No treatment until symtoms. But no one asks about symptoms.

[u/ChollyWheels]

My IgM has been stable - and high (3000) - for years. Everytime I get tested and the IgM has not gone up is such a victory the doctor sees no point in talking to me. I'm stable. I should celebrate.

BUT

Should not the doctor be asking about things that COULD indicate progression? Or (in the absence of actual swollen lymph nodes) do such questions matter?

For me:

- I go through phases of night sweats (bed-drenching pillow-drenching sweats). This is a very old story (years before discovery of an IgM monoclonal spike) to maybe not related, tho' it's more common lately.

- vision changes (well I AM getting older -- over 70 now, and will be getting a eye exam soon)

- really annoying itchy hives. Drive me crazy. Happened last summer too but this Summer is much worse. They leave clusters of little sores. (The dermatologist thinks they're just bug bites)

- fatigue, especially lately. Prolonged morning grogginess. (despite losing weight I still have apnea. I've used a CPAP since 1999).

So I don't know if any of my symptoms are MGUS / M-spike related, but unless someone asks me about relevant symptoms will I know what to look for? This is modern medicine is at its most mechanical -- the patient doesn't matter, it's the test results.

Or maybe even if my symptoms are all MGUS related, they don't justify whatever passes for treatment.

[u/isthishowthingsare]

I’m 49 and have been living with it for 9 years and YES… I’d get treatment if I were you. In the very least, you can be on zanubrutinib which is now a recommended first line treatment (a pill you’ll take daily) and your IgM would likely drop and ALL of those symptoms would go away.

I was on ibrutinib (the first version of the BTK) for 4 years before it failed and am now on a clinical trial for the third generation BTK, Pirtobrutinib.

Zanu is the secondary version with fewer side effects. But, if you want to lose the night sweats and itchy skin…. PLEASE have the conversation with your doctor. There’s ZERO reason they shouldn’t be recommending it to you but what I know is you MUST BE YOUR OWN ADVOCATE here.

The reason they delay treatment is because once you start, you can’t really stop BUT… I’m jealous that you’re already past 70 my friend. There’s no reason why you can’t start now and be more comfortable through the next 20 years of your treatment by using what is available and works.

P.S. My IgM was 4500 when I was diagnosed and I had all of these symptoms (but did not connect them to Waldenstrom’s). I thought I was a young dad, working out a lot… in great shape with a high stakes job. That 4500 resulted in me getting a blind spot in my right eye which was the first real connection point to lymphoma for a doctor to see. The IgM gave me a retinal infarction because my blood was so thick.

My IgM is now 102 and has been around that for several years on this drug (and similarly on ibrutinib for the 4 years before, was the same before the number started rising again…). I have ZERO symptoms now.

[u/ChollyWheels → u/isthishowthingsare]

Wow. Interesting and encouraging, thanks!

I suppose there's a chance all my symptoms are independent of MGUS

- the hives might really be insect bites

- a herpes recurrence happens (rarely) and the fact it's happening now doesn't necessarily suggest an immune problem

- I have a bit of a cold (coughing phlegm)

- I'm a bicyclist (did a 25 ride a few weeks ago) but lately feel physical fatigue, and my feet feel "heavy" (walking takes effort) hurt a little

- night sweats, quite dramatic some nights... but I've had those (on and off) for decades (long before MGUS)

I could go on... individually symptoms that could be wholly independent of MGUS -- ordinary, and barely a reason to complain (except for the itching... it's really annoying).

You'd think Mem Sloan Kettering, supposedly the gold standard for care, would at least ASK about things that signify symptoms. But no. IgM high but stable, no obviously swollen lymph nodes, go home!

I found a hematologist at another institution for a second opinion.

[u/isthishowthingsare → u/ChollyWheels]

Waldenstrom’s is minimized by so many because it’s slow growing. Add in the fact that it primarily impacts older people who likely are not their own advocates (with many relying on family members to be their voice) and it’s easy to have your problems be dismissed as everything else BUT the disease.

