I have been meaning to update you all on my progress and kept waiting on getting all the info I was trying to gather. I had the last appointment I was waiting for this morning but it didn’t turn out the way I wanted so I am still missing info but I can update you on what I know.
I am always reluctant to post the dates of my scans. When the results are not what I want them to be, I need some time to digest and process the information before I can talk about them. Now I am happy to say that I had a scan 2 weeks ago and the results were positive. Remember, in the world of Stage 4 cancer “stable”is deemed really good. It is still a bit hard for me to embrace the concept but this time around, I was also told that there was “slight” regression in tumors so I was quite happy about that. I have now had 6 infusions of this chemo and from asking my docs, I don’t get the sense that they will take me off this cocktail for a while, so most likely it will be more than 12 rounds… So far I have been tolerating it pretty well so I am ok with that. This last infusion kicked my butt but probably because my white blood cells count was low, something very typical but I will try to make some adjustments. I take a ton of supplements, am still very involved in my RRT with clinical hypnosis, and just started a seeing a chiropractor who does energy work (who I really like… and I am quite picky!) so I am hoping that all this will help.
I mentioned that I have done a ton of research lately and wanted to update you all. I was more specifically looking into immunotherapy trials and after having a really good session with my beloved GI oncologist at Shands, we decided that now was not the right time for me. Since I am responding to my cocktail, I should stay on it. Stopping to do something that might or might not work does not guaranty that the cocktail that I am on currently will work again if we decided to restart it. My GI oncologist believes that new immunotherapy trials are right around the corner and would be better than the ones already available. My issue is that I believe people wait too long to get into trials and it is too late, they are not healthy enough so I feel like I should jump into one while I am healthy (well that sounds funny to say but I do feel pretty healthy!).
One study we have not ruled out is called the “fruit fly study” where they do genomic testing of your tumor then run their results into really sophisticated computer programs and look at all the FDA approved drugs that could stop your cancer from growing, this is part of personalized medicine. Then once they have identified drugs (and sometimes combos), they test their results in fruit flies! They would inject the “Rachel flies” with my tumor then test the drugs. It sounds super promising but it takes a lot of time and they may not find anything in the end. There was a recent case in Vancouver (Canada) of a woman with colon cancer who had weeks to live and they found that her cancer could be stopped by a beta-blocker (a blood pressure medication) and in 5 weeks, she had no evidence of disease in her body! That’s a “bingo” case, the article didn’t say how many cases were not successful or what their percentage of success was (and they did not use fruit fly models – clinicians identified the drugs that might work given the results obtained from their computer programs). There is a super interesting article about the fruit fly study, here’s the link: http://classics.esquire.com/junod-stephanie. It is super long but IT describes “patient 0”, a woman from Mississippi who was helped by 2 journalists to get into this study (I guess informally since it is not yet IRB approved). Sadly, it seems like she was getting subpar care back home and passed before they could administer the cocktail they had found for her. In any case, I am on the wait list for this study and might be traveling to New-York, to Mount Sinai to be part of the study. Since it can take 9 months to (possibly) get to a cocktail, I feel like I have not much to lose. I can stay on my current regimen while I wait for the results. My GI oncologist said testing the drugs on mouse models would be better, but then you have to go privately and the costs could be around 30K – and what if in the end they have no cocktail?
In the mean time, my research lead me to a clinical trial out of Seattle where the principal investigator/oncologist is trying a combo of chemo and Celebrex, a drug used for arthritis. To make a long story short, the theory behind using Celebrex is that it can take the “invisibility cloak” off the stem cancer cells. Apparently chemo has a hard time recognizing the stem cells because they have some sort of invisibility cloak. Celebrex makes them visible and chemo can see them and kill them off. According to this oncologist, he has a 50% complete response in Stage 4 colon cancer patients. He likes to use this combo as “maintenance” therapy but I reached out to him to ask him what his thoughts were on adding it to the cocktail I am on. His responses were a bit contradictory but my GI oncologist at Shands is involved in a nationwide trial looking at the first cocktail I was on in combination with Celebrex so I was confident that he was familiar with the literature. He agreed that it would be a good idea to add it, now we are fighting with my insurance company to get it approved as they denied it, it is quite costly but I am confident I’ll find a way to get it. I am excited about adding it and really hope it will make a big difference. I also asked my GI oncologist about the new “hype” on fasting and the immune system. Some suggest fasting 72 hours before chemo – he wasn’t thrilled about the research so far and didn’t think it would make a huge difference for me. I was ok because the idea of fasting 72 hours before chemo (on my good days) was not too appealing.
I know this was a long post, maybe not too interesting but I know other fighters read my blog and if my research can help others, it is all worth it. I have met incredible Stage 4 fighters who have helped me tremendously and make me sound smart with my doctors! My GI oncologist at Shands even said that my local oncologist should pay me for CMEs with all the research I bring up – that was an amazing compliment coming from him.
I have more questions that need to be answered and hope to update you soon! In the mean time – forward I go!