[Meatwheel]

Multiple myeloma sucks

by Meatwheel on Sun Jul 20, 2014 6:06 pm

Two years ago I retired after 31 years as a high school English teacher. At the end of the first year in August 2013 I thought I broke a rib (rolling over after rearranging a stereo speaker. That should have been a clue.) Having broken one as a teenager I let it ride knowing the doctor couldn't do much; it appeared to heal. Little by little though getting up in the morning got more difficult and so did walking. Suddenly the rib flared and I felt great pain. That was enough to seek the doctor's opinion. (I go to my GP every year for a physical and all had been well with yearly blood tests, etc.) But this visit X-rays revealed a lesion on my rib. Further tests revealed rib, hip and skull lesions and as suspected Multiple Myeloma.

Once I began treatment at a local oncologist I slowly progressed from taking two to four hours to get out of bed each day while experiencing leg and back spasms that were nearly unbearable to walking with trekking poles to partial remission after four cycles of chemo treatment.

I underwent a SCT in February 2014. The numbers afterward were not as good as the doctor had hoped. I'm in partial remission, same as before the SCT. (Good numbers so far) I'm on 10mg Revlimid daily chased with an aspirin, 400 mg acyclovir twice daily, 1.9 mg Velcade and 20 mg dexamethsone bi-weekly, and Zometa once a month.

I guess I'm lucky or at least my body is more tolerant as I have experienced very little side effects. I was a very active year 62 year old before the disease, swimming 1500 yards five days a week, playing disc golf regularly, hiking, backpacking, bicycling and fly fishing. Now I walk regularly, work outside in the garden and plan to get back on the bike and in the pool soon. The future is uncertain but I plan to keep close tabs on treatment and live as fully as possible.

There's always something new to learn about this insidious disease. The multiple myeloma Beacon was recommended by another multiple myeloma patient who has had a journey similar to mine. Thank you Beacon for the opportunity.

[Toni]

Re: Multiple myeloma sucks

by Toni on Sun Jul 20, 2014 6:53 pm

Welcome, thank you for sharing, although I am sorry you are here for this reason. We can only hope that going into this as a healthy and active individual has helped you with your treatment.

One thing many members on this forum have mentioned is being sure you are being followed/treated by a multiple myeloma specialist, if at all possible. I hope you find the information and support you need here.

[Meatwheel]

Re: Multiple myeloma sucks

by Meatwheel on Sun Jul 20, 2014 9:35 pm

Toni, my wife and I found a multiple myeloma specialist at UCSF through my wife's god parents' daughter whose husband has had multiple myeloma for eight years. My UCSF doctor now oversees my treatment through my local oncologist. Thanks for the good wishes.