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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Paul J's initial treatment & stem cell transplant story

by Hopeful1 on Sun Jul 23, 2017 2:47 pm

Hi Paul.

Continuing to follow your recovery journey and am so happy all is going well. Sorry to hear your wife incurred an injury to her knee. Blessing to continued and quick healing to,you both.

With courage and fear, I begin my harvest for a tandem transplant on August 4. All going well, will return for transplant on the 11th. I am told we will re-stage, bone marrow biopsy, 60 days out and then, if all looks good, begin the 2nd round "tandem" transplant. High risk for relapse and doctors feel this is best.

I will have to move 2 hours away from my home, family and the greatest friend support system one could wish for. My dear sister-in-law will travel with me, family and friend visiting as they can.

Much appreciation for you, Colin, and Joe for sharing your stories. The first-hand accounting of the procedure and days following have helped me greatly. Huge thank you to all.

Love and peace to all effected by multiple myeloma.

Hopeful1
Name: Hopeful1
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2016
Age at diagnosis: 56

Re: Paul J's initial treatment & stem cell transplant story

by Hopeful1 on Sun Aug 06, 2017 7:35 pm

Harvest begins tomorrow if the shots have been effective. Auto transplant set for August 15. Tandem suggested. Details to follow.

Thank all for sharing your experience. I will try to post my progress Blessing and good health to all.

Hopeful1
Name: Hopeful1
Who do you know with myeloma?: Self
When were you/they diagnosed?: March 2016
Age at diagnosis: 56

Re: Paul J's initial treatment & stem cell transplant story

by Castaway on Sat Aug 12, 2017 1:04 pm

Colin and Paul,

I hope all is going well for both of you. I haven't posted here due to my wife's ongoing issues and two surgeries. Looks like she is is doing much better, so I have time to catch up.

Just curious how labs and recovery are going for both of you.

I am now Day +59. For some reason, my WBC has dropped to 2.5. But I am most concerned about my neutrophil (ANC). It's been 0.8 since I came home. Never lower or higher. I had an infusion for that but it didn't increase.

More tests this week and a possible bone marrow biopsy.

Castaway
Name: George
Who do you know with myeloma?: just myself
When were you/they diagnosed?: 1/24/14
Age at diagnosis: 62

Re: Paul J's initial treatment & stem cell transplant story

by paj1965 on Thu Oct 19, 2017 3:36 pm

It has been about a year since my initial diagnosis with multiple myeloma, and just past 100 days since my stem cell transplant. I'm celebrating by spending a long weekend in a rented beach house on Galveston Island with my family. Lot's of sun, wind, water, food, and fun. Good to be alive.

It's been some time since I lasted posted, but that's because there simply hasn't been much to say. Since my last post, things have progressed steadily to the point that my latest test results indicate that I am mostly recovered from the transplant, with my white cell counts in the normal range. I somehow managed to avoid any illness throughout the recovery period, and the doctor tells me that I am a poster child for how to recover from a stem cell transplant. Hair is filling back in nicely. I have been cleared to return to full time work at the end of October.

We'll start vaccinations in a few months. Beyond that, not much to say about the stem cell transplant.

The latest blood work shows:

WBC = 4.9
RBC = 3.96
Hgb = 13.3
Platelets = 236

So, looking good.

Now, as far as the myeloma, it looks like the stem cell transplant did a good job of bringing the M-protein level down substantially, but didn't completely eradicate it. My original level was 1.5 g/dL (not very high to begin with), and post transplant it dropped to 0.3 g/dL. Kappa free light chain level is 10.99 and lambda level is 2.36. I met with my myeloma doctor last week and we are going to start a maintenance regimen of 10 mg Revlimid to keep things in check.

Oh, one other thing. My wife/caregiver who tore her ACL the first night we were back at our house is recovering nicely as well.

That's where things stand right now. Time to put the stem cell transplant behind me and live life.

Best wishes to y'all!

paj1965
Name: Paul
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/28/16
Age at diagnosis: 51

Re: Paul J's initial treatment & stem cell transplant story

by dbsmithiii on Thu Oct 19, 2017 4:13 pm

Hi Paul,

Thank you for sharing your story and updates. I am just starting my journey and am similar in age to you, so I am learning a lot from this forum. I hope in a year I too will be posting good news!

Doug

dbsmithiii
Name: Doug
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 15, 2017
Age at diagnosis: 50

Re: Paul J's initial treatment & stem cell transplant story

by paj1965 on Wed Oct 25, 2017 8:59 pm

Doug,

Best wishes to you as you start your journey. The first few months were the hardest for me because of the uncertainty about how far things had progressed, what my treatment options were, and how I would respond.

Hang in there!
Paul

paj1965
Name: Paul
Who do you know with myeloma?: Self
When were you/they diagnosed?: 12/28/16
Age at diagnosis: 51

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