NEW TO THIS
Kind of discouraging
Not one response to my last post!!
Question is Chemo options to USPC when Carbo/Taxol have failed
hope someone responds in some way!!!
All alone here!
Beila, I understand the dissapointment when you seem invisable, unheard. Please believe me that this doesn't happen often, but it does, Remember that we're all in this at some phase. We could coincidently be going through something to distract us, might be very sick, it could be just that some of are also discouraged, it could be anything. The Ladies here are a wonferfull resource, but human and also, frail like you.
I too was dx with UPSC 11/10, had the same chemo as you and no radiation. I'm Blessed, this was the cocktail that fit me. I've been NED since 5/11. I read this boards history at my leasure, it is full of experiences and results. I'm so sorry for how you're feeling right now. This is a frustrating time, not feeling in control, waiting for test, going to the appts... I know there are other chemos that work as effectively as the one that worked on me. I hope they've sent your tissue samples in for the test that trys different chemos on your particular cancer. Please don't give up on us, I'll be looking for an update from you on the new path to NED(no evidence of disease). Marie
thank you SO SO much for your response.
It has just made me cry again! but for POSITIVE emotion
I got the bad news the day before yesterday, and felt totally doomed!!
You should see me! Aside from post chemo fatigue, I feel and look normal.
I am otherwise in excellent health, very young for my age (66), and certainly dont look like a cancer patient!
This site has totally changed my outlook...that I am not about to bite the dust in 6 months, but that there are other treatment options, and ladies that have been living in and out of treatment, tackling each new issue as it rears its ugly head, but LIVING LIFE!!
It makes me feel so much better when you say "I know there are other chemos that work as effectively..."
Also, I didnt even know that they test our tissue samples for effective chemos
On Monday my Gyn Oncologist will be referring me to the Medical Oncology Dept....I hope i get an appointment very soon.
I will come armed with information and chemo options gleaned from this site
Best Best Wishes,
Beila, honestly, I know, and so do many women on this site how certain times are unbearable. The truth is that most of it will be bearable. I thought I'd been through the hard stuff, then I was dx NED. I can't believe how when you are doing something to beat it, you feel safe, and expect it will work. When I was done and beat it, I then started to expect it to come again... waiting for the monster. Tough time for me, I'm very glad to say, I got a handle on that. I realized how foolish to waste any effort with that thinking. I now realize my faith (which I thought was unshakable) needed an upgrade. I'm so glad that you realize that we can and DO have lots of reasons to hope.
You have made my day, just by responding that you are feeling better. Thank-You, Marie
I'm so sorry your post went unanswered. It is horrible to think we don't matter and are alone. I apologize.
Like you, I am "healthy" except for this terrible cancer. It's crazy. I am sorry your carbo/taxol treatment was not effective. This is the most common treatment "cocktail" given and seems to work for most of us - me included for initial treatment.
I continue to wonder why doctors do not order a tissue assay or functional profile which tests our tissue against multiple agents to determine which is best. Mine has always done it so I thought this was normal. This would have been especially helpful for you Beila who did not have the good luck that most of us have. Please INSIST on this in future!!! This will save your body from unnecessary treatments.
I know how devastating it is when expectations are not met. I am dealing with second recurrence of UPSC and tried so hard to treat with alternative methods. I truly expected PET scan to be clean but was horrified to learn that alternative ways did not help - kind of like your expectations of carbo/taxol. My doctor assured me that we have "many options". I just started chemo again with doxil and was literally scared to death. I'm doing well. Usually our anxiety is unwarranted - things aren't usually as bad as we think they will be. I pray that doxil will be effective.
So please take heart, Beila. Doctors have other chemo agents that will help when one formula is resistant. Maybe it's not too late to get that assay. Ask about this.
Here's a cyberhug. We are in this together. Keep us posted.