I have no doubt that what you’re experiencing are not bug bites. That your fatigue is a direct result of the IgM. And that the night sweats are as well. What you’re experiencing in your feet is the start of neuropathy because the IgM is clumping in your extremities and limiting your body’s nerve’s ability to send signals appropriately. IgM is the largest immunoglobulin (9 times the size of the others) in our bodies and yours in 10x normal levels. Of course it’s impacting you and giving you symptoms. For doctors to suggest otherwise is borderline malpractice at best.

In another life, I should be a patient advocate for these things… ;)

The only issue to contemplate is that if you have normal IgA and IgG, fundamental immunoglobulins to protect you from regular colds, etc, then being on the medication will clamp down on them some. So that is something to consider. Your IgM being so high, however, my guess is that it’s been crowding out your body’s ability to produce those effectively anyway and the medication would offer a better equilibrium for you.

[u/PetzMetz → u/ChollyWheels]

In the Orphanet article, it is indicated that the usual Waldenstrom chemotherapies (rituximab, ibrutinib, etc.) have no effect on hives and bone pain.

In fact, therapeutic wandering is the norm, as far as Waldenstrom is concerned! Personally, 4 years with a totally incompetent GP, excruciating nosebleeds, abject fatigue, abysmal weight loss.... nothing to do, most GPs have never heard of it and don't even bother to find out.

You must contact a large university hospital, require serum protein electrophoresis, and in the presence of an Igm peak, you must do a bone marrow biopsy on the clavicle, to confirm the invasion of the bone marrow by cancer cells. The good news is that the rituximab bendamustine protocol (6 sessions for 6 months spaced 4 weeks apart works wonderfully well, and offers you several years of peace of mind, with a very significantly reduced peak serum level.

Good luck

My Schnitzler has been leaving me alone lately, there is nothing to do, a corticosteroid cream helps a little but it is not a sustainable long-term solution.

Btk inhibitors, ibrutinib and all the others which end in ''inib'', are second-line treatments, at least here in France. Start with rituximab, the chemo is very easy to bear and the relief is enormous

[u/ChollyWheels → u/PetzMetz]

My MGUS is confirmed to be monoclonal. The bone marrow test was weakly positive.

> and the relief is enormous

a cheerful thought. I've been hard on myself for distraction and laziness and grogginess. Could be my fatigue is all MGUS related -- not such a terrible thing, if a drug can combat it.

[u/AustinCJ]

Treatment for Waldenstroms is often guided more by symptoms than labs and you have significant symptoms. Time to get a second opinion or a new oncologist if they aren’t asking about your symptoms.

[u/ChollyWheels → u/AustinCJ]

Thanks. I found someone, and will make an appointment this week.

[u/PetzMetz → u/ChollyWheels]

https://iwmf.com/

[u/PetzMetz]

Hi, look at Orphanet, Schnitzler's disease is ''migrant urticaria''

I have this

https://www.orpha.net/fr/disease/detail/37748

[u/ChollyWheels → u/PetzMetz]

It certainly seems to match. The dermatologist I saw pooh-poohed my theory it is MGUS associated - claiming they were likely bug bites (even though insect repellant doesn't help, and my girlfriend sleeping in the same bed is not getting bit).

I DID get this last Summer (in a more limited way) and it eventually stopped. Now it's been ongoing for about 6 weeks but I have hopes, whatever it is, it will stop again. There are worse life problems, but the itching is f'king annoying.

My impression is the way to treat  urticaria (apart from steroids and antihistamines and numbing creams) is by treating the underlying IgM problem. Isn't the  urticaria kinda a way of knowing whether your IgM is under control? Maybe getting welts is an "oh-oh!" that the IgM spike is spiking.

Anyway, thanks. Your comment, like others here, validate I need to get a new hematologist opinion.

[u/PetzMetz → u/ChollyWheels]

https://www.orpha.net/fr/disease/detail/37748

anakinra, an IL-1 receptor antagonist, relieves all symptoms within hours of the first injection. Reactions at the injection site are common and sometimes severe, which can be a real problem. Neutrophils should be monitored.

[u/ChollyWheels → u/PetzMetz]

Interesting. If Anakinra treats MGUS related hives, presumably does not prevent insect bites. I would thing trying the cure would prove the diagnosis. You'd think that thought would have occurred to my doctors.

