Tuesday, August 14, 2012
I have a serious decision to make tomorrow, with the help of my oncology team and my family. I qualify for several clinical trials; and there are several standard chemo protocols that I could undergo.
The first suggestion is carboplatin, with or without pioglitazone (Actos). Carboplatin has a good track record with triple negative breast cancer, so it was the first thing that popped in my mind after it was confirmed that Xeloda was not doing its job. It is administered via IV, so I would need another surgery to get a port. According to the information below, it's a once a month treatment. I would probably lose my hair again.
http://www.drugs.com/mtm/carboplatin.html
The pioglitazone is an interesting dilemma. I could take it and wouldn't need to take my metformin, which would sound like a reasonable alternative if it were not for today's report in Science Daily which states that Actos increases the chances for bladder cancer when taken for more than one year. It is unlikely that I would stay on it for more than a few months, so I won't rule it out at this point.
http://www.drugs.com/mtm/pioglitazone.html
Here is a Dana Farber research paper which discusses the use of pioglitazone and another diabetic drug in combination with a platin drug to fight metastatic cancer:
http://www.dana-farber.org/Newsroom/News-Releases/Diabetes-drug-dramatically-boosts-power-of-platinum-chemotherapy.aspx
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The next option is ARQ-197. This Dana Farber-centered trial is using an oral chemo with a 21 day cycle to slow down the growth of the nasty cells. This one holds a lot of interest for me, because my rate of growth was 90%. Screamingly fast.
http://www.clinicaltrials.gov/ct2/show/NCT01542996?term=arq197&recr=Open&rank=4
http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2726
Here's a little more info on the drug and its effectiveness in non-small cell lung cancer:
http://investors.arqule.com/releasedetail.cfm?ReleaseID=455781
I'm guessing that there would be no hair loss on this drug and I would not need a port unless it is combined with something else. That makes dosing easy and quality of life is somewhat important. I need to ask a lot of questions about the details that are currently available - results, side effects, etc. Not a lot easily available on Dr. Google.
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The next option is clinical trial ABT888/irinotecan. According to clinicaltrials.gov, this is a Phase 1 trial but it appears DF is doing a Phase 2 arm. This would be an IV drug and apparently causes substantial diarrhea. That could make every day life, travel, etc. a bit of a challenge. Four biopsies would be required during the course of treatment, and it appears there is a 60% chance of losing my hair.
http://www.clinicaltrials.gov/ct2/show/NCT00576654?term=ABT888%2Firinotecan&rank=1
http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2440
http://www.drugs.com/mtm/irinotecan.html
ABT888 is known as a "parp inhibitor" and was hoped to be the major breakthrough for triple negative breast cancer. The jury is still out, and clinical studies are ongoing to determine if it's effective.
http://en.wikipedia.org/wiki/PARP_inhibitor
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Another option in an ABT888 trial is with "cbt" which I think is carboplatin. Not exactly sure, but I think this is the correct translation.
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The next one mentioned is MM121/cetux.
http://en.wikipedia.org/wiki/Cetuximab
Cetuximab is an IV-administered drug, and this trial appears to be a trial to determine safe dosage (Phase 1). I'm not overly excited about Phase 1 trials as the intent is much different than Phase 2. The goal is to determine the safest dose that can be administered without too many side effects. That may be too much "guinea pig" for me at this point. Maybe later in the game, when all else fails.
http://www.clinicaltrials.gov/ct2/show/NCT01451632
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One that I found and that interests me the most is MK-2206. Objective: To determine whether Akt Inhibitor MK-2206 achieves objective tumor responses (CR, PR) in advanced breast cancer patients who have PIK3CA mutation and/or PTEN loss. Secondary Objectives: 1. To determine the 6 month progression-free survival on MK2206.
http://www.dana-farber.org/research/clinical-trials/clinical-trial.aspx?tid=2410
http://www.clinicaltrials.gov/ct2/show/NCT01277757
Interestingly enough, this trial requires a diabetic to be well-controlled on oral meds before being accepted into the trial (as in an a1c less than 8.0). As a matter of fact, most of these trials seem to be rather neutral about diabetics. Not sure going off metformin is wise.
