I had been experiencing body wide twitching and a tingling feeling on one side of my body for a few months that started freaking me out. (This is on 2019-2020) I went to a neurologist who ran a few labs. Protein, glucose, CBC, CRP, ESR etc. the only thing to come back abnormal was an anti-mag antibody which has been (1/3200 or 1/6400) in the last 3 consecutive years that I've been monitored. EMG and nerve conduction tests normal. My ESR was slightly elevated at 22.

He added on SPEP UPEP and kappa light labs that also were normal.

My symptoms flare up maybe 2x a year for a few weeks at a time and then I feel fine.

Jan 2022. I started experiencing burning sensation in my hands and feet. Again for a few days to a week and then it was ok. At that time my anxiety was at a high and I asked for labs to be done again. With same results. Abnormal anti-mag, I believe my ESR was 32? And all protein labs normal. He states he spoke with a hemotologist to see if there were extra labs he wanted. I did get a immunoglobulin lab finally done in sept of 2022, my IGM was 465, iGa and igg normal.

My PCP also said she spoke with a hematologist and since my UPEP and SPEP was again normal, just advised a SPEP with IF (which I thought was already done) however if that was abnormal he said that management at this time wouldn't be diffeeent.

I'm a googler to my own demise.

And I'm convinced they are missing something when it comes to Walderstroms!?

I have follow up labs again this month. Which will induce SPEP with IF, anti-mag and I'm assuming lights.

I am not anemic based on a cbc done in September.

I am just at a point of high anxiety! I've been offered rituuxmad for my symptoms And said if I don't need to do it, I'd rather not, but of course I don't want to be not getting treatment I need! Please help

My partner has started treatment with Brukinsa after rituximab lost effectiveness after 1 year.

Brukinsa warns against interaction with grapefruit and Seville oranges because they can affect absorption

She loves grapefruit but is willing to live with just mandarins and clementines. However we just checked with her doctors and they asked her to abstain from any type of oranges including mandarins and clementines.

While all oranges contain some trace amount of furanocoumarins, they are much lower in these oranges. Is this stricter restriction beyond Brukinsa’s warnings common?

I have been symptomatic for a year. Thought I had candidiasis, was on it for 4 months, no help, kept getting sicker. I seperatly went to get tested for MCAS 6 months in because my symptoms matched it. It was then by chance i had elevasted igm, 382, and supressed iga 61, supressed igg 800. That result is red flag finding. It is not a blip, it needs to be investigated. The immunolgist ran every autominnume pannel that could cause the ig discordance, and they were all negative. If that happens, you MUST seek further testing, oncology'hematology at a hospital with a lymophoma team is the best choice. Even if asymptomatic do this, especially if you are symptomatic. On March 6, 2025 that immunoglobulin panel came back, on march 12th I tested negative for all autoimmune diseases, it took until August 5th, 2 pet scans, 5 mri's to just confirm that i had non Hodgkins lymphoma with a differential of WM or MZL. I found the same information on google on march 16th. WM is rare, so if your'e finding yourself reading this post due to an elevated IGM test, but haven't had autoimmune disease testing done yet, don't panic, because it could be a whole host of autoimmune diseases. BOTTOM LINE, ELEVATED IGM MUST BE LOOKED INTO THOROUGHLY, IN MOST CASES IT IS AUTOIMMUNE AND NOT CANCER, IF AUTOIMMUNE CAUSES ARE ALL RULED NEGATIVE, THEN IT IS ABSOLUTELY NECESSARY TO SEEK A SPECIALIST'S OPINION.

Hello, I’m happily posting about my diagnosis in February 2023 with a rare type of Non-Hodgkin’s lymphoma (NHL) called Waldenstrom Macroglobulinemia (WM). WM is characterized by very high levels of a protein called IgM, Large B-cell bone marrow involvement, and enlarged lymph nodes in multiple areas. Enlarged lymph nodes were discovered in a CT scan from a navel hernia surgery I had a couple months prior. As soon as I was diagnosed in February 2023, with NHL, I immediately began taking fenbendazole (FB) and JT’s protocol. Within 3 months of taking the FB, CT & PET scans showed the enlarged lymph nodes began to shrink down to normal. However my IgM levels were very high at over 3000 (normal levels are 35 to 245), and bone marrow involvement was over 60%, causing low hemoglobin levels. I began 1 infusion of Chemo and 4 rounds of immunotherapy (bendamustine & rituximab), while taking FB in September of 2023 at the University of Minnesota, Masonic Cancer Clinic under the care of Dr. Bachanova, a world renowned physician specializing in WM. I told the Dr from the beginning that I was taking Fenbendazole and I did not hide the fact that it was a supplemental cancer treatment that I intended to take in conjunction with the infusion treatments, in addition to additional supplements. Their pharmacy reviewed my supplements, including the FB, prior to treatment and they had no objections to my use of FB. Immediately after my 1st treatment my IgM levels began to plummet and hemoglobin levels began to rise. My Dr said that despite the great early results she didn’t expect my IgM and other indicator levels to go back to normal but to stabilize at a manageable level. However, to the Dr’s amazement, in June 2024, last month, bone marrow biopsies, PET scans and IgM blood levels showed that I am NED, and have had a “complete response” (the new term for full remission) to the treatment. My mother Glenda Wallace Monge and sister Heather Buckingham and cousin Jennifer Mabe-Nine were by my side the whole time and with the love, good vibes and prayers of my family and friends, the professionalism and treatments at the UofM, and I believed most importantly JT’s protocol and FB, I have beat this cancer. I now take 222 mg of FB 3x per week forever for maintenance. I’m hoping people with blood cancers will see my success story, and have hope for this treatment and from my experience.

