has anyone had fewer than the recommended number of chemos because your ca125 went at least below 35

maggie_wilson
maggie_wilson Member Posts: 596
in Uterine/Endometrial Cancer #1
sisters,

i'm going to speak to my doctor on monday and spek with her, then have my 5th of 6 cycles of chemo the following week. if my ca 125 continues to go down as it has been, by the end of the 5th cycle i should be well below 35, knock on wood. what would be the purpose of having the 6th cycle?

i asked a nurse, and really all she could tell me was that it was protocal, the way things are done. what i've gathered from this site and other sources, is that the number of cycles is basically arbitrary. i doubt there are any studies showing the efficacy of having the exact number of recommended chemos as opposed to one less. i just don't think there are any studies on this, nor do i think anyone really knows. i've certainly heard of additional cycles being added, or if a chemo is too rough, having less than originally planned, but i've never really gotten an explanation about why it would be important to have the number of chemos originally recommended if the ca 125 is where you'd want it to be. anyone have any experience with this or any ideas?

thanx,
sisterhood,
maggie

Comments

  • jazzy1
    jazzy1 Member Posts: 1,379
    #2
    Maggie,,,,
    Very good questions and not sure I have the answer, but makes me start thinking. When I was first set-up with my standard protocol -- 6 chemo, sandwiched between 33 external radiation I just went along with my doc. Now you bring up a great point if CA125 is going down and now below 35, why continue with chemo? Could it just be the "standard" followed by the medical community? Have you brought this to your docs yet? I'll bet there's a reason we as lame patients have no clue.

    I will tell you, after each and every chemo session my CA125 went down at a consistent rate. By the last one (remembering I had radiation sandwiched in between) it was a whopping "5". My doc can follow this today for my follow-ups, plus any symptoms I might have.

    Great questions and I'd love to hear what others have to say....

    Hugs,
    Jan

    P.S. Maggie, you feeling okay?
  • Fayard
    Fayard Member Posts: 438 Member
    #3
    jazzy1 said:

    Maggie,,,,
    Very good questions and not sure I have the answer, but makes me start thinking. When I was first set-up with my standard protocol -- 6 chemo, sandwiched between 33 external radiation I just went along with my doc. Now you bring up a great point if CA125 is going down and now below 35, why continue with chemo? Could it just be the "standard" followed by the medical community? Have you brought this to your docs yet? I'll bet there's a reason we as lame patients have no clue.

    I will tell you, after each and every chemo session my CA125 went down at a consistent rate. By the last one (remembering I had radiation sandwiched in between) it was a whopping "5". My doc can follow this today for my follow-ups, plus any symptoms I might have.

    Great questions and I'd love to hear what others have to say....

    Hugs,
    Jan

    P.S. Maggie, you feeling okay?

    Maggie
    My CA125 went down from 8 to 5 to 3 during my 6 cycle treatment.
    My doctor never mentioned stopping chemo because CA125 was going down.

    Bring it up to your doctor and let us know what he says.
  • Ro10
    Ro10 Member Posts: 1,561 Member
    #4
    Fayard said:

    Maggie
    My CA125 went down from 8 to 5 to 3 during my 6 cycle treatment.
    My doctor never mentioned stopping chemo because CA125 was going down.

    Bring it up to your doctor and let us know what he says.

    Maggie, my doctor recommended one more chemo when below 35
    During this last session of chemo, my ca 125 was dropping so quickly, I thought by the 4th chemo it would be below 35. Because we were going back to Illinois for treatment I asked my gyn/ono what his recommendation would be if it dropped below 35. He said he would recommend one more chemo to get rid of any migrating cancer cells that might be left. He also said he did not think it would drop below 35, but would drop by half and then half again. And that is what it did. I started with 1740 before my first chemo, 1530 before 2nd chemo, 456 before 3rd chemo, 118 before 4th chemo, 56 before 5th chemo, 50 before 6th chemo, 43.5 before 7th chemo, and 43.7 4 weeks after 7th chemo. So initially the marker dropped a lot but towards the end, it did not drop as much. I think the 40's is probably my baseline now. My gyn/ono said with a recurrence many times the Ca 125 levels out in the hundreds rather that going below 35, so I feel pretty good with the baseline of 43.

