that! When my sisters and I were kids, he would wake us up on the weekend with the stereo blasting Sousa music! Thanks for memory jolt! When I speak to parents tonight, I'll be sure to tell them!

Peace and Hope,

willbesurvivor's picture
willbesurvivor
Posts: 48
Joined: Jan 2011

Thank you all so so so much for your info and support!! Mum has read your posts and is very grateful.

I compiled my official list of questions for the surgeon for when mum was suppose to be going for her first round of chemo, however this unfortunately did not happen. We are based in Queensland Australia and as some of you have probably seen in the news, 75% of the state has been declared a disaster zone because of the flooding. Mum and dad were going to drive to Brisbane from a town about 5 hours drive away for the treatment, however they were not able to get there. This has been very upsetting for all of us as we want to get treatment started, however there is not much you can do in this situation and we all feel for those people who have lost everything. She should be able to go next week then I should hopefully get some answers to my questions! I am currently in London but am returning home to provide support to mum in a few weeks - then if he hasn't answered everything I'll ask him personally!

I have read an article about a trial that her oncologist has completed about USPC, and in that trial he gave the patients paclitaxel (175mg) and carbo on day 1 of each 3 week cycle for 4 cycles. They then gave the patients external whole pelvic radiation for 5.5 weeks. This seems to be completely different to what you have all received? I also read in another article about the trial that he only gave people with stage IV 6 treatments. I have absolutely no idea why they would treat stage IV any differently to stage III? I am not actually sure if this is what he will be doing but it is a possibility. Do you think she should push for 6-8 weeks chemo? The link to the name of the trial if anyone is interested is http://www.ncbi.nlm.nih.gov/pubmed/21126755 and also http://clinicaltrials.gov/ct2/show/NCT00147680.

Apart from all of the set backs mum is doing well. She started running about 2 weeks after surgery and has been back to work for a couple of days (she found this hard).

Let me know what you think about the possible treatment option if you have any opinions and I will keep you posted.

Tali x

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

Sorry your Mum could not make it to her appointment. It must be terrible over in Australia with all the flooding. I know you and your Mum must be frustrated with the delay of treatment. We know how we all wanted to get started with treatment to start fighting this cancer.

I too have stage II-C upsc. I had the sandwich treatment of 3 chemo treatments (taxol/carbo) every three weeks, and then 28 external radiation treatments, and a 28 hour internal radiation treatment, and the 3 more chemo treatments.

With stage III-C the cancer has spread to the lymph nodes. That is why they do radiation to the pelvic area in addition to the chemo. With stage IV the cancer has spread to other organs. Therefore they just give chemo, as they cannot give radiation to many areas.

Most people did get 6 chemo treatments, but some only had 4 or 5 as their body could not handle 6 treatments. They may start with 4 chemo treatments and see how your Mum's body handles the treatment, and how the cancer reacts to those treatments. They can always add more if they think she needs more.

Glad you have your questions ready for the doctor, and that you are going to be able to spend some time with her in the future. Feel free to come back with any other questions you may have. In peace and caring.

deanna14
Posts: 743
Joined: Oct 2008

Good luck to you and your mum!

The world of cancer research and treatment changes quickly. This may the difference in the treatment. I had 5 weeks of external radiation and my chemo lasted 6 months, but should have been more like 4 months. Several of my treatments were postponed to to blood counts being too low safely take a treatment. I was given carboplatin and taxol... which at the time was the gold standard for UPSC, at least it was 2 years ago. I really like a book called There's No Place Like Hope, by Vickie Girard. It is one that I bought because I wanted to be able to read it again. I didn't work while I did chemo, but I am a nurse and would have been exposed to more than my doctor wanted me to be. And, I was a nurse in a men's federal prison and felt too weak to feel like I could defend myself or my peers if I needed to. So I did not work.

willbesurvivor's picture
willbesurvivor
Posts: 48
Joined: Jan 2011

Hello everyone!

I do have a few more questions:

How much were your dosages of carbo/taxol? That might be a reason why she is only getting 4 treatments as opposed to 6. She is getting it in three week cycles, then 4-6 weeks off, then radiation.

For those of you who received internal radiation- did the oncologist give you a reason for the internal radiation? As far as we are aware mum isn’t getting internal radiation therapy, just 5 and a half weeks of whole pelvic radiation. What are the side effects of whole pelvic radiation? I have read that that the side effects can be quite bad when compared to targeted radiation. Did any of you receive whole pelvic radiation?

Also one final question, do you all take the drugs to help with the side effects of the chemo? Also what are they (so that I can look them up)?

Mum starts treatment next week which is great. She only has to have chemo for 3 hours which is also great – is that how long you were all in for?

Thank you!

Tali

sleem
Posts: 92
Joined: Feb 2010

As a 2 yr. survior, I look back to the people in my life who helped me. I had friends and family who could not even read, talk, or act like I was in danger. Others, who let me be me with my fears and need to research everything. The Am. Cancer Society has so many wonderful booklets that I was able to get at my hospital's library. If yours does not have these, write to Am. Cancer Society. These deal with all the aspects from coping, caregiver, patient, radition treatment, etc. My hospital has a website for videos, info, etc. to help understand about my USPC. It is a time to reflect ones life...what has been, what could be missed, and what do with the here and now. That is to me normal in an abnormal new setting of ones knowing that they are meeting life challenges maybe for the first time.
I went from a first doctor who made mistakes to a wonderful facility, doctor who saved my life.
Educate yourself as hard as it is to read about it. I wanted to know. even when knowing was hard. Take care of yourself as your emotions can swing one way and next. Many loves can not deal with it and appear to the cancer person to run away from them in support when in reality that loved one can not handle it. I have had to cope for both myself as the patient & my spouse.
The people around me who hear the truth and let me know they would be with me at all times provided a rock then and now.. I would have hope and then none..they are still my rock now... I have faced it and have come through with each day of living to the fullest.
You will get through this.. everyday is a chance..if you have a faith...let those people in your faith support you..they have been so much to me in my own spiritual help...much prayers and you and you mom are not alone..God bless

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