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To Hell And Back - Proved My Doctor Wrong

evertheoptimist
Posts: 140
Joined: Jan 2011

OK. The thread title is a bit provocative. And, I think my doctor would not agree that he has been proved wrong: it would take a completely clean scan to convince him.

But, I think my story may help some people, so I am using an eye catching title. It’s lengthy. Those of you who just want a summary can skip to the last third of the post. (I apologize for any typos and grammatical errors: a bit too lazy to proof read thoroughly).

A bit of history:

• Diagnosed Dec 2010. TAHBSO 12/13/2010

• OVCA 3C or UPSC 4B (ambiguous origin)

• Sub optimal debulking (left a good lime sized tumor behind plus a myriad of smaller ones)

• Dose dense carbo/taxol: 18 straight weekly infusion (Jan 7 – May 6).

• CT scan taken on March 11: small tumors gone. No reduction in size of the main one (the lime sized one).

• PET scan taken on May 18: Completely clean. The lime sized tumor gone. Declared NED. CA125 at the end of the treatment: 12.6 (Labcorp: the lab where CA125 was taken is significant since I have seen consistent and significant difference in one direction though they are using the same reference scale: <35 normal)

• Clinical trial of recurrence prevention: started on June 29 at Memorial Sloan Kettering Cancer Center (MSKCC).

• MSKCC CA125: Jun 24: 8, August 10: 9.

• Around August 20: I started to suspect recurrence: symptoms – unexplained water weight related weight gain (ascites is actually mild/moderate – systemic water retention throughout the body).

• Sept 6: CT scan shows 13 x 8 mm and 5mm tumors. PET taken the next day Sept 7 shows highest SUV value at 5.9. Recurrence confirmed. Thyroid hormone TSH shoots through the roof: over 10. Note that at the time of initial diagnosis, the same happened: TSH extremely high. TSH came back to the normal range during remission. I do have hypothyroidism (last 10 years) but it has always been under control with meds except for these two occasions.

• CA125 (MSKCC) on Sept 7: 32.

• I am not surprised about the recurrence since I already guessed it.

• I was put on a clinical trial consisting of Doxil and an experimental immunotherapy drug VTX2337. Treatment started on Sept 19.

• I felt most symptomatic toward the end of Sept. From the beginning of Oct, I felt that I was responding very well to the treatment: I felt that the treatment was working.

• CA125: Nov 3: 126 (MSKCC): it’s hard to know whether this represents a true state of disease since Doxil inflates CA125 for 50% of the women during the early phase of the treatment (up to 3 cyles)

• CT scan (Nov 8) shows a stable tumor from the previous scan (15 x 6 mm) but two more tumors that were not there (24 x 12mm, 25 x 16 mm) showed up.

• Oct 16 Doctor declared that the trial treatment was a failure based on the scan. I objected that interpretation (I will discuss this below: the heart of the matter for this post). However, I was taken off the trial since the trial protocol clearly stipulates that if there is disease progression as defined by CT results, the trial is terminated.

• Meanwhile, CA125 on Nov 16 was 70 (56 points LOWER than that taken on Nov 3 – less than 2 weeks prior).

• I was given a choice between XL184 trial and Gemzar/Avastin. I chose the latter: I am a high risk patient. I don’t want any clinical trial that solely consists of experimental drug with no proven agent as part of the package deal.

• Nov 18, a new treatment starts: Gemzar and Avastin.

So, this is my brief medical history. What I want to discuss on this thread is the discrepancy between the doctors and me about what happened with my previous treatment on a clinical trial consisting of Doxil and VTX2337. Their verdict was that the treatment failed (based on the scan results). My assessment was that the treatment was a success and was prematurely terminated based on wrong data sets.

Today, I got the confirmation that convinced me that I was right all along: although I doubt that my doctor would be similarly convinced. He is only going by the base line scan taken several weeks BEFORE the treatment started (which, I think, is a WRONG baseline for a reason to be explained later). I am going by all other data (to be explained later) plus, most importantly, how I feel and the signals I am getting from my body.