    It will be interesting to see what your doctor has to say regarding your last two treatments.

    Maggie my hydration bags with the cisplatin were Normal Saline with potassium and magnesium before and after the cisplatin. I did not get any benadryl or ativan in those bags.

    Good luck with your last two treatments. In peace and caring.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #5
    Ro10 said:

    Maggie, my doctor recommended one more chemo when below 35
    During this last session of chemo, my ca 125 was dropping so quickly, I thought by the 4th chemo it would be below 35. Because we were going back to Illinois for treatment I asked my gyn/ono what his recommendation would be if it dropped below 35. He said he would recommend one more chemo to get rid of any migrating cancer cells that might be left. He also said he did not think it would drop below 35, but would drop by half and then half again. And that is what it did. I started with 1740 before my first chemo, 1530 before 2nd chemo, 456 before 3rd chemo, 118 before 4th chemo, 56 before 5th chemo, 50 before 6th chemo, 43.5 before 7th chemo, and 43.7 4 weeks after 7th chemo. So initially the marker dropped a lot but towards the end, it did not drop as much. I think the 40's is probably my baseline now. My gyn/ono said with a recurrence many times the Ca 125 levels out in the hundreds rather that going below 35, so I feel pretty good with the baseline of 43.

    It will be interesting to see what your doctor has to say regarding your last two treatments.

    Maggie my hydration bags with the cisplatin were Normal Saline with potassium and magnesium before and after the cisplatin. I did not get any benadryl or ativan in those bags.

    Good luck with your last two treatments. In peace and caring.

    jan, fayard and ro
    thanx for your responses. that's interesting that your doctor, ro, thought the last chemo would be to get any migrating cells that could be left. at least that's a reasonable explanation. i am definitely asking my doctor about all this on monday. she's very open, current, smart, so i can trust what she has to say.

    ro, your baseline of 43 sounds good. i will be very interested to see if my ca 125 drops dramatically in the last one or two cycles, as it did the first 4, or will taper off like yours did.

    thanks for your good wishes.

    sisterhood,
    maggie
  • kkstef
    kkstef Member Posts: 688 Member
    #6
    maggie_wilson said:

    jan, fayard and ro
    thanx for your responses. that's interesting that your doctor, ro, thought the last chemo would be to get any migrating cells that could be left. at least that's a reasonable explanation. i am definitely asking my doctor about all this on monday. she's very open, current, smart, so i can trust what she has to say.

    ro, your baseline of 43 sounds good. i will be very interested to see if my ca 125 drops dramatically in the last one or two cycles, as it did the first 4, or will taper off like yours did.

    thanks for your good wishes.

    sisterhood,
    maggie

    Number of Cycles
    Maggie, I did google "How is the number of Chemo cycles determined" and what I found is that this is generally based on reseearch for the type of cancer you gave, the Grade/stage and one's overall health status. The info Ro shared was also reiterated....the extra 1 or 2 after no signs of active cancer can serve to address any migrating cells that remain.

    I remember when I was first diagnosed there was a uterine cancer study I considered and both arms of the protocol called for SEVEN cycles, 21 days apart. I believe that study has been closed but is probably too early for any conclusions.

    I will be curious to know what your Dr. says!

    Best to you! Karen
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #7
    kkstef said:

    Number of Cycles
    Maggie, I did google "How is the number of Chemo cycles determined" and what I found is that this is generally based on reseearch for the type of cancer you gave, the Grade/stage and one's overall health status. The info Ro shared was also reiterated....the extra 1 or 2 after no signs of active cancer can serve to address any migrating cells that remain.

    I remember when I was first diagnosed there was a uterine cancer study I considered and both arms of the protocol called for SEVEN cycles, 21 days apart. I believe that study has been closed but is probably too early for any conclusions.

