Positive Vibes
I finally went to the Kansas City Myeloma support group. They meet once a month at the Central Methodist Church around 47th & Oak. I have never made it to a meeting because I’m often absolutely exhausted by 5:00PM or so. Now that I’m off the Revlimid and Dexamethasone, I’m doing better, though still very fatigued. I made myself go, even as windy as it is. While this sounds like a simple thing, for me it was a milestone.
I’m so glad I went. I think the timing was right. Weird thing happened, though. My old dentist and his wife was there. Jon. He stopped being a dentist and was involved in the Renaissance and made beautiful carved horses for a merry-go-round. Jon and his wife are artists and neat people. My mom and sisters became more acquainted with them. I don’ know if Jon is still involved with the Renaisance, but he now teaches dentist school at UMKC. Unfortunately, Jon was diagnosed with MM I think in November.
While I enjoyed meeting new people and re-meeting some I’d met at a free dinner a few years ago, there was one minor irritation. I am still the only one having this much trouble with pain, fatigue, and immobility! It’s almost funny! I just laughed and said I’ll still find someone like me one day. Heee. All of them had successful stem cell transplant. Many don’t have to take medicine, or if they do low doses. One had a stem cell that didn’t work like me, but she also got a second one that did better and she is feeling fine and not on any medicine!
We all introduced ourselves, probably because there was a few new ones and it was the first meeting of the year. We went around the room and each told our “MM story.” It was interesting and entertaining at times. But one of the last ladies to introduce herself said she knew exactly what I was saying about never being the same after her stemcell transplant and that she also developed the pain in every joint. Her name is Vicki. She also said they give her blank looks when she describes her symptoms. She is just now beginning to see my doctor so now my doctor will at least have 2 of us that I know of with the same symptoms. It is something that is probably not related to MM, but an affect from some medication or treatment. It feels like some kind of severe arthritis in every joint. Then of course I have the muscle loss from the steroids. I am hoping to focus on exercising my legs and arms.
I got this information below about Myeloma from a link from some website, referred by the support group. It’s weird when you read “32% survival at 5 years after diagnosis.” You can’t get too caught up with these statistics because they’re probably “old statistics” for one thing. Then, they’re only statistics. Also, if this is true, why is most people I meet that feel good today have had MM 8, 9, and even 10 years!?? Of course, ‘I don’t feel good’ - but I’m not doing all that bad, either. I’d say fatigue is my worse complaint, then weakness. I can deal with the pain, though I do take pain medicine. But is these people all the 32%-ers?? Do they all live around here and are the ones I’ve been introduced to over internet/support groups?
Support groups hook you up with others with the same cancer, etc. I have an email friendship with a lady in New Jersey. She’s my age, has 2 horses on some acreage, single but has a boyfriend. I don’t know where he lives, out of town I think. Her mom lives with her. She’s a realtor and she had her house built with separate living quarters for her mom. She must do well.
FROM A MYELOMA WEBSITE:
Facts About Multiple Myeloma
- The 5-year survival rate for people with multiple myeloma is only 32%, one of the lowest of all cancers.
- Approximately 50,000 people in the United States are living with multiple myeloma and an estimated 16,000 new cases are diagnosed every year. Approximately 10,790 deaths from myeloma are anticipated this year.
- Two-thirds of people diagnosed with myeloma are over the age of 65. Myeloma is uncommon in people under age 40, though recent statistics suggest that incidence is increasing and at an earlier age.
- Men are 50% more likely to develop multiple myeloma than women, and myeloma is twice as common in African Americans as in Caucasians.
- In the early stages of multiple myeloma, symptoms may be vague and resemble other conditions. Many cases are now discovered during routine blood testing, when only protein levels are found to be elevated. As myeloma advances, its symptoms include bone destruction, kidney damage, and increased risk of infection due to a crippled immune system.
Attending this support group meeting was a great thing for me to do. I think it is just right timing and something necessary for me going forward.
Tomorrow starts the fun. Magnesium Citrate, Miralax & Gatorade, Bisacodyl tablets, liquids only - but at least no enemas.
What’s the occasion? A colonoscopy at 9:00am on Wednesday. I have to be at KU by 8:00AM for check in. Fun. 
Filed under: Multiple Myeloma and
My wife has had a stem cell transplant and it failed. She was in remission for 3 months when it came back. She has just started with the Revlimid and Dex, maybe a week now. She lost her balance and fell last week breaking her hip. Surgery followed with pins placed in it. She like you is very weak, very fatigued. She says she fells like she isn’t even in her own body, confused at times. She also has Amyloidosis from the cancer. It is mostly in her tongue and skin. Making her skin very thin, which tears very easy and has swelled her tongue. She was first told of the cancer in Sept, 2006. She has spent alot of time in and out of the hospitial with different problems related to the cancer, liver, kidney, lung problems to name a few. We have been to a support group also, with no one felling like she does, I so can relate to your problem. Hope you are dong better now.