I would like to first explain why I felt that the clinical trial treatment was working in spite of the CT scan that showed new tumors while I was on treatment. Before I go into the detailed discussion: let’s clarify one thing. My cancer moves from zero to 100 miles in no time. Normally, many women report slowly rising CA125 for a few months before things show up on a scan. In my case, it went from single digit CA125 to 13 x 8 mm tumor in less than three weeks (note: CA125 on August 10: 9, Around August 20: I felt that the cancer is coming back. CT scan on Sept 6: tumors showing). This is a very important factor in my assessment of what happened – to be discussed below.

First Factor: My Cancer –O-Meter

I am incredibly in tune with my body. During the first treatment early this year, within first 2-3 weeks, I KNEW that the treatment was working. The main factor is my “cancer-O-meter”. Sound like a joke, right? But, it’s not. I actually feel the presence of the tumors. It’s like a pulsating, zapping electric signal. When I first diagnosed, I felt them. After the surgery, the sensation abated a bit but still very palpable (not surprising, since I was very suboptimally debulked). Almost immediately after the treatment started, I felt noticeable decrease of these sensations. That’s why I knew that the treatment was working.

Same thing happened. Between the time when my recurrence was confirmed (Sept 6) and the end of September when I felt most symptomatic, the sensation grew stronger by the day. From the beginning of Oct, it started to abate more and more every day.

Second Factor: TSH hormone level

Both my initial diagnosis and recurrence were accompanied extremely high TSH level, while it was normal when I did not have cancer or was in remission. By Mid Oct, TSH was already entering the normal range. By the way, I requested TSH hormone check as part of the monitoring tool. No doctor recommended this. It was my idea based on my observation that TSH peaked both at the time of initial diagnosis and recurrence, while it came back down to the opposite end of the spectrum when I was beating cancer and was in remission later.

Third Factor: Water retention going down.

I gained about 10 pounds of water weight between August 10 and the end of Sept when I was most symptomatic. It’s not just ascites, which is actually quite mild in my case. It was systemic water retention through the body. Week by week, my weight started to come down. I was less and less bloated. By now, I am within 3-5 pounds range from my normal weight.

Fourth Factor: General Sense of Well Being

Except for the time I was reeling from the effects of the experimental drug VTX2337 (fever and chill for 24 hours after the injection), I was feeling better and better. My appetite came back. I was able to go back to the same exercise regimen, etc.

Fifth Factor: My fasting glucose level, which was at the high end of the normal range started to come down also. In my case, not only TSH, which shows most dramatic swing as a result of cancer activities, but also the glucose and the cholesterol level seem to correlate with the cancer activities. However, the swing is more subtle here so hard to be conclusive.

Sixth Factor: CA125

As some of you may know, about 50% of women on Doxil experience an initial spike in CA125 due to Doxil, not due to disease progression. As such, this was not a very good indicator regarding whether the treatment is working or not. However, a general consensus is, after a couple of cycles, this artificial effect wears off and it starts to reflect the actual disease progression or lack there of. In my case, CA125 taken on Nov 16 when they swore that the treatment failed showed dramatic reduction from the CA125 taken around the same time when the CT scan was taken that showed two new tumors. I don’t think this is solely accounted for by the wearing off of the artificial inflation of CA125 due to Doxil. I think this showed genuine improvement already.

