I'm beginning to understand something

Hissy_Fitz
Hissy_Fitz Member Posts: 1,834
edited March 2014 in Ovarian Cancer #1
I've wondered, this past year, why we can't just stay on some kind of maintenance chemo after our initial treatment is finished and we are NED, as is so often the case. I asked my Gyn/Onc and he cited several reasons, the primary one being a reluctance to pump poisons into a person's body forever, without knowing if it will, in fact, do any good, or even if it's needed. And, of course, "Someone has to pay for it." That's what he said. Keeping me alive is apparently not high on my insurer's list of priorities. I can see why....if I die,they are off the hook forever.

But I am beginning to understand the other part....about the whole "first, do no harm" thing. I have been on chemo virtually non-stop for almost a year and while the Cancer has not reared its ugly head again, other, previously unheard of things have. I have something going on in my left thumb that may be Gout. Chemotherapy causes Gout. Who knew? The nail on one of my big toes appears to be dying and I am, I fear, in danger of losing it. Chemotherapy can destroy nails. It may also have killed my Thyroid, as my meds have been increased 500% since I began chemo.

So....it has just begun to sink into my thick-as-a-plank head that there are reasons - perfectly good reasons - not to do chemo that you don't absolutely need/have to. Otherwise it can screw up, perhaps forever, other body parts and systems, and still might not keep the monster at bay.

Having committed to a year of Taxol maintenance, I am going to stay the course, if at all possible. Being a quitter is such anathema to me. And I am going to ask my guy about Metformin. I am intrigued by the study that suggests Metformin as a maintenance drug might be effective. But Metformin is about a million miles removed from chemo. Other than that, I do not plan to pursue further chemotherapy unless I (God forbid) exhibit symptoms, or have an upward trend in my CA125. I'm the kind of girl who always favors doing "something" over doing "nothing", but in the case of chemo, I am re-thinking the downside to that particular mindset. I need a strategy between an all-out frontal assault on Cancer and a timid, do-nothing-unless-absolutely-necessary approach to managing my disease.

Carlene

Comments

  • leesag
    leesag Member Posts: 621 Member
    #2
    Hi Carlene,
    I'm sorry to
    Hi Carlene,

    I'm sorry to hear that you're having side effects ;(. I have no suggestions for dealing with them, unfortunately. I was a bit relieved that my doctor didn't suggest maintenance chemo, to be honest, because it meant that I didn't have to make a choice.

    As for actively doing something, I've taken the physical fitness route. I joined Planet Fitness (great rates!) and I do the treadmill for about 45 minutes every morning before work. At my three month check up, I'm going to ask my gyn/onc about strength training.
    I figure that I will feel better, my clothes will fit better, and my body will be better equipped and prepared for the next battle, if there is one. (I'm really not making any changes in my eating habits, I hate mushrooms and, while I like asparagus, once a week is sufficient for that! Plus, I love love LOVE hot fudge sundaes, with nuts!)

    I also decided to treat myself to a manicure once a week :) It's the little things in life that make me happy!

    Hugs!

    Leesa
  • nancy591
    nancy591 Member Posts: 1,027 Member
    #3
    leesag said:

    Hi Carlene,
    I'm sorry to
    Hi Carlene,

    I'm sorry to hear that you're having side effects ;(. I have no suggestions for dealing with them, unfortunately. I was a bit relieved that my doctor didn't suggest maintenance chemo, to be honest, because it meant that I didn't have to make a choice.

    As for actively doing something, I've taken the physical fitness route. I joined Planet Fitness (great rates!) and I do the treadmill for about 45 minutes every morning before work. At my three month check up, I'm going to ask my gyn/onc about strength training.
    I figure that I will feel better, my clothes will fit better, and my body will be better equipped and prepared for the next battle, if there is one. (I'm really not making any changes in my eating habits, I hate mushrooms and, while I like asparagus, once a week is sufficient for that! Plus, I love love LOVE hot fudge sundaes, with nuts!)

    I also decided to treat myself to a manicure once a week :) It's the little things in life that make me happy!

    Hugs!

    Leesa

    I cashed out my retirement and bought a convertible. I did this BEFORE the girl on "The Big C" did it. I thought it was funny that she did the same thing! Has anyone watched The Big C by the way?

    I hated doing nothing when my chemo ended. I didn't even know there was such a thing as maintenance chemo. I remember asking my oncologist and my surgeon if there was anything I could do to increase my odds of staying in remission. In short I was told there really was nothing I could do. I did modify my diet for awhile but ended up with all weird digestive problems. Most recently I did modify my diet again to include the items Dr. Oz suggested on his show.

    I still wonder, Carlene, if taxol will NOT be an option for you if you need it down the road.

    I hope your symptoms abate once you finish your regimen.
  • Tina Brown
    Tina Brown Member Posts: 1,036 Member
    #4
    Thank-you for your posts
    Thank-you for your posts Carlene they are always interesting and informative. I learn something every time I read them. I am sorry to hear you are having problems with the side effects & I hope they will soon disappear as time goes on.

