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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Profile picture for tml @tml

You are wonderful! I called my insurance again and hoping to get something soon!!! Glad you encouraged me to try again!!!

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Oh that’s awesome!! We have to be our own advocates and it’s ok to be pushy! It’s your health at stake. I call it being respectfully assertive. You can be pushy but be nice too!! 😂 My mom said, “You get more flies with honey than vinegar.” And that has stuck with me for many decades. But I find it helps get people on your side with a little more compassion and understanding! I hope all goes well at your appointment. Will you me know how it goes?

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You are wonderful! I called my insurance again and hoping to get something soon!!! Glad you encouraged me to try again!!!

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Profile picture for tml @tml

No and I hate to keep asking. Called insurance who said through physicians and only had old paperwork. Nothing current. No one called me but says 4-5 days for insurance part which might be up tomorrow or Friday.,had Mayo do it but perhaps would gmjave gone faster here but thought if done one the 3rd would be faster. Maybe not as my health care provider is here. Guess will as if he can check into it or facilitate. Again perhaps in my blush to get faster I slowed it down.

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Push to get faster…

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No and I hate to keep asking. Called insurance who said through physicians and only had old paperwork. Nothing current. No one called me but says 4-5 days for insurance part which might be up tomorrow or Friday.,had Mayo do it but perhaps would gmjave gone faster here but thought if done one the 3rd would be faster. Maybe not as my health care provider is here. Guess will as if he can check into it or facilitate. Again perhaps in my blush to get faster I slowed it down.

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Profile picture for tml @tml

No word. Nothing. Very worried. Wish I had some better news. Thanks for the encouragement! Sadly I am nauseous today so hopefully can get to the appointment!!!

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Oh nausea is nasty. I can empathize…had months of that. If I may offer a suggestion, try not to miss the appointment because of it. It’s really important you see the new doctor!
So, take a gallon ziplock baggie with a folded paper towel inside. Works as an emergency ‘catch all’ if you get my drift! You can put that in a nice tote or inside your purse. Just in case! And for now, a cool washcloth to the back of your neck can help. 🙂
Speak with your doctor about the prescription that is needed and see if they can expedite things. I’d be hounding my insurance provider at this point. Do you know if they’ve been contacted about your new med?

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No word. Nothing. Very worried. Wish I had some better news. Thanks for the encouragement! Sadly I am nauseous today so hopefully can get to the appointment!!!

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Profile picture for tml @tml

I only thought about staying in the middle of last night. Emailed them but not an option now. Am always too tired now to make rational decisions. Waiting for shuttle to airport. I am changing doctors at home although still with same health system. Have an appointment next Tuesday. I have to go tomorrow for my final Velcade shot at the old place. Hope to never see it again! Just hope shuttle gets to the airport in time. Worried because got a request to change to 10:30. Already close at 9:30! How many other horrible things can happen!!! Maybe overbooked?

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Good morning! I just wanted to wish you good luck with your appointment today! I hope this new clinic/doctor/team jumps on board with the latest treatment plan and gets you the help you need. Your second opinion at Mayo gave you hope for a new start in reaching remission and having the stem cell transplant. You are strong, so stay positive! You’ve got this! ☺️
Has your new prescription been filled yet?

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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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I have to agree with Lori, @wyom1998. You look radiant. I thought I'd check in and see how you are doing? Sending good vibes.

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Profile picture for tml @tml

Guess will have here as the place I will likely be referred back to the place that said I was not a candidate for a transplant.
If had there right after my remission not an issue. Not sure why. It was 5 months to get to remission before and each time harder in the body. Have had a horrible 2 months where I do not sleep. I know there is hope but I keep thinking of what should have been. Why did I not push for a transplant?

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Not your fault. You didn't know. It's what we pay our doctors for, medical advice, such as it is. There may be a reason for all this, above and beyond us we cannot see right now.

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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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I am sure it will!!! Congratulations to you! So happy you were able to do it. Always best to be aggressive early as I am now learning! All the best!

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