    I will be curious to know what your Dr. says!

    Best to you! Karen

    thanx , karen
    the migrating cell theory sounds sensible to me. i'll post whatever my doctor has to say about this. i'm sure she'll be on the side of finishing the 6 cycles. i have only two more cycles left, so i can see the light at the end of the tunnel, but sure would be great to have only one left. i just want to understand the rationale, and not be told simply that's the way it's done. my doctor is very evidence-driven, so she may have seen some studies, etc., that actually show how finishing regimen makes a difference. what i especially like about her, is how thoughtful she is, and i've appreciated the decisions she's made on my behalf.

    sisterhood,
    maggie
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #8
    maggie_wilson said:

    thanx , karen
    the migrating cell theory sounds sensible to me. i'll post whatever my doctor has to say about this. i'm sure she'll be on the side of finishing the 6 cycles. i have only two more cycles left, so i can see the light at the end of the tunnel, but sure would be great to have only one left. i just want to understand the rationale, and not be told simply that's the way it's done. my doctor is very evidence-driven, so she may have seen some studies, etc., that actually show how finishing regimen makes a difference. what i especially like about her, is how thoughtful she is, and i've appreciated the decisions she's made on my behalf.

    sisterhood,
    maggie

    My experience was similar to Ro's; I leveled off in the 40's.
    When I first recurred (2009) I was put on weekly dense dose taxol. By the 8th week my CA15 was in the mid-40's, and it stayed that way the 9th & 10th week, so we paused for a CT/PET scan which was NED. So, because my CA125 had leveled off & it looked like taxol had done all it could for me, & I had a NED scan, I was declared in remission again, & went on a chemo break/monitoring, although I was only halfway through the chemo regime of 18 weekly cycles we'd discussed.

    The way it was explained to me, the chemo drugs kill off all of the weaker cancer cells, but any cancer cells that escape death are cells that were harder to kill. Any lingering harder-to-kill cancer cells now start multiplying more of their kind. That's why they don't go back to the same chemo drug if the time is short between recurrences; it won't work on these super-cells now. I think my cancer is now chemo-resistant because, although some of the chemo drugs I tried knocked back the cancer, each time it was the most powerful unkillablke cancer cells that were left to multiply. So that's why they try their damndest to zap every single cancer cell, even when it seems like overkill when we are the ones getting the poison pumped into us. ((((Maggie))))
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #9
    Personally, I think it would be a mistake to stop early
    Personally, I think it would be a mistake to stop early. CA125 does not give you a binary answer to whether you are in remission or not. There are women who recur at below 35 (the upper limit of normal CA 125).

    Based on everything I read, the important thing is, what is YOUR personal baseline CA125? If that's 10, for instance, the fact that you just entered the "normal" zone by having CA125 of, say 33, does not mean that there is nothing further to do. In fact, you still have way to go, and you still have work to do here. there are also studies that showed en CA 125 nadir below 10 was associated with better prognosis (however, this is actually a controversial point).

    that's why some doctors want to see the number stablize for a few extra weeks to make sure that you reached your PERSONAL nadir of the CA125.

    At the end of my 18 week of dose dense treatment, my CA 125 was 15, and the whole time, it went down every time we checked (every three weeks). It never stalled and seemed not to have reached my nadir, so I pushed for more chemo. But, he resisted it, because of the cumulative side effect potential. In the end, we came to an agreement that I will stop chemo as scheduled but get immediate PET/CT scan and monitor far more frequently than the normal procedure would suggest.

    7 weeks past last infusion, my CA125 was 8. At the same time, I developed neuropathy on my fingers and arms developed a month AFTER the last infusion (which, I am told, is not uncommon). So, both my doctor and I was right. I was right. The chemo, when we ended it, did NOT finish the job - there was more work to do. After the chemo was over, I believe, it was my radically healthy eating regimen and all the supplements that mopped up, and I hope, still are mopping up the remaining cancer cells. My doctor was right in that even though I did not have any chemo side effects during the treatment phase, it was still not a good idea to have more chemo drugs in the system, since some of the side effects developed after the treatment was over.

