update: chemo options/clincial trial

nancy591
nancy591 Member Posts: 1,027 Member
edited March 2014 in Ovarian Cancer #1
I met with a senior gyn oncologist on Friday. I can't remember everything he said but I left his office feeling good. Not as worried as I have been recently. He said I shouldn't be too concerned about going into remission. He seemed as if going into remission was no big deal. I didn't think to ask if he was acting that way because it is unlikely I will go into another remission. My medical oncologist had mentioned it was unlikely I will go into another remission. At the same time he didn't seem to think it was a big deal. It is all about management of the disease and it was a good thing I was feeling good. Hmmm, though, the more I think about it I can't help but realize it is because he knows, or has a good idea, how my disease will likely progress.

I did ask him about my disease progression and overall survival. He said it is all about how well I respond to the chemo. That is what it comes down to ladies, how well your body responds. Some of us get lucky, some of us are not so lucky. Just because my recurrence was detected earlier did not put me at any advantage. I have a scan next week that will determine my course of action. If the scan is stable or improved I will continue on my current regimen. If any progression is shown I have many options ahead of me. The doctor said I have not had a lot of chemo and there are many good options for me. Either a traditional chemo with avastin or there are two clincial trials at Memorial SLoan that I quailify for. He leaned me toward a phase II trial of an oral mediciation that is similar to avastin. A PHASE 2 STUDY OF ORAL ENMD-2076 ADMINISTERED TO PATIENTS WITH PLATINUM-RESISTANT OVARIAN CANCER
If I do one more chemo regimen I will no longer be eligible for this particular trial. He said the traditional chemos will always be there. Here is an abstract if anyone is interested in reading:

http://www.mskcc.org/mskcc/html/2270.cfm?IRBNO=10-064

If the scan does show progression I will likely decide to join the study since I am symptom free at this time. Although, I am a bit nervous about it and don't like the idea of 'wasting time'. But then again, have the last 8 months of chemo been 'a waste of time'? Like he said, the traditional chemos will always be there and I do have some viable options. I am still hopeful I will find the right cocktail for me!!!

Best of luck to all!!!

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  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #4
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    I think of you, Nancy, and what you said about remission once.
    I remember your comment that you wish you would have known that remission was "the best life was going to get" so that you wouldn't have spent your first remission worrying and anxious. I took that to heart and really lived my 2 short (5 months for the 1st remission, and 4 months for the 2nd) remissions 'full out,' packing in as much fun and memories as I could.

    Like you, my oncologists have hinted that any remissions will be short in comparison to the much-longer times of treatment between them.

    And I think I've learned something about living "in treatment": this may be "the best life is going to get". And, you know, life can be wonderful even with the interruptions of going for chemo and shots!

    I remember my 1st treatment protocol (the 6 carbo/taxol cycles) when I counted down the days until the last one would be over,...actually wished the TIME away so that I could get on with my life (never acknowleging that THIS was a valuable time in my life too!!) I was narrowly focused on my health, thinking that when I got past this 'treatment phase', that I would focus on my family and making memories and my 'bucket list' once I got myself into remission.

    And those 2 short remissions were blissful and full and rich! But now that I'm in treatment for the 3rd time, I think I finally realize that I can't just be focused on my health during the months of treatments. These non-remission months have to be RICH and FULL, too!! After all, "treatment months" may largely define the time I have left!! And though I get VERY tired, and although I have to work around weekly taxol infusions and 3 clinic visits a week for Nuepogen, I am living FULL OUT. And I guess that's what I'm trying to say. You CAN live a full rich life, with good food and good times, even interrupted by chemo, if you are symptom free. Sure, you may be bald and you may be tired and sometimes the party food may taste wierd, but you can still dance at parties and go to rock concerts and vacations and giggle with children and throw back your head and laugh. We all long for remission, but life without remission isn't all that bad! ((((Nancy)))
  • zinaida
    zinaida Member Posts: 221
    #5
    lindaprocopio said:

    I think of you, Nancy, and what you said about remission once.
    I remember your comment that you wish you would have known that remission was "the best life was going to get" so that you wouldn't have spent your first remission worrying and anxious. I took that to heart and really lived my 2 short (5 months for the 1st remission, and 4 months for the 2nd) remissions 'full out,' packing in as much fun and memories as I could.

    Like you, my oncologists have hinted that any remissions will be short in comparison to the much-longer times of treatment between them.

    And I think I've learned something about living "in treatment": this may be "the best life is going to get". And, you know, life can be wonderful even with the interruptions of going for chemo and shots!

