Hi you are getting some great if some what beating around the bush advice , these folks are being much to nice in their efforts to get you back on track , as Judge Joe Brown says "MAN UP" quit feeling sorry for your self , get in there and let let your oncologist do the job he's getting paid for.
I had a brief period about 4 or 5 minutes where I felt like you are feeling ,then I ask my Oncologist if there was any treatment? (this was in 2004 ) he said yes , I said fine and how long do you think I've got ,he said 3 to 5 years possibily if things go well. He put me on thalidomide & dex along with massive doses of morphine for my back PAIN ,I stayed on the morphine for about 4 months total & stayed on the thalidomide & dex for another 6 mo.
Since then I have been given nothing for the cancer , just go in every 4 months for blood tests * so far so good* Am I in as good shape as I was prior to the coming down with multiple myeloma? I should say not but I'm still enjoying life at 73 tinkering with my hobbies and drinking beer with my buddies.
Do I work? I should say not I don't want to work I put in over 40 years in a high stress job repairing live aircraft for both the military (worked the flight deck of the USS Midway in the Tonkin Gulf ) & civilian aircraft from 737's -to-747's at major airports on the west coast etc.
I think you are looking at this thing incorrectly. Survival is the main objective every thing else is frosting on the cake. It's my opinion that one of the reasons I have survived this long is because it was caught early & treated agressively (& then I'm too blasted ornery to die).
I recently had my 4 months check up & my oncologist told me I was doing fine , I then told him I guess we will be having this same conversation 20 years from now. He just smiled and said maybe so. By the way I was only punchy during the time I was on the liquid morphine once I was off that my mental state was pretty normal -Oh the Dex did give me the jangles when I first started taking it , I'd stay awake for 23 to 28 hours at a stretch.
Best regards N.G.
Forums
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Considering only supportive treatment
I am 69 years old and want to live as long as I am able to live and be productive. I looked hard and deep at what was the best way as proven statistically to accomplish quality of life and longitude of life. Living one day at a time to be a blessing to others.
My cancer was at stage 3. My plasma cells were 50 percent plus cancerous. I had lost about 3 1/2 inches in height. My decision to use drugs was based on the success that the drugs were having to obtain some type of remission and reduction of cancer cells which produce this horrible bone eating protein which can cause renal failure, infections, fractures. As far as the cost of the medications, there is assistance through various organizations so that you can afford treatment.
I write this because my first impressions was no way am I going to subject myself to the medications that were toxic to my body. But the medications to treat multiple myeloma are tolerable and it beats the alternative of no treatment at all. Look at the statistics. Treatment is available and able to give us better quality and quantity in the yeats ahead. I believe that to be true.
God bless you in your decision and in all the days ahead.. I continue with my therapy usingg Revlimid, dexamethasone. and Zometa IV. I have been in therapy since February and I'm respoding well according to my doctor. I'm grateful that we are making progress in this being a treatable disease until someday we find a cure.
My cancer was at stage 3. My plasma cells were 50 percent plus cancerous. I had lost about 3 1/2 inches in height. My decision to use drugs was based on the success that the drugs were having to obtain some type of remission and reduction of cancer cells which produce this horrible bone eating protein which can cause renal failure, infections, fractures. As far as the cost of the medications, there is assistance through various organizations so that you can afford treatment.
I write this because my first impressions was no way am I going to subject myself to the medications that were toxic to my body. But the medications to treat multiple myeloma are tolerable and it beats the alternative of no treatment at all. Look at the statistics. Treatment is available and able to give us better quality and quantity in the yeats ahead. I believe that to be true.
God bless you in your decision and in all the days ahead.. I continue with my therapy usingg Revlimid, dexamethasone. and Zometa IV. I have been in therapy since February and I'm respoding well according to my doctor. I'm grateful that we are making progress in this being a treatable disease until someday we find a cure.
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Edward .G - Name: Ed Garbarino
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 1/2012
- Age at diagnosis: 69
Re: Considering only supportive treatment
I believe it is way too early to make a decision on just receiving supportive care. I just went through the induction therapy on Velcade and Dex last year and I definitely had some bad moments. What kept me going is looking forward to the likely possibility of having a good remission which I am in now. It was worth it. I am back to swimming, cycling, skiing and full time work. It likely will not last forever but even if remission is only a year, even half a year, it will have been worth it all. If I have to do it again there are only a few moments, really only one that I experienced that I would lose sleep at night over if I had to do it again. My sister met a guy who was golfing and has had Multiple Myeloma for 12 years. They just took him off Revlimid maintenance chemotherapy and are currently just monitoring his condition. This could be you, you do not know yet.
I have a very analytical job as well. I work as an engineer for the Navy doing test and evaluation of missile, gun and combat computer systems. Whether it was chemo brain or the opiates and other drugs I was on, last year it was difficult to concentrate on much and I was really tired a lot but I was not a zombie. I worked part time and for period of time not at all. Things seem to be back to normal and I am back full time at work and with no noticeable degradation in my cognitive thinking, though I never could spell very well. I can see under some circumstances there is a time when it can make sense to just receive supportive care, but I believe it is way too early for that decision just after diagnosis, a very emotional time for such big decisions.
I have a very analytical job as well. I work as an engineer for the Navy doing test and evaluation of missile, gun and combat computer systems. Whether it was chemo brain or the opiates and other drugs I was on, last year it was difficult to concentrate on much and I was really tired a lot but I was not a zombie. I worked part time and for period of time not at all. Things seem to be back to normal and I am back full time at work and with no noticeable degradation in my cognitive thinking, though I never could spell very well. I can see under some circumstances there is a time when it can make sense to just receive supportive care, but I believe it is way too early for that decision just after diagnosis, a very emotional time for such big decisions.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Considering only supportive treatment
I'm going to say it.
I admire your honesty. I cannot know what it's like to have to make that decision. You seem like you've explored all your options and are making a logical, not emotional, decision for yourself and everyone your life touches.
If treatment is what YOU desire, then you should explore it. If you decide after much soul searching and research that you know you would like "nature to take its course," then I believe you have the right to do that without pressure.
I wish you the best, Patiently, and hope you find peace in whatever decisions you make.
I admire your honesty. I cannot know what it's like to have to make that decision. You seem like you've explored all your options and are making a logical, not emotional, decision for yourself and everyone your life touches.
If treatment is what YOU desire, then you should explore it. If you decide after much soul searching and research that you know you would like "nature to take its course," then I believe you have the right to do that without pressure.
I wish you the best, Patiently, and hope you find peace in whatever decisions you make.
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gjensen31 - Name: Grace
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Dec 2011
- Age at diagnosis: 54
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