    In my personal case, it was a right decision not to do more chemo after the full course of 6 cycles (18 infusions), given what my body was able to do on its own. However, I would NEVER stop chemo in mid treatment with the first number dipping below 35. In fact, I believe, if I had not been doing the radical things (like eating close to 20 servings of vegetables day, etc), it would have been a better thing to do a few weeks of chemo in my case beyond the standard recommendation, until the CA125 really showed that it is stalling and showing all signs of having reached its nadir, my personal baseline.

    PS: My CA125 is checked constantly between my PCP, gyn/oncologist and the doctor who is in charge of a clinical trial I am participating in. Last few weeks, my CA 125 has risen to 12.8, but I was forewarned by the trial doctor that the cancer vaccine I have been getting on a weekly basis would elevate the number for a while.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #10
    evertheoptimist said:

    Personally, I think it would be a mistake to stop early
    Personally, I think it would be a mistake to stop early. CA125 does not give you a binary answer to whether you are in remission or not. There are women who recur at below 35 (the upper limit of normal CA 125).

    Based on everything I read, the important thing is, what is YOUR personal baseline CA125? If that's 10, for instance, the fact that you just entered the "normal" zone by having CA125 of, say 33, does not mean that there is nothing further to do. In fact, you still have way to go, and you still have work to do here. there are also studies that showed en CA 125 nadir below 10 was associated with better prognosis (however, this is actually a controversial point).

    that's why some doctors want to see the number stablize for a few extra weeks to make sure that you reached your PERSONAL nadir of the CA125.

    At the end of my 18 week of dose dense treatment, my CA 125 was 15, and the whole time, it went down every time we checked (every three weeks). It never stalled and seemed not to have reached my nadir, so I pushed for more chemo. But, he resisted it, because of the cumulative side effect potential. In the end, we came to an agreement that I will stop chemo as scheduled but get immediate PET/CT scan and monitor far more frequently than the normal procedure would suggest.

    7 weeks past last infusion, my CA125 was 8. At the same time, I developed neuropathy on my fingers and arms developed a month AFTER the last infusion (which, I am told, is not uncommon). So, both my doctor and I was right. I was right. The chemo, when we ended it, did NOT finish the job - there was more work to do. After the chemo was over, I believe, it was my radically healthy eating regimen and all the supplements that mopped up, and I hope, still are mopping up the remaining cancer cells. My doctor was right in that even though I did not have any chemo side effects during the treatment phase, it was still not a good idea to have more chemo drugs in the system, since some of the side effects developed after the treatment was over.

    In my personal case, it was a right decision not to do more chemo after the full course of 6 cycles (18 infusions), given what my body was able to do on its own. However, I would NEVER stop chemo in mid treatment with the first number dipping below 35. In fact, I believe, if I had not been doing the radical things (like eating close to 20 servings of vegetables day, etc), it would have been a better thing to do a few weeks of chemo in my case beyond the standard recommendation, until the CA125 really showed that it is stalling and showing all signs of having reached its nadir, my personal baseline.

    PS: My CA125 is checked constantly between my PCP, gyn/oncologist and the doctor who is in charge of a clinical trial I am participating in. Last few weeks, my CA 125 has risen to 12.8, but I was forewarned by the trial doctor that the cancer vaccine I have been getting on a weekly basis would elevate the number for a while.

    thank you so much linda (as always) and ever the optomist
    great food for thought. thank you for taking the time to post your experience. my ca 125 has not yet leveled off, instead it keeps going down dramatically. i'll have another ca 125 after my 5th cycle next time, and we'll see if it stabilizes or continues to go down. you both make a good argument for staying with the program. i'll know more on monday and will post.

    evertheoptomist, what clinical trial are you in and where are you located?

