1. < Blood Cancers & Disorders

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.

Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 13, 2022
In reply to @allu "Hi I just found out back end of last summer I have no support still just..." + (show)
@allu

Hi I just found out back end of last summer I have no support still just trying to find out as much as I can about it my asthma Dr found it he sent me to other Dr he confirmed it
Ihe has done blood work every 3 months or so have had people praying for me
Dr has said so doesn't seem to be affecting me had none scan and none density also
My family could care less always been like that with me
I'm just wondering if I should get a appointment at Mayo clinic to see what they can do and tell
My Dr said nothing I should be doing or not doing I asked him no to both sorry I ramble just fill like I have to king time bomb inside me could go off anytime I have several other chronic illnesses I feel like how am I going to know I'm already fatigued from those illnesses does insurance
cover mayo clinic
Thank you so much hope you are doing well

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@allu First, welcome to Mayo Clinic Connect. It certainly can be overwhelming to receive a diagnosis like multiple myeloma and have many questions! What specifically has your doctor told you? Is is a precursor to mm like MGUS or smoldering multiple myeloma? Do they plan to "watch and wait", which indicates to me that you may have MGUS. I know there must be som many questions in your head right now that it is hard to relax, hard to get rest. Take a few deep breaths, and we will get through this.

Having other chronic illnesses can add in to the stress you are feeling. Take some time and write down what you feel each day, how you are coping with everything. Being able to look at symptoms and feelings may help you a lot to relax.

I put in the link about insurance at the end of this. The Mayo campuses are busy places. There may or may not be available appointments for you. I think a lot depends on what your doctor says, as far as if you want to think about getting an appointment. Here is a link to use. http://mayocl.in/1mtmR63
Insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Any further questions for me?
Ginger

REPLY
1 reply
ally | @allu | Apr 13, 2022

Dr has said that mgus and smoldering I just really need some other people I can talk to since I don't really have anyone and people who know about my
Thank you so much for answering me

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Mentor
Lori, Volunteer Mentor | @loribmt | Apr 14, 2022
In reply to @tml "The pharmacy said would call when received the prescription. Guess it is in process but I..." + (show)
@tml

The pharmacy said would call when received the prescription. Guess it is in process but I will not be happy until I know it is shipped. Tomorrow is my dictor appointment so will talk with her about scheduling as would be good not to be down to the wire. It is already Wednesday and need by Friday so still a bit stressful for me. since the numbers have come down with only one month, I am hoping that will be true for this second round! Revlimid makes me so tired but worth it. I just wish I did not have the bone issues as 24/7 I feel the effects of the lesions. Not terribly painful but z sort achingly uncomfortable which is adding to my stress. Maybe with some better weather. Will see if my doctor can schedule as you do so that there is more time for processing the labs. Not sure why some are sent to Mayo but that is what they do!

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Good morning @tml Thought I’d pop in to see how you’re doing today. Did your meds get to you on time for the next round?

REPLY
1 reply
tml | @tml | Apr 14, 2022
In reply to @loribmt "Good morning @tml Thought I’d pop in to see how you’re doing today. Did your meds..." + (show)
@loribmt

Good morning @tml Thought I’d pop in to see how you’re doing today. Did your meds get to you on time for the next round?

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Yes I did. All going well so far on second round so far. Guess all depends on next set if numbers. Hope good first ones aren’t just a fluke!!! I hope I can achieve remission although worry it will be longer than last time. Still getting Velcade, dexamethasone and Zometa so hopeful!

REPLY
2 replies
Mentor
Lori, Volunteer Mentor | @loribmt | Apr 14, 2022
In reply to @tml "Yes I did. All going well so far on second round so far. Guess all depends..." + (show)
@tml

Yes I did. All going well so far on second round so far. Guess all depends on next set if numbers. Hope good first ones aren’t just a fluke!!! I hope I can achieve remission although worry it will be longer than last time. Still getting Velcade, dexamethasone and Zometa so hopeful!

Jump to this post

Remember about that pesky worrying… Just go with this and keep on being positive that these first good numbers are going to keep heading in the right direction and you’ll achieve remission. Who knows, it won’t take as long, and even if it does, you have a plan for when you get there! ☺️ Annoying, aren’t I?

REPLY
ally | @allu | Apr 14, 2022
In reply to @gingerw "@allu First, welcome to Mayo Clinic Connect. It certainly can be overwhelming to receive a diagnosis..." + (show)
@gingerw

@allu First, welcome to Mayo Clinic Connect. It certainly can be overwhelming to receive a diagnosis like multiple myeloma and have many questions! What specifically has your doctor told you? Is is a precursor to mm like MGUS or smoldering multiple myeloma? Do they plan to "watch and wait", which indicates to me that you may have MGUS. I know there must be som many questions in your head right now that it is hard to relax, hard to get rest. Take a few deep breaths, and we will get through this.

