Recurrence right after treatment

Cler

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

daisy366

Cler
My heart goes out to you. I also have UPSC but am much older - 63. I just finished treatment for a recurrence. I was diagnosed 2+ years ago.

Some thoughts include: 1) getting second opinion from gyn-oncologist - I hope your first doc is a gyn-onc since they know our disease the best. I would imagine they will try other chemos.
2) If they have not already done a functional profile (assay) of your tissue, push to have this done!! This is an important test that tells what chemo your cancer responds to. Many docs do not order this - mine did and the standard carbo/taxol mix was the best for me. Perhaps this was not done yet.
3) there may be a clinical trial that you can get into.
4) surgery or radiation may be other options

Easier said than done, try to stay positive that they will find the right treatment for you. My doc says they are finding new treatments all the time.

I will pray very hard for you. Keep us posted.

Mary Ann

lindaprocopio

daisy366 said:

Cler
My heart goes out to you. I also have UPSC but am much older - 63. I just finished treatment for a recurrence. I was diagnosed 2+ years ago.

Some thoughts include: 1) getting second opinion from gyn-oncologist - I hope your first doc is a gyn-onc since they know our disease the best. I would imagine they will try other chemos.
2) If they have not already done a functional profile (assay) of your tissue, push to have this done!! This is an important test that tells what chemo your cancer responds to. Many docs do not order this - mine did and the standard carbo/taxol mix was the best for me. Perhaps this was not done yet.
3) there may be a clinical trial that you can get into.
4) surgery or radiation may be other options

Easier said than done, try to stay positive that they will find the right treatment for you. My doc says they are finding new treatments all the time.

I will pray very hard for you. Keep us posted.

Mary Ann

Do you know how RARE a recurrence in the armpit is? .03%!
I had a recurrence in my underarm lymph node 5 1/2 months after I finished my intial carbo/taxol and pelvic radiation/brachy. A recurrence of endometrial cancer in an underawrm lymph node is sooooo rare (.03% of endometrial cancers matasticize there) that my oncologist oredred a needle biopsy to see if it was possibly an UNRELATED new cancer like breast cancer. It wasn't, but they were able to use that new live tissue to do the assays Mary Ann is recommending and I must echo strongly her recommendation that you take advantage of that new biopsy to have an assay for Her2 and ER and PR at least. That can really help you from wasting time taking other ineffective chemos.

I read those same horrible statistics. Let me reassure you that I have passed my "expiration date", and I'm still here and living a vibrant happy life. Oh, sure, my life is regularly interrupted by chemo and shots. But cancer is not my whole life. I feel good. (& I had chemo this afternoon!) I hope that you'll make your peace with it. The way I look at it, if you feel good, then you ARE good. Would you know you had cancer if you didn't have the scans (and scars) to prove it? (((Cler))).

It's hard. I remember just how I felt on the day I got the news of my recurrence. It was like being at my own funeral the way each of my loved ones collapsed in my arms in tears. But we all got used to it again; everyone laughs and goes about our lives now. You will find that strength within yourself; you've already proven that it's there.

kkstef

Cler
Cler I am so sorry to hear about the lack of response to carbo/taxol but there are many other options. Other chemo's plus radiation and more surgery. Mary Ann and Linda have provided excellent advise.

Am glad you are on this discussion group as there are so many women here with incredible knowledge and tons of compassion!

Please let us know what your next steps are.

Big hugs....Karen

jazzy1

kkstef said:

Cler
Cler I am so sorry to hear about the lack of response to carbo/taxol but there are many other options. Other chemo's plus radiation and more surgery. Mary Ann and Linda have provided excellent advise.

Am glad you are on this discussion group as there are so many women here with incredible knowledge and tons of compassion!

Please let us know what your next steps are.

Big hugs....Karen

Cler
I can feel your pain, but know we're all here for you today and always. You'll find some great information from the experts here -- Linda and Mary Ann and Karen.

I had the same protocol you've had with much success as your system is different. Know there are additional options with drugs...just keep searching.

You're in my thoughts and I wish the best for you during your journey. Keep positive as it does get better...trust me!!

(((( hugs ))))
Jan

maggie_wilson

jazzy1 said:

Cler
I can feel your pain, but know we're all here for you today and always. You'll find some great information from the experts here -- Linda and Mary Ann and Karen.

I had the same protocol you've had with much success as your system is different. Know there are additional options with drugs...just keep searching.

You're in my thoughts and I wish the best for you during your journey. Keep positive as it does get better...trust me!!

