Hello,
I have been reading articles and posts for a few weeks and decided to introduce our story.
My husband went to our family doctor on August 2 for back pain that he'd had for a few weeks but had gotten much worse after, of all things, a strong sneeze. The doctor ran blood tests and ordered an x-ray, and had us scheduled for an MRI the following week. Three days later, the day after his 61st birthday, while we were out of town, he called to say that he had made an appointment for us with an oncologist for August 8.
We were in shock. The x-ray had shown a compression fracture to his lower spine, and the blood work showed an IgA of 3540, kappa light chain 1675, kappa-lambda ratio 761. Of course we had no idea what any of that meant, but he said the words "multiple myeloma". The diagnosis was confirmed by the oncologist after more blood work and a bone marrow biopsy that showed 95% myeloma cells and also chromosome 1 abnormalities, so "high risk".
The next few weeks are a blur. Appointments, a kyphoplasty to help with the back pain, a trip to the ER for a fever. Now he is in his 4th cycle of Revlimid, Velcade, and dexamethasone (RVD) and we are looking at autologous stem cell transplant, probably in early December. He has tolerated the induction therapy better than we had expected, and his numbers are very good. At last appointment, his IgA was 102, and kappa-lambda ratio 1.18, so we are grateful for that. Second biopsy next week, and if it looks good, we will be moving forward with the transplant.
We are still struggling to accept this new situation as well as figuring out the logistics of living out of town for weeks / months for the transplant process.
It helps a lot to read the experiences and advice shared on this site. Thank you.
Forums
8 posts
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PLong56 - Name: PLong
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 61
Re: Husband diagnosed with multiple myeloma 3 months ago
Welcome to the forum. Sorry you and your hubby must travel this journey. I am 60 some days past my allo transplant. Pretty much same story on diagnosis and the shock that comes along. I too had to move a couple hours away for treatment to the hospital and upon release to a hotel for a few weeks. It was not convenient by any sense; expensive and isolating. Overall, the time went by quickly, and the allo transplant was challenging but manageable.
The best of luck and strength to you both. We are all hear to support you and you husband.
The best of luck and strength to you both. We are all hear to support you and you husband.
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Husband diagnosed with multiple myeloma 3 months ago
I had a similar experience when my disease first appeared. I too sneezed, and it felt like I broke a rib. I then got a tumor on my jaw that has since receded. I find that my lesions and the pain they cause dissipate after just a few weeks of treatment for the multiple myeloma. I pray that it is the same for your hubby. Best wishes on your transplant!
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JinMingDao - Name: Kim
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 46
Re: Husband diagnosed with multiple myeloma 3 months ago
Thank you, JinMingDao and Hopeful1, for the positive comments. The whole transplant thing is scary and we know it won't be a piece of cake, but to hear that it is manageable helps a lot. Since we decided that it was the best course of action for my husband, we are trying to be optimistic and look at the future benefit of going through it. We're expecting bone marrow biopsy results in a day or 2, and assuming there is a significant reduction in myeloma cells (our oncologist has every reason to believe there will be since the latest bloodwork shows NO sign of cancer), on to the transplant center for stress tests next week.
Thanks again for your support and best to you both.
Thanks again for your support and best to you both.
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PLong56 - Name: PLong
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 61
Re: Husband diagnosed with multiple myeloma 3 months ago
Best of luck. Correction on my response. I had an auto transplant on August 17, and am scheduled for the second one on November 20.
Best wishes!
Best wishes!
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Hopeful1 - Name: Hopeful1
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 56
Re: Husband diagnosed with multiple myeloma 3 months ago
Good luck Hopeful1, and best wishes for a quick recovery. Keep us posted. My husband goes for the pre-testing on Thursday and if all goes well the transplant process will start December 1.
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PLong56 - Name: PLong
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 61
Re: Husband diagnosed with multiple myeloma 3 months ago
PLong56,
Sorry to hear about your situation. It appears you are wise beyond your years as a myeloma caregiver. Myeloma is a crash course. You are in a very fortunate position to be in, and your knowledge will benefit you greatly.
Both of my autologous stem cell transplants were 9 weeks apart and totally outpatient. I'd try to do any future transplant outpatient as well.
The real purpose of my writing is to suggest checking with your insurance coverage to determine whether they will cover housing and travel (mine was $10,000). I qualified because my transplant center was many hours from where I live.
Best of luck, and stay on top of things
Sorry to hear about your situation. It appears you are wise beyond your years as a myeloma caregiver. Myeloma is a crash course. You are in a very fortunate position to be in, and your knowledge will benefit you greatly.
Both of my autologous stem cell transplants were 9 weeks apart and totally outpatient. I'd try to do any future transplant outpatient as well.
The real purpose of my writing is to suggest checking with your insurance coverage to determine whether they will cover housing and travel (mine was $10,000). I qualified because my transplant center was many hours from where I live.
Best of luck, and stay on top of things
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Husband diagnosed with multiple myeloma 3 months ago
Hi everyone,
I'm back to happily report that my husband's stem cell transplant in mid-December went very well. He was out of the hospital in 16 days and had very few of the bad side effects we'd been warned about.
He is now at Day +46 and doing great. Hopeful for good news at restaging next month.
I wanted to post this so people anticipating autologous stem cell transplant can see that it isn't always that bad.
Patty
I'm back to happily report that my husband's stem cell transplant in mid-December went very well. He was out of the hospital in 16 days and had very few of the bad side effects we'd been warned about.
He is now at Day +46 and doing great. Hopeful for good news at restaging next month.
I wanted to post this so people anticipating autologous stem cell transplant can see that it isn't always that bad.
Patty
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PLong56 - Name: PLong
- Who do you know with myeloma?: My husband
- When were you/they diagnosed?: August 2017
- Age at diagnosis: 61
8 posts
• Page 1 of 1
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