But, you may ask, how do you explain the development of NEW tumors while on treatment? Ah….. This is the greatest point of contention. My doctor was convinced that these two tumors developed because the treatment was not working. I have an alternative explanation. I believe these tumor developed between the time when the recurrence was confirmed via a CT scan (Sept 6) and when I was most symptomatic (toward the end of Sept). My doctor did not take this input seriously since it’s ONLY three weeks! (meaning, 2.5 x 16 cm tumor does not grow in three weeks). However, three weeks is a VERY LONG TIME for my cancer to do crazy things. After all, I went from CA125 of 8 to tumor implants in less than 3 weeks! I bet three weeks is a plenty of time for my cancer to grow several new tumor of that size and more. (Note: when I was diagnosed with OVCA 3C/UPSC 4B with EXTENSIVE – tumors were all over the place - abdominal and pelvic mets), it was only 7 months after I had a clean annual physical and gyn exam)

My doc was also skeptical about my assertion on another front. Even if that were the case, if the treatment was working, the tumors should be smaller by the time the CT scan was taken since the treatment had over 5 weeks to work. I have an explanation for that too. During my front line therapy, the main tumor, the size of a lime, did not get smaller in size during the first two months. However, during the latter two months, it disappeared without a trace. Should we assume that the treatment did not work during the first two months, but worked during the last two months? No. I think what happened was, the cancer cells were killed, and as such the tumor was gradually becoming metabolically inactive, but the body flushed it out of the system after it became metabolically inactive (meaning, DEAD). Hence, it could very well be the case that the same thing is happening during this treatment also. Meaning, the mass showing up on the CT scan are not all metabolically active tumors. I know normally the tumors are supposed to become gradually smaller as the treatment is working. I think I am different on this front also: first the tumor dies, then the body gets rid of it.

In short, my assertion was that the masses showing up on the CT scan were tumor that developed while I was waiting for the treatment started, and the tumors are NOT all metabolically active. Not completely dead yet, but largely inactive. Hence, my conclusion, based on this assumption and ALL other data and most importantly, my own subjective assessment (cancer-O-meter), was, the treatment was not a failure.

My doctor did not agree. Furthermore, since this was a clinical trial, his hands are tied. He has to go by the clinical trial rule, and had to take me off the trial because according to the trial protocol, the treatment failed (they go strictly by the CT scan results). He gave me a choice between XL184 trial or Gemzar/Avastin. I chose the latter. One thing I asked him was to give me the prescription for the PET scan that will tell me (and him too) whether the tumors are metabolically active or not. If they are less metabolically active than they were on the Sept 7 PET scan, then I am right. If not, he is. He agreed. So, I took the PET scan on Nov 25.

I did not ask for a PET scan as a pissing match to show who is right: I or my doctor. There were several very rational reasons for this.

1. I need a clear confirmation one way or the other whether I can continue to trust what I think my body is telling me. If I can, I should pay even more attention to all the minute signals and signs as a very important diagnostic and prognostic tool. It allows me to be proactive. If I am wrong, I need to be careful going forward not to be deluded into thinking one way or the other based on what I think I feel.

2. If I am right, it means that Doxil is still a very productive option for me going forward when and if I need it and when it becomes available again. If I simply accepted the verdict from the doctors, then we would not consider Doxil as a drug that works for me. This is very important: as a advanced stage cancer patient, having one more powerful drug that works for me and can be deployed gave me that much more reason for good prognosis.

3. From now on, in order to create a baseline comparison point for whether a treatment is working or not, I need to have a “usable” baseline comparison scan results that is taken almost immediately before or after the treatment started. For me, any scan taken a few weeks before the treatment started is not usable as a comparison point to determine the effectiveness of the ongoing treatment.

4. I learned that at times, you can get back on a clinical trial on a humanitarian ground. If I can prove that the treatment was actually working, and I was booted off of it for a wrong reason, and IF the new treatment is a failure, I can make an appeal and perhaps go back on the trial protocol that that we all agree worked notwithstanding the initial “verdict” of failure.

So, a couple of days ago, the Nov 25 PET scan results came out. It shows decreased metabolic activities compared with the Sept 7 PET scan. I consider this to be a victory. I am convinced that the disease progressed A LOT between Sept 7 and the end of Sept when I was most symptomatic: I could feel my cancer-O-meter registering increasingly stronger signals during this time. I am willing to bet a lot that had I had a scan at the end of Sept, this new scan would have been a very significant improvement over that – which would have been an equivocal evidence that the treatment was working. Alas, I don’t have that accurate baseline. I am guessing that my doctor would still not be convinced – it would take a completely clean scan to convince him so. I am seeing him this Friday…..