(((( hugs ))))
Jan

CLER
dear sister,

please do not give up hope. no one, i mean NO ONE knows how many years of life you have, so don't go by what anyone says. period.

i want to second what some other sisters have already said: please get another gyn onc opinion; have a biopsy of some fresh tissue to be assayed for chemical sensitivity. this is a must, so you won't have to have another hit-or-miss chemo. there are literally dozens of chemos out there, and chemo combinations that could very well work, even if the standard, one size fits all, carbo/taxol, did not. the assay will tell you which chemos work best for your particular cancer. there are definitely options out there, so don't despair, get some more information instead.

i'm so sorry you have to go through all this, especially at your age, but your youth could well work to your advantage. you never know what is going to work, and i believe something will. hang in there.

sisterhood,
maggie

Cler

maggie_wilson said:

CLER
dear sister,

please do not give up hope. no one, i mean NO ONE knows how many years of life you have, so don't go by what anyone says. period.

i want to second what some other sisters have already said: please get another gyn onc opinion; have a biopsy of some fresh tissue to be assayed for chemical sensitivity. this is a must, so you won't have to have another hit-or-miss chemo. there are literally dozens of chemos out there, and chemo combinations that could very well work, even if the standard, one size fits all, carbo/taxol, did not. the assay will tell you which chemos work best for your particular cancer. there are definitely options out there, so don't despair, get some more information instead.

i'm so sorry you have to go through all this, especially at your age, but your youth could well work to your advantage. you never know what is going to work, and i believe something will. hang in there.

sisterhood,
maggie

Thank you for all your
Thank you for all your comments. I feel much more positive - it's such a relief to hear from people who understand what going through this is really like. I have been reading other posts and can see all the chemos and drugs that people are trying and it does seem as though some things are working.

I have taken your advice and arranged a second opinion at a leading hospital in London called the Royal Marsden. It is a specialist cancer hospital so i'm sure they will have some options for me. I will definitely ask for this assay test on the tissue - never heard of it before!

Thank you all so much for your advice. I will let you know how I get on next week with the PET Scan and the 2nd opinion.

((all)) XX

daisy366

Cler said:

Thank you for all your
Thank you for all your comments. I feel much more positive - it's such a relief to hear from people who understand what going through this is really like. I have been reading other posts and can see all the chemos and drugs that people are trying and it does seem as though some things are working.

I have taken your advice and arranged a second opinion at a leading hospital in London called the Royal Marsden. It is a specialist cancer hospital so i'm sure they will have some options for me. I will definitely ask for this assay test on the tissue - never heard of it before!

Thank you all so much for your advice. I will let you know how I get on next week with the PET Scan and the 2nd opinion.

((all)) XX

Awesome. I'm glad you have
Awesome. I'm glad you have a more positive outlook. Still sending prayers, love and light. Mary Ann

HellieC

Cler said:

Thank you for all your
Thank you for all your comments. I feel much more positive - it's such a relief to hear from people who understand what going through this is really like. I have been reading other posts and can see all the chemos and drugs that people are trying and it does seem as though some things are working.

I have taken your advice and arranged a second opinion at a leading hospital in London called the Royal Marsden. It is a specialist cancer hospital so i'm sure they will have some options for me. I will definitely ask for this assay test on the tissue - never heard of it before!

Thank you all so much for your advice. I will let you know how I get on next week with the PET Scan and the 2nd opinion.

((all)) XX

Wishing you luck Cler
Just read through your posts - I am so sorry you have had a recurrence so soon. Please stay positive - you are doing all the right things and I am sure there is a treatment out there which can help you get into remission. I do hope that the Royal Marsden can help you to find the right one. You are so young to be going through this.
But you have found a great site here! I am also from the UK and was a little unsure about joining this site as it is mostly ladies in the USA. But I have gained so much support and positivity here. I hope you find it too. It doesn't matter where we live - we are all going through similar emotions!
Thinking of you
Helen xx

lociee

HellieC said:

Wishing you luck Cler
Just read through your posts - I am so sorry you have had a recurrence so soon. Please stay positive - you are doing all the right things and I am sure there is a treatment out there which can help you get into remission. I do hope that the Royal Marsden can help you to find the right one. You are so young to be going through this.
But you have found a great site here! I am also from the UK and was a little unsure about joining this site as it is mostly ladies in the USA. But I have gained so much support and positivity here. I hope you find it too. It doesn't matter where we live - we are all going through similar emotions!
Thinking of you
Helen xx

Hi Cler, I have stage 4
Hi Cler, I have stage 4 endro - After surgery the cancer came back. I had carbo/taxol - cancer stayed - then had doxil - cancer stayed. Radiation put me in remission - something they (doctors) had not expected. For the past year I have maintained a stable CA125 - so anything can happen. Ask doc about radiation - I hated and acted like a baby the whole time - but it did work.
Take care, Mia

daisy366

lociee said:

Hi Cler, I have stage 4
Hi Cler, I have stage 4 endro - After surgery the cancer came back. I had carbo/taxol - cancer stayed - then had doxil - cancer stayed. Radiation put me in remission - something they (doctors) had not expected. For the past year I have maintained a stable CA125 - so anything can happen. Ask doc about radiation - I hated and acted like a baby the whole time - but it did work.
Take care, Mia

mia, you look great!! keep
mia, you look great!! keep smiling. Mary Ann

lociee

daisy366 said:

mia, you look great!! keep
mia, you look great!! keep smiling. Mary Ann

Thanks!
Thanks Mary Ann - I was curious if anyone would notice that suddenly I had a picture. I guess I'm more ready to expose myself. Thanks for noticing! I love your friendly, warm face!

Cler

lociee said:

Thanks!
Thanks Mary Ann - I was curious if anyone would notice that suddenly I had a picture. I guess I'm more ready to expose myself. Thanks for noticing! I love your friendly, warm face!

Hello everyone,
Thanks again
Hello everyone,

Thanks again for all your encouraging words and tips. I am still so frightened but trying to stay positive. Although my diet and exercise regime was good before, I have stepped it up a notch to Veganism and daily exercise, meditation and a range of supplements - vitamins, anti-oxidants, and an immune booster called biobran.

I went last week to a phase I Drug Development Unit at the Royal Marsden in London. There is no one clear answer from what I've been told. Most likely I will offered chemo. They suggested the possibility of including a phase I or II drug in the mix also. Not sure what as yet and they couldn't tell me what the results might be as phase I is very hit or miss. I will certainly let you all know what they suggest.

All of this depends on the PET Scan results and the tissue assay - thanks so much for letting me know I should ask for this!!

Next week I get the PET Scan results. It will just be surgery and radiotherapy if the recurrence is only in the lymph node under my arm. (They are not hopeful that this will be the case.) If there is more I will have the chemo / drug options - but will ask about radiotherapy also as you suggest. I have only just stopped wearing my wig from the first round of chemo. I know it's a silly, vain thing but I really don't want to lose my hair all over again.

There are so many drugs in development for Ovarian Papillary Serous. I want somebody in the hospital to explain if these, in theory, can work for us also. Many seem to have achieved good results - parp inhibitors, aurora a kinase inhibitor, herceptin. Anyone been offered anything like this?

Can anyone tell me if it's possible to have remission after the cancer has spread? Or is just a question now of keeping things stable but never being without disease? I find it all so confusing!

I am so hoping it will just be in the lymph node and nowhere else and will somehow never come back. I'm single, have no children and it's so hard to go through this all alone. I want to go out with my friends and go on dates! All quite hard when you're bald and feeling ill. But I feel very grateful to have found this site and the support from everyone here.

Thank you!

Cler XX

Fayard

Cler said:

Hello everyone,
Thanks again
Hello everyone,

Thanks again for all your encouraging words and tips. I am still so frightened but trying to stay positive. Although my diet and exercise regime was good before, I have stepped it up a notch to Veganism and daily exercise, meditation and a range of supplements - vitamins, anti-oxidants, and an immune booster called biobran.

I went last week to a phase I Drug Development Unit at the Royal Marsden in London. There is no one clear answer from what I've been told. Most likely I will offered chemo. They suggested the possibility of including a phase I or II drug in the mix also. Not sure what as yet and they couldn't tell me what the results might be as phase I is very hit or miss. I will certainly let you all know what they suggest.

All of this depends on the PET Scan results and the tissue assay - thanks so much for letting me know I should ask for this!!

Next week I get the PET Scan results. It will just be surgery and radiotherapy if the recurrence is only in the lymph node under my arm. (They are not hopeful that this will be the case.) If there is more I will have the chemo / drug options - but will ask about radiotherapy also as you suggest. I have only just stopped wearing my wig from the first round of chemo. I know it's a silly, vain thing but I really don't want to lose my hair all over again.

There are so many drugs in development for Ovarian Papillary Serous. I want somebody in the hospital to explain if these, in theory, can work for us also. Many seem to have achieved good results - parp inhibitors, aurora a kinase inhibitor, herceptin. Anyone been offered anything like this?

Can anyone tell me if it's possible to have remission after the cancer has spread? Or is just a question now of keeping things stable but never being without disease? I find it all so confusing!

I am so hoping it will just be in the lymph node and nowhere else and will somehow never come back. I'm single, have no children and it's so hard to go through this all alone. I want to go out with my friends and go on dates! All quite hard when you're bald and feeling ill. But I feel very grateful to have found this site and the support from everyone here.

Thank you!

Cler XX

It's been a few months,
It's been a few months, since you were diagnosed.
How are you?