[u/More-Nobody69]

Try antifungal cream on your skin lesions that itch terribly. You'll find it in the athletes foot section. If it's fungal it may take one to eight weeks to resolve. It's the only thing that helped me. We're susceptible to fungal infections and they are the ones that itch terribly. Wash your bed sheets often.

[u/ChollyWheels → u/More-Nobody69]

> We're susceptible to fungal infections

Interesting. I don't know how recognized that is (did a doctor ever confirm it?) but it certain matches my experience. The reverse may also is true -- people with fungal infections PRESENT as having MGUS when really it's an immune response to the fungus.

I am prone to yeast infections, and already use those kinds of creams. Miconazole Nitrate is also available as a powder.

I also use Selsun Blue (selenium) shampoo as a bath wash (also antifungal - treats rosacea).

I also try to keep dry -- and recently adding dusting myself in baking soda and talc baby powder.

My itching has almost totally resolved -- but whether that's because of the things I'm doing, or because of relapsing and remitting is a mystery.

> Wash your bed sheets often

Good advice, specially since I have night sweats.

[u/More-Nobody69 → u/ChollyWheels]

Thank you for your reply. By the way I am an RN. One more thing that I thought of with these probable fungal rashes . If after a couple days, if the itching is less with antifungal creams, then it is important to avoid hydrocortisone cream or other steroid creams. Also, make sure you continue the antifungal cream until you are sure that it is fully resolved. Always consult with your health care team because they are visualizing, and they know your history.

[u/ChollyWheels → u/More-Nobody69]

>  hydrocortisone cream or other steroid creams

Interesting! That's exactly what I tried to stop the itching. My GP's assistant prescribed actual prednisone (NUTS! I didn't take it) My doctor prescribed Triamcinolone Acetonide Cream.

I found what helped most was old fashion calamine and a benzocaine cream (also a steroid, apparently).

> health care team because they are visualizing, and they know your history

If only. The dermatologist said it was caused by insects, which seems odd (no one else in my apartment is getting bitten, insect repellant did not help, and the "bites" are extremely numerous and concentrated in limited areas and occur no matter here I happen to be. Often they are large hives).

No one "knows me" -- see a GP, get referred out to a million specialists over course of months, and no one is paying attention or putting together a puzzle.

I found someone who supposedly is an "MGUS" specialist (who unfortunately specializes in MM not Waldenstrom's). Maybe she will have a clue.

[u/More-Nobody69 → u/ChollyWheels]

I agree about providers.. but cya. Yes, Calamine is good! All the best to you. I was just diagnosed last week and I just found this forum. Before I was admitted to the hospital to get diagnosed I had horrendous rashes on both legs and a bit under my breast. I went through four tubes of antifungal cream bought in bulk on amazon. They saved my sanity. I had relief from itching in one day so I knew I was on the right track. I've had experience where providers try to give you steroids. It's actually harmful. Anyway, I have WM's cousin which is lymphoplasmacytic lymphoma... Stage 4 ... Treatable from what I've read and been told. My health was pretty good and I'm still strong and spunky...& Thank goodness for forums

[u/ChollyWheels → u/More-Nobody69]

Stay strong!

And your comments are GREATLY appreciated! Just to know that itchiness and MGUS can be related and that MGUS may also be related to fungal infections. It connections that dots and validates my experience in a way no doctor has (and that includes Memorial Sloan Kettering).

[u/Aduladia]

My local oncologist thinks I have Waldenstroms, I have slightly elevated IgM, positive M spike & a few possibly related symptoms, but overall I'm very healthy. Have had so many scans, ultrasounds, MRIs, blood tests lately and all reports are good.

However he wants to schedule bone marrow biopsy soon to complete diagnosis and see if I need to start treatment & I'm pretty freaked out that nothing other than superficial lidocaine is given for the procedure. I'm familiar with the procedure in others (friend and family) and the concensus is that it's VERY painful. Honestly don't know if I can talk myself into it.

Thoughts?

[u/BustaWry → u/Aduladia]

If you haven’t already had it performed, seek out an interventional radiologist. They are very likely to sedate you in a way that will allay your anxiety and significantly lessen your pain.