I am convinced that the clinical trial protocol was working, and I was booted off of the trial based on a wrong data set. However, I don’t feel too bad about it. Since I started on Gemzar and Avastin, I continue to feel better and better, and my cancer-O-meter signals are so faint and so infrequent I hardly notice them. I feel that this is a triumph of patience advocacy in that I “rescued” a very good drug that will work for me from the trash can of “drugs that don’t work” I can continue to trust my subjective assessment and use that both as a diagnostic and prognostic tool which will let me be proactive in my care and treatment.

Finally, I reject the label that they applied to me: “platinum resistance” (because I recurred within 6 months). I don’t think I am platinum resistant. I think I quit my front line platinum based treatment too soon before it finished its job. The reason is, I was monitoring my CA125 very closely, and I realized that at the end of the 18th treatment, the number was still going down, and had not bottomed out yet. I felt that there is room for further progress. That’s why I felt that I was not done yet. So, when the 18th weekly infusion was over and the san was clear, my instinct was that I needed another couple of cycles (6 more weekly infusions), but my doctor at that time disagreed and gave me a litany of reasons why I should not go further. At that time, I bought into it. Looking back, I think my initial instinct was right there also. So, I think my “recurrence” was not really a recurrence, but rather continuation.

The reason why I feel this ways is this. For most women who were optimally debulked, the effectiveness of chemo is only gauged by CA125, and I can see how in some cases chemo seemed to put the patient in remission (low CA125 number) while it did not really work all that well. However, I started my chemo with a large lime sized tumor. A very good friend of mine who is an OB/GYN and who follows up with all of her patients who become gynecologic cancer patients told me that chemo alone is not likely to get rid of the tumor and I will probably need a second surgery. She was very surprised when the chemo melted away that tumor. So, the proof of the carbo/taxol regimen working for me is extremely LOUD and CLEAR. My OB/GYN friend is also very skeptical about this cavalier application of the term “platinum resistant” solely based on arbitrary 6 month remission criterion. There are a lot of other factors in play and that definition , according to her and I agree, is very arbitrary, ambiguous and vague.

So, moral of the story: patient advocacy matters and matters a lot. Patient’s own subjective assessment can play a very important role to the point that at times, it can trump the test and scans and what not.

So, during last months, I went to hell and back. I was label as an advanced stage cancer patient who is starting fail on treatment for recurrence (we all know what this means) to a patient with aggressive tumors but the tumors that respond to all sorts of treatment – anything they throw, it works. A night and day difference, given that my realistic scenario for long term survival is a well managed chronic disease with a variety of viable treatment option

PS: by the end of this year, I will have taken 7 CT scans and 3 PET scans during the 13 month period. People worry about over exposure to radiation. My goal is to live long enough to suffer the consequences of over exposure to radiation from frequent scans.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Well you have quite a story to tell. I wondered how you were doing - thanks for giving us the update.

Interesting that you talk of additional rounds of tx. I also thought that UPSC patients should get more than the standard protocol. I wonder if a longer initial tx regime would give us better prognosis.

I like your bottom line - that patient advocacy is so important, that you continue to be optimistic that you have many treatment options, and that there is possibility to reenter the study in the future if needed. It is great that you are so in tune with your body- you are very observant and listen well!! Hopefully your docs will continue to respond positively to your findings and requests in the future. You have already done a single subject design research project!!!

Are you feeling well? Do you still follow the diet you were on before? When you know it's OK to discontinue the treatment you are getting now?

Continuing best wishes to you, Mary Ann

evertheoptimist
Posts: 140
Joined: Jan 2011

Daisy,

I am feeling well. Feeling no side effects to the new treatment of gemzar and avastin.

I have a consistent track record of thriving on chemo drugs. Nothing unfazes me. The only reaction so far in this journey was chill and fever to the experimental immunotherapy drug I was on when I was on a clinical trial protocol. But even that lasted only 24 hours.