Beila, I am sorry I didn't respond to your post . I didn't have the knowledge or experience to offer/answer your request as I am still relatively new at all this but I certainly could have piped up and said so. I know when I ask a question, I'm checking a zillion times a day hoping for an answer. I am awed when I read old posts from women such as Mary Ann and compare them to their most recent posts. They have learned so much about our disease and are such fantastic mentors. Linda P. gave so much and her messages are still so timely. She is very real to me and I wish I could have known her. I hope her family knows she is still guiding women.
I now know what Marie means about the difficulty of living with this when you aren't in treatment. The waiting/wondering are just as hard, if not harder and only those who have been there truly understand. Most people think we should just forget about it. little do they know it will always be the monster under the bed.
I too was diagnosed with UPSC this past June. I had surgery 6/25/12 I am StageIIIa Grade3. I have been through first round of chemo and awaiting my radiation schedule. I will have an additional round of chemo after radiation. I am 64. I would venture to say most of us hearing our diagnosis felt exactly the same things you are feeling. Do not give in or give up. There's a drug out there, they will find it. Glad to hear your seeing oncologist. No offense but really its who you should be seeing. They are just more up to date on treatments, drugs etc. You just hang in there. Best to you...lorna
I did not respond because I have the other rare uterine cancer, Carcinoma sarcoma (MMMT – old term) stage 3C1 as it was found in one lymph node. I had the carbo/taxol and no radiation. I was dx in April 2011 finished chemo in Aug 2011 and still NED. I do not know that much about USPC except for what I have read on here from the other ladies that do have it. Do not give up, stay positive, the onc dr will find some chemo that will help as there are many available. I would try to get a gyn onc dr instead of just a onc dr, it seems to help if the dr has studied the female areas as a specialist in cancer. Will add you to my prayer list. trish
I am new to this site, and just read your comment. I'm not even sure what USPC
stands for, but I'm assuming some type of uterine cancer. I also have been diagnosed
with uterine cancer, stage 4. I had the Carbo/Taxol treatment as well, but my cancer
came back within 3 months. I was in a trial for 2 months, but that was not effective either. This week I will try a new drug, called taxotere. Please don't give up hope.
There are so many drugs out there, and I keep hoping they will find the right combination for me. I am also otherwise healthy, do not look like I have cancer, and sometimes
feel like they are looking at someone else's cat scan.
I cherish every day that I feel this good, and hope to stay as healthy as I can for
an extended period of time. Just know that you are not alone. We can get through so much, with the support of others who are fighting this battle.
Love and prayers.
FOR THOSE OF YOU WHO DON'T KNOW WHAT UPSC IS - PLEASE GOOGLE OR GO TO NIH SITE OR A MEDICAL SITE YOU TRUST AND FIND OUT. IT IS RARE LIKE MMM - VERY RARE AND THEREFORE DOESN'T GET A WHOLE LOT OF RESEARCH $$ OR PEER REVIEWED PAPERS. FIND OUT WHAT YOU ARE FACING WITH UPSC. CATCH IT EARLY IF POSSIBLE. CANCER ISN'T CANCER - SOME ARE HARDER TO TREAT AND THAT MAKES THEM FRIGHTENING.
sorry - i didn't see this - UPSC is so very rare - we really should have a board of our own that we use exclusively - maybe there is one and I don't know how to get there. Or maybe all these "uterine" posts are UPSC?????? That sounds wrong though.
here is my experience with UPSC chemo:
dr tested surgical biopsy for chemo drugs that MY upsc didn't like
taxol was #1 and I think it is for most UPSC.
Gemzar was #2 and that is a strong one like taxol but not as strong -
did you have your surgery biopsy tested for what kicks it hiney the best, second best, etc. If not can you see if they know and forgot to tell you or whatever?
What stage are you? This can matter a lot in your treatment. Keeping ahead of this sneaky freaky kind of uterine cancer can be a quest. Keep in mind CT, PET/CT scans harm the body too - so sometimes drs don't want to take too many to do any more harm than necessary. We need superman with his un-lethal xray vision! :o)
thinking of you --- hang tough - keep advocating for yourself and always always ask question even if you have to be a pill and insist they answer -