    I remember my 1st treatment protocol (the 6 carbo/taxol cycles) when I counted down the days until the last one would be over,...actually wished the TIME away so that I could get on with my life (never acknowleging that THIS was a valuable time in my life too!!) I was narrowly focused on my health, thinking that when I got past this 'treatment phase', that I would focus on my family and making memories and my 'bucket list' once I got myself into remission.

    And those 2 short remissions were blissful and full and rich! But now that I'm in treatment for the 3rd time, I think I finally realize that I can't just be focused on my health during the months of treatments. These non-remission months have to be RICH and FULL, too!! After all, "treatment months" may largely define the time I have left!! And though I get VERY tired, and although I have to work around weekly taxol infusions and 3 clinic visits a week for Nuepogen, I am living FULL OUT. And I guess that's what I'm trying to say. You CAN live a full rich life, with good food and good times, even interrupted by chemo, if you are symptom free. Sure, you may be bald and you may be tired and sometimes the party food may taste wierd, but you can still dance at parties and go to rock concerts and vacations and giggle with children and throw back your head and laugh. We all long for remission, but life without remission isn't all that bad! ((((Nancy)))

    Linda! I think Nancy will be
    Linda! I think Nancy will be agree with me. You are so beautiful inside and outside, you are so smart and have so very good heart. I like very much your posts. About garden, about to cheer up one of as, about new treatments, about yours thinking and many many other topiks. God bless you. I like to thank you for your posts, what always make me feel good for my self, for other memmbers of this board and for you. Thanks again, sincerely, Zina.
  • clamryn
    clamryn Member Posts: 508
    #6
    Been thinking of you
    Nancy, I was thinking of you all day on Friday because I knew you said you were going to the doctor. I am so glad that you are feeling better about what happens next. My doctor says the same as yours. He wants me to live a full life and not dwell on CA125, remission, etc. He says that we just have to manage the disease. I pray for you and your family and think about you with your young children. You are an amazing woman.

    Linda
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #7
    Nancy, my doctor says the
    Nancy, my doctor says the same thing....to survive OC you need a lot of luck and a strong stomach.

    It really is all about finding the drugs that your body responds to. Sometimes it takes a combination of drugs, and that makes it even more of a hit-and-miss affair.

    Carlene
  • upsofloating
    upsofloating Member Posts: 466 Member
    #8
    Thank you so much for
    Thank you so much for sharing this. The gyn-oncs I have seen also discuss managing this cancer as a chronic, rather than terminal, disease -- a very important concept for our mindset in living life, fully and richly. Really, no different than anyone else should do -- we are just made more aware of the reality of doing so. The fact that you are currently symptom-free from the cancer bodes well for continuing your lifestyle, enjoying your children, participating in life. I'm working toward maintaining a positive attitude to living a healthy life without overly obsessing about the details - as though they could make or break my efforts to overcome the disease. Apparently my latest treatment with Gemzar has worked and I will hopefully have a chemo-break. But I'm also so glad to know, as your doctor noted, there are so many other options and new ones in the pipeline should I need them down line. Thinking good thoughts for you and your scan. --Annie
  • saundra
    saundra Member Posts: 1,370 Member
    #9
    Same message
    I got the same message from my gyn/onc last month. I did get an appetite enhancer that is really working. I had lost so much weight since the colostomy in April. It's good to be gaining again. The name of the elixer is Megace Oral and it tastes awful but..... The docs keep saying they have lots of tricks in their bag to try yet... Hand in there with us. Saundra
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #10
    saundra said:

    Same message
    I got the same message from my gyn/onc last month. I did get an appetite enhancer that is really working. I had lost so much weight since the colostomy in April. It's good to be gaining again. The name of the elixer is Megace Oral and it tastes awful but..... The docs keep saying they have lots of tricks in their bag to try yet... Hand in there with us. Saundra

    SAUNDRA: about the Megace
    Hi, Saundra! I just wanted to add that the Megace may also surprise you and keep your cancer from progressing, in addition to the appetite stimulation. It is often presecribed for recurrent endometrial cancer (especially if you know if you are ER (estrogen) positive and/or PR (progesterone) positive; are you??), and in about 30% of the time Megace also stops or slows disease progression. They suggested it as an option for me, but my tissue assays from the needle biopsy cell ground showed that my cancer is now completelt ER negative and PR negative, so Megace won't work for me as a cancer fighting drug. But, in addition to appetite stimulation, I hope you also have this happy 'side affect'!

    It's a pill that's been used a long long time and comes with very little other side affects other than weight gain due to the stimulation of appetite.

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