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.
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Yes Ginger…thank you. All other blood tests normal!! Dr. said kidney function better than most !!
It can disappear with treatment, because that is how they monitor my husbands disease. I do not know if it can go away on its own. Yes it could be MGUS. Also, not everyone who has MGUS gets multiple myeloma. The international Myeloma Foundation has a ton of information online. If you want to read more.
I am new to this group, and was diagnosed with MM in June, 2019. I also had multiple lytic lesions, all over, on diagnosis. I am being treated locally, with RVD, now on week 9. I have consulted with a wonderful hemotoligi st at Mayo in Jacksonville, for a possible Autologous SCT. I am my own advocate, at present, and am learning all I can. I need to exercise, and have been walking once or twice a day. I have fatique all of the time, and am also afraid of pathological fractures, so walking seems the safest thing to do, for now. I am also very careful not to fall. Thank you for your post, because I am nervous about the SCT. But 9 years is a lot, after this recent diagnosis, which has turned our life upside down.
Good for you, that you are learning all you can. I really feel like the information is so crucial with this complicated disease. Have you gone to the IMF and requested the information pack yet? You can pick them up at Mayo too. Husband was told swimming and walking were really his only options for safe exercise but walking was the most beneficial. Transplant was hard for him but it is only one dose and when it is done, it is done and you have time to recover, he has had two with the second about a year after the first giving him a complete response. You can do this! We went to Rochester but I am sure it will be basically the same. If you are going to go, give me a tag and I will share my best tips. You can take what you like and discard any tips you don’t need. I hope you don’t mind, but you just landed on my prayer list. I would like to address the fatigue, I know it is hard now, and every body is different. That being said, my husband was very,very fatigued for a long time before he was diagnosed. If it was eating holes in all your bones it was pretty advanced like his was. He actually started feeling better after a while on the revlomid. The transplant knocked him down but then he actually started feeling better and better. The treatments can cause fatigue, but in his case at least, the lack of normal blood counts was the big driving factor for fatigue, the more the disease got under control, the less fatigue he felt. I will say that he is tired a lot now, but he is mid 70s, and still does quite a bit each day.
Yes, I was having fatique, before, diagnosis. And for about 1 year prior, I noticed I was gradually having more and more sinus and bronchitis infections. From January, 2019, through mid March, 2019, I was not able to fully recuperate from the respiratory problems, and developed new onset asthma symptoms. In March, I was treated aggressively with steroids/breathing treatments, antibiotics, etc., and due to bad chest x-ray, had a chest CT on March 25. This CT showed cleared up lungs, but multiple lytic lesions on thoracic and lumbar spine. Thus leading to diagnosis of MM, in June. I thought my intermittent back pain was from nursing for 25 years, and the fatique, from being 54, and working night shift for 9 years! Now here I am! Sorry for the long post, but just still wrapping my head around it all! Thank you for sharing you and your husband's personal experience! And for your prayers! Will add you both to my prayer list, too!
There is a lot of good news here. There are many tools in the treatment box for Myeloma. There is a mixed blessing of the rising number of cases every year. I hate to think of more people getting it but it has also meant more research, and more new treatments. I read every new study and trial that I can get my hands on, usually from IMF. It gives me a lot of encouragement for Myeloma patients of today and in the future. The one piece of advice I would give mentally is never give an inch to this, if it takes an inch, take that inch back when you feel stronger, there will be times when you feel bad but there will also be a lot of times when you feel pretty good. When you feel good, do what you want to do to make you happy. The one piece of physical advice I would give is to buy stock in hand sanitizer, haha, it is everywhere, in the cars, in my purse, I slip it in his jacket, I get him to use it, and I use it everywhere, all the time. He also no longer shakes hands. You are in really good hands at Mayo!!
@ozys Hi ozys! It has been a long while since your beginning posts, and I wonder how things have been for your husband as well as for yourself. Myeloma can take many twists and turns for all of us. I didn't know your ages as that can make a large difference in what this diagnosis means for our lives. I had to laugh at my Mayo checkup in August when I learned the past six months were especially rough because the treatment dosages were higher than usually given to patients "my age!" That would be 78. :0) But it sure worked!
So, how are things going for you and your husband? Nancy
Hi there! When I first read your post, you made a statement about mm being "the gift that keeps on giving", and that couldn't be more true to my experience! At the time, you certainly had a few issues on the table. Of note was near remission, but continuing to deal with progressive lesions, and I wonder how you are doing these days. Do you mind offering an update?
I have MM.
Can you please tell me your story and how got it and where you are at currently?