interim status report on my recurrence treatment on the clinical trial.

evertheoptimist

I just started a cycle two of my clinical trial that involves Doxil and an experimental immunotherapy drug called VTX2337. Doxil is given once every four weeks. The experimental drug is given three times during the four week cycle.

This protocol has been rough for me. And, this is saying A LOT coming from someone who went through 18 weekly infusion straight without any break without developing any side effects other than blood count tanking and hair lost. I used to exercise 1 - 1.5 hour daily while I was going through the treatment.

The main reason is not Doxil. I don't develop side effects to the chemo drugs. It's the experimental drug. Its side effects are sever flu like symptoms (most immunotherapy drugs seem to have those as side effects). Boy, they were not joking. The day I get the shot, within 5-6 hours I develop severe chills and fever on an alternating cycle. The whole thing is made much worse because when I get the Doxil IV or this drug shot, I have to stay around 4-8 hours so that they can collect blood for research purpose. Remember, I am on a clinical trial, so I have to be a guinea pig. The next two days at the minimum, I am out of commission.

I hope that the fact that I have these reactions mean the drug is working (VTX2337). Earlier in the year, I was on a preventive cancer vaccine trial. They warned of similar side effects. I developed none. I flunked out of this trial (because I recurred). This time I have all the side effects they warned. So, hopefully, it's actually good that I "suffer" like this.

Anyway, a month after the initial treatment, I feel that it's already working. The creepy sensations in the abdominal and pelvic areas are mostly gone - this was also the case with the initial front line therapy earlier this year: withint 2-3 weeks, I felt that the treatment is working since the sensations abated greatly. my cancer cells proliferate very fast (zero to 100 miles in 30 seconds, sort of - meaning, clean tests and what not to recurrence with tumor implant in mere 3 weeks or so, not like most women whose CA125 rise slowly for a few months before anything is seen on the scan. If the treatment had not been working, the four weeks would have intensified these sensations greatly,, not reducing them. So I am guessing it's working.

Furthermore, today at MSKCC just before I got the second Doxil infusion, I asked them to add TSH (thyroid condition) check to my routine blood test. The result came back very encouraging: it's normal again. This is significant to me: Both at the time of initial diagnosis and the onset of recurrence, my hypothyroid condition went completely out of control though all those years the meds were able to keep in under control. When I was in remission, the number went back to normal.

So, the fact that it's back to normal is encouraging. Since CA125 is not a good marker for those on Doxil initially (if anything, it spikes for 50% of the women even when the treatment is working), I can't use that as a way to get a "peek" at treatment efficacy or lack thereof. (mine spiked 300% after the initial Doxil treatment, and though I knew intellectually all about this spike phenomenon, viscerally, I felt like somebody hit me with a brick when I saw that number - this is where the intellect disconnects from the emotion).

Between this and the abdominal/pelvic sensations that have improved vastly, I am hopeful. However, the scan scheduled 3 weeks down the road will give me a conclusive story on how I am doing. If indeed my hunch is right and the treatment is working, I will be beating the stats again with a wide margin, given the % of those labeled "platinum resistant" (which I am) who respond to the second line treatment is less than 20%.

If I am not right, I will have to eat my words, but then again, it will be the least of my problem, won't it?

lindaprocopio

You seem to know your body well; be optimistic!
I think you have a pretty good read on what's going on in your body. You can take hope in the indicators you see. I envy you that; I never knew I had a new tumor until it showed up on a scan, and until just the last couple of months, have NEVER been able to 'feel' my cancer. Even now my discomfort isn't really in my liver where my cancer is; it's all inflammation in my bowel area troubling me.

I do have to tell you that numerous oncologists AND everything I've read, say that side affects from a treatment in no way is an indicator of whether it is working. You can be bald and nauseated and miserable on a chemo that is doing nothing for you, and you can feel right as rain on a chemo that is shrinking your tumors and effective. Hard for me to verify this in any way with my personal experiences, as taxol was the only chemo that ever consistently worked for me of the many I tried, and taxol just made me bald and tired. I had the hand/foot syndrome on Doxil, & yet Doxil didn't work for me, so that seems to disprove the "side affects = effective treatment." But maybe others here have a different take on that.

Anyhoo,...I do think you can trust your instincts here and relax. (((hugs)))

california_artist

Optimist
Hey, you know what I really like about you? Not only that you take a licking and keep ticking-or that you write so concisely, openly and informatively in very difficult time-or that you do seem to be able to read your body fairly consistently-yes, it's true there is all that, but it's words like these you just wrote-If I am not right, I will have to eat my words, but then again, it will be the least of my problems, won't it?

To see that the humor in your soul is alive and well, just brings a smile to my face. That very humor will serve you well in your journey to wellness. Thank you for everything that I know to be the substance of you,for not ever writing any words to bring an other's hope down but to simply deal honestly with what is your world and sharing it openly and honestly with those who may benefit from your experiences.

On another note, I quickly went on line and there seems to be great enthusiasm for this drug in its ability to bolster the immune system. I so very sincerely hope that this works for you.

In respect, admiration and an appreciation for the ability to find humor in a very difficult situation.

