I have had WM, or at least I have been aware that I have WM, for just about a year. Almost a year ago to the day, I was hospitalized because my platelet count was zero. I was released from the hospital after two rounds of IVIG, a platelet count of 11, a prescription for dexamethasone, and a referral hematologist. They thought it was ITP. And it was, but it turns out it was caused by WM and my hematologist became my oncologist. I was told that I would have to go the chemo/rituxan route but three months of prednisone later (dexdidnt work) my platelets were stable and we decided to wait for treatment. Now I have a disabling case of neuropathy that they believe is related to WM and are once again telling me I need to go the chemo route. I had decided that if I needed any kind of treatment, it was going to be zanubrutinib but the oncologists are telling me that I need to get the WM into remission because until I do, I could keep on getting immune responses that damage my body. The big concern is that they don’t want nerve damage to become permanent. Zanubrutinib does not cause remission.

The sticking point for me is rituxan. I made the mistake of reading the potential side effects and I am a lot more afraid of that than I am cancer. I am seriously considering just living with not being able to walk that well and having numb feet and hands. I asked oncologist if I could do benda without rituxan and was told that’s not how it’s done. I asked for zanubrutinib and they said it wouldn’t be useful because of the neuropathy. The weird thing is that my labs just keep improving. My IgM was 570 last week and my mspike was 0.7. When I was hospitalized, my IgM was 1876 and my mspike was 1.9. Most of my labs were wonky and now my labs look great other than IgM and mspike. Even my oncologist doesn’t seem to totally understand what is going on with me.

I guess I am just looking for perspective. This is the gift that just keeps on giving.

My SO was recently diagnosed with Waldenstroms. They started him on Rituxan infusions, which he completed one infusion. They then switched him from Rituxan to Brukinsa for an indefinite timeframe… we were originally told 4 rounds of Rituxan and he should be in remission. Now he has this medication that obviously we have to be careful with bodily fluids, costs a ton, and have no clue how long he’ll be on or when he’ll be in remission… Any experience or insight would be helpful. Thank you!!

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.

Hi. I was diagnosed with WM back on 11/23 after being hospitalized with a platelet count of zero (literally zero) and all of the various bleeding issues that come with that. At first we didn’t know what it was and it was diagnosed with ITP and sent to a hematologist. After a ton more tests, including two bone marrow tests, my hematologist became my oncologist. I was put on high dose dexamethasone. When that didn’t work, I was put on high dose prednisone which turned things around quickly. My platelets got as high as 220 and came down to 85 as I tapered down. Then they went back up into the 150s and they have pretty much stayed there.

At its highest, my igM was almost 2842. That came way down while on prednisone and it has continued to come down. Last week, it was 834. My m-spike was 1.9 and it is now 0.8. My kappa light and K/L light chain ratio has also come way down. In April, I went to the chemo teach and was planning on starting chemo because my oncologist was afraid that even with my numbers improving, the ITP could come back and land me back in the hospital. I decided to wait a bit and see what happens and my numbers have gotten better every single test since April. I saw the oncologist yesterday and she said she was fine with going to quarterly tests as long as I monitor myself for ITP. I know all of the signs and will know if my platelets are headed down again.

Thing is, even though my numbers continue to get better, I’ve started to get numbness and tingling in my feet and a few of my fingers have gone numb along with pain that feels a lot like tendinitis. Tests have been run to see if this is igM related and the results will be in whenever they get them done. They are also testing for B-12 deficiency.

Have any of you ever heard of WM appearing to get better like this? Oncology seems a bit perplexed by it all.

6 cycles of Bendamustine and Rituximab ended for me today. When I started my treatment my hemoglobin was 7.7. Monday it was 13.8. Hasn’t been that high since 2015. IGM was 3,000 when I started, Monday was back to the normal range at 221. This treatment was not without drama. I was hospitalized with pneumonia after the first, and Had the shivers ( I’m sure there’s a medical term) two times. But since the 4th treatment it’s been better. Thankful it’s done and feeling so good. Heading to the gym tomorrow- golf Friday. Thanks to my doc and his team.

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

The following list of WM foundations will continue to be updated. If you would like a foundation to be added, please send a message to the mods for review.

Internation Waldenstrom's Macroglobulinemia Foundation (IWMF) - Mission Statement: The mission of the IWMF is to support and educate everyone affected by Waldenstrom’s macroglobulinemia (WM) to improve patient outcomes while advancing the search for a cure.

Waldenstrom's Macroglobulinemia Foundation of Canada (WMFC) - Mission Statement: The Mission of the WMFC is to support Canadians with WM, and their families, by offering a range of services that can enhance quality of life for those with WM and ultimately discover a cure. 

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! 

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!!

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 dad was diagnosed at age 62 (8 years ago). He didn’t need treatment then but since has gone through two rounds of chemotherapy as well as Rituximab during his last round. Now he thinks he’ll need another round of treatment.

I wish I knew more, but he’s very closed off about his health with my mom and me. I’ve been doing a lot of reading and feel more and more conflicted. The median survival rates only go out to about 12 years (low risk), and I’m so scared that our time is almost up. Am I thinking about this right? Has anyone looked into some of the more targeted treatments like Yescarta?

