Older than most in the MM group. 79 yrs and recently diagnosed.

Posted by slembo1 @slembo1, Mar 12 2:49pm

Hi. I am a 79 year old who has been recently been diagnosed with Multiple Myleloma -symptom was extreme anemia. I am not in any pain, and have had a petscan that showed there were no lesions or tumors. I don't know exactly what to expect as I go forward with this rare disease. I have just finished my first month of treatment with DRD. At the clinic I am going to that medication is the first line of treatment. This seems to be the medication that they will modify as time goes on. My oncologist thinks I am not a good candidate for SCT because of my age. I would like to hear from other older adults who may have had either CART T or SCT and their results. I am trying to find the best Cancer Center to go to for this disease, and MD Anderson in Houston seems to come up in searches as the best cancer center in the country, so I may have to relocate for the best care. Thanks

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lynnebgraham | @lynnebgraham | Mar 18 4:20pm

In reply to @elainegivner "I’m 81 too! Diagnosed 12/24 after 2yrs of horrible migraines. Do you take Hydroxyurea ? If..." + (show)

Hi @elainegivner
I have had MPN ET tripple negative for over 17 years, started Hydroxyurea on 2nd January. So far a bit of sunsensitivity, tire easily, otherwise good. I am 74 in July. Was previously on Anagralide with no side effects. Did research and there is not much difference in both of these drugs. Hydroxyurea is a chemotherapy drug Anagralide is not.

phn | @phn | Mar 19 4:48pm

My husband will soon be 79 and is in generally good health and a very active person. Last September he was diagnosed with MM. PET scan showed one or two small tumors. He is on RVD and is responding well. We consulted with a MM bone marrow specialist at City of Hope who did not recommend a ASBM due to his age, although given certain criteria he will perform it on patients over the age of 75. His reasons regarding my husband: age protocols (over 75), previous cancers (resolved prostate and melanoma), very difficult prep for ASBM (even for those younger in age) and a greater possibility, for some reason, for other cancers to show up in those having bone marrows after age 75. Even with ASBM, it is not a cure and will eventually return. Finally, there are a number of other medications available and being researched for treatment of MM.
What may work well and be appropriate treatment for one patient, may not be so for another. We are happy to be under the care of City of Hope physicians and nurses who treat us as individuals and with concern.

slembo1 | @slembo1 | Mar 20 2:45pm

In reply to @dancouclanel4 "I'm 80 but with MDA/AML. Quite the journey. Never heard of your disease but will tell..." + (show)

Thank for your support!

slembo1 | @slembo1 | Mar 20 3:22pm

In reply to @phn "My husband will soon be 79 and is in generally good health and a very active..." + (show)

Thank you. It sounds like you are in good hands! I understand that the City of Hope is one of the top hospitals for cancer in the country. We are trying to coordinate our treatment with MD Anderson and our community oncologist team in Austin. If it works out we won't have to move, but if not we will move to Houston to follow MD Anderson's care. They recommend different treatments. Texas oncology recommends DRd as their first line of treatment and MD Anderson recommends a fourth drug in the DRdV as a first line. We have a consultation in a few weeks with a Stem Cell transplant specialist to see if I can qualify for it..

slembo1 | @slembo1 | Mar 20 3:24pm

In reply to @slembo1 "Thank for your support!" + (show)

what does ASBM stand for?

phn | @phn | Mar 20 5:26pm

Wishing you all the best. God Bless

phn | @phn | Mar 20 5:27pm

Let us know how is goes.

phn | @phn | Mar 20 5:34pm

In reply to @slembo1 "what does ASBM stand for?" + (show)

I thought that meant Autologous Stem Cell Bone Marrow transplant but maybe not?

slembo1 | @slembo1 | 2 days ago

In reply to @slembo1 "Thank you. It sounds like you are in good hands! I understand that the City of..." + (show)

UPDATE on my stem cell transplant eligibility. After two days of testing at MD Anderson one of the the stem cell transplant doctors at (they have 27) said that they see no reason why I should not be able to have a transplant using my own cells, even at the age of 79. The problem is while testing they found that I have Pulmonary Fibrosis! I had no idea, but they said that should not get in the way of a transplant. Now I'm not sure it's such a good idea. Anyone refuse the SCT and just stayed on their meds?

Ginger, Volunteer Mentor | @gingerw | 1 day ago

In reply to @slembo1 "UPDATE on my stem cell transplant eligibility. After two days of testing at MD Anderson one..." + (show)

@slembo1 I am not a medical doctor. I can't/won't diagnose any condition. I will tell you my thoughts, though, as if I was in your shoes!

1. If you don't have a pulmonologist, I would get a second opinion about if a stem cell transplant might be successful given the fibrosis diagnosis. In fact, I might ask for a workup to see if indeed that is present!
2. I am a kidney disease patient, on daily dialysis. Last year I had researched to try for a kidney transplant. Yes, I am also in treatment for multiple myeloma. The conclusion was to possibly qualify for kidney transplant, I would need to get a stem cell transplant for my myeloma first, and show no evidence of disease. The time frame for all of that was estimated to be 3 years. But the toll of a stem cell transplant would probably be too much for me. And remission not guaranteed. As much as I would like a kidney transplant, I was not of a mind to try for an initial procedure that might not be successful/kill me, then possibly not qualify for a kidney transplant.

The upshot of it all is, I continue my medications for myeloma, and continue on daily dialysis.
Ginger

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