Multiple Myeloma: Come introduce yourself and let's talk

I 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.

Thank you.

I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

I am new to this group so please forgive my mistakes. I see a recurring theme of getting diagnosed late and then not getting all the information you need. Our story is similar, my husband kept going to the doctor with a back ache and they kept telling him it must be a pulled muscle. Then when a sneeze brought the strongest man I know to his knees, I sent him to a doctor I knew and said “please don’t send him home without answers”. By the end of that day we knew he had holes in every bone in the chest ct scan. They scheduled him for bone biopsy. My best friend had passed in about a year with multiple myeloma so when they said he had it. ( I had already been reading) I asked for a referral to The Mayo Clinic in Rochester. We are now 2 ASCT, and multiple treatments down the road. It has been 9 years and he is doing pretty darn good. The doctor that Mayo sent us to in Oregon, was at Mayo which was our gain, always reminds us, that this is a marathon, not a sprint. In my opinion, if you or a loved one has mm, then you should seek the best help you can afford. We drove to Mayo and stayed in simple lodging, but the co pays were not higher, they were less, and our doctor here works with Mayo. If your doctor doesn’t play well with others, I would seek out a second opinion. Next, I would get informed, there are many sites on line with information. I love the international Myeloma Foundation because I can ask for help with understanding things if I need it. Next, get organized, you need to track all your own blood work and treatments because if you get sick on vacation and end up in a strange hospital you will likely need all of that information. It isn’t always easy, but it is always worth it.

Thank you, for your kind comments. Our lives are not challenge free for sure. My husband is on a 5 lb limit for life, because Myeloma ate holes in all of his bones before he was diagnosed. This is moderated some by the bone strengtheners but preventing more fractures is crucial to his quality of life. Although we have a great oncologist less than 60 miles away, the local medical climate is one of closed minds and doors and does not play well with others. This creates a bit of tension if there is an emergency. My husbands has a very limited immune system and has had to be hospitalized once locally for a pneumonia gone wrong. He also some other typical age related health issues that become a little more difficult when the Myeloma and bone disease have to be considered before physical therapy. All new prescriptions for thyroid, prostrate etc. must go through the interaction filter for the drugs he is already receiving. That being said, I manage his medications, and he is careful with his bones, and we try avoid exposure to viruses, and still we enjoy our time traveling within our region, watching movies, and visiting with friends and family. I am a patient advocate for anyone who asks locally, and spend a bit of time educating people about how to be a part of your own medical team. All of which I learned from our experiences at Mayo Clinic. We were blessed to be able to have his stem cell transplants there, being part of that amazing system makes you long to help others who have to try and manage complicated diseases without that kind of help.

Hi! As both patient and Mentor, I see your post as valuable on more than one level. Any chance you are encouraged to make other contributions at another time?
Nancy

I would love to, I am inspired to contribute in any way that I am able and thank you.