Best wishes,

Claudia

snowbird_11

Thanks, EverTO, for checking
Thanks, EverTO, for checking in and sharing your status update. Great news on the already resolving issues -- the positive thoughts derived from this are sure to enhance your body's response to the treatment. The immunotherapy side effects do sound a bit rough, but hopefully a sign that it is stimulating your immune system. Here's hoping for no 'words' for lunch for you.

evertheoptimist

lindaprocopio said:

You seem to know your body well; be optimistic!
I think you have a pretty good read on what's going on in your body. You can take hope in the indicators you see. I envy you that; I never knew I had a new tumor until it showed up on a scan, and until just the last couple of months, have NEVER been able to 'feel' my cancer. Even now my discomfort isn't really in my liver where my cancer is; it's all inflammation in my bowel area troubling me.

I do have to tell you that numerous oncologists AND everything I've read, say that side affects from a treatment in no way is an indicator of whether it is working. You can be bald and nauseated and miserable on a chemo that is doing nothing for you, and you can feel right as rain on a chemo that is shrinking your tumors and effective. Hard for me to verify this in any way with my personal experiences, as taxol was the only chemo that ever consistently worked for me of the many I tried, and taxol just made me bald and tired. I had the hand/foot syndrome on Doxil, & yet Doxil didn't work for me, so that seems to disprove the "side affects = effective treatment." But maybe others here have a different take on that.

Anyhoo,...I do think you can trust your instincts here and relax. (((hugs)))

actually linda,
there is
actually linda,

there is some body of research that indicates that the side effects correlate with the effectiveness of the chemo drug. For instance, they found a significant long term correlation between survival and neutropenia and neuropathy. Those who developed these on their carbo/taxol treatment had a better long term outcome. I forget the source, but there were some very interesting discussions on this subject on the Inspire.com site.

The side effects I am experiencing is not from Doxil but from the immunotherapy drug. I tend to think the side effects of flu like symptoms (especially fever) may be an indicator that the drug is working as it is supposed to. For instance, there is a research on spontaneous remission and in almost every case, it was preceded by a sever fever due to some kind of infection (unrelated to cancer). The conjecture was, in the process of dealing with the infection, the body's immune system kicked into high gear (hence the fever etc) and the side effects of this process was tumor destruction.

evertheoptimist

california_artist said:

Optimist
Hey, you know what I really like about you? Not only that you take a licking and keep ticking-or that you write so concisely, openly and informatively in very difficult time-or that you do seem to be able to read your body fairly consistently-yes, it's true there is all that, but it's words like these you just wrote-If I am not right, I will have to eat my words, but then again, it will be the least of my problems, won't it?

To see that the humor in your soul is alive and well, just brings a smile to my face. That very humor will serve you well in your journey to wellness. Thank you for everything that I know to be the substance of you,for not ever writing any words to bring an other's hope down but to simply deal honestly with what is your world and sharing it openly and honestly with those who may benefit from your experiences.

On another note, I quickly went on line and there seems to be great enthusiasm for this drug in its ability to bolster the immune system. I so very sincerely hope that this works for you.

In respect, admiration and an appreciation for the ability to find humor in a very difficult situation.

Best wishes,

Claudia

claudia,
you are WAY TOO
claudia,

you are WAY TOO KIND in interpreting my words to the best possible light. Thank you any way, though I think you overshoot!!!

evertheoptimist

snowbird_11 said:

Thanks, EverTO, for checking
Thanks, EverTO, for checking in and sharing your status update. Great news on the already resolving issues -- the positive thoughts derived from this are sure to enhance your body's response to the treatment. The immunotherapy side effects do sound a bit rough, but hopefully a sign that it is stimulating your immune system. Here's hoping for no 'words' for lunch for you.

snowbird,
thanks for your
snowbird,

thanks for your encouragement.

california_artist

evertheoptimist said:

actually linda,
there is
actually linda,

there is some body of research that indicates that the side effects correlate with the effectiveness of the chemo drug. For instance, they found a significant long term correlation between survival and neutropenia and neuropathy. Those who developed these on their carbo/taxol treatment had a better long term outcome. I forget the source, but there were some very interesting discussions on this subject on the Inspire.com site.

The side effects I am experiencing is not from Doxil but from the immunotherapy drug. I tend to think the side effects of flu like symptoms (especially fever) may be an indicator that the drug is working as it is supposed to. For instance, there is a research on spontaneous remission and in almost every case, it was preceded by a sever fever due to some kind of infection (unrelated to cancer). The conjecture was, in the process of dealing with the infection, the body's immune system kicked into high gear (hence the fever etc) and the side effects of this process was tumor destruction.

Ever
Heat destroys cancer cells.

JoAnnDK

evertheoptimist said:

snowbird,
thanks for your
snowbird,

thanks for your encouragement.

Clarity and brevity
Ever the optimist....what a great name....

I agree that the clarity and brevity with which you write makes it very easy to read your posts. Reader are not overwhelmed with extraneous facts and verbiage that are off the topic and make for messy posts.

Thanks so much

JoAnn

sunflash

JoAnnDK said:

Clarity and brevity
Ever the optimist....what a great name....

I agree that the clarity and brevity with which you write makes it very easy to read your posts. Reader are not overwhelmed with extraneous facts and verbiage that are off the topic and make for messy posts.

Thanks so much

JoAnn

Love your news!!
So great to hear your words........always hopeful (with reason to be!) and great info on cutting edge treatment!

I'm so happy for you!!!

Ro10

Optimist thanks for your post
I too am happy to hear that you think this new medications are working for you. Hope the scan will give you the news you want to hear. In peace and caring.