Hello all,
I read lots threads but rarely post. I guess I’m looking for a way to vent and maybe some positive stories. Short backdoor brag I’m in the best shape I have ever been in my life. I have ran a bunch of short tri for the last several year. Did two 1/2 IM last year and had signed up for a 1/2 and full this year. I’m a middle of the road finisher but enjoy the physical and mental challenge of training and racing. All that said have, never smoked, always eat right, worked out my entire life. I’m 50 years old and get regular check ups with no major problem.
Two months ago I got some crud that was going around and was super sick. I even told my wife I could see how elderly people get sick and die from a chest cold. Well I went to the doctor and had a bronchial infection, they gave me a z-pack and sent me on my way. I did improve and started training again but never felt “right”. Went back to the Dr about 3 weeks later when my ankles and hands started to swell. Although my resting heart rate was 46, my BP was almost 200/100. I did all kinds of blood test and urine test and a kidney biopsy and found that I had about 30% kidney function.
I live in the small town of Cody WY, so its a 4 hour round trip to Billing Mt to even see the doctor. I lived in Columbus Ohio for years so was able to get in to see a great Dr at The James Hospital at The Ohio State University. After a Bone Marrow Biopsy, I stared Chemo (valcade) and they have talked about a option of a stem cell transplant at the end of chemo. Its all sort of scary and does not seem to be any rhyme or reason as to why this happened. So I’m getting treatment in Ohio for two weeks at a time then going back to Wy for a week off then back for treatment again, 4 cycles of that. Like I said I’m hoping for a good outcome and any positive stories or experiences with MM I would love to hear
Thanks to all.
James
James,
I’m a lab tech and see this all the time. We always marvel at the cells and then at how people survive and then thrive.
When you are at the bone marrow stage let us know, I’m sure plenty people here would be glad to get tested for a match, I know I would.
Best of luck in everything.
Nova
Sorry to hear about your health troubles.
Can’t help you with the MM part. I had throat cancer. Like you best shape of my life. Got a sore throat that would not go away after a couple of rounds antibiotics. Had a biopsy. Cancer in my lymph nodes. Had surgery, then radiation every day for 7 weeks and chemo once a week for 8 weeks. I am due for my 4 year clean check up next month.
All I can offer is there is hope don’t lose it. Stay positive. Take care of yourself, do not be afraid to hole up and do nothing if that is what you feel like. Try to let your body heal between treatment don’t over exert yourself. Don’t be afraid to stay away from crowds, bars restaurants etc. Your immune system will be very compromised and it will be easier to get sick. Let those around you help you and be involved if they want. It’s going to be hard on your family too. I don’t know if you will be working (I could not) if not try to start reading or painting or anything relaxing to occupy your mind. Hang in there, take care of yourself and good luck.
Sorry for that.
I’d be finding out what sort of trials they are participating in.
There was news this week about car-t treatments for lymphoma and this:
Decker21, I am really sorry to hear what you’re going through. I can’t imagine the frustration to go from pinnacle of your health to fighting this disease. But it sounds like you caught it early and your exceptionally strong health profile with help as you fight this. I don’t have personal experience but I’ve spent 15 years of my career representing people with an occupational cancer. One nugget Ive learned from them is that positive attitudes lead to healthier and stronger fights. Those clients that resign themselves to the ultimate generally do not fair like those with positive attitudes. It’s not science but after working for nearly 1000 clients with mesothelioma I’ve seen it first hand.
Good luck in your fight!
Sorry to hear about your diagnosis, it is somewhat like mine.
In Feb 2017 I was training up for IM Chattanooga, working mostly on running at that time since it is my worse leg of the event. I ran 100 miles in that month and was feeling pretty good doing it. I regularly get to chiropractic care so in early Mar of 2017 I went in for an adjustment. When being adjusted, I felt a pain that was unusual, not a joint, not a muscle, but something different. It was as if one of my ribs was out of place, not broken but something was wrong.
I thought about that for a couple of weeks and decided I needed to find out what was going on. I went to a doc in a box place near our house and got a check up. The blood work done did not show anything, poking and prodding did not find anything and the Dr. was going to send me down the road. I asked for an X ray, which was initially resisted by the Dr. but I convinced him that it was best. Either that or I would go to another Dr. and if something was found I would bill the first Dr. for everything that came after that.
The X ray showed a fist size mass, not on my rib but up on the left scapula , the bone in the upper part of my back. A CT scan confirmed it was some kind of tumor. I was referred first to a lung cancer specialist, then to a lymph node specialist and then finally to a multiple myeloma specialist after a biopsy showed the mass was a clump of misshapen blood cells.
By May I was on chemotherapy (Revlamid, Velcade and DexaÂmethaÂsone), which ran until early August, followed by a Stem Cell transplant in October. That process, while tough, ended as scheduled without any serious problems or infections (infections kill more MM patients than the cancer does in the first year of the disease). My immune system came back very quickly, mostly because of my fitness before the treatment and my resuming my training as soon as I was able to sit on my bike and pedal. My oncologist also prescribed a lower strength maintenance chemotherapy because of the strength of my immune system which we both believe came from both my earlier fitness and my quick resumption of cycling and running (kinda running, my feet got peripheral neuropathy from the initial chemo before the Stem Cell transplant).
Today I am at about 85% of my fitness from before the diagnosis, and I am working toward getting back to the sports I enjoyed before this rude interruption. I realize that I might never get all of it back (being 58 makes it hard even without the cancer!), but I intend to stay active as much as my body will allow.
I hope my story gives you some hope in your journey, it does not mean a death sentence these days and there are a lot of new treatments that might be a complete cure for the disease in testing programs right now. If you want to ask me anything, feel free to send me a message and I will be happy to chat with you.
Here is a good website for MM, its not affiliated with any drug companies that might bias the information in the site: https://myelomabeacon.org/
Very sorry to hear this but good that they identified it. Good luck in your treatment.
Sorry to hear about your diagnosis. You definitely deserve some venting. I work as a pharmacist on the cancer floor of the hospital here. Prior to going to pharmacy school I worked at an outpatient cancer center working with patients who were on clinical trials. I’ve seen a lot of patients come through both places over the years and will echo what a number of others have said - try and keep as positive attitude as possible. That being said, when you are having tough days, let them come, trying to keep things buried can just wear you out. Find some people who are willing to listen or help when you just need someone to talk to. Try and get hooked up with cancer support groups, patients have mentioned in the past that has helped them see the light at the end of the tunnel.