Does anyone else have MGUS?

Sounds simple but complicated. My Electrophysiologist (Heart Rhythm Doctor) is so busy, he had to see me during his lunch break. He’s the boss of 35 other doctors , so he has no time for a conference call. My .PCP is so busy teaching other doctors, in the beginning of July I scheduled my next appointment. I set it up and guess when it is, January 6th, 2023. That’s just two of my Doctors, my Oncologist/.Hematologist is also the top boss in the Oncology Department. My Neurologist is in a different hospital altogether. Sounds simple but complicated huh. November will be here before they could all find the time.

Plus I think my Oncologist is bringing in another doctor for consolation and may also bring a Geneticist to the team. Thanks for caring. Becky

@gingerw,
Can I ask you how long you had MGUS before it progressed to MM? Did you ever have any symptoms with MGUS at any time? Thanks for your encouragement and help. And I will keep you in my prayers during your chemotherapy.

@1oldsoul I had a first dose of Evusheld in February. In two weeks I will get a booster. No reaction the first time around! Be prepared to sit for an hour after they give you the shot, that is the protocol, to watch for any reactions.

In Jan and Feb 2021 I had doses of Pfizer vaccine, then 3rd shot of that in August, plus 4th dose in March this year. No reaction to any of them.

I had MGUS IgM kappa, that progressed to multiple myeloma in 2019, before Covid. At this time I am actively on chemotherapy. Please let me know if I can answer any questions for you. A new diagnosis can be scary, and having a support team is a comfort. My biggest piece of advice is please do not do the "Dr. Google" thing! It can send you down a rabbit hole and dump you out who-knows-where, filling you with worst case scenarios! The biggest majority of people never progress beyond MGUS.
Ginger

Hi Ginger and thank you for the reply. My hematologist is aware that I have not had a Covid vaccine and he stated they would not work for me anyway. I was too reluctant to take the regular Covid vaccine after seeing all the terrible side affects on VAAERS. He recommended the Evusheld vaccine at my appointment with him yesterday. Just wanted to find out if you had any reaction at all from it. I have never had a reaction to flu or pneumonia vaccines. I am looking forward to reading the discussions here as this diagnosis is pretty recent for me. Right now I am being monitored every 3 months as my IGA and IGG have continued to fall and my IGM continues to rise although he is not too concerned “yet”

@1oldsoul Welcome to Mayo Clinic Connect!

A few questions come to mind as I read your post. Have you experienced reactions to vaccines or their components in the past? Is your hematologist aware you have not had any Covid-19 vaccines, yet? What prompted him/her to recommend Evusheld for you?

Evusheld is a pre-exposure prophylaxis for people who may be immunocompromised or have medical conditions that put them at high risk. Here is some additional information from their website: https://www.evusheld.com/en/patient

Within our transplant group, there is a discussion about Evusheld, also, that you might want to read: https://connect.mayoclinic.org/discussion/evusheld/

I'd like to know your thoughts on this!
Ginger

Dear MGUS Newbie,
Welcome! I’ve had MGUS since age 75. I’m now 82, hypertensive, have metabolic syndrome obesity, use an APap for sleep apnea, have NAFLD (non-alcoholic fatty liver disease) Hashimoto’s hypothyroidism and probably other things I don’t even know about. Deciding to take covid vaccines was easy for me. Considering my risks, I need to protect myself in the best ways possible!

Since I watch ethical major news networks (and absolutely never watch Fox or OAN,) I don’t do social networking at all, so certainly would never rely on them for factual information. I keep informed by experts interviewed on factual news channels. The experts, namely physicians and epidemiologists, have said this is an “epidemic of the unvaccinated.” They said that before omicron and its variants. I tend to believe their helpful commentary.

We can learn from them.

A variety of covid vaccines are being used around the world. If they weren’t saving lives they would not be so popular. I chose to use Moderna and had both first two innoculations, as prescribed, (Very slight side effects. I thought I felt lethargic but might have been imagining that.) Also had both half-dose boosters. Even though I had the post-omicron dosage amounts of Evusheld, (with absolutely no side effects) I will plan to get the bi-valent (two covid virus strains) of Moderna shots when they come out. And, like every year, I will get my flu shot, seeking a pharmacy which carries Sanofi quadrivalent fluzone, being certain to get the senior, larger dose amount. It is many years since I’ve had the flu, so I believe those flu shots helped. My question will be which month to get it this year, so I’ll email my wonderful PCP to ask the timing he advises.