Realistically, I think the key for my survival is to manage the cancer well as a chronic condition. From this angle, it's fortunate that my body handles chemo so well. I think it's because I am otherwise indestructible. Something to be said about the base line health one starts this journey with.

In order to continue to remain strong and thereby handle all the tough treatment, I am doing my best to eat as healthy as I can. I have to say though, since recurrence, my appetite has not been as good, so the number of vegetable servings I eat a day has gone down. Even so, I still eat very healthy and exercise almost daily. Recently, I also started relaxation techniques and visualization meditation. If not anything else, if it gives me 30 minutes of calm moments a day, that can't be bad.....

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

And you are working fulltime too?

I think the relaxation and visualization are so good. And I need to get back to a routine of this. Did you ever read Simonton's book "Getting Well Again"? He researched end stage cancer patients with fascinating results. Do you think that this might be helping you as well as your general good health and habits?

I also tolerated treatment very well and was in good physical shape before diagnosis and now (though I really need strength training). I have a theory that the immune systems of healthy people successfully fight off most threats including cancer. But it's the nasty aggressive virulent things (like UPSC) that we succumb too. What do you think about this?

evertheoptimist
Posts: 140
Joined: Jan 2011

well, who knows what causes it for sure.

I was a picture of perfect health. Always lived clean and healthy. I was never sick. When the whole town had a cold, I was the only one with nothing. Had a life time habit of regular exercise. Was never overweight. No history of cancer in my family.

All I can do is to manage my health well going forward. I don't think about why. It's fruitless exercise. I just move on.

JoAnnDK
Posts: 276
Joined: Jun 2011

What a saga!

Good luck.

JOANN

Double Whammy's picture
Double Whammy
Posts: 2260
Joined: Jun 2010

I can't believe I actually understood most of what you wrote.

You're simply amazing, Ever. It's good to hear from you and about your status and continued optimism. I'm sure you challenge your docs to think outside the box and beyond the usual standards of practice. Good for you. We are individuals.

May you do well on the Gezmar and Avastin. Keep listening to that cancer-O-meter! And keep being your own best advocate.

Suzanne

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

So good to hear from you, Ever, as you had been on my mind. Indeed, that is quite a saga you have to relate. And I can relate to the sense of what is happening in your body and the cognitive dissonance responses from doctors so tied to their numbers, statistics, accepted standards of care/treatment protocols, etc. Continue to believe in yourself and your cancer-o-meter! Interesting that we are encouraged to monitor our health as the best to know when something is not right, but then find that the MDs still want it all to fit a defined parameter. Stats are based on norms not the complete picture that includes all the outliers.

So wonderful that you have a strong body, able to accept the assaults of these treatments and continue to thrive. But that is the aspect so readily overlooked by the MDs - that an individual's overall health status and resiliency should be considered over historical statistical data. BTW, I had a good response to Gemzar (even as a single agent) for recurrence. The synergy of this combination you are receiving has even better potential.

The additional relaxation and visualization meditations should aid your body in receiving positive healing strength.
Your path through this is important to us, so look forward to your updates.
Here's to your success!
Annie (previously posting as 'upsofloating')

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

Love to read things like this with a patient going to bat for themselves. I'm just like this in I'm doing lots of research and reading, to understand a bit more about my body and cancer.

As I've always said, just because a person has DR. in front of their name, doesn't mean you should rely on them totally. I really don't, as I'm always challenging my docs and in many cases I'm right on the money. If I don't agree with them and we can't come to agreement, I think on it and then come back with my decision.

Remembering these docs are trained in medical school for drugs and so much of what they follow are statistics. As I quote my doc ---- YOU'RE A STATISTIC OF ONE!!! We all don't fit the mold of numbers on the statistic charts, therefore, why always follow what they suggest to be one of those statistic numbers.

Keep on standing up for yourself and become that statistic of one!! You're simply amazing and wish nothing but the best for you.

Hugs,
Jan

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