When I talked about the clinical trial yesterday, fretting about its dangerous side effects, I said I have a choice. That's not entirely true. While it's factually correct I'm not obligated to participate in this study, my only alternative is chemotherapy; a treatment with only limited success for me and my type of cancer.
Yes, this study is more dangerous than the Olaparib trial. People have died on the drug. The big unknown about the interactions between the drugs I'd take is scary. Even the most common side effects (experienced by more than 10 per cent of patients) of being on Regorafinib alone don't sound nice:
- constipation, diarrhea, hair loss, headache, high blood pressure, increased blood levels of the pancreatic enzyme called lipase, inflammation of the lining of the digestive tract and of the oral cavity, loss of appetite, nausea, pain (joints, muscles, abdomen, chest), reduced levels of minerals in the blood including calcium, sodium and phosphorus, reduced numbers of red blood cells, reduced numbers of virus-fighting white blood cells, reduced function of the thyroid gland, shortness of breath, skin changes including rash, painful reddening of the skin with or without blistering, itchiness, redness, dryness, and tingling and numbness of the hands and feet, taste alteration, tiredness, voice changes/hoarseness and vomiting.
Those are the most common and benign ones experienced. They escalate from this point (but of course percentage of patients who experience them decreases) to the worst case scenario of death.
But if I look at the other side of the treatment coin, patients die while on chemotherapy. This fatal cocktail causes heart attacks and fatal reactions. It's a toxic concoction designed to kill cells - good and bad - inside the body. This treatment option has its own ugly list of side effects, many of which I've already experienced - twice. As a result, I'm not exactly eager to hop on the chemo bandwagon again.
So, despite the risks, my choice has to be the clinical trial. It may work to give me more time. Perhaps when I'm ready for treatment again, an amazing research breakthrough may give me different, and better, options. Perhaps the Regorafinib will beat those cancer cells into submission, at least for a while. And I know, I always have chemo in my back pocket.
Of course, I still have questions and concerns about the clinical trial, but if I qualify - and it's still a big if since I don't know the size of my tumour and if it's grown to the minimum measurable size - I'm going to sign on the dotted line.
Regorafinib may help me, or the results of my clinical trial may help someone else. It may lead to new, different or novel approaches to treating this awful diease. Who knows, maybe someone else volunteered to be on a clinical trial for a drug that may help me down the road. All of us who volunteer to participate in studies are guinea pigs, not only trying to improve our medical situation, but to help those brilliant doctors and scientists come up with a better way to treat (and beat) cancer.
Tina
You are so right. The helping of our daughters, sons or someone elses children are always in the foremost of any one who has signed up for the clinical trails. While mine was not as significant as yours; thankyou for all the people you will help with this decision that you are making.
ReplyDeleteDITTO to Doris's statement. Thank you.
ReplyDeleteAlso, I'm fairly certain that at least 98% of those side effects are also listed on Viagra, Heart medications, depression medications, Cholesterol medications, etc... I'm also fairy certain you experienced quite a number of those side effects on chemo as well.
It's different. And different is terrifying. Kind of like doing an open water swim in a new lake! haha
Do you know what the "expected results" of this trial are? No surprises like the Olaparib!
Tina, Oh my, the ugly side effects. Don't you just hate reading those lists of unwanted possibilities? Once again, you must focus on the potential. I have no idea what it feels like to be part of a clinical trial. I'm sorry you have to go through all this upheaval, but I'm also glad you have this alternative. I am wishing you all the best and hoping for great results. Good luck!
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