The double-edged sword of DNA

Asolepius

Graduate Poster
Asolepius
Joined
Jul 5, 2004
Messages
1,150
I have given a lot of thought as to how to start this thread. Last Thursday I learned that I have myeloma. It was picked up pretty much by chance, via a blood test for Raynaud's phenomenon. I then had the full battery of tests - skeletal survey, bone marrow biopsy, urine for Bence Jones protein, etc, and all came up negative except for abnormal bone marrow cells. I have no symptoms and feel very fit.

Needless to say, I don't believe in fate, but my developing interest in critical thinking has put me in a very strong position to cope with this. It has in a way come at the right time (but of course there is no right time for bad news). I don't have to wail `Why is God doing this to me?', I don't have to wonder what I have done wrong to be punished so, and I don't have to agonise over why religion can't explain suffering. I just know it's an unrepaired DNA copying error, and without such errors there would be no evolution and we would not be here at all. There is nobody to blame.

All this concentrates the mind a bit. I'm in rather more of a hurry to get results! This forum continues to inspire me, but I am now catalysing a more concrete effort to make a difference on the sCAM front. Can't say more just yet, but you will start to see things happening within the coming weeks. Watch this space.
 
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I am also sorry to hear the news about your health.

Asolepius said:
Needless to say, I don't believe in fate, but my developing interest in critical thinking has put me in a very strong position to cope with this. It has in a way come at the right time (but of course there is no right time for bad news). I don't have to wail `Why is God doing this to me?', I don't have to wonder what I have done wrong to be punished so, and I don't have to agonise over why religion can't explain suffering. I just know it's an unrepaired DNA copying error, and without such errors there would be no evolution and we would not be here at all. There is nobody to blame.
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I must say that I have nothing but admiration for you in your rational acceptance of the situation.
 
Asolepius...I'm so sorry to hear your news.
Remember there is support for you here...in your rational AND your non-rational moments, as you fight this.
Let us know how you are doing.
 
Bummer.
Potentially Interesting bummer, mind you.
What about the RP? (Only sufferer I know was a forester for years- chain saw vibration damage).

The words "hurry" and "NHS" don't fit well. You going private on this? Keeping detailed records? You plan to do a progress blog / article or something?
(I don't want to seem heartless, it just seems like an opportunity someone like yourself will want to handle as constructively as possible, given that you are stuck with it anyway).

Aside from the routine not praying and not suggesting homoeopathic crystal reiki, is there anything useful the forum might do to assist?
 
Well you should read the first post frozen at the top of this page entitled Doing the least to save your life or something like that. Our mighty Titanium Superhero Fowlsound also suffers from the same tumor (depending on exactly what type of tumor you have but it sounds like the same tumor). I am sure he would be willing to point you in the right direction.
 
I have Multiple Myeloma, as Dogdoctor pointed out. Feel free to PM me.

If I may ask a few questions? How did they determine myeloma without a tumor showing in the bone surveys? Was it a test for monoclonal proteins in the bloodstream?

Two things: 1) multiplemyeloma.org is a great site. 2) Again, feel free to PM me.

There is little understood about what causes the marrow cells to do what they did but that site will cover what is known. You should know that drugs like Revlimid and Velcade are showing excellent promise for treatment. Myeloma is reactive to chemo, but chemo is not neccessarily curative. when the time comes, a marrow transplant may be curative from either self donor or another person donating the marrow.

Stay strong. pm me if you like. I always have time for other cancer patients.

ETA:

http://multiplemyeloma.org/about_myeloma/index.html

full breakdown of myeloma and its start above.
 
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Thanks Fowlsound. The myeloma was picked up from the test for IgA kappa MAB. Skeletal survey was OK, although bones are a bit lightweight - nothing unusual for my age (60). Serum and urinary calcium both fine, renal function apparently fine although they haven't done 24hr urine yet. Of course, I have no idea how long I have had this - might be years. I heard of someone who had it without symptoms for 30 years. Yes, let's keep in touch, I'll PM you later when I've had the more detailed follow-up clinical visit.
 
