Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Treatment decision

Harrber
Harrber Member Posts: 9
I have not posted since I first came onto the site - trying to deal with all the issues related to making a treatment decision - a full time job!
I was recently dx with a recurrence of UPSC - although they are not sure if it is the serous or not - since I had a mixed pathology of endometrial and serous - but whatever - I had chemo (carbo and taxol, last February thru April (dx December, hysterectomy January), pelvic radiation and brachytherapy May - July. The recurrence showed up at my 6 month CT scan - very small lymph nodes in two places. Bummer!
I have spent the month talking to my doctor as well as getting a second opinion - I know I am fortunate to be in Boston, where I can do that easily
Anyway , the consensus for now is rather than do chemo again I am starting a clinical trial of a new drug which is a more targeted treatment - I take a pill once a week, and then have a lot of blood work and scans regularly - I am both anxious and hopeful about this - I have spent a lot of time studying the science of this approach (kinase inhibitors if anyone has heard of this) which targets a specific mutation common in uterine cancer.
The "good" news is that both doctors have talked about how tiny these lymph nodes are, that this is the "best" recurrence (how's that for the good news in the bad news!?) I could have, and if this treatment turns out not to be the right one, there are a number of others, including chemo again at some point if necessary.
So, I am getting used to this new reality, hoping for minimal side effects and eager to get started.
We did talk to my doctor about where we should go if we wanted to get an opinion in another city - she said the two places she would go are Sloan-Kettering in NY or MD Anderson in Texas - in terms of where the most research on this disease is going on -
Anyway - fingers crossed - I have had a lot of experience working with people on clinical trials, so it feels fine to me to be doing this - and in some ways exciting (?). We just have to hang in here while science moves forward - this particular study I am in is funded through NIH - the money comes from the Stand Up to Cancer program if anyone is familiar with that - it has generated tons of money and gotten "dream teams" of oncologists from different cities to work together -
Thinking of everyone -

Comments

  • upsofloating
    upsofloating Member Posts: 466
    Decisions are difficult in
    Decisions are difficult in the early recurrence times. The regular monitoring at least keeps you in the know if anything is amiss and you can change direction. I had my first indication of recurrence in Sept (09) and did not start chemo till late January, nearly six months out, with little change in lymph node size in intervening months, was in remission by June with standard second line chemo (chging agents in April) - no hair loss either. No one really believed I was "in chemo", lol.

    I think it's great you are participating in a trial for a potential new treatment that seems quite innocuous compared to the usual chemo infusion center routine. I will be eagerly following your course.

    I'm about to start my fund-raising for a local Relay For Life event I do annually so it's great to know that there are programs that actually specifically support trials of new treatment protocols.

    Best of luck for success with this, Harrber. I'll be pulling for you!
    Annie
  • Harrber
    Harrber Member Posts: 9

    Decisions are difficult in
    Decisions are difficult in the early recurrence times. The regular monitoring at least keeps you in the know if anything is amiss and you can change direction. I had my first indication of recurrence in Sept (09) and did not start chemo till late January, nearly six months out, with little change in lymph node size in intervening months, was in remission by June with standard second line chemo (chging agents in April) - no hair loss either. No one really believed I was "in chemo", lol.

    I think it's great you are participating in a trial for a potential new treatment that seems quite innocuous compared to the usual chemo infusion center routine. I will be eagerly following your course.

    I'm about to start my fund-raising for a local Relay For Life event I do annually so it's great to know that there are programs that actually specifically support trials of new treatment protocols.

