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

evertheoptimist

I posted on the uterine board, but I would like to share this on the ovarian board also. I have UPSC 4B or OVCA 3C: ambiguous origin. The treatment is same and the prognosis is about the same too. In fact, the clinical trial I am on is for the ovarian cancer patients who are deemed platinum resistant.

here we go.

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. (I know doxil is not to be had anywhere else. Memorial Sloan Kettering had the last remaining full treatment dosage left for a clinical trial patient, and I signed on it the moment it was offered to me: if not anything else, just to get Doxil, but I think the other experimental drug that comes with it is actually working - more later on this).

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?

poopergirl14052

no need to eat words
I am sorry you are going through a rough time..you have been a lot. I am sure your scans will be negative. Stay strong..val

Tethys41

Hoping it works
Thanks for sharing your experience. Would love to hear how it turns out.

Cafewoman53

You will be right !
I'm sure your gut feelings will be right and your treatment is working ! That is very exciting for the rest of us ! Good luck,
Colleen

carolyn45

Incredibly brave
I SO admire how you have come through SO much and keep on plugging. I'd be willing to bet good money that this new protocol is working. You know your own body, and everything you mention points at the cancer receding into never never land. Yippee!! I'll be praying along with everyone else that this is the case. We CAN beat this disease!!

antcat

Dear Evertheoptimist
I wish you alot of luck on your trial. But, I'm curious, how did you find this trial at MSKCC? I go on their website frequently and they seem to be the same trials that were listed from earlier this year. I'm not sure how often they update their trials but it doesn't seem up to date. Did your medical oncologist tell you about this trial? I hope everything works out for you, as I know how bad side effects can be. Take care.

P.S. What stage cancer are you? I'm stage 2.

evertheoptimist

antcat said:

Dear Evertheoptimist
I wish you alot of luck on your trial. But, I'm curious, how did you find this trial at MSKCC? I go on their website frequently and they seem to be the same trials that were listed from earlier this year. I'm not sure how often they update their trials but it doesn't seem up to date. Did your medical oncologist tell you about this trial? I hope everything works out for you, as I know how bad side effects can be. Take care.

P.S. What stage cancer are you? I'm stage 2.

actually, I did not "find"
actually, I did not "find" this trial. this trial was offered to me when I flunked out of the earlier trial. The earlier one was a cancer vaccine trial for women in remission. I found out about this, applied for it, and got accepted. My remission lasted only 3-4 months. When I recurred, so I flunked out of it. When the scan came back positive, the same MKSCC doctor offered to put me on this trial. The amazing thing about this trial was that it came with the full treatment dosage of Doxil, the very drug that cannot be found anywhere else due to the shortage issue, and they had the last dose left for the last trial patient. The doc said, you could change your mind later, but at least if you say "yes", we can put this last dose aside for you. So I did. Then, when I got second opinions (two), they all said "if anybody is offering Doxil, jump right in with both feet!" So I did.

The immune drug VTX2337 was a bonus. However, I have this feeling that this immune drug is really working for me. All the improvement I feel - I kinda think it cannot be due to the first administration of Doxil alone. However, this immune drug is making me sick like a dog - only a few days after the shot, except, it's a weekly shot, so it kills half a week. Yesterday, I met another lady who was on this trial at MSKCC. She said, he has NO reaction to VTX2337....... She is a frail 75 year old. I am the picture of robust health (except for cancer) and tough as a nail. Yet, the drug does not knock her out, but it brings me to my knees.

california_artist

evertheoptimist said:

actually, I did not "find"
actually, I did not "find" this trial. this trial was offered to me when I flunked out of the earlier trial. The earlier one was a cancer vaccine trial for women in remission. I found out about this, applied for it, and got accepted. My remission lasted only 3-4 months. When I recurred, so I flunked out of it. When the scan came back positive, the same MKSCC doctor offered to put me on this trial. The amazing thing about this trial was that it came with the full treatment dosage of Doxil, the very drug that cannot be found anywhere else due to the shortage issue, and they had the last dose left for the last trial patient. The doc said, you could change your mind later, but at least if you say "yes", we can put this last dose aside for you. So I did. Then, when I got second opinions (two), they all said "if anybody is offering Doxil, jump right in with both feet!" So I did.

The immune drug VTX2337 was a bonus. However, I have this feeling that this immune drug is really working for me. All the improvement I feel - I kinda think it cannot be due to the first administration of Doxil alone. However, this immune drug is making me sick like a dog - only a few days after the shot, except, it's a weekly shot, so it kills half a week. Yesterday, I met another lady who was on this trial at MSKCC. She said, he has NO reaction to VTX2337....... She is a frail 75 year old. I am the picture of robust health (except for cancer) and tough as a nail. Yet, the drug does not knock her out, but it brings me to my knees.

Has it given you a fever?
I just read that a fever is showing that enough cancer is being disposed of that the liver is having some trouble keeping up with its filtering job. This would be a good thing, especially if you might be able to get the dose adjusted down some.

evertheoptimist

california_artist said:

Has it given you a fever?
I just read that a fever is showing that enough cancer is being disposed of that the liver is having some trouble keeping up with its filtering job. This would be a good thing, especially if you might be able to get the dose adjusted down some.

claudia,
my fever went up to
claudia,

my fever went up to 104. I was more sick than i ever remember.

LaundryQueen

evertheoptimist said:

claudia,
my fever went up to
claudia,

my fever went up to 104. I was more sick than i ever remember.

Cancer dies at 104 degrees
Cancer dies at 104 degrees Farenheit. I hope you fried a bunch of malignant cells! I think you are getting the "desired response." Good for you!