@Ebendana, now that I've officially gone on Medicare, my doctor's office is looking into options. Hopefully they will find something, but I think I have the good-problem-to-have of making too much $$ to qualify. Not by much, unfortunately, and the 5% co-insurance knocks a pretty big hole in what I earn, but I think I'm going to be stuck with the payment unless we can convince the pharma co to cut me a break.
First, I am very sorry to hear about your medical condition. It is a tragedy and horrible to deal with.
My father had non-Hodgkins lymphoma but died from the chemo used to treat him
@Old Microbiologist, I sympathize. My dad died of the exact same "rare" form I have -- Mantle-Cell lymphoma -- and while I don't think the chemo actually killed him, it killed his quality of life. His final chemo was CHOP, and it was brutal. After a while on that stuff he said "No more. If this is what it takes to keep me alive, I'd rather die."
Then I was diagnosed way back as having monoclonal gammopathy which is a precursor to multiple myeloma which bummed me out for a while until I realized it progresses from MSG to MM at a statistical rate of 1% a year. The bummer is there is no effective treatment for MM and the survival rate is 0% at 5 years.
Are you sure? Maybe your form is different, but I have a good friend from college who has been living with MM for 11 years now, and he's still going strong. He did an autologous marrow transplant in 2014, and I think he's on Revlimid.
So not to be sounding too callous but you must look hard at your realistic probability of survival and from that base your decisions.
I did that, looking at the Mayo site, MDAnderson, Johns Hopkins, etc. Their projections were pretty dire, like 3-5 yr survival, and based on my dad's experience it wouldn't be 3-5 fun years. I freaked out.
But then I met with my oncologist, and he said "No no, that's outdated information. We have much better options now." He told me we'd be shooting to put it into remission, and so far (after about 9 months on treatment), it's working like a charm. My drugs are Ibrutinib/imbruvica (made all signs of the MCL vanish in 2 weeks, zero side effects) and Venetoclax/venclexta (minor muscle aches). The studies I've read say that patients ALWAYS relapse on Ibrutinib, and then your options are "dismal" -- no effective treatment, 6 month median survival. But the one-two punch of both drugs is more effective. The main study they did on it ended 4 years ago, and so far basically everybody is still doing great. So doc says he'll guarantee me 4-5 years, and before that runs out, there are already better drugs in clinical trials. He claims I'll die of old age. (Assuming I don't catch Covid, of course -- it hits blood cancers extra hard. 60s-age men with lymphoma have a 50-60% Covid fatality rate, ouch.)
Part of my PhD dissertation dealt with the coupling of the immune and nervous systems. I was working at a cellular level with T-cell lymphocytes and it is well established now that the nervous system has control over the immune system. This is why depression leads to illness. Penile erections are caused by macrophages secreting nitric oxide. There is a long list of connections and erectile dysfunction is linked to chronic inflammation is just one of them and is a good example of the complexity of our systems.
Interesting. Ex-DW dumped me 10 years ago, and things weren't working great even before that, but with the marriage falling apart anyway I didn't stress over it. I have unfortunately been mostly single and celibate since then, so I haven't missed it that much. But I would love to get into another committed relationship, and it would be nice if everything worked. If that's just a secondary symptom of other problems, I should look deeper into it. If you have any recommended treatments, I'd love to hear 'em.
I agree the mind has strong influence on the body. I don't meditate, but I have a pretty positive mental outlook. I would be better if I hadn't had to basically quarantine myself for the last 18 months. I really miss social events, hugs and other physical contact, etc. But I'll look at Norbekov.
A stress-free environment and happy life do a lot more than aggressive therapy and miserable existence. You have to make those choices as to what your situation is and how you want to handle it. Personally, I will never take drugs that are ridiculously expensive.
I'm not a fan of ridiculously expensive. But these drugs are life-savers, so far at least. Without them I would already be starting the downhill slide, and my QOL would be pretty bad. As it is, I feel great, almost zero side effects (except $$$!), riding my bike and going hiking, etc. I'd be living a normal life, traveling, etc if it wasn't for Covid. These drugs have basically stopped the cancer cold. That's worth a lot. Especially if somebody else pays for (most of) it.
I do a lot of nutritional things to help my body fight off the cancer -- based on Jane McLelland's book (How to Starve Cancer), Joe Tippens' protocol, I've even taken huge quantities of THC (which is proven to kill cancer cells). I've improved my diet (e.g. got rid of most sugars, reduced alcohol intake) and I'm exercising more consistently than I ever have in my life. I'm doing what I can to make it difficult for the cancer. And I live in a beautiful lakefront house, so just looking out the window is balm to my soul.