    Best of luck for success with this, Harrber. I'll be pulling for you!
    Annie

    thanks
    Annie - thanks so much - when you first hear that you have a recurrence you fantasize that the cancer is raging through your body - and it took me some time to get rid of that notion - helps so much to hear your story - will keep posting about how I am doing on this trial
    Harriet
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    Harrber said:

    thanks
    Annie - thanks so much - when you first hear that you have a recurrence you fantasize that the cancer is raging through your body - and it took me some time to get rid of that notion - helps so much to hear your story - will keep posting about how I am doing on this trial
    Harriet

    My pathology showed "strongly CK7 positive"..
    Hi, Harriet! What clinical trial are you in? I'm currently on avastin/cytoxin for my recurrence, but am very interested in the type of strategy you are taking. My pathology report from my husterectomy showed my cancer as "strongly CK7 positive". I tried to reseach each aspect of that report, and somehow I tie this factor CK7 to the type of treatment you are getting ready to take. I am P53 negative, so I hope I'm not mixing these up. It is all so hard to understand. I'm hoping you can shed some light on these targeted therapies for those of us who have had tissue assays. The traditional chemos don't seem to work on my cancer cells anymore and I need to get creative now.

    My cancer was originally diagnosed as UPSC back in late 2008, but a pathology review at a different hospital changed that diagnosis a year later as a Grade 2/with Grade 3 atypia Endometriod Carcinoma, ER-; PR-; HER2-; and the other factors I already noted. I've had the standard 6 carbo/taxols, IMRT pelvic radiations, brachys. Then with my recurrence: single agent taxol, followed by doxil; followed by carboplatin; followed by the avastin/cytoxin I'm taking now. (Note that the taxol initially put me back into a short remission).

    My recurrence originally showed up at my 6-month-post-initial-protocol checkup, originally in 3 distant lymph nodes. The chemo kept the recurrence confined to my lymph nodes for a year. But a few months ago it spread to my liver. But I remain symptom-free and have a great quality of life and have been lucky to have no side affects from all of this chemo.
  • Cler
    Cler Member Posts: 26
    Lymph node
    Hello,

    I had a lymph node recurrence almost immediately following first line chemo. It was the right axillary node under my arm. It was also small when first found although the hospital took 4 months to confirm and treat. Very angry about this!

    I've had a breast cancer operation with the removal of all nodes under that arm. Pathology showed it was confined to one node. I'm in no further treatment until my next scan although the doctors are so negative and expect a further recurrence in the future.

    Of course I hope this won't be the case but news of your trial gives me hope. Please do let us know how you're doing and what the trial is. I'm in the UK but only 34 so prepared to try anything, anywhere!

    xx
  • Harrber
    Harrber Member Posts: 9

    My pathology showed "strongly CK7 positive"..
    Hi, Harriet! What clinical trial are you in? I'm currently on avastin/cytoxin for my recurrence, but am very interested in the type of strategy you are taking. My pathology report from my husterectomy showed my cancer as "strongly CK7 positive". I tried to reseach each aspect of that report, and somehow I tie this factor CK7 to the type of treatment you are getting ready to take. I am P53 negative, so I hope I'm not mixing these up. It is all so hard to understand. I'm hoping you can shed some light on these targeted therapies for those of us who have had tissue assays. The traditional chemos don't seem to work on my cancer cells anymore and I need to get creative now.

    My cancer was originally diagnosed as UPSC back in late 2008, but a pathology review at a different hospital changed that diagnosis a year later as a Grade 2/with Grade 3 atypia Endometriod Carcinoma, ER-; PR-; HER2-; and the other factors I already noted. I've had the standard 6 carbo/taxols, IMRT pelvic radiations, brachys. Then with my recurrence: single agent taxol, followed by doxil; followed by carboplatin; followed by the avastin/cytoxin I'm taking now. (Note that the taxol initially put me back into a short remission).