Thanks for any guidance. All my love and support for everyone else going through this.

https://www.yescarta.com/yescarta-at-a-glance?gad_source=1&gclid=CjwKCAjwzN-vBhAkEiwAYiO7oEykOFyv3ZItr5qI3ei9Qq_coDWN_HcMkDUCcd3C4FfhfAjNLXJezxoCXp4QAvD_BwE&gclsrc=aw.ds

I am desperately seeking help for this. I was diagnosed with lymphoma about 4 yrs ago. I suffer from the most atrocious drenching night sweats that's apparently a symptom of lymphoma. My oncologist has tried two different medications at two different times giving each prescription a year before changing. Neither worked. He won't prescribe anything else. I have such fear of sleeping that I've stayed up for 5 days and nights at a clip. Waking up with drenching sweats makes you feel like you have the flu. My body, clothes, pillow, sheets, and comforter are drenched and makes its way down to the mattress at times. Please, if anyone knows anything about this and what medication is known to help, I would appreciate all recommendations. Thank you in advance !

47 YO Male with minor symptoms. Neuropathy in feet with associated tingling and transient numbness that started about 3 years ago. Starting to feel numbness and tingling in hands as well. dull pressure under my ribcage.

Blood and urine test done but nothing else. My free K/L Ratio is 7.13 and Kappa Light chain free is 51.3. M Spike .8. Dr says no need to worry because my numbers are low but wants to keep monitoring me.

I am sure everyones' experience is different but what kind of timeline should I expect if this does advance to Waldenstroms?

thanks

Hi guys! I hope it’s okay to post this. My dad was diagnosed with Waldenström macroglobulinemia (at the age of 74) last year. For now, it’s wait and watch. Luckily he’s been feeling okay!!! I’ve suffered from health anxiety ever since my husband was diagnosed with Hodgkin‘s lymphoma (he’s been in remission for almost 6 years). So I ‚researched‘ my dads diagnosis and stumbled upon the 20-fold risk for first degree relatives to be diagnosed with WM. This scares me so much because I’m only 31 and expecting my first child ☹️

I'm hoping someone else has had any of these symptoms or lab values and can shine some light.

For about 5-6 years, after having my second kid, I've had some flare ups of back pain and tingling in my legs that I attributed to having kids back to back and bad posture. But in 2020 twitching took me to a neurologist who ran blood work and only abnormal was a mildly elevated anti-mag antibodies. Additional testing was ordered (SPEP, UPEP, light chains) and was normal .. this was reassessed x3 in a 2.5 year period. No anemia, no protein , no M spike My symptoms flare up.. pain, tingling etc no numbness.

Last year October, immunoglobulin M, G, & A, all Normal accept IgM =467.

I see him every year.. He didn't ordered any labs this year just an MRI because my reflexes were hyper. MRI normal. And wanted to see me in 6month.

This 6 month check I told him I was experience my flare up of symptoms.. he now thought autoimmune or inflammatory since it bouts a few times a year.

He reordered some labs all ANA type normal my anti/mag is now normal and my IgM is 560. Which scared me. I contacted him about the lab and he reordered SPEP and lights. This CBC normal. no anemia, platelets normal.

He and my PCP said they have discussed with our hematologist and didn't think I needed anything additional, and that Neuro was best for my symptoms.

I have my SPEP and lights pending

Any thoughts as Waldenstroms have never been mentioned as a possibility

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!

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

I was just diagnosed this month with this rare Waldenstroms. So rare it’s the same cancer my 80+ dad has been living with for a decade. My first meeting with the cancer centre doctor is next week.

I’m not doing a lot of reading at the moment but was interested in anyone’s experience with hearing loss which is apparently a rare symptom. I was a musician before the pandemic with some hearing loss and have been wearing hearing aids for years before that. In September 21 I was fitted with new hearing aids that seemed to be life changing but in December their effectiveness suddenly declined. We eventually switched to another device with not much improvement.

I’m wondering if WM started to do what it does in late ‘21. Does anyone have any experience with that?

The journey to my diagnosis started in the summer of ‘22 when I decided to do some middle age man baseline testing. Blood tests showed I was anemic along with below range hemoglobin. Eventually in December’22 more tests lead to a referral to a hematologist, a bone marrow biopsy and then to a WM diagnosis.

I lost a lot of weight since the pandemic started but attributed that to the amount of cycling I was doing. I was close to 200 pounds and as low as 165 and settled at around 175. Other symptoms include fatigue and night sweats. I’m hoping for treatment rather than a wait and watch. I’m only 57 but living for a few more decades being this tired is not great although it could obviously be worse.

I just received an abnormal Igm test. It was 325. I’ve had fatigue and numbness in my fingers tips off and on for a year. This was my first Igm test so there is no baseline.

My Dr was testing for an auto immune. The Dr ordered more tests but they aren’t in yet.

How high are WM Igm levels usually?

So my father got diagnosed with waldestroms disease at 2020. Since then he started to feel less and less in certain body parts. Mainly his legs. From feet to knee. He takes a special antidepresant which should help with this neurological problem. According to doctors he is not at great risk. He will not get any chemotherapy any soon. He has a silent hepatit, so Im scared the Chemo would make it worse. My father is 61 years old. Im scared he wont live a long life.

Help Us Better Understand Waldenstrom Macroglobulinemia

Pinpoint Patient Recruiting, a market research recruitment company, is looking to speak with people who have been diagnosed with Waldenstrom Macroglobulinemia (WM) to participate in a 60-minute online interview about their experiences.

If you are a US resident and have been diagnosed with WM, you may be eligible to participate. Those who qualify and participate in the study will receive at least $125 as a thank you. All information and responses will remain confidential.

Interested?

To see if you qualify for the study or to get more information email please visit https://www.pinpointpatientrecruiting.com/wm-study or contact Jenny Fowle at jenny@pinpointpatientrecruiting.com.

https://preview.redd.it/da1w8wzec0391.png?width=1200&format=png&auto=webp&s=ce785fb83e470160c646b2a98379092d261cfe06

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…

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.