Want to talk about Multiple Myeloma: Anyone else?

Posted by Frazer 1 @frazer1, Apr 11, 2012

Asking anyone who is going thru this experience to share any pro's or con's of this disease. As of now I'm in MGUS, will find our next week if it has progress to Smoldering Myeloma.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Profile picture for Lori, Volunteer Mentor @loribmt

Oh my gosh, you look great! Look at that happy smile!! Haha no way was I looking that perky 5 days after transplant. You look amazing!

I know it doesn’t feel like it right now but this was a very positive step you took for a longer, healthier life. By the end of your two weeks you’ll be feeling much better, bruises will be gone and energy will slowing make a return. Lucky duck! I had to stay 4 months!

Are you close to the clinic with your lodging? Do you have to return daily for bloodwork?

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I haven't been released yet...
I'm about an hour away, so not bad.

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Profile picture for wyom1998 @wyom1998

The estimated stay is 2 weeks. At 64 stage 1 I am praying my aggressive agreement to my care plan will yield positive results.

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Oh my gosh, you look great! Look at that happy smile!! Haha no way was I looking that perky 5 days after transplant. You look amazing!

I know it doesn’t feel like it right now but this was a very positive step you took for a longer, healthier life. By the end of your two weeks you’ll be feeling much better, bruises will be gone and energy will slowing make a return. Lucky duck! I had to stay 4 months!

Are you close to the clinic with your lodging? Do you have to return daily for bloodwork?

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Good morning, @wyom1998 Don’t despair! I know this is a crumby period being only 5 days after transplant. But big, positive changes are coming for you.

In the next week you’ll continue to be in a very low period and not feeling your perkiest. It’s from the conditioning chemo. Remember, it had to clean out your bone marrow to make a squeaky clean home for the newly replanted stem cells collected from you last week. That will cause your body to become neutropenic and at some point in the next week your blood numbers will plummet. You will get your -0- account balance. 🙃

You will continue to be tired, bored, nauseous and achy but then the magic happens! Engraftment. Your numbers will pick up again as your marrow starts producing new blood cells. The white blood cells will rush to the rescue and have you feeling better in no time!

How long will you have to remain near the clinic after transplant?

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The estimated stay is 2 weeks. At 64 stage 1 I am praying my aggressive agreement to my care plan will yield positive results.

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Profile picture for wyom1998 @wyom1998

Day 5 after transplant. I chose to go right from collection to transplant,
I'm Tired, bored, nauseous, achy, count on neutrils still 1,300.
I never thought I would want an empty account at -0- in my life.
I really want to start up the other side.

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Good morning, @wyom1998 Don’t despair! I know this is a crumby period being only 5 days after transplant. But big, positive changes are coming for you.

In the next week you’ll continue to be in a very low period and not feeling your perkiest. It’s from the conditioning chemo. Remember, it had to clean out your bone marrow to make a squeaky clean home for the newly replanted stem cells collected from you last week. That will cause your body to become neutropenic and at some point in the next week your blood numbers will plummet. You will get your -0- account balance. 🙃

You will continue to be tired, bored, nauseous and achy but then the magic happens! Engraftment. Your numbers will pick up again as your marrow starts producing new blood cells. The white blood cells will rush to the rescue and have you feeling better in no time!

How long will you have to remain near the clinic after transplant?

REPLY
Profile picture for Colleen Young, Connect Director @colleenyoung

Wow, Wyom1998, your transplant is just around the corner.

I see you've downloaded @jimbond48's book to your Kindle. What's key takeaway or tip that really resonated for you? Any "a-ha" moments?

Have you also met @loribmt? You might appreciate this related discussion:
- My Bone Marrow Transplant (BMT/SCT) story: Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

What questions or thoughts do you have as you prepare for the upcoming transplant?

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Day 5 after transplant. I chose to go right from collection to transplant,
I'm Tired, bored, nauseous, achy, count on neutrils still 1,300.
I never thought I would want an empty account at -0- in my life.
I really want to start up the other side.

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Profile picture for tml @tml

Sadly when they said I would have a shorter than average remission, I asked why and she said genetic. I thought I can’t do anything about that. Now I know the doctor meant the myeloma DNA not mine. Again I misunderstood. Seeing that DNA and what genes were detected and what is missing was a shock. No wonder it is so difficult to fight!

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Agreed. Knowledge is power. Hidden knowledge is criminal. oldkarl

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Profile picture for Ginger, Volunteer Mentor @gingerw

Oh, dang! Hope you have an ereader or project to keep you busy. I took the shuttle from Minneapolis/St. Paul to rochester. Never knew it would be a long ride! Lots of corn fields. Told a fellow passenger that I thought we were being kidnapped, much to his amusement.

Relax tonight, have your questions handy, something to keep you busy during downtime [even if it is a restful shuteye], be sure you have a couple of layers to change out of if your body temp need coddling. And give your husband a big hug for being there for you, let him know how much this means to you!
Ginger

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Have books on Overdrive but mainly texting! Should read since a few are going to be checked back in soon. Used to live in Indiana. Lots of cornfields there!

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Sadly when they said I would have a shorter than average remission, I asked why and she said genetic. I thought I can’t do anything about that. Now I know the doctor meant the myeloma DNA not mine. Again I misunderstood. Seeing that DNA and what genes were detected and what is missing was a shock. No wonder it is so difficult to fight!

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Profile picture for tml @tml

Well got up at 3 for the 6:45 flight. Plane had a service issue so we had to deplane and wait. Loaded us back on but arrived as they were loading the Rochester plane. Rushed from terminal C to A and got there a few minutes after they closed the door. The next flight is 4 and were supposedly rebooked but listed as standby. Called hotel to say still coming and they suggested the shuttle, called said 2 spaces left but after going from c to ground they were gone. Now booked for the 2 so Hope we get there by 4 instead of just flying out! And tomorrow at 7:30! No fun yet!

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Oh, dang! Hope you have an ereader or project to keep you busy. I took the shuttle from Minneapolis/St. Paul to rochester. Never knew it would be a long ride! Lots of corn fields. Told a fellow passenger that I thought we were being kidnapped, much to his amusement.

Relax tonight, have your questions handy, something to keep you busy during downtime [even if it is a restful shuteye], be sure you have a couple of layers to change out of if your body temp need coddling. And give your husband a big hug for being there for you, let him know how much this means to you!
Ginger

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Profile picture for tml @tml

Well got up at 3 for the 6:45 flight. Plane had a service issue so we had to deplane and wait. Loaded us back on but arrived as they were loading the Rochester plane. Rushed from terminal C to A and got there a few minutes after they closed the door. The next flight is 4 and were supposedly rebooked but listed as standby. Called hotel to say still coming and they suggested the shuttle, called said 2 spaces left but after going from c to ground they were gone. Now booked for the 2 so Hope we get there by 4 instead of just flying out! And tomorrow at 7:30! No fun yet!

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Most seem to be on Revlimid. I was fine with Datzalex but think they ignored the spot on my rib seen on the first CT scan but then was determined not to be an issue. Saw that when reread everything but too late. Was wary though that I was actually in remission. Wish I had acted on that premonition but then they were do positive I was, went with that!

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