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Inability to stand up since start of radiation therapy

by TheresaH on Sun Jan 26, 2014 9:49 pm

Thank you for creating such a great resource of support and information.

My mother (72 years old) was diagnosed with multiple myeloma the day after Christmas when she presented to the ED with back pain.

An MRI confirmed multiple lytic lesions, SPEP an M spike of 0.6, and B2 microglobulin of 1.2 with low albumin. All other labs look good - bone marrow pending. She is on her 8th of 10 radiation treatments - they are targeting 2 areas (T6 and hip)

I have seen her fade tremendously over the last 2 weeks - she was always a very strong woman and had been walking 5 miles daily just a week before going to the ED. (She had complained of back and hip pain previously but it was not severe).

The radiation is wiping her out - she increasingly has had more difficulty standing - once up she can walk and is trying to walk about 30 minutes each day. I am really concerned that she is having such difficulty standing up - she uses a walker now for safety reasons - but even with the walker she does not have enough upper body strength to pull herself up.

Is this normal? Is it an indication that something else is going on? Will it improve when the radiation stops? I feel so helpless - I just returned from spending 3 weeks with her to help get through the diagnosis and most of the radiation. We live in Pennsylvania - my parents are in Florida. I am wondering if I should go back down.

Thanks for any insight - the success stories I have read are inspiring.

TheresaH

Re: Inability to stand up since start of radiation therapy

by TerryH on Sun Jan 26, 2014 11:52 pm

Hi TheresaH (I like your name ... ;) ),

First of all, I'm sorry to hear about your mom's diagnosis. As you've probably already seen here, however, there are lots of effective treatments available right now for the disease, and others are on their way.

I have not had radiation therapy, but I believe one side effect of the treatment can be fatigue. Since your mother is having two different areas of her body radiating, she may be even more likely to experience fatigue as a result of the treatment.

But perhaps others here in the forum who have had radiation treatment can comment on whether it caused the same sort of symptoms your mother is experiencing.

You can find a discussion of some of the common side effects of radiation therapy here:

http://www.cancer.gov/cancertopics/coping/radiation-therapy-and-you/page6

One important question that I have for you is this: Is your mother being seen by a myeloma specialist? Most such specialists are based at major cancer centers. This is important when it comes to myeloma because new research is constantly coming out about the best way to treat the disease, and it's not a common disease. So general oncologists or hematology-oncologists are not always up to speed about the best way to treat myeloma.

My other important question for you is: Has your mother's doctor discussed with her the possibility of treating her myeloma with any drugs? Is she already getting such treatment?

There are drugs like Aredia and Zometa that are used to strengthen the bones which your mother probably should be getting.

Even though your mother's myeloma does not seem to be very advanced (given her M-spike and beta-2 microglobulin levels), the disease is obviously attacking your mother's bones. I would think that her doctor would therefore be thinking of starting to treat her disease with myeloma therapies such as Revlimid or Velcade, most likely combined with dexamethasone.

Maybe I'm wrong and it's standard practice, even among myeloma specialists, to treat cases like your mother's with just radiation therapy. I would have thought, though, that more treatment than just radiation would be planned.

In any case, good luck to you and your mother, and please keep us posted on how she is doing and any additional information you find out.

TerryH

Re: Inability to stand up since start of radiation therapy

by TheresaH on Mon Jan 27, 2014 9:54 pm

Hello TerryH - thanks for responding.

The radiation is palliative as the lesions at T6 were compressing the spinal cord. She is on Dexamethasone 4mg q 12 hours - and that has helped tremendously with the pain. (She will taper that dose between radiation and chemo - and then have a maintenance dose as part of her drug regimen)

The plan is to follow radiation with Zomata and a combination therapy of Velcade, thalidamide and dexamthasone. We are still waiting for the bone marrow results - I am not sure if the results will alter the proposed plan - we will find out the first week in Feb. She has one last radiation treatment scheduled for tomorrow.

She is receiving treatment at Orlando Regional which (until Jan 31, 2014) is affiliated with MD Anderson Cancer Treatment Center.

I think we were initially very hopeful based on her SPEP and B2 Microglobulin that the initial treatment would be "easy" and she would cruise through radiation and the worse part would be chemo -but the overwhelming fatigue has been debilitating for her and now I am really worried that our initial optimism was misguided. I never expected she would not be able to raise herself up from a seated position.

Trying to stay positive...and saying lots of prayers :)
Thanks
Theresa

TheresaH


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