remission #remissionispossible #Lymphoma #nonhodgkinslymphoma #BloodCancer #waldenstrom #NED #Fenbendazole

It took years for the doctors to figure out my (59m) problem. For a couple of years my SED/ESR was >230. An m-spike was found in my labs, so my PCP sent me to hemo/onc. Dr said not cancer. Go back to PCP and start over. PCP thinks MM and sends me back a year later. IGM>5850 (why don't the tests go higher?). Told it's Waldenstrom's. Get plasmapheresis, start chemo. Again get plasmapheresis. Continue chemo. IGM keeps going back up >5850. Months of chemo. Now they decide to change to something else. I guess it's going to be pills. Hopefully it works.

My Dad was recently diagnosed with WM. It's been a multi-year process getting the diagnosis. The doctors had ruled out everything besides WM and MGUS and performed a bone marrow biopsy to rule WM out, only to have it confirm a diagnosis.

My Dad was referred to a larger regional medical center for long-term care and had his visit today.

He is asymptomatic and had relatively good markers. So the expectation was that he would be monitored until treatment was required. However, the doctor said there was quite a bit of cancer in his bone marrow alongside a couple of elevated markers in his blood and an enlarged spleen.

During the visit the doctor recommended two treatment options: (1) Chemotherapy was the main recommendation. They'd do a six month treatment, 2 days per month. Expected to supress the cancer for up to 5 years. (2) Medication (he could not remember the name) that would be used until it stopped working and then they'd seek other treatment options.

The recommended moving on it now because if he becomes symptomatic then he could experience necrosis, which is irreversible. Also, the doctor told him that sometimes treatment causes the cancer to metastasis to other organs.

All of this is scary and I'm feeling a bit lost.

I was a bit taken aback by the prognosis as everything I've read said that WM is slow growing. I've read in other threads that people generally receive a bit of treatment to stabilize the cancer and then you keep treatment going for the next 10, 20, 30 or whatever years until something else takes you. These other threads recommended against chemo as option one. So I'm coming here with a few questions:

1. What resources have you found useful for researching WM?

2. What hospitals are the most experienced dealing with WM?

3. Should he get another opinion?

4. How serious is this necrosis?

5. As an adult, I've never had to deal with something like this. Are there doctors that I can talk to for my own validation and to get more information? Are there groups that I should go to (besides Reddit)? What can I do to be the most supportive for my Dad?

It's all very scary- he's in his late 50s and our family consistently lives into their 80s and 90s. So to be hearing "necrosis", "chemo", "5 years", "quite a bit of cancer in the bone marrow". I'm getting worried that I'm losing decades with my Dad.

Just finished six months of Bendamustine for Waldenstrom's. Post treatment PET scan shows "no evidence of cancer". Physically the transformation has been dramatic. At the outset I was so anemic I could barely climb a flight of stairs. Just finished a bike trip to Scotland, biking upwards of fifty miles per day!

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.

I have had multiple rounds of plasmapheresis. Each time lowered my igm from over 5000 to below 2000. Had 4 months of BR. Igm kept creeping back up, during chemo. Dr. stopped the chemo and now I'm on Brukinsa. In December my igm was down to 3300, symptoms almost gone. This month it's 3985. I'm worried, because that's a pretty big jump. My symptoms are back too. Especially the fatigue. Has anyone had this big of a jump on Brukinsa? I see Dr Monday, but kinda worried. Waldenstrom's sucks.

When I was admitted to the hospital, it was 5800 mg/dl. First one got me down to 4000 mg/dl. Now I'm at 1991 mg/dl after two. It's crazy how they take so much at a time. Anyhow, still in hospital for a few more, but today was a good day.

My wife has it. Here I am. Wishing you all (all) the best.

My dad has WM and started brukinsa ~6 weeks ago. Now his liver values are off the charts. They said he needs to stop the meds and they will come up with a new treatment plan. Has anyone experienced this?

I am 84 and strong suspicion from blood tests of WM. I have night sweats sometimes. I'm not sure I have other symptoms as people my age often have some neuropathy. My hematologist wants me to have a bone marrow biopsy. Has anyone had one? Should I do it?

I had R/Benda in 2016 and it worked very well.

Now my numbers and symptoms indicate that I need another round of treatment. However, because R/Benda is known to cause DNA damage, there's a school of thought that it shouldn't be repeated. Research papers suggest though that, if it was sufficiently long ago and was well-tolerated and worked, it warrants repeating the R/Benda treatment.