    My recurrence originally showed up at my 6-month-post-initial-protocol checkup, originally in 3 distant lymph nodes. The chemo kept the recurrence confined to my lymph nodes for a year. But a few months ago it spread to my liver. But I remain symptom-free and have a great quality of life and have been lucky to have no side affects from all of this chemo.

    clinical trial
    Linda - Here is what i understand - In many if not most uterine cancers, there is a problem with the PI3Kinase pathway - somehow the message gets by the usual blockers and gets to the nucleus to multiply - so the trials I have considered, inhibit this process by actingon one of a few molecules in the cell - mine inhibits AKT - the drug is MK2206 if you want to ask your doctor - not sure if this applies to everyone - but that is the strong trend here in Boston - of course no guarantee it will work for me, which would mean back to chemo again -
    I have not had a complete tissue assay - that will happen in a month or two when Dana-Farber starts doing that -
    Either way - it is always encouraging to hear that people live with this and are able to have a quality of life that makes it all worthwhile
    Harriet
  • SuziDezi
    SuziDezi Member Posts: 25
    Treatment decision
    Hi Harriet

    First I want to say how sorry I am to hear of your recurrence. You are fortunate to be in the Boston area, however, and the trial you are in seems to hold great promise. I am particulary interested in your progress as you and I seem to have been on almost exactly the same treatment schedule. And my November (and February) CT scans (4 and 7 months after treatment ended) showed 2 'enlarged' para-aortic lymph nodes (they are about 10 mm). This was a puzzle to doctors as a scan in April before my last chemo had shown one 'enlarged' node there - but it had shrunk by November and 2 others had appeared. Happily they did not grow any between November and February. As a result my doctor has taken a 'wait and see' approach saying that the possiblity that this is a recurrence is 50-50. Another CT scan is scheduled for May - the doctor is not keen to do a PET because of all the false positives and because he doesn't think it would make the situation any clearer at this point. Where are your suspicious nodes and why are the doctors so sure it is a recurrence? Please keep us updated as you go through the trial. I am sure that I speak for all of us on this board when I say that we are hoping and praying that your new treatment will be a total success.

    Suze
  • daisy366
    daisy366 Member Posts: 1,458
    SuziDezi said:

    Treatment decision
    Hi Harriet

    First I want to say how sorry I am to hear of your recurrence. You are fortunate to be in the Boston area, however, and the trial you are in seems to hold great promise. I am particulary interested in your progress as you and I seem to have been on almost exactly the same treatment schedule. And my November (and February) CT scans (4 and 7 months after treatment ended) showed 2 'enlarged' para-aortic lymph nodes (they are about 10 mm). This was a puzzle to doctors as a scan in April before my last chemo had shown one 'enlarged' node there - but it had shrunk by November and 2 others had appeared. Happily they did not grow any between November and February. As a result my doctor has taken a 'wait and see' approach saying that the possiblity that this is a recurrence is 50-50. Another CT scan is scheduled for May - the doctor is not keen to do a PET because of all the false positives and because he doesn't think it would make the situation any clearer at this point. Where are your suspicious nodes and why are the doctors so sure it is a recurrence? Please keep us updated as you go through the trial. I am sure that I speak for all of us on this board when I say that we are hoping and praying that your new treatment will be a total success.

    Suze

    Harriet
    I am very interested to follow your progress with this research. I have weathered one recurrence with UPSC - orig dx in 9/08, recurrence in 2010.

    Please keep us posted. Thank you. Best wishes to you. Mary Ann
  • Shiela
    Shiela Member Posts: 21
    I hope your treatment goes
    I hope your treatment goes well.I'm starting a clinical trial on April 11 with a combination of MK2206 and Lapatinib. I'd be interested to know how you fare with the MK2206.

    Good wishes.

    Shiela
  • TiggersDoBounce
    TiggersDoBounce Member Posts: 408
    Harriet
    Sending thoughts and prayers your way!

    I too, am treated at the Brigham/Dana Farber.

    Please keep us posted on your progress!

    Laurie
  • Songflower
    Songflower Member Posts: 608

    Harriet
    Sending thoughts and prayers your way!

    I too, am treated at the Brigham/Dana Farber.

    Please keep us posted on your progress!

    Laurie

    Your Treatment
    I am sorry for the recurrance but so excited to hear about a new drug for us! I did a clinical trial for breast cancer 11 years ago. I've heard I'm not a good candidate for trials because of the history of breast cancer. We are proud of you. It sounds like cutting edge treatment!

    Diane