Myeloma newly diagnosed

@treehouse5437 I imagine you went through MGUS then SMM before the multiple myeloma diagnosis? Of course you have a lot to process, including: what do I do now, what treatment is right for me, how long before I know if it is working, what do I need to do to change my diet, should I keep working, how much do I tell my family/friends, etc. Right? Ask away, here!

Like you have probably read here and other groups on Mayo Connect, every person is different, each case is unique. What we have in common is a diagnosis. For multiple myeloma, there are several different types, and it will help you to understand the different ones. As far as treatment, align yourself with a good hematologist/oncologist that you trust. If you have comorbidities, treatment may need to be tailored to fit around all that.

There are many myeloma patients with many stories. I don't know that you can find an average lifespan, given all the factors. But I do know people with 20+ years of myeloma diagnosis! Medical cost is a subject for you and your insurance. Being off work is necessary if your energy/side effects are too much to handle.

Mayo Clinic, in conjunction with the International Myeloma Foundation, offers a monthly Zoom support group, usually the third Saturday of each month. Contact Miceli.Teresa@mayo.edu to get on the list to be invited.
Ginger

Got to hang in there maybe something will happen

I’m sorry you belong now to a group of us dealing with Everest. I call my C this because it a continuous battle climbing to the top which is not easy but a go al point.
The best advice I can give you is be impeccable with your words. Create a positive world and believe you are already healed. Our minds create things. Good and bad. Try to control your destiny as much as you can. Having faith and envisioning a health you can work wonders. Good luck to you and believe 😇

No MGUS- Anemia for the past year and then MM diagnosis.

Hmm I had fractured hip. Then Anemia, then MGUS . Spike disappeared in about 8 months. However I did learn upon reviewing my blood work, M spike there off and on. act time it comes back a bit higher. There since 2019. M spike a little higher each time.

Hello-

First treatment this coming week- those that are/were working at start of your MM treatments did it help to take time off. Could do short or long term disability from work- short would be eight/ten weeks.

Presents symptoms before treatment are fatigue from anemia and few minor aches now and then... nothing bad. 🙏🏻
Late 50's

Thank you.

I am so sorry you had to hear the word: "uncurable." 15 years ago I, too, heard those words when diagnosed with Follicular Lymphoma and panicked. My oncologist and my support system talked me off that ledge. At the suggestion of another FL patient, I requested a clinical trial. I mention this as this trial paid for ALL my costs.
Recently I have started treatment for my first relapse with a newer immunotherapy drug, "Gazyva," not available during my first round of treatments. New medicines are being developed all the time and now I am experiencing that gift. Back to finances, in my recent pre treatment visit with the cancer center's social worker, I found I was eligible for support from the Leukemia & Lymphoma Society, another gift.
Closing words from Emily Dickenson: "Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all." Hopeful for you.

@rmbruins Welcome to Mayo Clinic Connect! Your story is one that several others might echo, definitely. New treatment options are being developed all the time for blood cancers.

Perhaps a better word is "containable" rather than "incurable". What do you think?
Ginger

I too am in my late 50s. I was diagnosed with MM a little under two years ago. Following some time with anemia, ancouple of fractures that did not show up on X-ray, and severe back pain. I was in the hospital for a week, started treatments there. And went back to work following the hospitalization until I got my stem cell transplant. I found work to be helpful although I’m not sure my judgment was the greatest. I also felt the need to save paid time off and FMLA time for the time of stem cell transplant, which required a lot of time off. Everyone is different of course, and I’m lucky to have a supportive job. If I had not, I would need to take time off to deal with it all after I was newly diagnosed . My initial treatment was difficult-dizziness, fatigue, cognitive impairment. They shifted things around a bit once I got my genetics back and actually I ended up on routine that was more manageable. I’m sorry you are in this whirlwind and really would like to be helpful. Support groups do you have a ton of tips and tricks and can be profoundly reassuring. I am working 30 hours a week now, I have a a very flexible job, which I need to deal with everything. And of course worries about insurance coverage are always looming. .Hope you keep the questions coming.Take care.

Thank you! 😊