Want to talk about Multiple Myeloma: Anyone else?

@loribmt, @agent007 @capthondo @bscham
I would also appreciate hearing about your experience to truly understand the patient perspective of going through the SCT and the subsequent weeks afterwards. Any things you’re glad you did in preparation for the transplant (i.e. diet, exercise, sleep) or things that you wish you had done or taken care of prior which would have made the process smoother? My 75 year old father will hopefully be receiving his SCT in November at Mayo(Rochester) and I will be staying with him and my Mom for a couple of weeks to help in anyway I can. Were there any weeks that you felt were most critical in which you needed support, whether that be physical or emotional? My apologies for so many questions, I’m just trying to prepare for and expect the unexpected. @capthondo I’m so happy to hear that you’re onto the next chapter of your health journey. @agent007 and @bscham I wish you continued strength and health as you move closer to your scheduled SCT and will keep you in my thoughts.

I don’t know if you saw this recap of his very recent SCT transplant journey but, @capthondo just wrote this wonderfully detailed accounting for us yesterday.

You’re very fortunate to have the transplant facility locally! Have you met with your transplant team yet?

Hi @hopefuldaughter Never apologize for asking questions. There’s so much to learn about the SCT journey and recovery. @capthondo (Randy) perfectly summed up an autologous transplant (using the patients own stem cells). which is what your father will be having. Not sure if you saw his latest posting, https://connect.mayoclinic.org/comment/747475/ right here in our discussion group on MM.
His entire procedure was done at Mayo exactly where your dad will be. So your dad’s journey will be parallel to Randy’s.
My experience was a bit different because I had an allogenic transplant using someone else’s cells so my pre and post transplant story is a little more complicated. But from my experience, days 7 thru 15 after the actual transplant were the worst days. That seems to be around the normal time frame for most transplant patients so if you wanted to schedule a time to be with your parents, if your mom needs help, that’s probably a good gauge…just prior to week 2 post transplant.
Though if your dad has a fever or any side effects such as @capthondo and I had, he’ll be back at Station 9-4 in the hospital for several days. I know it’s difficult for you to know when to schedule the best time to be there for them.

As for support, again from my personal experience, my husband was my caregiver and he did an amazing job. But I’m a very independent person and found myself feeling irritated by hovering when I wanted, or needed to be left alone. As newly transplanted patients, we can’t be left alone but we don’t need constant pushing to eat, drink, walk when it’s just not in us at the time. So keep that in mind if your dad says he feels gross and just wants to sleep. It’s ok!! 😉

Read through Randy’s excellent accounting and then toss out more questions if you can think of anything specific. Have you looked into lodging yet?

That sounds horrifying. I’m so sorry. You may have covered this and I missed it, but is there a chronic pain specialist to whom she can be referred? Sometimes palliative care teams have one, which sounds scary for those actively engaged in fighting disease, but one has to consider quality of life.

@loribmt. Just a comment here. Most of us are facing diseases and other crop that makes a mess out of our lives. The most valuable thing we have in our treatment is our ability to ask questions and search for answers. I just learned about one of the simpler tests for necrotizing fasciitis. Now, I really don't think I have it, but there is enough evidence to ask my doc and a good lab about it. If I have it, I will deal. If not, I will celebrate. I know I have a bunch of other stuff, but I would rather celebrate. oldkarl

Hi @bscham, I know your husband was anticipating his stem cell transplant in late October. Was he able to go ahead with it? How’s he doing?

Hi @hopefuldaughter, I wanted to check in with you to see how your dad is doing on his stem cell journey. Hopefully he’s able to go through with it by now or soon… let me know how he’s doing, ok?

Hi @loribmt, thanks for the follow up. On Oct. 27th my husband was hospitalized with an infection. He was discharged on the 29th and after discussing the issue with Mayo they still wanted him to come on Oct. 31st. He went through 4 days of tests for his heart, lungs, kidneys, liver, etc. and passed everything with flying colors. Unfortunately, he still has the infection in his system and will be on another round of antibiotics. Therefore, the BMT has been delayed and it is now scheduled to start on Nov. 25th. He doesn’t feel too bad and doesn’t have a fever. But he is very tired.
The delay was disappointing but the Dr. has assured us that the transplant will happen!

Oh gosh, I’m so sorry the transplant’s been postponed. It’s frustrating to get your hopes up for something and then have a delay. I know you both just want to get this over with so your husband can move on to some normalcy.

But having an infection is one of the major things we try to avoid after having a transplant, so he definitely doesn’t want to enter into the treatment still having traces of one in his system. Having gotten through his preliminary tests with flying colors is awesome! That means when he’s free of the infection, the transplant can happen pretty quickly.

If I remember correctly, your husband will be having an autologous transplant, using his own cells. When he’s given the go-ahead, the harvesting of cells will be up soon on the agenda. Then on to the transplant itself, which is pretty anticlimactic. After all the hoopla, it generally takes less than a half hour…with no drum roll or marching band. But psychologically it’s a big deal for patient and family. It’s the foundation for hope. ☺️

November 25th…This will be a meaningful Thanksgiving for you and your family. Were you able to go back home until the transplant?

We decided to just stay in Rochester since we have an apartment rented. It seems there is always one more test or appt. they want so we will be here.
The fridge at home is empty and the water is off. Don’t really want to go back to getting together with friends again for fear of him catching something else.