Mom Dx'd -I'm Beyond Upset!

juleeb · New User Joined: 11 Apr 2007 Posts: 2

My beloved 82 years young Mom has had MM since I guess last summer. She was asymptomatic and started taking Revlimid a couple of times until she had terrible reactions to it. She ended up in the hospital four times and we almost lost her. That damn chemo drug!

This is someone who was always active and has never been sick. My siblings and I are all up North and Mom's down South. Anyway, she was in the hospital for a month and a nursing/rehab facility for 2 months. We took her out of there and took her home to her apt. She now has a live-in nurses aide who is wonderful.

Mom is having really no painful symptoms of the MM, is eating very well and even walking a little lately. She's not on any treatment for the MM now. Once was too much. Just wondering how she could be terminal if she's not having any major symptoms.

Thanks and best wishes to all of you.

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

juleeb,
Unfortunately we don't have an easy cure for MM. However, there are an array of treatments that can be used. Depending on how healthy your mother is, one could consider more than Revlimid. Another consideration is how aggressive the MM. If it's slow growing and not causing any problems, then your mother can just be monitored closely. Consider talking to your oncologist more or getting a 2nd opinion. Best wishes,
_________________
RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

stanky_williams · New User Joined: 02 Jul 2007 Posts: 5

I am just a MM patient, but my understanding is that the main terminal worry with untreated MM is kidney failure (I think it is the M Protein that builds up and “clogs” the kidneys). The other main worry is infection. I understand that the MM weakens the immune system which makes infection a larger risk (I think I remember reading that respiratory and urinary tract infections are a typical problem- average MM patients are something like 15% more likely to get an infection).

This being said, many MM patient actually have the cancer for years before noticing any significant symptoms. Its often not found until a person has a minor accident that breaks a bone that had been weakened by a small tumor.

Anyway, my point is that it is possible to have MM and feel fine, even though you could be at risk of one day getting an infection that your body can’t handle, or discovering that your kidneys are failing (an MM friend of my did not know he had MM or anything else until his kidneys were almost totally ruined).--While it is possible to have MM and feel ok, most of the people I have know have some type of discomfort (tumors, broken bones, neuropathy etc) and are usually on allot of pain meds.

I wad diagnosed over year ago (5-5-06) and have still not been able to achieve remission. On the bright side, the MM has been significantly reduced and has so far remained stable. My kidneys are not currently at risk, and my immune system is ok- The danger is that at any time the MM could get worst which could then start to put me at risk of infection/ renal damage- but if it does not ever get worse, there is no real threat. I just have to watch it forever.

I am sorry to hear that your mom had such a hard time with chemo. I had very bad reactions to the chemo as well, which is one reason I am not currently doing another round. The chemo was terrible and definitely did more damage to my body then the cancer (it did reduce my MM by half-- so I cant totally hate it). According to my oncologist, most MM patients do not have too bad of a reaction to chemo-- Although it seemed like there where allot of sick people in the waiting rooms to me. I am only 27 years old-- so if the doctors decide they want another round then I will do it (God I hope not)- However, if I had a family member that was older, especially if they where feeling ok, I think that I would definitely look for an alternative treatment. I have not been able to get my doctors ( I go to Arkansas- which is a great place for MM- I travel across the country to get there) to “support” any type of alternative treatment- so I cant help you with that.

Sometimes I wonder how I would feel if I just did not know I had cancer. Because I am so young I really have to treat the cancer aggressively, but if I where older, I think I would go with a more conservative maintenance treatment. I might be typing out of my but now, but I think that I have heard Dana Farber is the place to go for conservative treatment.

I hope this helps-- and please note that this is all just what I understand from what my caregivers and doctors explain to me.

God Bless

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