    Tina xx
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    #5
    nancy591 said:

    I cashed out my retirement and bought a convertible. I did this BEFORE the girl on "The Big C" did it. I thought it was funny that she did the same thing! Has anyone watched The Big C by the way?

    I hated doing nothing when my chemo ended. I didn't even know there was such a thing as maintenance chemo. I remember asking my oncologist and my surgeon if there was anything I could do to increase my odds of staying in remission. In short I was told there really was nothing I could do. I did modify my diet for awhile but ended up with all weird digestive problems. Most recently I did modify my diet again to include the items Dr. Oz suggested on his show.

    I still wonder, Carlene, if taxol will NOT be an option for you if you need it down the road.

    I hope your symptoms abate once you finish your regimen.

    Here's the argument my oncolgists gave against maintenance chemo
    Charlene, you remind me of myself, better at 'battle mode' than out of it! I always push for more aggressive treatments and argued unsuccessfully for maintenance chemo. Every person's body has different strengths, though, and my oncologist made a powerful argument that plays to my body's own weakness, which is my ability for my blood counts to recover after chemo. His argument against maintenance chemo for me, was that I need to preserve my bone marrow by taking as many 'safe' breaks from chemo as I can. Any time I am NED, I need to get off chemo and let my bone marrow recoup. Likewise, that is his argument against adding a second agent to my chemo cocktail. He says a harsher chemo combo will just cause my blood counts to tank more quickly and then I will be forced to take a break from chemo at a dangerous time when my cancer may be active. Throughout my treatments these past 2 years he's said to me "We want to kill your cancer, Linda, not kill YOU!" So my oncology team's strategy for me is to administer sequential single agent chemos, and make it a goal to keep me symptom-free by keeping my cancer knocked backed as best as possible. If a remission comes along, we'll all be thrilled, but I get the feeling they don't expect any prolonged remissions for me and just want to keep me with a high quality of life and alive as long as possible. My blessing in exchange for this unending chemo is that I have absolutely no side effects other than the unending baldness.

    For those of you who have bone marrow strong enough to take harsher chemo combinations and to take 'maintenance chemo' to obtain and maintain remission, I don't blame you ONE BIT! I say "Go for it!" if that's what you feel best doing and you don't develop too many side effects. I think it's a crap shoot what the best strategy is, is there even is such a thing as a 'best strategy'. It's all so individualized based on your particular cancer and your particular immune system, each as uniquely different as a snowflake it seems.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #6
    Tina Brown said:

    Thank-you for your posts
    Thank-you for your posts Carlene they are always interesting and informative. I learn something every time I read them. I am sorry to hear you are having problems with the side effects & I hope they will soon disappear as time goes on.

    Tina xx

    I don't regret my decision
    I don't regret my decision to do the year of Taxol maintenance, but I would have to think long and hard before I would sign on for a second year of it. I'm over halfway thru the regimen and Lord knows, the side effects are not depleting my quality of life. I think I'm just in whine mode today.

    Carlene
  • Unknown
    Unknown
    #7
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  • kayandok
    kayandok Member Posts: 1,202 Member
    #8
    Thanks, Carlene
    for that. I'm sorry you are having some side effects, it does tend to put a different perspective on things. You are fotunate that the neuropathy has not kicked in, after that much taxol.

    I totally understand your "all-out-frontal-assualt" fighting spirit. I was told one time by an oncologist who I went to see for a second opinion when I recurred, that I sounded like I was going to war to fight the terrorists, and that no matter how many I killed, there would be more that would pop up. He said I needed to think more in terms of gently co-existing with the enemy. He made me mad and I went back to my surgeon and had a second debulk before going back on chemo. The jury is still out on whether my more aggressive approach has prolonged my life or not.

    Bottom line, we have to do what is in our heart to do to take care of ourselves, and beyond that, it really is up to God to decide the length of our days, and I am more and more at peace with that fact. Maybe that oncologist was more right than I want to believe.

    I am on weekly taxol with carboplatin every 28 days. This is my 4th line chemo. I feel good, although it has only been a month, so I don't know what the tumor marker is doing.

    kathleen
  • vj1
    vj1 Member Posts: 150
    #9
    kayandok said:

    Thanks, Carlene
    for that. I'm sorry you are having some side effects, it does tend to put a different perspective on things. You are fotunate that the neuropathy has not kicked in, after that much taxol.

    I totally understand your "all-out-frontal-assualt" fighting spirit. I was told one time by an oncologist who I went to see for a second opinion when I recurred, that I sounded like I was going to war to fight the terrorists, and that no matter how many I killed, there would be more that would pop up. He said I needed to think more in terms of gently co-existing with the enemy. He made me mad and I went back to my surgeon and had a second debulk before going back on chemo. The jury is still out on whether my more aggressive approach has prolonged my life or not.

    Bottom line, we have to do what is in our heart to do to take care of ourselves, and beyond that, it really is up to God to decide the length of our days, and I am more and more at peace with that fact. Maybe that oncologist was more right than I want to believe.

