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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.
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Re: Dear hubby's stem cell transplant saga

by dogmom on Thu Aug 18, 2016 10:27 am

The doctor visit went really well. He called my husband the "poster child" for stem cell transplant recovery. LoL. :D

All of his labs CBC and kidney function are good. He is still a little anemic (hemoglobin is 12.6) for a man of his age, but so much better than before treatment. We will take it.

We have appointments set up for the 90-day testing, X-ray, blood work, 24 hour urine, and bone marrow biopsy. We are scheduled to see the doc on September 14 for the verdict on how well the high-dose chemo has done. I will be sending up many prayers for all to be good and what he has gone through not to be in vain. :(

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by Mark Pouley on Thu Aug 18, 2016 11:30 am

Great news! We will all have crossed fingers for good test results.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53
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Re: Dear hubby's stem cell transplant saga

by 19pops57 on Thu Aug 18, 2016 9:47 pm

Hello dogmom,

I am 58 myself like your husband. It is hard right now to communicate where I am at; I am trying to understand what all the acronyms stand for and what numbers I should now be concerned with. I am on a 3 cycle (each cycle consisting of 4 weeks total, so I would say week two of the second cycle, working toward a bone marrow transplant maybe around late October or early November.

My reason for replying to this post is to first congratulate your husband and you so far in his journey! And to thank you so very much for posting yours and his journey. You have given me such hope! I had to go back and read every one of your posts in this thread up till the present.

I worry more about my beautiful wife going through this experience than I do myself. To read your husband's journey through your writings and emotions was and is so heart warming . I will have my wife read your husband's journey and hopefully she will find the hope and peace I have found reading your story.

The people on this forum seem to be so helpful and comforting and knowledgeable that I may open up my own thread, reaching out to all those that have found support and offer support!

Once again, dogmom (Cathy?), thank you so very much for sharing your husband's journey. I will be praying for the both of you and others that are on the same journey! Much love sent your way!

19pops57
Name: Steve
Who do you know with myeloma?: Fellow worker
When were you/they diagnosed?: July 2016
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by dogmom on Fri Aug 19, 2016 5:25 am

Steve,

My husband and I have the unique experience of really knowing how the other feels in this case as he was the caregiver and I was the patient 11 years ago. I had breast cancer with surgery and chemo.

One day at a time. The best to you and your wife.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by mikeb on Sat Aug 20, 2016 11:03 pm

Hi Cathy,

Thanks for the latest update. Very happy to hear hat your husband is continuing to do so well!

One little caution on the Day +90 tests – sometimes the improvement following a stem cell transplant continues beyond the first 90 days, so those results don't tell the whole story. My M-spike was 0.4 g/dL both before the transplant and at Day +90. I was bummed out. But with 2 cycles of consolidation therapy and maintenance therapy following that, I eventually got to stringent complete response (sCR) and minimal residual disease (MRD) negative territory. I hope your husband will too!

Best wishes,
Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55
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Re: Dear hubby's stem cell transplant saga

by dogmom on Mon Aug 29, 2016 7:01 am

Well guys, this is the week for the Day +90 tests. X-rays and/or scans Wednesday, and pick up 24-hour urine jug. Friday blood draws, bone marrow biopsy, and turn in 24-hour urine. Ten more day wait for appointment with the doc for results. He is doing so well and says he feels great. Fingers crossed ... :!:

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by dogmom on Mon Sep 12, 2016 8:59 am

Thursday is the day we get the results from all of his Day +90 tests. He continues to feel well.

When the bone marrow was done, the pulling of the marrow went very quickly, so it was not thick or sticky. This makes me believe the plasma cell load is low as it would have been much harder to obtain if it was high, and the nurse practitioner agreed. The very first marrow he had done for diagnosis was very hard to pull. His load then was 70%. The one done after induction and prior to the stem cell transplant was easy to pull, and the load then was less than 10% or undetectable by pathology review. As a med tech, I know sometimes with myeloma patients the marrow is so thick with plasma load it is unable to pull at all. This is called a dry tap and the pathologist has to rely on the bone sample itself for diagnosis.

Everyone please think good thoughts. We have planned a few days in the Smoky Mountains (we love it there and it is about a four-hour drive from our home) for our 25th wedding anni­ver­sary in October. I hope we can go with great news.

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by Mark Pouley on Mon Sep 12, 2016 10:22 am

Good luck to you and your husband. I know the news will be great and you will get to spend a joyous 25th in the mountains.

Mark Pouley
Name: Mark
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2015
Age at diagnosis: 53
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Re: Dear hubby's stem cell transplant saga

by dogmom on Thu Sep 15, 2016 7:01 pm

Can I get as big YEAH :!: He is in complete remission. No myeloma detected anywhere. Bone marrow clean, blood clean, x-rays show no new lesions, with the two prior ones showing calcification, and 24-hour urine normal. All labs normal, including CBC and kidney function.

His doctor suggested 3 months of consolidation with cyclophosphamide, Velcade (bortezomib), and dexamethasone (CyBorD) once a week, just like induction, just to give it an extra kick in the butt while it is down. He cited studies that show people with complete remission, in good heath, and tolerated chemo well have benefited by having a longer remission free time if consolidation given after a transplant. Then since he has the p14 gene depletion, he will go to Velcade maintainenance, a shot every other week. We are so happy. :D

dogmom
Who do you know with myeloma?: husband
When were you/they diagnosed?: December 2015
Age at diagnosis: 58
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Re: Dear hubby's stem cell transplant saga

by wekebu on Thu Sep 15, 2016 7:57 pm

Excellent news! My hubby is on Day +3. You give me hope.

wekebu
Name: Wendy
Who do you know with myeloma?: Hubby
When were you/they diagnosed?: Jan 2016
Age at diagnosis: 55
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