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Should my mother start treatment?

by Sue2015Mom on Tue Sep 01, 2015 5:45 pm

I'm needing some help. My mom, age 72, was recently diagnosed with multiple myeloma (Stage I with standard risk). Her main complaint symptom that began the whole running tests process began with extreme fatigue.

We have gotten two doctor opinions and they are recommending starting treatment of RVD or VRD (Velcade, Revlimid, and dexamethasone). But my biggest question is if her only symptom is fatigue, won't she feel more tired and cause other side effects?

It's hard seeing a loved one not feeling well, and I just don't know if it's worth her feeling worse.

Has anyone regretted beginning treatment?

Sue2015Mom

Re: Should my mother start treatment?

by Multibilly on Tue Sep 01, 2015 7:34 pm

Sue,

Typically, when one is diagnosed with multiple myeloma it is because they meet one or more of the CRAB criteria (high Calcium in the blood, Renal dysfunction, Anemia, Bone damage).

Multiple myeloma crowds out the regular healthy normal healthy cells in one's bone marrow and therefore reduces the number of healthy blood cells that carry hemoglobin. This is why some multiple myeloma patients develop anemia and feel very fatigued (although other conditions associated with multiple myeloma can also cause fatigue).

I'm going to guess from your mom's fatigue that she has at least has been diagnosed with anemia due to the multiple myeloma? What are her hemoglobin and red blood cell (RBC) levels?

Yes, multiple myeloma treatments can cause fatigue (VRD and RVD really aren't "chemo" in the classic sense), but the treatment will very likely reverse the multiple myeloma damage and should start to bring your mom's blood counts back into the normal range so that she will start to feel better. Over time, the VRD or RVD chemo treatment will be reduced in dose and/or dialed back to just one or two drugs or eliminated altogether. Moreover, while some patients do experience side effects from VRD and RVD, it is not a given that she is going to feel any more fatigued from the treatment. Every patient reacts differently to the treatments.

In any case, you really do NOT want to consider letting this disease go untreated. The damage caused by multiple myeloma will only worsen over time and she can end up with very severe complications that will make fatigue seem like a fond memory.

Multibilly
Name: Multibilly
Who do you know with myeloma?: Me
When were you/they diagnosed?: Smoldering, Nov, 2012

Re: Should my mother start treatment?

by Sailor Mike on Thu Sep 03, 2015 1:18 am

Tough call, but then you probably figured out when you got two conflicting opinions.

I was diagnosed when my right arm broke just below the shoulder as I scooped up my little 12-pound dog. Up to that point, I hadn't noticed ANY of the indicators. That led to a year of radi­a­tion, aggressive chemo therapy, and a bone marrow transplant.

The point is you DON'T want it to get to stage 3, where significant kidney or bone damage takes place.

My first recommendation is to find a doctor that specializes in myeloma (if you haven't already) and get a third opinion. Let me warn you in advance, even at the specialist level, doctors sometimes disagree on treatment.

At least a specialist will make sure she gets all the tests she should have before making such an important decision, including a full body bone scan, a bone marrow biopsy, and maybe a CT scan.

If you do decide to start treatment, you or your mom's caregiver need to be vigilant in reporting any side effects, INCLUDING fatigue. They can always reduce the dose or try another medication.

Good luck to you and your mom.

Sailor Mike
Name: Mike Verla
Who do you know with myeloma?: Myself
When were you/they diagnosed?: February 2014
Age at diagnosis: 62

Re: Should my mother start treatment?

by cdnirene on Thu Sep 03, 2015 10:45 am

I'm curious, Sue. If your mother had liver or colon cancer, and NO symptoms, would you want her, against her doctor's advice, to delay treatment with its related side effects until the tumours grew?

cdnirene
Name: Irene S
Who do you know with myeloma?: me
When were you/they diagnosed?: September 2014
Age at diagnosis: 66


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