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.

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Did see that Enoxaparin is better than Eliquis guess just how it is. Take the dexamethasone for 2 days around the velcade. Worried about getting my next shipment of Revlimid since the pharmacy said cannot reorder online plus might want labs before reissue. Not scheduled until the 7th for myeloma labs and should begin the next 21 days in the 8th!!! Ugh. Nothing is easy! I too took very little! I am stunned to look at all the pull bottles lined up!!! Just hoping for good results soon!!!

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Profile picture for tml @tml

Lori, have been doing the daily shots but am now black and blue con both sides. One time it bled. Worried that this is a long haul and I am having these reactions only one week or so in…,

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Oh, I remember the black and blue belly areas. Not very attractive, but it’s a pretty common side effect. No bikinis for you this summer! 🙃
I just read up on Enoxaparin and it has a good safety and side effect profile. Much kinder to the system than Warfarin.
There can be some bleeding at the injection site. Remember, it is thinning your blood to help prevent blood clots…which is more of a worry than tummy bruises. I promise, they’ll fade.
You may not be on it long term because it is being used in conjunction with the Revlimid and steroids. Are the steroids being tapered?
Truly, I know the frustration of being on so many meds that have side effects. I was a walking pharmacy after being diagnosed with AML and then the transplant. Before that, all I had in my medicine cabinet was Vit D3! So it was one heckuva shock to find it necessary to have a huge pill box! At one point during treatment, my husband counted; I had 18 IV bags piggy-backed feeding into 2 ports! You’re fighting a blood cancer and it’s going to take some strong meds to move you past this. Basically, inside your body is a war zone right now and you need the proper artillery to win this battle. ☺️ There will be some collateral damage. But our bodies are remarkable in resiliency. To look at me now you’d never know the toll those meds took at the time. But they got rid of the cancer and gave me a second chance at life. You’re shooting for that same goal!

When’s your next doctor’s appointment?

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Profile picture for Lori, Volunteer Mentor @loribmt

Good morning. I happened to see the post about your injection in the transplant group first and responded there. So here’s the link to that one.☺️ I’m happy you took the plunge! Yay!! https://connect.mayoclinic.org/comment/691878/
OMG you’re not a wimp!! This is a lot to go through. You’ll get to be a pro about blood work soon enough. You can always ask me. 🙃

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Lori, have been doing the daily shots but am now black and blue con both sides. One time it bled. Worried that this is a long haul and I am having these reactions only one week or so in…,

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Profile picture for cwh @cwh

Hi Lori,
I thought someone mentioned not having an SCT for multiple myeloma, which my husband has. Moving between Iowa and Florida soon, they would have to collect in Florida and he's had 9 cycles and some difficulties with meds. He may have an SCT but not soon.

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Hi @cwh I seem to recall seeing that someone didn’t qualify for a SCT for MM and maybe that’s what you saw too. It’s not always warranted and unfortunately, now everyone is a candidate for the procedure. I did have a bone marrow transplant from an unrelated donor. It appears that most people having a stem cell transplant for multiple myeloma are able to use their own cells, as in the case of your husband. It’s still not an easy few months of recovery, but has fewer side effects such as rejection or graft vs host disease because they are the patient’s own cells. So I do hope at some point your husband is able to continue with the treatment. It can help give some longevity and a better quality to life.

So you’re moving from Florida to Iowa? Seems like you’re going the wrong way! The weather up here in the Midwest is still winter. We have minus 5 this morning in northern Wisconsin and it’s almost April. 🥶 You know my next question…why?

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi @cwh Would you mind telling me a bit more about your husband’s medical situation? Does he have multi myeloma or another blood cancer that requires a bone marrow transplant? What is his reasoning for not going through with the treatment?
I’m sorry, but I don’t quite understand what you meant about “How are you doing without it?” I’ve read through the previous post and you’re leaving me with a mystery. What am I doing without? ☺️

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Hi Lori,
I thought someone mentioned not having an SCT for multiple myeloma, which my husband has. Moving between Iowa and Florida soon, they would have to collect in Florida and he's had 9 cycles and some difficulties with meds. He may have an SCT but not soon.

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Profile picture for cwh @cwh

My husband won't do the transplant. How are you doing without it?

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Hi @cwh Would you mind telling me a bit more about your husband’s medical situation? Does he have multi myeloma or another blood cancer that requires a bone marrow transplant? What is his reasoning for not going through with the treatment?
I’m sorry, but I don’t quite understand what you meant about “How are you doing without it?” I’ve read through the previous post and you’re leaving me with a mystery. What am I doing without? ☺️

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Profile picture for Lori, Volunteer Mentor @loribmt

Hi Lisa! Been a while since we’ve had a chance to catch up. Wow, you’re coming up on your 2 year check already? Congratulations! I’ll be on my 3rd birthday in June. We’ll celebrate together…with my imaginary glass of champagne. Still no alcohol for me but I have lovely bottle of Welch’s grape juice in the fridge. 😅

I was happy to see you here in the MM group and just referred a newly diagnosed member (@tml ) to you, who is getting started with Revlimid and might be having a SCT coming up. Since I didn’t have an auto transplant, maybe you can give her a little more information about what she may expect in the future.
How are your grandkids and that little puppy who is now fully grown?

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My husband won't do the transplant. How are you doing without it?

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Profile picture for lisal64 @lisal64

Oh, and I was going to tell you! Best to stay off Amazon, if you are on Dexamethasone! 🤣😂💕

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😂😂. No kidding!!

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Profile picture for tml @tml

I think you are right. Actually am looking forward to the transplant now. Hope that can still happen. I probably should have connected before as I originally had little bone involvement. I was too lucky on my first round that I did not anticipate that I might not actually be in remission! Guess I am feeling a bit better as have begun to shop! My poor husband! Loved your pictures and your dog is so big. Mine died a few years ago. Cancer. He was a Chinese Shar Pei mix. Hard to say but the vet recommended to me a Seresto dog collar and within a few months the cancer. Cancer is everywhere it seems! Cannot seem to get away from plastics either. Of course the goal is now to try and manage this and I have found this site to be extremely helpful especially when I have been down about care and treatments and those numbers!!! It is hard to know what is impacting on those ups and downs. Am waiting for my regular bloodwork to post as also worried about kidneys and liver and glucose. All have been well so far, but if get to a second remission there will be nothing to impede a transplant.

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Oh, and I was going to tell you! Best to stay off Amazon, if you are on Dexamethasone! 🤣😂💕

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