Hi Mehr, I registered last year after someone very close to me was diagnosed and treated - now in remission. I added myself to your list, I hope it will help.
Here are a few things I learned after being closely involved with someone else's treatment. You may have heard all this already, sorry if I'm stating the obvious. But it never hurts to remember!
First: the treatments have gotten incredibly better in just a few years. The science and engineering in this field are progressing at a rate comparable to software. I also learned that age is an important factor: the younger you are, the better your body will react to chemo and transplant. And you live in the US, which has access to the best staff and equipment in the world.
Second: never forget that you can play a really important and active role in your care. Don't be passive! Do research on your own, don't hesitate to make doctors repeat themselves or explain in more detail, and approach the whole thing like teamwork: your doctors and nurses are one half of the team, and you are the other half. Yes, they know what they're doing. But nobody will be more invested in this than yourself. And remember that your state of mind has a true impact on your body.
I hope this helps... Good luck with the search and the treatment.
For your first note: I have done some research and you're absolutely right! What's funny to me is that even if chemotherapy doesn't work, there are essentially plans B, C, D, etc. The new treatments are really really impressive and I'm young.
For your second: yes, I have become very active in this, especially when it comes to nutrition. The unfortunate part though is when there is so much conflicting information from studies, because the role of nutrition in cancer treatment has been only preliminarily studied. For example there is evidence that vitamin C interferes strongly with methotrexate, one of the most common chemotherapeutic drugs. Or a diet high in folic acid could cause similar trouble (when I'm already doing a leucovorin rescue). And then another study about how polyunsaturated fats can cause metastasis -- wait no they are effective against tumors in another study. Anyway my point is that I still agree with you and I ask a lot of questions and am (rather) vigilant, but unfortunately some things just aren't clear and my doctor told me to be a bit calmer about my diet. But how can I, when those nutrients can selectively feed or attack the tumors according to nih.gov! Ah!
First off, I would definitely listen to your doctor when they strongly discourage something. In our case for example, folic acid was also a no-no.
Here's a book that was very useful to us: "The Cancer-fighting kitchen" by Rebecca Katz and Mat Edelson.
One more piece of advice on nutrition (I'm just the messenger here). Listen to your body, at different parts of the treatment it will tell you different things, your tastes will change etc. Also, you can't go wrong drinking lots of water!
Here are a few things I learned after being closely involved with someone else's treatment. You may have heard all this already, sorry if I'm stating the obvious. But it never hurts to remember!
First: the treatments have gotten incredibly better in just a few years. The science and engineering in this field are progressing at a rate comparable to software. I also learned that age is an important factor: the younger you are, the better your body will react to chemo and transplant. And you live in the US, which has access to the best staff and equipment in the world.
Second: never forget that you can play a really important and active role in your care. Don't be passive! Do research on your own, don't hesitate to make doctors repeat themselves or explain in more detail, and approach the whole thing like teamwork: your doctors and nurses are one half of the team, and you are the other half. Yes, they know what they're doing. But nobody will be more invested in this than yourself. And remember that your state of mind has a true impact on your body.
I hope this helps... Good luck with the search and the treatment.