    thanx again,
    sisterhood,
    maggie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #11
    maggie_wilson said:

    thank you so much linda (as always) and ever the optomist
    great food for thought. thank you for taking the time to post your experience. my ca 125 has not yet leveled off, instead it keeps going down dramatically. i'll have another ca 125 after my 5th cycle next time, and we'll see if it stabilizes or continues to go down. you both make a good argument for staying with the program. i'll know more on monday and will post.

    evertheoptomist, what clinical trial are you in and where are you located?

    thanx again,
    sisterhood,
    maggie

    Maggie,
    I am on a trial for
    Maggie,

    I am on a trial for very high risk women in their first remission in Memorial Sloan Kettering Cancer Center in NYC. This trial is open for ovarian, fallopian tube cancer patients, NOT UPSC. I was very lucky that there was a difference of opinion between my doctor and the hospital pathologist. The official record went in with the pathologist's opinion(ovarian 3C). Meanwhile, a very well known pathologist at Mt. Sinai concurred with my gyn/oncologist that the mine was UPSC 4B.

    The fact that I can be classified as "Ovarian" opened all sorts of doors for me and gave me a lot more options. UPSC behaves very much like OVCA, and should be treated like OVCA because it does not share a lot with other uterine cancers, but because of the terminology, UPSC patients are frequently shafted (e.g., insurance companies claiming that PET is not a standard procedure for uterine cancers, while they cover it for ovarian cancer patients). I have yet to find any UPSC clinical trials either (maybe there are, but they escaped my attention).
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #12
    evertheoptimist said:

    Maggie,
    I am on a trial for
    Maggie,

    I am on a trial for very high risk women in their first remission in Memorial Sloan Kettering Cancer Center in NYC. This trial is open for ovarian, fallopian tube cancer patients, NOT UPSC. I was very lucky that there was a difference of opinion between my doctor and the hospital pathologist. The official record went in with the pathologist's opinion(ovarian 3C). Meanwhile, a very well known pathologist at Mt. Sinai concurred with my gyn/oncologist that the mine was UPSC 4B.

    The fact that I can be classified as "Ovarian" opened all sorts of doors for me and gave me a lot more options. UPSC behaves very much like OVCA, and should be treated like OVCA because it does not share a lot with other uterine cancers, but because of the terminology, UPSC patients are frequently shafted (e.g., insurance companies claiming that PET is not a standard procedure for uterine cancers, while they cover it for ovarian cancer patients). I have yet to find any UPSC clinical trials either (maybe there are, but they escaped my attention).

    thanx evertheoptimist
    i've certainly heard that ovca gets far more attention than upsc. i'm glad for you that there was that disagreement, so that you could enter the clinical trial. if you feel like saying, i'd be interested to know what the protocal is for you. in any case, best of luck.

    sisterhood,
    maggie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #13
    maggie_wilson said:

    thanx evertheoptimist
    i've certainly heard that ovca gets far more attention than upsc. i'm glad for you that there was that disagreement, so that you could enter the clinical trial. if you feel like saying, i'd be interested to know what the protocal is for you. in any case, best of luck.

    sisterhood,
    maggie

    I got a dose dense protocol
    I got a dose dense protocol as a front line therapy. 18 straight weeks of chemo. Each cycle consists of three weeks. Week 1, carbo, taxol, and avastin. weeks 2 and week 3: taxol only.

    Avastin is another issue with UPSC vs. OVCA. I heard many insurance companies refuse to cover Avastin for "uterine" cancer patient, while they cover it for OVCA, though in reality, these two cancers behave very much like each other, the only difference being the primary origin. Again, terminology issue.

    I thought long and hard whether I should insist on radiation therapy or not in addition to chemo. Most UPSC patients seem to get radiation in addition to chemo. My cancer was extensively metastatic all over the abdominal and pelvic area (hence, for UPSC, stage 4B DX). In order for radiation to be effective, it will have to be fully abdominal radition. My dr was against it. A very good friend of mine, who is a well established OB/GYN in NYC, was also against it. Both felt that given how well I was responding to chemo, the risk of full abdominal/pelvic radiation was not worth the risk that is real and could be potentially significant. I think there is where a patient can go either way. I chose not to do radiation. As is, the odds of recurrence for OVCA 3C or UPSC 4B is extremely high. When/if it occurs, I would like to have the radiation arrow still in the quiver. Instead of full blown radiation as a "safety" measure, I decided to join a clinical trial instead to up my odds of longer remission.