It is difficult to understand vaccine hesitancy. An in-law cousin’s brother was born with autism and she blames innoculations. Recent knowledge has come from doing imaging on 6 month old baby brains. Autism differences were noted even then, at that early time before they get any shots.

Innoculations are tools which help keep us well. I plan to always stay up to date with mine.

Suggest you look within and ask yourself why you are hesitant. Then ask whether your current belief is helpful to you. Here’s a quote from my grandmother; “I keep my mind clean by changing it often.”

Suggest get courageous and face the needle. Well, not quite. It will be your other end which receives a pair of needles! Wishing you all the best!

Hi, I just joined and saw your post about Evusheld. I was just diagnosed with MGUS last year and my hematologist just recommended the Evusheld yesterday. I have not taken Covid vaccine previously. Just want to ask if you ever had a reaction to it? I’m 68 and a bit nervous about vaccines.

I’m sorry. It must be very frustrating. Even so, four doctors should get themselves on a Zoom call or two and decide before November.
Does your treatment facility have a medical social worker? They can coordinate things like that if you have a good one.
It makes no sense to me that someone with a complex medical history wouldn’t be first in line. Ask about the social worker.
Hugs.

Lori, switched the loading sequence but that caused a problem. It talks about AL Amyloidosis but I forgot the definition of AL. I Googled it and that only created more confusion. Since I have multiple family members (4) besides me, that died from mysterious heart issues, I was led to think I might have the hATTA-CM Amyloidosis which is the Hereditary Amyloidosis.

Then that’s when I Googled the meaning of the AL. Now I’m really confused because of what it means and what’s wrong with my blood. AL means light chain Amyloidosis. I know what you’re going to say, ask your Oncologist, but I don’t want to bother her anymore unless it’s extremely important. I don’t even know how to explain this to you without confusing you too. I assume you know I have MGUS that is classified as being precancerous and is progressing into cancer. Here’s the Enigma, AL means the Amyloidosis is light chain. My official classification of my MGUS is “Kappa light chain IgM”. See the same two words in both of them, Is that just a coincidence or is that a clue to my Amyloidosis being AL and/or hATTR-CM. If the guess or answer is out of your knowledge, I’ll understand. Thanks for being there for me!!!

It’s a long story but I was born with. 1 in a million heart birth defect. It’s because of the defect that causes difficulties scheduling any decisions for a procedure or taking any medications. My PCP, Neurologist and Oncologist were worried about severe pain in my entire brain. Since my 39yo sister died from a rare brain tumor, all three doctors agreed, they needed MRI’s done. Sounds simple right? Not with a $25,000 loop recorder under my left breast that could be ripped out of my chest by the machine. Hold on the hospital says, we need special instructions from the manufacturer, From there it went downhill in a hurry. Lets just say, it took almost 2 months to get all the paperwork done, all the T’s crossed, all the I’s dotted. Then came the scheduling, oh no, another month goes by, people are switching time slots just to fit me in.

The night before the procedure, they’re calling me to make sure I’m coming, yes I replied. One major problem, the day before, I was sitting next to a friend for two hours talking. I wear a good quality mask since I have an almost nonexistent immune system, my friend did not have one on. The morning of the tests, I wake up with a fever of 102.7 at 4am. Not knowing what I had, at 6am I canceled multiple appointments.

To your question, I have a special heart problem that 4 doctors must agree on any procedure or treatment can occur, my Oncologist is one of them. With my heart defect being so rare, 1 in a million, they want to keep me alive to do the procedure to repair it. Since any treatment my Oncologist could try on me could kill me because of the defect. It took almost 3 months just to get an MRI scheduled, imagine being only 1 of only roughly 350 people in the whole United States with this defect. Nothing is going in or out of this body without all 4 doctors in agreement. At present, a geneticist is being added to the list soon. Oh well, such is life!!!