Want to talk about Multiple Myeloma: Anyone else?

Yes, I am back at Mayo! But just for a day. ☺️ I’m on a 3 month schedule for follow ups to the clinic. For my Acute Myeloid Leukemia I needed stem cells from an unrelated donor, which is called an allogenic transplant. It can get a little complicated with side effects, so I’m checked quarterly at the clinic, sometimes with bone marrow biopsies or follow up tests to make sure the AML isn’t being sneaky. Every couple of weeks I have bloodwork done at my local oncologist. Those results are sent for Mayo evaluation.

I know you have quite a trip to get to Mayo for your transplant. I’m not sure what the followup appointments are like for your autologous transplant (using your cells). That will be an important questions for you to ask when you talk with the transplant doctor at Mayo.

I have to say, this has been the most amazing care I’ve ever had. The transplant team, doctors, nurses, all of them, are so attentive, compassionate and dedicated to ensuring my good health. So I know you’ll experience the same treatment if you choose to come here.

You mentioned that the clinic near you would now give you a transplant? What made them change their minds?

Only because Mayo said they would. I had an appointment with another doctor there after my Mayo appointment and their PA spent all the time explaining how hard a transplant was on the heart, etc.

A friend of my sister’s just had one there. First remission and already home after 17 days since did so well. Fine for her to get one despite having had heart surgery a few years ago.

Sadly numbers are up a bit. Had a large drop the first month but the latest tests are back up some. Not sure how problematic this is but a bit depressed. Not sure if there is something else I should do or something else they can give me. I was taken off Darzalex so not sure if that had any impact.

@tml Look at the trend, not a set of results in particular. That is what your team will be doing, most likely. And remember, this was only one round, right? Your system is getting geared up for the battle.

What are you doing today that will place a smile on your face?
Ginger

Not much! Gloomy day again. Was a bit depressed to see the upswing though am not sure what the numbers truly mean. At least tests are in should get my next set Revlimid l! Always a worry but hope now on track not to have problems within the tight turnaround time. I guess I am still just too impatient!!!!

My sister was recently diagnosed with MM STG 3, aggressive. This has been tough for all. She’s healthy otherwise with no symptoms from the MM. This was found on a routine exam. Doctors says it happened over short period no warning. She is going through chemo, injections, steroids and pills now. Possibly transplant later if chemo doesn’t contain it. 1) Any insights on how MM develops? 2) Are there blood test warning signs? 3) what can we as care supporters or expect as she goes through this journey of treatment? In other words, how can we best help?

Sister diagnosed with MM S3 recently. I am in the forum to learn and be support as she goes through this. Thanks to all of you for sharing

@cgirl0721 It is good to see you are looking in to this, as a family member and part of your sister's support team. I know she appreciates everything you are helping her with, as she navigates this new-to-her path!

There are several different kinds of myeloma [hence the title multiple!], and treatments can vary with each type. Also, if there are additional health issues present, treatment may also be modified to take those in to account. I have added the link from Mayo Clinic for multiple myeloma for you to read. Because blood cancers are systemic, traditional surgery is not an option. An additional source for information is the International Myeloma Foundation, that link also here.

Your sister will perhaps go through periods of exhaustion, mental confusion, maybe even grief as she deals with a different daily routine. And it's okay for everyone to acknowledge that, and be gentle. Taking medications and changing your lifestyle can be exhausting. Accompany her on appointments if you can, take notes, ask questions, don't be afraid to ask for help. And, come back here to get support yourself, and ask questions!
https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
https://myeloma.org
Ginger

Thank you have read all of the material.