    In the end, it all boils down to the risk/benefit analysis of all the options. How would you deploy your arsenal in the battle field, some of which you can use only once or so? I came to a conclusion that the expected long term payoff would be greater if I use the vaccine option now after the initial remission, and leave the heavy artillery with potentially significant side effects for later use under more dire circumstance.

    For my vaccine trial, I get three weekly shots, then 4 weeks break. Another vaccine shot. Then 12 week break, then the final shot. From this point one, every three months full check up with CT scan. I have so far gotten three shots. Next is August 10.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #14
    evertheoptimist said:

    I got a dose dense protocol
    I got a dose dense protocol as a front line therapy. 18 straight weeks of chemo. Each cycle consists of three weeks. Week 1, carbo, taxol, and avastin. weeks 2 and week 3: taxol only.

    Avastin is another issue with UPSC vs. OVCA. I heard many insurance companies refuse to cover Avastin for "uterine" cancer patient, while they cover it for OVCA, though in reality, these two cancers behave very much like each other, the only difference being the primary origin. Again, terminology issue.

    I thought long and hard whether I should insist on radiation therapy or not in addition to chemo. Most UPSC patients seem to get radiation in addition to chemo. My cancer was extensively metastatic all over the abdominal and pelvic area (hence, for UPSC, stage 4B DX). In order for radiation to be effective, it will have to be fully abdominal radition. My dr was against it. A very good friend of mine, who is a well established OB/GYN in NYC, was also against it. Both felt that given how well I was responding to chemo, the risk of full abdominal/pelvic radiation was not worth the risk that is real and could be potentially significant. I think there is where a patient can go either way. I chose not to do radiation. As is, the odds of recurrence for OVCA 3C or UPSC 4B is extremely high. When/if it occurs, I would like to have the radiation arrow still in the quiver. Instead of full blown radiation as a "safety" measure, I decided to join a clinical trial instead to up my odds of longer remission.

    In the end, it all boils down to the risk/benefit analysis of all the options. How would you deploy your arsenal in the battle field, some of which you can use only once or so? I came to a conclusion that the expected long term payoff would be greater if I use the vaccine option now after the initial remission, and leave the heavy artillery with potentially significant side effects for later use under more dire circumstance.

    For my vaccine trial, I get three weekly shots, then 4 weeks break. Another vaccine shot. Then 12 week break, then the final shot. From this point one, every three months full check up with CT scan. I have so far gotten three shots. Next is August 10.

    evertheoptomist
    thanx for your complete response. the dose dense sounds very intense with 18 straight weeks of chemo. how did you do overall--were you very tired, nauseated, or were you one of the lucky ones who doesn't experience many side effects of chemo? still, it sounds like it could have been an ordeal . i, too, chose not to do any radiation; cost benefits weren't good: too much cost, too little benefit. how are you weathering the shots. what are they looking for in this vaccine trial? in any case, best of luck to you.

    sisterhood,
    maggie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #15
    maggie_wilson said:

    evertheoptomist
    thanx for your complete response. the dose dense sounds very intense with 18 straight weeks of chemo. how did you do overall--were you very tired, nauseated, or were you one of the lucky ones who doesn't experience many side effects of chemo? still, it sounds like it could have been an ordeal . i, too, chose not to do any radiation; cost benefits weren't good: too much cost, too little benefit. how are you weathering the shots. what are they looking for in this vaccine trial? in any case, best of luck to you.

    sisterhood,
    maggie

    other than hair falling out
    other than hair falling out and blood count tanking, I had no side effects during chemo. I had lots of energy. I used to get the chemo done in the morning, come home, exercise for anhour and go out for dinner. I did my daily 75 minutes aerobics every day the whole time except when I had a severe cold. No nausea - I have not taken a single anti nausea pill they prescribed. Appetite was not great, but I was disciplined enough to eat all the right stuff. My mind was, and still is, sharp enough to calculate 23 X 78 in my head. I remember every single CA125 number of mine (taken every three weeks), and most of my various blood counts.