This is an oral med administered in 28-day cycles. The appeal of this trial, besides the oral drug protocol, is that there will be additional testing on my metastatic tissue to determine the PIK3CA mutation or PTEN loss. About 25% of metastatic breast cancers express the PIK3CA mutation. The tumour suppressor phosphatase and tensin homolog (PTEN) is an important negative regulator of cell-survival signaling. In the case of liver cancer, the stronger the PTEN, the better the prognosis. I'd like to know whether or not my cancer is expressing PTEN.
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I found one clinical trial at Sloan-Kettering Memorial that interested me. Of course, it would require travel to NYC, but that is not an impossible task. It uses Abraxane (another form of Taxol which I had last summer) with or without Tigatuzumab. This is an open-label randomized study, so I may be traveling to NYC and be simply getting abraxane, which I could get 20 minutes from home. This probably doesn't make a lot of sense.
http://www.mskcc.org/cancer-care/trial/11-082
http://clinicaltrials.gov/ct2/show/NCT01307891
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This is all pretty technical, and if you've read through all this or clicked on a few links, you have my utmost admiration! It gives you an idea of the complexity of determining which treatment would be the right one. In some ways, you may as well throw at a dartboard and see where it lands. And oh, I haven't even mentioned the other, more traditional chemo options:
Ixabepilone either alone or adding it to the Xeloda I've been taking. This combination scares me a bit as 36% of those patients in the clinical trial experienced grade 4 neutropenia (completely suppressed immune system). There is a good discussion on breastcancer.org with ladies doing Ixempra - the brand name - and it's not an easy chemo at all. It's an IV drug, port required.
http://www.drugs.com/mtm/ixabepilone.html
Navelbine is another standard therapy administered by IV on a weekly basis. There is a 12% chance of hair loss, but nothing else seems any more onerous than any other chemo. The inconvenience factor is high, though - weekly trips for IV treatment.
Gemcitabine (Gemzar) is another weekly IV treatment. Hair loss was less than 15%
http://www.drugs.com/sfx/gemcitabine-side-effects.html
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So there it all is...information to absorb and decisons to make. After doing all this research and reading, I'm leaning towards MK-2206. It seems to hit all the important notes for me: a) learning more about my own specific pathology and my prognosis; b) taking a drug where complete remission is one of the goals; c) continuing on the trial for as long as it continues to work; d) one pill once a week.
Tomorrow's appointment should result in some very interesting discussions!
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You seem well prepared for your appointment tomorrow. I assume your doctors will have a strong opinion as to what will work best for you. I would be nice if you both came up with the same choice. Keep an open mind and do what gives you the best chance at complete remission. As always, you are in my thoughts and prayers.
ReplyDeleteElaine
HI Michelle! I so agree with Elaine. Let the doctors go with the best treatment. Did the docs give you this information or did you find it on google? Sometimes it's best to stay off the internet and go with the best treatment that they see in your case. I am so sorry. I can hardly believe this has struck you...and your family too. It's all around us. I am praying for you right along with others. Tomorrow is a big day here too for Cameron to see if he is close to remission. And if not it's KU. Love ya Diana
ReplyDeleteDiana - yes, this information is all on the internet at official sites like the hospital's own listings, the official government-managed clinical trials site, etc. The list of clinical trials and chemo options came from my oncologists.
ReplyDeleteI appreciate the advice to let the doctors decide. But it doesn't always work that way when dealing with Stage IV cancers. It's quite often left to the patient to decide from a list of options, and that's what my research today was all about. All of those options were mentioned in an email from my oncologist.
I could probably tell them to tell me what to do (they probably wouldn't believe me!) But that's not how I roll. I have to be part of the decision-making team. And we have to consider all the variables.
Wow, Michelle! My head is spinning. I don't know how you are able to assimilate all of this confusing information, much less try to make a decision from so many options. I wish you the best.
ReplyDeleteMichelle, I can't believe how much you have read and gotten out of all this information. My head is spinning, like Sandi's. I do feel being a part of the decision is important, especially when you're doing the research for your particular kind of breast cancer. I wish you much wisdom in your final decision. You are always just so amazing in your research!
ReplyDeleteGood luck tomorrow. I hope your doctor will be able to talk about your choices with some good information from their own experiences with what you are thinking about choosing. Let us know.
Phototaker
I need to add this one to the list for consideration:
ReplyDeletehttp://www.clinicaltrials.gov/ct2/show/NCT00999401
Two oral drugs - I heard from a DF patient who's on our breastcancer.org site that she may be the record-holder for successful treatment with this combination.