Having other chronic illnesses can add in to the stress you are feeling. Take some time and write down what you feel each day, how you are coping with everything. Being able to look at symptoms and feelings may help you a lot to relax.

I put in the link about insurance at the end of this. The Mayo campuses are busy places. There may or may not be available appointments for you. I think a lot depends on what your doctor says, as far as if you want to think about getting an appointment. Here is a link to use. http://mayocl.in/1mtmR63
Insurance: https://www.mayoclinic.org/patient-visitor-guide/billing-insurance
Any further questions for me?
Ginger

Jump to this post

When should I get a second opinion and is that all there is too do wait and see and get blood work done every 3 to 4 months
How do you get this never heard of this kind of cancer until me of course the most rare kind I get I have watched so many people die with several other types of cancer
Is this mgus hereditary have I always had it inside me if it wasn't for .y asthma Dr I wouldn't know about it

REPLY
2 replies
tml | @tml | Apr 14, 2022
In reply to @tml "Yes I did. All going well so far on second round so far. Guess all depends..." + (show)
@tml

Yes I did. All going well so far on second round so far. Guess all depends on next set if numbers. Hope good first ones aren’t just a fluke!!! I hope I can achieve remission although worry it will be longer than last time. Still getting Velcade, dexamethasone and Zometa so hopeful!

Jump to this post

No, not really. You are keeping me sane!!! I am so thrilled to be on Revlimid and it does seem to be working well. I need to ask my doctor just what numbers say remission. Not sure from the last time as not what I would have thought but guess it was based more on the bone marrow biopsy. the sun is shining and Easter almost here so all is good!!!

REPLY
1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Apr 14, 2022
In reply to @allu "When should I get a second opinion and is that all there is too do wait..." + (show)
@allu

When should I get a second opinion and is that all there is too do wait and see and get blood work done every 3 to 4 months
How do you get this never heard of this kind of cancer until me of course the most rare kind I get I have watched so many people die with several other types of cancer
Is this mgus hereditary have I always had it inside me if it wasn't for .y asthma Dr I wouldn't know about it

Jump to this post

@allu MGUS is not that uncommon. It is a "precancer" if you want to look at it that way. The standard protocol is to watch and wait, that is, monitor with blood tests every 3 or 6 months as the doctor may advise. There are specific values your doctor will be watching for. Most people go for many years with no further complications.

Following a good healthy diet, get exercise, minimize your stress, all work together to help you feel your best, no matter your health situation. And it works like this for MGUS, also! At the end of this post is the link the Mayo Clinic has for information about MGUS. I hope this answers your concerns, but again, I will help you as much as possible.
https://www.mayoclinic.org/diseases-conditions/mgus/symptoms-causes/syc-20352362
Ginger

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Apr 18, 2022
In reply to @allu "When should I get a second opinion and is that all there is too do wait..." + (show)
@allu

When should I get a second opinion and is that all there is too do wait and see and get blood work done every 3 to 4 months
How do you get this never heard of this kind of cancer until me of course the most rare kind I get I have watched so many people die with several other types of cancer
Is this mgus hereditary have I always had it inside me if it wasn't for .y asthma Dr I wouldn't know about it

Jump to this post

@allu, you can get a second opinion at any point during diagnosis and/or treatment. Here is an blog post about the benefits of a second opinion:
- Generally Speaking: Seeking Second Opinions https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/seeking-second-opinions/

Also see this discussion and tips from fellow members:
- How do I get a Second Opinion (cancer)? https://connect.mayoclinic.org/discussion/second-opinion-8/

Are you considering a second opinion at Mayo Clinic?

REPLY
1 reply
ally | @allu | Apr 19, 2022
In reply to @colleenyoung "@allu, you can get a second opinion at any point during diagnosis and/or treatment. Here is..." + (show)
@colleenyoung

@allu, you can get a second opinion at any point during diagnosis and/or treatment. Here is an blog post about the benefits of a second opinion:
- Generally Speaking: Seeking Second Opinions https://connect.mayoclinic.org/blog/cancer-education-center/newsfeed-post/seeking-second-opinions/

Also see this discussion and tips from fellow members:
- How do I get a Second Opinion (cancer)? https://connect.mayoclinic.org/discussion/second-opinion-8/

Are you considering a second opinion at Mayo Clinic?

Jump to this post

I'm not sure where or when should I get a second opinion
I'm still trying to find out about this illness

REPLY
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