    The neuropathy started a month AFTER the last chemo infusion. Not bad, just annoying.

    In terms of the vaccine trial, no biggie. No problem. No side effects to speak of. Just some itching sensation at the site of injection.

    As for the trial, they are looking for very high risk women in their first remission, within 12 weeks from the last infusion that put her in remission. The performance status must be either 1 or 0. They thoroughly examine you to make sure that you are indeed in remission before they enroll you.

    All in all, I feel great. In fact, I never felt this good in years!
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #16
    evertheoptimist said:

    other than hair falling out
    other than hair falling out and blood count tanking, I had no side effects during chemo. I had lots of energy. I used to get the chemo done in the morning, come home, exercise for anhour and go out for dinner. I did my daily 75 minutes aerobics every day the whole time except when I had a severe cold. No nausea - I have not taken a single anti nausea pill they prescribed. Appetite was not great, but I was disciplined enough to eat all the right stuff. My mind was, and still is, sharp enough to calculate 23 X 78 in my head. I remember every single CA125 number of mine (taken every three weeks), and most of my various blood counts.

    The neuropathy started a month AFTER the last chemo infusion. Not bad, just annoying.

    In terms of the vaccine trial, no biggie. No problem. No side effects to speak of. Just some itching sensation at the site of injection.

    As for the trial, they are looking for very high risk women in their first remission, within 12 weeks from the last infusion that put her in remission. The performance status must be either 1 or 0. They thoroughly examine you to make sure that you are indeed in remission before they enroll you.

    All in all, I feel great. In fact, I never felt this good in years!

    evertheoptomist ps
    that's great that you were able to do so much during such an intense chemo, and that you're feeling so good now. mazel tov! were your counts ever so low you couldn't have chemo on those days? i feel every little twinge, nausea, tired during chemo, but this time my hair did not fall out, which i appreciate. still have neuropathy from first chemo, guess it's here to stay. i agree, not bad, but annoying.

    what i meant to ask, was of what does the vaccine consist, if you can say? what is the vaccine meant to do, since you're already in remission? sorry for all the questions, i'm very interested.

    thanx, ever,
    sisterhood,
    maggie
  • evertheoptimist
    evertheoptimist Member Posts: 140
    #17
    maggie_wilson said:

    evertheoptomist ps
    that's great that you were able to do so much during such an intense chemo, and that you're feeling so good now. mazel tov! were your counts ever so low you couldn't have chemo on those days? i feel every little twinge, nausea, tired during chemo, but this time my hair did not fall out, which i appreciate. still have neuropathy from first chemo, guess it's here to stay. i agree, not bad, but annoying.

    what i meant to ask, was of what does the vaccine consist, if you can say? what is the vaccine meant to do, since you're already in remission? sorry for all the questions, i'm very interested.

    thanx, ever,
    sisterhood,
    maggie

    maggie, Toda Rava for your
    maggie,

    Toda Rava for your kind words.

    One of the main reasons for not being able to stick to the dose dense regimen (18 week straight infusion) is neutropenia. Based on everything I learned, you need to minimize any interruption or deviation from the dose dense protocol. Once you start skipping, it defeats the whole purpose of the dose dense protocol that produced amazing results (eye popping results!!!) in a clinical trial.

    So, I made a point of staying absolutely on top of my blood count. I got the blood work done two days before every chemo, and when the ANC number was low, I proactively insisted on getting Neupogen shots just in time for the scheduled infusion. I saved three chemo infusion due to my own advocacy and intervention. If I had left it up to the doctor's office, I would have been told in the morning of the chemo that I neededto skip it due to the low counts.

    In the mid point of the 18 week treatment, it became clear that regular administration of neupogen shots were called for, and from that point on, I got three shots every week.

