Want to talk about Multiple Myeloma: Anyone else?

They caught mine on a yearly physical but it had progressed to smoldering myeloma. About a year later I started treatment. I had 16 weeks of chemotherapy with a single shot to the stomach each week. Also I was on 5 different medications while on chemo. So now I’m all done with chemotherapy and the drugs and am being monitored with a complete blood count and a meeting with my oncologist every three months. Chemo for me was not that bad, just drained all my energy but starting to get some back. I keep fairly active and a positive attitude helps a lot. I have a great support system and could not ask for better care at the Fargo VA, wonderful doctors and nurses. They are making great progress in myeloma treatment so hopefully sometime in the future it can be thought of as a curable cancer. Besides chemo I have had a couple bone marrow biopsies which I can say were not bad at all and I was not put under for either one. I have an aunt who has had MGUS for over ten years and doing well, she just goes in every few months for a shot. So to end this my journey with this disease has not been terrible but everyone’s is different. So I live my life as normal as possible and thank my maker for another day. I pray for everyone who has this cancer and may their journey be a successful one.

Patty,

Thank you for your feedback. I'll try to keep an open mind when we meet with the team next week.

Thanks,

Tina

Dearest T.,

Our experience with UCD was so positive. The staff are warm, caring and supportive. We could not have been happier with our choice of both UCD and the outpatient transplant option.

My husband is hanging in there with minimal residual disease 2 years after his transplant. We are grateful to his Dr. A. Rosenberg for his ongoing follow-up treatment.

If you wish any further discussion on the whole process please contact me anytime.

The very best to you on your journey.

Warm regards,

Patty

Hi Patty,
I too am nervous about the outpatient process at UC Davis as we're about 45 minutes away.

Being your co?ent was from 2023, would you be willing to share your experience about outpatient transplant at UC Davis?

Thank you in advance for your time.

Tina

@itlooksunny Definitely consult with a dietician to see how to get those higher calorie foods into him! If he does not have dietary restrictions due to other health concerns, the answer might be "eat whatever appeals to you!" Keeping a healthy intake of food while you go through chemotherapy can sometimes be difficult, especially if you are feeling nauseous or fatigued. That's where the smaller meals, and more frequent, can come in. And remember, the feeling of fatigue can be a combination of the protocol, and not eating enough. And not eating enough of the right stuff can affect lab tests. Does it sound like a big circle? Yep, it sure is. Kinda like dominoes.
Ginger

Dale is supposed to be on a 2300 calories per day! We get about 1500!
I sent an email requesting an appointment with Dr. Those are good questions, thank you!

@itlooksunny I typed out a response that is lost in the techy world somewhere! Dang it!

I also need to eat smaller meals. A small breakfast, a few hearty snacks during the day, a small dinner. Never know when I might have a diarrhea concerns, so there is loperamide hydrochloride in my medicine cabinet. The infusion center also recommends ginger or peppermint tea, or ginger chews.

Ask what tests showed too low. How does this delayed treatment impact his treatment plan? Does his Dr know about it, and have thoughts? In my center, we do the labs right before treatment and there is a lab onsite to handle everything.

Ask about a social worker you can see. They will also help family members, and may be able to offer you support group resources. No need to go through this alone! Yes, don't forget about taking care of yourself too, as you also transition to be a supportive family member and caregiver.
Ginger

Thanks for responding! The issue of eating & drinking is not because he doesn’t want to but because he can’t! He gets very uncomfortable if he eats too much! Working on more frequent smaller meals.
Newest problem, went for shots & pills on Friday and was turned away! Labs were low! No one called to tell us not to come or explained, until we understood, what was going on!!
Me, how am I doing? Struggling with having to take care of everything alone! Trying to stay positive and continue to do what makes me happy! Appointments interfere with my excercise class schedule and finding time for walks since it is now dark at 5:30!

@itlooksunny Welcome to Mayo Clinic Connect! You're doing just fine, we understand your dilemma.

Everyone seems to respond differently to a protocol of medications. Yes, fatigue is a big factor. Our body is fighting this new opponent of myeloma, and that takes a lot of energy! For me, I try to keep as normal a routine as possible. While there are days I cannot accomplish everything on that list, it spurs me forward to try.

As for diet. If your husband does not need to consider any co-morbidities and dietary concerns, here are some ideas. Eat what appeals to you. If water is not appealing, try adding some flavoring. I use True Lemon, True Lime, or True Orange as an additive to give my water just a bit of taste. In the morning, my go-to is a glass of crushed ice with water, and usually one of these packets. I am always looking for ways to increase my protein intake, as dialysis is hard on a person to keep up protein levels. Hummus with celery or carrot sticks, or chips is a good source. Peanut butter on crackers. My homemade protein shake has bananas or blueberries, greek yogurt, almond milk, and plant-based protein powder. You don't need a huge shake, about 10 ounces, to get a good "meal" in with lots of protein! Lean chicken in all forms, likewise fish.

You may find some information about the spine issues and aftereffects in the spine health group https://connect.mayoclinic.org/group/spine-health/

We're here for you! any other questions come to mind? How are you doing handling all this?
Ginger

Hello and thank you for your patience as I am new to this site unsure of how to start so here goes:

My husband was diagnosed with high risk multiple myeloma (p-53 positive) in September and started DVRD, Danatumumab (weekly injection), Bortezomib (weekly injection), Lenalidomide (Revlimid) pills 2 weeks on one week off, Detamethosne (weekly pill), on October 18. No one tells us about side effects, only catastrophic ones, We are getting treatment #4 (of 16) today. The only side effect we have seen is fatigue. Are we to expect more? When?
My 2nd problem is eating, drinking and protein. struggling with getting these in him. Doesn't like protein shakes (I have added fruit, instant breakfast, protein powder, flavorings, protein bars are too dry. Any suggestions!
This whole problem started March 10 when Dale had surgery to remove a mass that was wrapped around spine. Fusions, rods & pins were used. He continues to have stomach tightness, back tightness and numbness in legs and feet. Will this improve or do I need to go to different chat room to discuss this?

Thank you very much for your help and any feedback that you can provide.