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
Good wishes moving forward. You have much reason for hope.Nancy from PA
-
Like -
Helpful -
Hug
1 ReactionHello @juiusd, and welcome to Connect. Thank you for sharing your recent diagnosis with the group. You mentioned that your biopsy was today, how did that procedure go for you?
Hello @juiusd,
You mentioned that you had a bone marrow biopsy scheduled for 7/18 and your consult was set for 7/24. I am just checking in and wondering if you feel comfortable sharing with the group how your consultation went and what you learned?
-
Like -
Helpful -
Hug
1 ReactionMy 67 year old brother was recently diagnosed with full blown mm. He is getting the results of his bone biopsy today. He feels fine and has no physical symptoms.
His initial doctor wants him to start chemotherapy immediately. He is currently looking for a specialist in the Spokane area but may have to go to Seattle.
I was diagnosed with Stage 3 Multiple Myeloma in December 2017. Mine is one of the most aggressive forms of MM. I was in Renal Failure and did Dialysis three times a week for all of January. Luckily my kidneys are now functioning on their own and no longer need Dialysis. I’m being treated at Aurora (Chemo) and switching over to Froedtert (possible Vertebraoplasty) in Milwaukee, WI. I had a couple of vertebrae fractures in the upper Thorasic area, back in December that have healed some and now have about fractures in the lower Lumbar area, L2,L3, and L5. I was not told of Kyphoplasty or Vertebroplasty options until they also started to heal. Radiation was not a good option because it makes the bones even weaker. In January I was put on a VCD Chemo regiment of; Velcade and Cytoxan three times a week, and Dexamethasone once a week. A genetic test was done in March in preparation for an Autologous Stem Cell Transplant (ASCT) and I found out that I have several gene deletions. The Chemo regiment appeared to stop working and I still had 30-40% of cancer in my bone marrow. The ASCT is also on hold to see if a new KRD Chemo regiment of; Kyprolis, Revlimid twice a week, and Dexamethasone, once a week, will get the cancer below the 30% range. I went without Chemo for three weeks between Chemo regiments, and shouldn’t have, and took a drastic decline. I went through a lot of emotional turmoil adjusting to the first week of Revlimid. Now I’m doing much better. Hopefully with another month and a half I’ll be able to have the ASCT which could give me a couple more years to live.
-
Like -
Helpful -
Hug
1 ReactionHi again Robinraig, I’m actually taking The Revlimid for 21 days and a week off. What I was going to say was that Specialists seem to be more on top of options. And I would definitely recommend starting Chemo right away.
-
Like -
Helpful -
Hug
1 ReactionThanks so much for giving me an idea of what’s ahead. When I spoke with him last week, the chemo was going going to start soon. It’s a bit overwhelming as I’m sure you know. They are still pursuing a specialist. I do not know what the bone marrow numbers are just that they are going ahead. He had an MRI some years ago for something else. It showed 3 spots on his spine that they think are from mm. The red flag was a kidney stone that was removed recently. They followed up with a blood test and then the bone marrow biopsy. All that has been going on over the last few weeks.
I hope all continues well with you and the stem cell treatment happens. My brother was told that will be in his future.
I am new to this mm thread but joined Connect this year because of my hearing loss. It was a bonus to find this after I got the sudden news from my brother that he has full blown mm. Total surprise to him.
-
Like -
Helpful -
Hug
1 ReactionI was going to a clinic for years and was told I was anemic. They gave me iron pills. A few years down the road I started having pain in my ribs. Went twice to the hospital and was diagnosed with chest wall pain and given ibuprofen. The pain happened again. I went to Johns Hopkins who diagnosed me with multiple myeloma. They referred me to the cancer unit where a biopsy revealed I was Stage 3. You need to see a hematologist or cancer oncology doctor. I am in my eight year with Multiple Myeloma Bone Cancer doing chemotherapy and Immunotherapy.
-
Like -
Helpful -
Hug
1 Reaction