    I am on weekly taxol with carboplatin every 28 days. This is my 4th line chemo. I feel good, although it has only been a month, so I don't know what the tumor marker is doing.

    kathleen

    Thanks for the input
    Thanks for the input Carlene. Always good to have additional info. I am celebrating today because I just got the call that my ct scan was clear! So girls I am NED!!!
    Mammogram was also clear, Brac test showed no mutations and my CA125 dropped another point; now at 5.1. The stress of waiting for these results take its toll on me. I have to learn to relax and go with the flo. I feel very blessed and grateful for the time I have had so far (dx was 5/09) Friends and family are supportive, but you all are living thru this and it makes a difference to be able to vent on this sight. Thank you all!
  • msfanciful
    msfanciful Member Posts: 559
    #10
    Morning Carlene,
    This 1-year
    Morning Carlene,

    This 1-year taxol maintenance is very new to me.

    I've never heard of it going this period of time. Mine was only for a period of 12-weeks @ once-a-week intervals. Of course the numbers dropped.

    Would you be so kind as to explain to me why the one year period? Was this at the insistence of the oncologist? Were there perhaps other underlying reasons for the specific means of treatment?

    I'll check up on this too, who knows? I may need to ask my doctor if this type of treatment is available to me in the future. God forbid! For now I'm still in remission, but unfortunately the treatment seems to always be worse than the illness; and I hope these symptoms pass over-time for you.

    Thanks,

    Sharon
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834
    #11
    msfanciful said:

    Morning Carlene,
    This 1-year
    Morning Carlene,

    This 1-year taxol maintenance is very new to me.

    I've never heard of it going this period of time. Mine was only for a period of 12-weeks @ once-a-week intervals. Of course the numbers dropped.

    Would you be so kind as to explain to me why the one year period? Was this at the insistence of the oncologist? Were there perhaps other underlying reasons for the specific means of treatment?

    I'll check up on this too, who knows? I may need to ask my doctor if this type of treatment is available to me in the future. God forbid! For now I'm still in remission, but unfortunately the treatment seems to always be worse than the illness; and I hope these symptoms pass over-time for you.

    Thanks,

    Sharon

    Sharon....I have cut and
    Sharon....

    There was a study a couple of years ago, using monthly Taxol as consolidation therapy. The government ended the study early and the data was not saved or evaluated but some doctors, including mine, had achieved some degree of success with the therapy in their practice. My doctor offered me maintenance Taxol, but he definitely did not urge it on me, let alone "insist" on it. He stressed, in fact, that there is no data that says it will prolong my life. The main goal is to push back a recurrence. Virtually no one recurres while on maintenance, so if you tolerate it well, which I have so far, for the most part, you get at least a year of good health. It can be a tough regimen but I have found it definitely more do-able than my initial Carbo/Taxol cocktail. My doctor says this is because it's one drug, given every 4 weeks instead of every 3. The dose is almost the same (about 7/8 of what's prescribed for active treatment).


    I have cut and pasted more info below:

    In the large Gynecologic Oncology Group phase III trial of 3 months vs. 12 months of Taxol given every 4 weeks, patients randomized to the 12 month arm experienced a 7 month improvement in time to relapse. However, because the trial met the stopping rules at the interim analysis, the study was terminated early, so no conclusion regarding effect of consolidation therapy on overall survival can be made. The results of this trial remain controversial for this very reason. Patients in the 12 month arm also experienced significantly more side effects, peripheral neuropathy in particular, and on average only tolerated 9 months of therapy before discontinuing treatment altogether. Stated another way, it is unclear if patients who undergo 12 months of consolidation actually derive an overall survival benefit, but they certainly do incur greater side effects at a time when they only have occult disease, and would otherwise be feeling well. If there is truly no survival benefit to consolidation, it may be that those patients who receive treatment at the time of an actual documented recurrence may still respond as well to chemotherapy as those who receive treatment when the disease is occult. Because of these results, the use of consolidation therapy remains a good option, though it cannot yet be considered standard of care.

    At this point, the Gynecologic Oncology Group's current randomized phase III consolidation trial for patients achieving complete remission after initial surgery and chemotherapy consists of 3 arms: 1) routine follow up with observation with periodic CA125 and physical exam, 2) monthly Taxol for 12 months, or 3) monthly Xyotax for 12 months. Xyotax links paclitaxel to a polyglutamate polymer, and has been shown to become preferentially trapped in tumor blood vessels allowing localization of the chemotherapeutic moiety in the tumor. Monthly Xyotax may also be an option for consolidation.

    There are a few studies using weekly Taxol for this purpose as well. The therapy seems to be well tolerated, but there is yet to be any proven benefit in overall survival, though the therapy may give similar benefits in time it takes for disease to recur.
  • kikz
    kikz Member Posts: 1,345 Member
    #12
    Catumaxomab
    Has anyone heard of this? It is being used in a study wherin it prolongs remission in ovarian cancer. I tried to read up on it but I tend to get lost in medical information.

    Karen

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