Soapy Sam said:
Bummer.
Potentially Interesting bummer, mind you.
What about the RP? (Only sufferer I know was a forester for years- chain saw vibration damage).
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The Raynaud's remains unexplained. Least of my worries now.
The words "hurry" and "NHS" don't fit well. You going private on this? Keeping detailed records? You plan to do a progress blog / article or something?
(I don't want to seem heartless, it just seems like an opportunity someone like yourself will want to handle as constructively as possible, given that you are stuck with it anyway).
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I'm not too worried about the NHS not acting promptly, but I am concerned about postcode prescribing. As I get older I am hoping they won't regard me as a lost cause. I stopped private health insurance a few years back, as I'm self-employed and it was costing a bomb.

I think a blog will be a bit boring right now as nothing much is happening, but worth thinking about.
Aside from the routine not praying and not suggesting homoeopathic crystal reiki, is there anything useful the forum might do to assist?
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Not sure what I am expecting really. Moral support is nice, and it's good to have the dialogue with Fowlsound. But really, I just wanted everyone to know how I am handling it mentally. My wife says I am very brave, but not at all - I'm just practical and logical. Funnily enough, it doesn't keep me awake at night (well not much), and I think that's largely related to not needing to moralise over it, or to search for someone to blame. But I am not yet flat on my back with central lines in and vomiting all over the place. Don't know how I will feel then.
 
Les, I'm so sorry to hear this. What type of myeloma? Plasma cell? (Fowlsound, I thought you had a solitary myeloma - has that been upgraded to multiple now?)

Nevertheless, these things can be very slowly progressive, and they're getting better at treating them all the time. I'm rooting for you both.

Rolfe.

PS. Les, you never did get back to mr about the FIBiol thing. Are you still going ahead with it? You have my full support.
 
Asolepius,

First, my condolences on the news, and congratulations on being a thinking human being.

The Leukemia and Lymphoma Society (LLS) website has a great deal of information on myeloma and related diseases, their current treatments, etc. If you are interested in patient support groups, etc, you can also find such information at the website. LLS is big on patient services.

This Sunday I will be in Florida with around 600 other LLS volunteers running in the St. Anthony's Triathlon. The place will be filled with the racers (each having raised thousands of dollars), family members, friends, and current and former cancer patients. It is both a humbling and uplifting experience. Additional info in a PM to come.

Best wishes,

CriticalThanking
 
Rolfe said:
Les, I'm so sorry to hear this. What type of myeloma? Plasma cell? (Fowlsound, I thought you had a solitary myeloma - has that been upgraded to multiple now?)

Nevertheless, these things can be very slowly progressive, and they're getting better at treating them all the time. I'm rooting for you both.
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Actually I don't have any discrete lesions at all, just the abnormal cells in the marrow. It's what's called smouldering myeloma. I did hear of someone who has smouldered for 30 years.

PS. Les, you never did get back to mr about the FIBiol thing. Are you still going ahead with it? You have my full support.
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Oh yes, I am definitely going for FIBiol, but I'm just completing a publication which I think will contribute nicely to that. So it will be a bit more time yet. And thanks very much for your good wishes and support.
 
Rolfe said:
Les, I'm so sorry to hear this. What type of myeloma? Plasma cell? (Fowlsound, I thought you had a solitary myeloma - has that been upgraded to multiple now?)

Nevertheless, these things can be very slowly progressive, and they're getting better at treating them all the time. I'm rooting for you both.

Rolfe.

PS. Les, you never did get back to mr about the FIBiol thing. Are you still going ahead with it? You have my full support.
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Rolfe: My initial presentation was solitary, however since then the spot in my arm and scapula are consistant with myeloma tumors though they have yet to grow. I go through the blood tests, bone surveys and bone marrow biopsies every few months to track if they have progressed.

I have much condolence for Asolepius on the bone marrow biopsies. Nothing brings your week down like being drilled in the pelvis with a corkscrew.

Asolepius: Don't be a stranger. Let me know how things are going.
 
Smoldering myeloma. OK I have a friend with that. Could be a not so bad disease as you have already heard.
 
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