Want to talk about Multiple Myeloma: Anyone else?

I am a 31 year stage 3 myeloma survivor, Mayo second opinions being key. Some lessons learned surprised us and impacted treatment strategies. My 4 minute YouTube episodes of lessons learned from 31 years with multiple myeloma. Below links to the latest episodes; click “videos” at top to see all episodes
https://youtube.com/channel/UCqLcRQUKliWxNh_4avhBysg

I am just figuring out how to navigate and respond here. Thank you so much for the encouragement. We have an appointment on the 30th with his primary Hemo-oncologist. I have entertained e-mailing him directly with my concerns, but have felt somewhat reluctant as he is seeing 40 patients a day! How is that even possible???

We see the other Myeloma specialist next week to discuss the SCT. I have asked my husband to at least employ the new doc to do the induction tx in tandem with his current doc.

As for me, I wandered into the oncology resource center quite by accident. I am seeing the therapist at the moment. Everyone has the same advice. Be assertive and persistent. I appreciate the supportive words and agree 100% that the squeaky wheel gets the grease.

My husband starts the 3rd cycle of treatment on Monday. His Revlimid did not arrive despite having put the request in on the 13th of January. Not sure that one day is going to impact his 14-day on, 7-day off cycle, but yet again, falling through the cracks.

The very best to you. Thank you for responding. It is inspiring to hear that you have had 22 years!

Warm regards,

Patty

Hi Steve, I wanted to pop in to see how your appointments went. Last we chatted, you were heading to Rochester the end of January to meet with a hematologist about your MM. Any news?

I have a reservation at the Kahler Grand Hotel. It seems to be the closest. I live about an hour and a half away, so I will drive over the night before and then home after the appointments.

Or should I expect to spend more than a day in the hospital? I am not expecting that. If so, I will have to arrange for someone to feed the dogs and the bird.

Patient portal is all set.

Thanks.

Dear Patty,
Update: Been in remission for 22 years now.
How do you encourage the team to give you more support? DEMAND IT. Demand it with a smile, and "I know you're busy and overworked, but this is my husband's life we are talking about." The most important thing is to remember that YOU are the customer/client: the one paying.
Where are you seeking tx by the way? I was treated at the Fred Hutchinson Cancer Research Center in Seattle, WA, one of the top facilities in the world and the leading center in bone marrow and stem cell transplants.
At this time in your husband's life, he probably is scared, over-whelmed, may be feeling ill, is in an unfamiliar environment and situation, and doesn't feel heard. He also doesn't feel confident in his team...after all it sounds like communication is sorely lacking.
Can't trust the team? Educate yourselves. Talk to the team leader and the counselor at the facility. Politely and firmly demand that your husband gets the attention he needs for good care. Research shows that patients who advocate for themselves experience a much better outcome. (I was the sweetest, loudest, and longest-living patient they had in the study I participated in. )
For most people, persons of higher status, like professors and doctors are intimating! And your husband is already in a highly stressful and frightening time in his life! The last thing he needs is to feel hopeless, helpless, and intimidated. BTW, what supportive services are offered?
Part of my team included counselors, clergy, caregiver's classes, classes on "what lies ahead," tickets to the ballet (seriously). Every need was met. What supportive (with the emphasis on "supportive") specialists are available to help you and your husband navigate this strange new world?FIGHT! Take back your power.
You are in charge of the outcome, supported by a team of professionals who should be considering both you and your husband's emotional AND physical state.
Here is a link to some books about advocating for yourself and earning that "better outcome."
http://www.thetakechargepatient.com/about-book.html
or....www.AdvoConnection.com
or...Trisha Torrey, Every Patient's Advocate
~ Author of: You Bet Your Life! The 10 Mistakes Every Patient Makes (How to Fix Them to Get the Healthcare You Deserve)
~ Founder and Director of The Alliance of Professional Health Advocates
Lots to choose from! Yes, I still advocate for myself; trying the coordinate all the specialists remains problematic to this day.
Please arm yourself for the fight. Read everything you can, keep track of questions you want answers for, bring your cell phone or a recorder to every appointment, bring family or close friends if you need to show you have your OWN team.
Now get your battle plan together, then go out for dinner with Hubby and celebrate that the two of you are getting things back under control. Remember that "You da' boss!"
Hugs,
Karen

Thank you so much for the details. How much time between your "Evaluation week" of tests and your harvest of stem cells? Did your insurance require pre Auth for eval tests and one for actual stem cell procedure?

Thank you so much for the details. How much time between your "Evaluation week" of tests and your harvest of stem cells? Did your insurance require pre Auth for eval tests and one for actual stem cell procedure?

I’d be glad to share my experience. I have an aggressive form of lymphoma, Peripheral T-Cell NOS (not otherwise specified). Therefore my conditioning chemo regimen may be slightly different than for MM.

I live on the Outerbanks of NC so we had to rent a house for our extended stay in Rochester. My wife and I arrived on July 17. The first week were tests of my heart, lungs, kidneys, liver, blood tests, dental exam, and port placement in my chest.

The 2nd week began with a series of shots to stimulate stem cell growth and have them release into my bloodstream. This was followed by 3 days of stem cell harvesting. I needed 4 million stem cells and 500 thousand ALC cells. While I did collect collect 4 million stem cells in 2 days I was 90 thousand short of the ACL cells which required the 3rd day. Stem cell harvesting is easy and relaxing. It lasts 5 hours each day but you can read, watch tv, or nap like I did. I had zero side effects from harvesting.

After a few days of rest, I began my conditioning chemo on August 2 and was administered 6 consecutive days of various chemo drugs. I received a total of 26 hours of chemo during those days with Melphalan being my final dose on day -1. The very next day, August 8th, I received my stem cells. It was a nonevent. My 6 small bags of stem cells were thawed and I received them through my port and was then discharged from my 6 days of inpatient chemo. While I couldn’t smell it, my wife said I smelled like creamed corn for a few days following the transplant. I understand this is very normal and has to do with the preservative used in the stem cells.

I returned to our rental house and began my morning visits to Station 94 the next morning. Vitals were checked, I was weighed, and blood was drawn. If I needed fluids, platelets, or blood I received them.

On the 6th day after transplant, August 14, I began to run a fever as my blood counts were dropping due to the chemo. I was readmitted and began to receive antibiotics. Over the next several days my blood counts bottomed out (nadir period) and I felt extremely weak, developed a very painful mouth sore and did experience a bout with diarrhea, but no nausea . I stayed in the hospital for 6 days. Due to the mouth sore I was able to drink through a straw and eat soft foods. I was released from inpatient on August 19 as my stem cells were beginning to engraft (producing new blood cells). In fact my new cells were increasing so rapidly that I was released to go back home to NC on August 25.

I’m now day +32 and my biggest side effects are general weakness and fatigue as I begin to rebuild my strength. My appetite is good and I have not experienced any nausea or diarrhea. So far all is good.

Sorry for the long post. Didn’t know how much you wanted to know. If you have any follow up questions feel free to reach out!!
Good luck! You’ll do great!
Randy Hondros

I have a reservation at the Kahler Grand Hotel. It seems to be the closest. I live about an hour and a half away, so I will drive over the night before and then home after the appointments.

Or should I expect to spend more than a day in the hospital? I am not expecting that. If so, I will have to arrange for someone to feed the dogs and the bird.

Patient portal is all set.

Thanks.