Refusing treatment

Is anybody on here with Myeloma in stage 1 refusing chemo treatment and what are the odds?

I'm inclined to do the same.  May I ask your thinking?

myeloma is basically treated the same regardless of your stage.  Stage only indicates tumor burden and does not indicate how aggressive the cancer may or may not be.  treatment is an individual choice.  however, it's highy unlikely your myeloma is going away on its on.  it's far more likely the disease will gain strength and be much more difficult to fight the longer you wait.  there is some truth to the phrase, "catch it early."  you may feel fine now, but if your spine, ribs, large leg bones, or organs begin to break/fail, you're going to have a much more difficult battle ahead of you.  don't fear the treatment, fear the cancer.  myeloma is very tricky and very serious....it will break you down...literally

On Aug 03, 2012 12:46 PM gsulli wrote:

I'm inclined to do the same.  May I ask your thinking?

Well, how I see it is, if its incurable why would you want to put yourself through all that pain and sickness of chemotherapy if there is no outcome to it. I am not having any treatment at the moment as I have been on watch and wait, as in smoldering, however due to see haemo next week but have pain in my ribs now that I have never had before so see that as maybe moving along. Have had all the tests and there was no sign of of anything on MRI, a 'divet' on my arm that after a second opinion was not necessarilly anything to do with Myeloma. Failed the light chain, protein and bone marrow biopsy test, lol I know wveybody has different opinions, this is just mine, doesn't make it right, of course!

But to mouseyf's point, does treatment merely delay the inevitable?  Are we not going to face the same nasty end sooner or later?

.....with that line of thought, you might as well stay in bed;  death is the inevitable.  quality of life before death is something you can have a say in.  true, there's a limit to the treatment options for me.  i won't consider an allo transplant.  however, i know too many with myeloma who are living wonderful lives...back to work, physically active, etc...who have treated their myeloma with one form of chemo plan or another.  to ignore your myeloma is to ensure the inevitable painful death...broken bones and failing organs.  but, we all have that choice.  go to the facebook myeloma support group and see for yourself the hundreds of patients living full lives even after receiving treatment.

not completly unrelated, but do you supposed prisoners of war who survived ever looked back and wished they had never put up the fight to live despite the hardship they knew they would endure from the moment of capture? i suspect many fought the fight for those that love them more than for themselves.  would your loved ones rather see you sick from fight or sick from surrender? 

http://www.facebook.com/groups/108654495840465/

On Aug 03, 2012 7:45 AM Mausyf wrote:

Is anybody on here with Myeloma in stage 1 refusing chemo treatment and what are the odds?

mausyf

i think i have wrote to you before, if i haven't here's a heads up i was told i had ,mm in dec.1995 in stage three i had no pain no medical proublems at all except chlos. and tryic. which i was being montined by my g.p. monthly. On a routine visit he told me that he noticed a rise in some numbers in my blood test after checking back 6 months. He said i should see a hematologist and set up an appointment. the tests confurmed  mm stage 3. The point is you lucked out, they found yours early with luck and the right doctor and treatment for your personal mm stage you might have an easy time of it.True yoou will not be cured but at this time 2012 there are many treatments available to you where i stood there was only one and that was in affect a toss of the dice as to survival. I can truly say the man up stairs was watching over me, this dec. makes 17 years where in 1995 thet had a hard time telling if i am lucky mabe 3 years that was a guess for my benefit they didn't really believe it and knorr did I. All I can tell you I you have want to last as long as you can so in time other treatments will be out and life will become easier. You ask about the odds, well they are a hell of a lot better now then in 1995. Your statment says you want to wait, well if you do the odds you asking about will possibliy turn totally against you. One more thing you should think about is that LIVING IS HARD  DYING IS EASY

GOOD LUCK ON YOUR CHOICE

PRETZEL

I think I may have told you it was my haemos decision to watch and wait and be monitored! I didnt say I wouldnt have chem, I just asked whether there were people out there that have refused some treatment and what the odds were.

On Aug 04, 2012 11:52 PMMausyfwrote:

I think I may have told you it was my haemos decision to watch and wait and be monitored! I didnt say I wouldnt have chem, I just asked whether there were people out there that have refused some treatment and what the odds were.

Sorry mausyf

I got a wrong signal from you. But what i sent you today his not false info. I had to live it, i'll tell you the truth it's not easy. You will need a great deal of support from friends and family if you are going to survive. Get eduicated on all treatments available before you choose one and if the doctor cannot explain exactly how he intends to procedure get a second opinion. The doctors you pick should be familar with mm not only in theray but have treated patients themselves. If you find a doctor, check him out with the a.m.a. on the web. Just the way you would a business with the b.b.b. again i speek from experence one was to busy telling what medical proublem i had and did not listen when i told him it was side effects of a new cancer medication that sent me to the hospital. He evenj went as far to try scaring me when i refused to continue taking his rx. And did the same caution to my wife. I took no time in closing the door behind me. Again this is what i've been through. But i learned as i went because before 1995 i never heard of mm. And the protocal they gave me to read about the results ofthe trials that took place in ark. Showed 40 % of patients did not live tofinish.theodds were poor verypoor.todaythe medical field has so many more options for you to take. Not doing anything should not be one of them. I joined cancer compass as a survivor and to give and recieve support. Thats what i'm doing. I don't advise anyone as to how to proced i just tell them my own experence so you have some idea of what might be ahead. As i told when they diagnosed me with mm stage 3 i had no idea that anything was wrong i wish tey would have found out months earlier mabe in stage 1 but what is and you expect it and don't look back just forward. Any decison you make should be yours and yours alone upon careful thoughtb and study. Good luck and if you need to talk i'll be here.

Pretzel

On aug 03, 2012 7:45Mausyfwrote:

Is anybody on here with Myeloma in stage 1 refusing chemo treatment and what are the odds?

1998 in connection with a diagnosis of the disease sarcoidosis was found that I had MM stage 1. Läkarrnna said that as long as I had the blood tests I had and had no pain in bones there was no idea of treatment, only control four times a year I lived well into late 2007 when I started to get some pain in the bones.

Made a SCT with associated chemo 2008 Got an M-component level of 8 where it stay untill early 2011. Has since that time  been involved in a study RE / DEX / Carfizomib and now has an M-component level of 0. So just now I am free from MM.

I wrote this so you can see how it  could bee. Good luck to You,  in the way You will handle your MM. An advice , lissen to your doctors, before you made your decision. The ways of treatment are  improven very fast just now

Have a good time

Arne H

Sweden