Want to talk about Multiple Myeloma: Anyone else?

My husband took three months of revlomid, then auto transplant at Mayo. Then 7 months later he took velcade shots every week for 3 more months then a second auto at Mayo again. This time he got a complete response and started on revlomid maintenance for two years. Then a three year treatment free period. Then Ninlaro, and revlomid for 6 months, Ninlaro only for 6 more. He is now on a break, that has lasted another two years. His numbers are starting to climb again, but slowly. It is definitely a marathon, and not a sprint as our most excellent doctor always says.
The biggest overall side effect from all the treatments is weak bone marrow. If he gets a virus, it really takes him down hard and he can get pneumonia really easy.
I remember when 12 years with myeloma was an anomaly, today it is more the norm. He just celebrated that on the 10th of this month.
When wandering on the IMF site, did you order the new patient handbook? Does your sister have a long term plan for treatments?

Mrs. Oakley, your post has given given me so much hope to know that MM can be managed for years. I know it has not been easy for your husband or you but, he’s still here after 12 years. She’s on the treat for 3-4 months and she’ll get assessment in a few weeks about transplant options. We don’t know what that means yet for her treatment or disease. Is this the normal next step.? Does chemo get her to remission without transplant? How is your husband’s quality of life through all of this. Is he able to continue to do some of the things that he normally enjoys? How did he tolerate revlimid? I seen some challenges with this drug. Would you send the link for the IMF that you mentioned.

Thank you for such nice comments! I am so very happy that you are feeling hopeful, there is much to be hopeful about. I honestly can say that there are so many new treatments that I am not sure if the standard treatment of care is still transplant. Is your sister seeing a doctor at Mayo for assessment? I think remission comes and gos with the majority of folks but I think transplant started him off right, I am really glad we went to Rochester for that. The folks really knew what to expect and were prepared for the issues. There are scores of treatments now, there was only velcade, revlomid and dex to treat with when he was diagnosed.
The IMF is an amazing place to learn, here is the link.
https://www.myeloma.org/
My husband still has a pretty good quality of life but no physical things anymore. Anything pushing, pulling, or lifting is my job now.

What kind of challenges is your sister having with revlomid?

No she’s not at Mayo yet, but working with local doctors. She just starting revlimid and so far tolerating it okay. Thank you for the information and hope. I will keep you posted.

Finally seem to be headed to Mayo for the transplant in July. Had a zoom meeting with the doctor and another scheduled with a social worker so looks like it is happening! Hope nothing prevents it. Looking forward to getting the details and a plan in place!!! Thanks for all your support and encouragement!!! It really got me through some tough months!!!

Oh wow!!! That’s the greatest news about your transplant!! I’m doing a happy dance for you because I know you’re feeling a sense of relief that this can finally happen. No talk about ‘hope nothing prevents it!” It will happen! ☺️

I’d like to introduce you to @countrygirlusa who, last month, had her autologous stem cell transplant at Mayo!

I’m here for you too and I know there’ll be a number of questions you’ll have about what to bring for a month stay and what to expect. We’ll walk you through that too. I know it seems daunting at this point with logistics for being away from home for a month. But it’s doable and the beginning of a new journey towards a healthier you!
You’ve had past trips to Rochester, do you have an idea for lodging?

I have a zoom appointment with social work on Tuesday. My husband is a bit depressed as was told it is a six week process which is longer than he thought. Guess doing everything at one time. So many questions but just the beginning so there is time. Thought he might be able to do some things there but as my caregiver guess pretty involved. Hope the Revlimid enough as this is my last set of doses.

Good morning, @tml, You and your husband have a lot to process with your good news of finally being able to get your stem cell transplant. It’s a bit overwhelming when you first hear the news and then trying to imagine the logistics of a 6 week stay away from home.
The adventure in Rochester will go by quickly and so much will be happening during that time. My stay was 4 months so I know the immediate reaction of ‘how are we going to make this work.” But it all comes together and your husband will be a very crucial part of your transplant and recovery.

For your husband, he’ll need to accompany you with most every appointment. There will be a few days when you’re in the hospital but most of the time you’ll be an out-patient and in your long term lodging. This will be your home away from home. However, he’ll also have a lot of free time and able to take in the sights and activities around Rochester. My husband put on several miles daily with walking the trails along the river, touring the city with it’s museums, historic sights, etc.

To get your thought process started, for lodging you’ll want to be very near the clinic. Most of the hotels in the immediate area of Mayo are connected via the tunnel (subway system) which is really convenient for your daily trips to the clinic.
If you opt for a hotel, such as the Marriott Residence Inn where we stayed, ask for a month lease, instead of paying by the day. That saves you from paying county room tax.

The social worker you’re meeting with Tuesday will provide you with a ton of useful information and you’ll get a packet in the mail to help with your planing. Don’t hesitate to ask her any questions, even after your meeting. That’s usually when we think of things! You’ll be able to send her messages via the patient portal.
I’m here and so are others to help you navigate this big life altering challenge ahead. Do you know if you’re going to fly to Rochester or will you be driving?

My husband is consider driving now that we have a bit more information. He is always thinking if the worst case scenario. I know he needs to be with me but was sure there would be times he could do some things. Otherwise I am sure very bored!!! I guess we thought the stem cell harvest might be done separately from the actual transplant since guess that can be done even if not ready or considering whether to get a transplant. Guess he thought two trips. My sister’s friend went home after 17 days. Guess hers went really well but also near the cancer center so probably why.

It is great to hear a lot of walking opportunities since he walks or bikes almost every day. The doctor made it sound like he has to be with me 24/7!