    I did not have any problem with the hemoglobin or platelet counts. Hemoglobin dipped below the normal range, but still high enough for chemo. Platelet number was always within the normal range. In fact, it went down further after the treatment was over: its lowest point was a month after the last infusion. After the whole treatment was over, it took well over 2 months for my ANC number to come back up to the lowest point of the normal range. Hemoglobin count bounced back almost immediately.

    Regarding the vaccine trial, the vaccine is made of ~5 most commonly overexpressed antigens of the type of cancer the trial covers. Vaccine trials fall into two categories: therapeutic and preventive. Usually, therapeutic vaccines are made from the tumor samples of the patient who is currently in a diseased state. The goal is to let the patient to go into remission. Preventive vaccines work as a prevention. They want to get your body's immune system to be in a top form to fight off any cancer cells so that recurrence does NOT occur. My trial is a preventive vaccine trial. There are trials for women who are already in remission. I believe U Penn is running one of these currently.
  • maggie_wilson
    maggie_wilson Member Posts: 596
    #18
    evertheoptimist said:

    maggie, Toda Rava for your
    maggie,

    Toda Rava for your kind words.

    One of the main reasons for not being able to stick to the dose dense regimen (18 week straight infusion) is neutropenia. Based on everything I learned, you need to minimize any interruption or deviation from the dose dense protocol. Once you start skipping, it defeats the whole purpose of the dose dense protocol that produced amazing results (eye popping results!!!) in a clinical trial.

    So, I made a point of staying absolutely on top of my blood count. I got the blood work done two days before every chemo, and when the ANC number was low, I proactively insisted on getting Neupogen shots just in time for the scheduled infusion. I saved three chemo infusion due to my own advocacy and intervention. If I had left it up to the doctor's office, I would have been told in the morning of the chemo that I neededto skip it due to the low counts.

    In the mid point of the 18 week treatment, it became clear that regular administration of neupogen shots were called for, and from that point on, I got three shots every week.

    I did not have any problem with the hemoglobin or platelet counts. Hemoglobin dipped below the normal range, but still high enough for chemo. Platelet number was always within the normal range. In fact, it went down further after the treatment was over: its lowest point was a month after the last infusion. After the whole treatment was over, it took well over 2 months for my ANC number to come back up to the lowest point of the normal range. Hemoglobin count bounced back almost immediately.

    Regarding the vaccine trial, the vaccine is made of ~5 most commonly overexpressed antigens of the type of cancer the trial covers. Vaccine trials fall into two categories: therapeutic and preventive. Usually, therapeutic vaccines are made from the tumor samples of the patient who is currently in a diseased state. The goal is to let the patient to go into remission. Preventive vaccines work as a prevention. They want to get your body's immune system to be in a top form to fight off any cancer cells so that recurrence does NOT occur. My trial is a preventive vaccine trial. There are trials for women who are already in remission. I believe U Penn is running one of these currently.

    toda rava to you, ever
    for your complete, concise responses. it's great to read your story. i'm assuming your clinical trial is for ovarian cancer, given some of your earlier posts, but given the similarities between ovarian and upsc, i doubt it makes a differece in terms of efficacy.. i doubt there is a clinical trial for upsc, though i expect/hope to be in remission after my last two cycles (4 more infusions). i will be looking for one, of course. also considering high dose iv vitamin c since i've always believed in linus pauling and vitamins. though i must say, given all the vitamins i've taken in my lifetime, they didn't stop me from getting upsc. i do believe in conventional medicine to keep the cancer at bay, but i believe more in alternative medicine to really keep me healthy, so i'll be on a quest.

    i'm in berkeley, ca. near ucsf and standford, but neither has iv vitamin c. there is a clinic, however, in san francisco that administers it, so i'll check them out first. and then start looking on line for clinical trials, etc., wherever they may be.

    i'm keeping my fingers crossed for your preventive vaccine to also have eye popping results! please keep us posted.

    thanx, ever
    sisterhood,
    maggie

Discussion Boards