Want to talk about Multiple Myeloma: Anyone else?

My brother-in-law died from multiple myeloma last year. My sister, her husband struggled with symptoms after he retired age 65. He didn't get diagnosed until he could eat or swallow or walk; the intense pain was curse. 3 heart attacks year before it started so weekly he landed in hospital for several days at a time, dealing with heart issues. Blood test overlooked from heart problems, until few weeks before his death, skip over from over lapping symptoms from other health conditions. It was undiagnosed until month he died. My sister had same thing, she went to doctors for years and years, complaining about symptoms. She went to specialist, 3 days before diagnosis, doctor said it was all in your head. 3 days later, she went to ER and did cat scan, 10 in. and 8 in tumor witch spread across torso area, doctors removed pounds of cancer that pushed against her stomach, lungs, liver, kidneys, batter and into lymph-nodes and gave her 3-6 months to live, it's been painful and crazy 20 years and in wheel chair, still breathing 5 years later age 60. No insurance after her husband died. My younger sister died age 40, broken her leg and saw doctor 2 hours before she died and he said nothing was wrong with her, but coroner told us it was unknown blood disease; he couldn't figure out. I was lucky, i was diagnosed with polycythmia versa (Sept 2022) / hospital missed same numbers 2020 but 2023 just diagnosed with Myelofribrosis / leukemia. I'm so glad for any diagnosis and I can research what I have and have support that my family never had. It's a blessing to know! Any information is miracle and a gift.

Thanks for checking on us. Tom had his BMT on Dec. 9th. He had some syncopal episodes and they were afraid he would fall so he was an inpatient for 10 days. He didn’t have any mouth sores but did have a very painful throat and esophagus. That was his worst side effect.
He got out of the hospital on Christmas Eve and was able to leave Rochester on New Years Eve. Recovery is going very well. Eating again and walking with just a cane. He has had some irregular heart beats and will be receiving a heart monitor tomorrow. I think his care team is very happy with his progress for a 78 year old.
Scheduled back to Mayo in March. We couldn’t have been happier with his care at Mayo Rochester. His care team was amazing!!

Good morning, @papad I’m joining my fellow mentor, @gingerw in welcoming you to Mayo Connect and happy she brought me into the conversation regarding stem cell transplants.
It’s quite a journey but well worth the effort. There are different types of Stem Cell Transplants (SCT). I had an allogenic transplant using cells from an unrelated donor. I’m anticipating that your husband, because of his MM diagnosis, will be having what’s called an Autogenic SCT. That would be using his own cells. Do you know what type he’s scheduled to have?
We have other members in our group who have gone through Auto SCTs, are doing really well and have shared their stories with us.
@gingerw already introduced you to @dkandalec and I’d like to also add @capthondo who received an auto transplant for another blood condition and has shared his story with us here:
Want to talk about Multiple Myeloma: Anyone else?
https://connect.mayoclinic.org/comment/747475/
Another trouper from our auto transplant group is
@countrygirlusa who has shared her story in this comment
https://connect.mayoclinic.org/comment/716285/
More shared experiences can be seen here:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I found another older conversation about the timing on auto transplants that might be helpful. While dated the information remains the same.

Auto stem cell transplant: What can we expect for timing
https://connect.mayoclinic.org/discussion/auto-stem-cell-transplant/
When undergoing a transplant, usually the first big hurdle is finding lodging for the 6 weeks if it’s an auto SCT or 4 months for an Allo-SCT. Will your husband’s transplant be near your hometown?

Good morning, It’s been a few months and I’m just wondering how your husband is doing after his transplant. I know there was a postponement because of an infection so I’m hoping the transplant was able to take place and that your husband is recovering nicely! Are you still in Rochester?

@papad Welcome to Mayo Clinic Connect!

Here is a conversation within this support group, about BMT and patient stories:
https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/
I am tagging @loribmt, a fellow mentor, who underwent a bone marrow transplant for AML three years ago. I believe it would be a similar experience.
Ginger

I was diagnosed with myeloma in 1992 and have been in remission the last decade, no maintenance. 4 minute YouTube videos of lessons we’ve learned and strategies used may help. Below links to the latest episodes; click “videos” at top to see all episodes
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

My husband was diagnosed in October and will be having BMT in February. We would love to have a conversation if you are willing to talk about your experience.

@patty67 Welcome to Mayo Clinic Connect! good for you for questioning the communication style of your care team. What is new to us, lots of words and tests, may be "old hat" to them and they don't realize how confusing it can be.

@dkandalec had some great points in their response to you! I also take a list of questions each month to my doctors. We do often need to advocate for ourselves. Staying with reputable websites for information is critical, and watch falling down the rabbit hole of Dr. Google!

You mentioned getting a second opinion. How close are you to Vacaville? Mayo Clinic Network works with North Shore there, and may be a great start for a second opinion: @patty67 Welcome to Mayo Clinic Connect! Good for you for questioning your care team's approach to communication. What is brand new for us with terms and situations, is "old hat" to them, and they might not understand how confusing it can be to us.

@dkandalec had some great points in their post! I also take a list of questions each month to my doctors, and will have them repeat the answers if I don't "get it" the first time ;))

Are you near Vacaville? Mayo Clinic Network teams up with North Shore there, and may be a great place to get a second opinion. https://www.northbay.org/about/northbay-medical-center.cfm

Do you have any further questions at this time?
Ginger

Thank you for the advice. We are seeking a second opinion and I have suggested to my husband to work with both doctors in tandem.

I am grateful for the advice and will work harder to try and understand the protocol and his lab numbers. Most of the labs are so far a foreign language to us and we get little feedback about the results from the doc.

We are fortunate to live in Sacramento where we have plenty of options for treatment. UCD is here and there is an excellent specialist in Myeloma.

Anywho, the very best to you. Many thanks for your reply. I hope your treatments lead to a long healthy remission.

Warm regards,
Patty

Patty,
I was diagnosed 1 1/2 yrs. ago and have been through initial treatment and just had stem cell transplant in October.
I have found that you have to be your own advocate if your not getting the response you are looking for. Here are a couple of suggestions:

1- Do your own research as much as you can. The mayo clinc, multiple myeloma .org., American cancer society etc.. This will assist you in arming yourself with some knowledge of the disease.

2- Use this knowledge to ask questions regarding treatment, side effects, next steps. I use to show up to my monthly appointments with the oncologist with a list of questions that I had.

3- I was lucky enough to be able to go to the Mayo Clinic and get a second opinion on treatment and my local team was more than willing to work with them if any suggestions were different for treatment. ( I was happy to find out that they were both on the came page).

4- My biggest issue was that my family doctor failed to diagnose my early symptoms. I assumed all bases were being covered and did not push the issue when I progressively got worse. I was in stage 2 out of 3 by time it was found by a neuro surgeon after multiple fractures in my vertebrae.

Push the issue with your care team. Don’t settle for not being kept informed or receiving the proper treatment. I have been in remission since Nov.2021. Diagnosed in June of 2021.

Feel free to contact me if you need anymore information regarding my journey and any insight I may be able to provide.

Wishing you and your husband the best treatment and recovery possible!