Connect
Multiple Myeloma: Come introduce yourself and let's talk
I was diagnosed after a bone marrow biopsy as having indolent myeloma 4 years ago. My oncologist says I now have multiple myeloma. I have not been receiving any kind of treatment, just blood tests every 4 mo. followed up by an office visit. The doctor prescribed some iron pills. A friend of mine also has multiple myeloma. She started taking calcium pills and her doctor is seeing some good results. I started taking calcium/vitamin D3 supplements. My primary care doctor diagnosed me with osteopenia (as well as high blood pressure and high cholesterol). My oncologist says that as long as he's not worried, I should not be worried. But I keep feeling like there must be something that I can do to improve my situation.
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
Since myeloma can be deadly, I would consider going wherever I could to see an oncologist with myeloma experience. The International Mueloma Foundation may be able to help, or the American Cancer Society. Both are great and have good sited.
-
Like -
Helpful -
Hug
2 ReactionsI was diagnosed with stage 3 myeloma 31 years ago and visited Mayo 3 times for 2nd opinions between home town treatments. Our lessons learned and strategies are in 4 minute YouTube videos. Search 30 year myeloma survivor patient 007 to view.
-
Like -
Helpful -
Hug
1 ReactionHi @nadineelissa, how is you mom doing on Isatuximab?
She is doing okay. She just had her 3rd infusion and she is able to control the nausea with meds but is very tired and dizzy for a few days after treatment and has some brain fog. Compared to Revlimid and another treatment this is doable, especially when she soon goes to every other week for her infusions. Her veins are a problem for the IV and she will be getting a port this week.
-
Like -
Helpful -
Hug
3 Reactionsjust diagnosed with Multiple myeloma. Start chemo injections soon
start MM injections next week. Looking for any ideas as coping with new disease. Found in lower back pelvic area and in chest sternum etc.
Lots of prevention medication to take etc.
As male 81 with many other issues. Heart arthritis etc.
-
Like -
Helpful -
Hug
1 ReactionWelcome @dick12, I moved your post about being newly diagnosed with multiple myeloma to this existing discussion that you'll find here:
- Multiple Myeloma Come introduce yourself? https://connect.mayoclinic.org/discussion/multiple-myeloma-26f521/
I did this to help you connect with the many other members living with multiple myeloma like @gingerw @nadineelissa @whitepine66 @mitten @psue4 @tristram @taminni @hthree and more - some of whom have been recently diagnosed like yourself and others who have had MM for years.
What type of chemo drug will you be starting? Do you have questions about starting chemo?
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed with active myeloma 31 years ago, and lessons we learned and strategies are in 4 minute YouTube videos. Search YouTube 30 year myeloma survivor, patient 007. The first few episodes may be most helpful as you begin your myeloma experiences.
I live in Finland. We don't have knowledge and money to treats myeloma. Life expectancy is about seven years. I'm 54 so in bad ways I'll die before I'll retire.
Is there something connecting to myeloma with prolonged heat? I've +37.2°C for many week/months. But the Finnish doctors can't say anything. They don't find out anything to take care.
I was drawn to your post because I have a dear friend who lives in Finland. I found this article that clearly indicates there ARE doctors in Finland who are knowledgeable about myeloma. Please try to get in to see them (in Helsinki).
https://onlinelibrary.wiley.com/doi/full/10.1002/jha2.802
-
Like -
Helpful -
Hug
1 ReactionThey take the blood test once a year, and nobody tells the results, only : "the new test will take next year". I know the myeloma treatment is not the priority one in Finland, lack of knowledge and money. And they say, if they will find the cancer, I"ll have 7 years left, but I have double to retire. And nowadays we don't have enough money to healthcare, so I might have myeloma now but the next tests will be on next autumn. There is any doctor who really knows the first symptoms, if I'm so lucky that I get a appointment to doctor. I will know more than he/she. I'have been in low fever many weeks now: +37.2°C , that's 0.7°C more than normal. I've got many troubles with asthma and allergies, even if we still have very freezing winter here. But the wind brings many allergens from Europe. They like to say: take your allergy and asthma medication, but I've taken them every day. And if I tell the problems with back or so, they ask if I stop smoking. That's funny, because I've never ever tried any of that. So, you can understand that I'm so alone with my MGUS and might have workplace where is mold, AGAIN. I've got the toxins from molds since 1980. And that's why I've got asthma, allergies and this stupid mgus.