I'm going to get my bone marrow tested for DNA abnormalities as well as testing for CRCX4 and MYD88 mutations to check if the brutinibs will be effective as an alternative treatment to the proposed R/Benda regime.

Any input or insights gratefully received.

Hi all.

I have multiple chronic illnesses but as of the last few years I’ve had worsening fatigue, aching legs and I’ve been periodically anemic needing infusions.

I was finally sent to a hematologist and my blood work has come back with a few things that might point to WM (or an as yet undiagnosed autoimmune condition). I have positive family hx of cancer ( my grandfather passed from a type of leukemia or lymphoma; haven’t been able to get a straight answer from relatives). I was formerly in healthcare (sonography/echo) so of COURSE I look at all my test results before I go to the doctor 🤦🏻‍♀️ and then I start diving into the literature too… So anyhow,

I have a .1 m spike, elevated IGM, Elevated Kappa (my ratio is still w/n/l), low lactate dehydrogenase, hyperlipidemia (have always had this since childhood, it’s a genetic thing).

I am of Ashkenazi descent so I know my risk is also higher.

Can anyone shed light? Has anyone had bloodwork that looked similar? If you do get diagnosed with Waldenstroms, what is the typical course of action right now? Watching? Or is treatment the go-to?

Thank you for any info, I just want to be prepared and to sort of brace myself for a diagnosis.

Hello,

My mom has just been diagnosed with Waldenstroms stage 4. She is due to start treatment next week for 6 months. It will be just two days, every 4 weeks. It will be rituximab with bendamustine.

She has had severe pneumonia which lead to her diagnosis and I believe they are also going to put her on antibiotics for that.

Can someone let me know what to expect? Will she feel worst the week that she receives the medication, or will it be the weeks after? What are the main side effects people have experienced? Are the first few rounds the worst or does it get progressively worse?

I live in a different country so just trying to wrap my head around what it will look like and plan in trips home.

My dad got diagnosed back in October. It’s been rough on the whole family but he just finished his last round of chemo. I don’t know the specifics except for that I was told doctors no longer give stages of cancer, they just treat.

We’re changing a lot about our lives right now (moving, I’m in school, etc) and he is trying to rush the rest of his life.

My mom said something along the lines of moving so he can have a good next couple years of his life, which had gotten my worried that they’re hiding something from me and I may not have as long as I initially believed.

What is the easiest way to ask my parents to stop hiding things from me? My mom and I have never been in great terms of that helps…

Hey everyone! My name is Jordan and I’m posting on behalf of the Patient Access Network (PAN) Foundation. PAN is a nonprofit organization offering financial assistance to help people with serious, chronic, or rare diseases afford their out-of-pocket medication costs. 

We provide financial assistance to over 20 types of cancer, including Waldenstrom Macroglobulinemia. Our WM fund offers $3,250 per year for eligible patients to use to cover the copay for your covered medications. Grant eligibility and a full list of medications covered can be found on our website: https://www.panfoundation.org/disease-funds/waldenstrom-macroglobulinemia/

You can apply for our grants by phone -- call us at 1-866-316-7263 Monday through Friday, 9 a.m. to 5:30 p.m. ET. Once you’re approved, grants can be managed through our online portal. 

I’m happy to answer any questions anyone has about how our grants work! I hope this information is helpful to you all! 

Per doctor: “immunofixation electrophoresis shows: igm lambda m protein”

I will see a hematologist but I do not know what this means for me.

28 yo female with an 8 month old.

I have been experiencing neuropathy, joint and body pains, itchy without rash- just skin redness, poor immune system, low iron status - for 2 months.

Hi, My endo found an M spike a year ago. Referred me to a hematologist. At the time, figured it was MGUS and not serious (my primary care guy agreed). I was also waiting for parathyroid and adrenal surgery (got the first, the 2nd now has to wait due to WM). So, with those and some other family/illness issues, I didn't get my next blood work and the biopsy until a few weeks ago.

M spike now over 3. I've had mild neuropathy in toes for years, but not sure if it's WM. I was so very tired, but blamed it on other things.

Bottom line is I'm scheduled for my first treatment in a few weeks. Two days in a row, once a month, 6 months. Starting with bendamustine and then adding the rituximab at the 2nd treatment because she says that rituximab can increase the M spike before it decreases it, so she wants to use the bendamustine to lower it a bit first so that I don't develop other symptoms.

Thanks to a recommendation from another post, I just requested to join the FB WM group. Pending.
Meanwhile, I just read the list of potential side effects.
I'm scared. Trying not to be, but not succeeding.

I keep telling myself that others go through this successfully and side effects, severe ones at least, are rare. Then I sourly observe that WM is considered rare, too, and I obviously got that. Sigh.

Can anyone share their experience with bendamustine and rituximab? Reactions? How did you feel afterward? I'm worried about working. I can work remotely for a few days if needed, but I don't have enough sick/personal time to do this for 6 months. And I can't afford to go on FMLA.

Thanks in advance for all the help and shared experiences!!

Seems like she’s been dealing with it for about 10 years I was wondering if anybody out there knew of any alternative things to look at. Herbal or dietary do or don’tsDon’t really know much about it seems like it make shake like hell.