Waldenstrom macroglobulinemia: What to expect during watch & wait?

I have WM and was on Bactrim during treatments but taken off 17 months after my last treatment because Bactrim adversely affected a couple of levels. I have a friend with WM who was on Bactrim during her treatments, that ended in 2017, and she continues taking Bactrim.
I have IVIG when My IgG levels get low but not monthly.
If you go to the IWMF (International Waldenstrom’s Macroglobulinemia Foundation) website -https://www.iwmf.com/ - and search for the Helpline, you will be able to contact a volunteer who can assist you with any questions about IVIG. Also, the IWMF has an IVIG fact sheet that is extremely informative.

I was diagnosed with Waldenstrom Syndrome in 2013 . I received 2 years of chemo . I have been in remission about 6 years . I see my Dr. every 6 months and get blood work a week before I see him ; so far I am still doing well.
I wonder if any one with this has to be on a life time of antibiotic therapy to prevent pneumonia ? I take Septra twice on Monday & twice on Thursday . I have a friend with the same cancer , same Dr. and does not take it ?
I also get IVGA every month from Oct. to March to help boost my immune system . I trust my Dr. 100 % . Just curious .

One of the biggest mental challenges was when I first heard the diagnosis of WM and kept asking WHY???? Finding out how rare the cancer is and the best way to treat it is on my mind.
I also struggle with being unable to do simple things for myself like get dressed and trying to button my blouse. I wanted to give up mentally and physically because my husband had to do everything and attend to me 24-7! He had to do laundry, housekeeping, shopping and cooking. I worked in a nursing home for thirty eight years helping others and I couldn’t care for myself now.!!!!!!
Thank heavens I am not alone!!!!
Puffwithfluff

@puffwithfluff, I'm glad you've connected with @ejrquast. I hope the two of you will continue to talk here on Mayo Clinic Connect to help newcomers diagnoses with Waldenstrom macroglobulinemia.

Puffwithfluff, what are the mental challenges of this recent diagnosis that you struggle with the most?

Ibrutinib seems to be keeping my lab levels in check and will continue with it instead of IV infusion which seemed to cause my reaction and being hospitalized a second time.
I have to be tested next week for possible amyloidosis and will also have to see a neurologist.

Yes, definitely. I would appreciate any help with dealing physically and mentally with my Waldenstrom cancer. Thank-you.

Linda, I was diagnosed with WM in 2014. I posted recently and included my connection with the International Waldenstrom’s Macroglobulinemia Foundation (IWMF) and their exceptional resources for patients and families.
If you would like to talk, please do not hesitate to contact me.

Linda, I am so sorry to hear that you had extreme rashes. How are you doing on Ibrutinib? I took Ibrutinib for just over two years. Sounds like your local specialist and Dr. Binder work well together. May you continue to do well on Ibrutinib.

I was diagnosed with Waldenstrom macroglobulinemia July of 2021. I went to the emergency room for severe back pain and after six hours I was admitted to the hospital for a possible kidney stone and kidney failure. The next day the Dr. said I had good news and bad news. The good news I passed the kidney stone and the bad news I had CANCER!
I felt like a character in a Charlie Brown cartoon where everything was mumbled, and I could only hear the word CANCER!!!

Initially, it was believed I had Multiple Myloma. Upon further blood work and a bone marrow sample which was sent to Mayo, it was determined I had Waldenstrom's macroglobulinemia. I started several plasmaphersis treatments and one chemotherapy with bendamustine and rituximab.

Several weeks later, and about thirty pounds lighter, I was readmitted to the hospital after a visit with my oncologist.
I was unable to eat anything and developed a SEVERE RASH covering my entire body!! I was itching from my head to the bottom of my feet. I was redder than a ripe tomatoe, had swollen lips and eventually my skin peeled from the top of my head, ears, hands, back and almost my entire body. Later the rash seemed to correlate with IgM levels.

While in the hospital oral chemotherapy was started using ibrutinib. Upon discharge from the hospital it took about three months for my rash and skin peeling to stop. I started to eat actual food and not supplement drinks. The food no longer tasted metalic nor did I have to use plastic utensils.

My oncologist arranged for me to go to Mayo Clinic in Rochester, MN. I spent two days in Mayo and was referred to Dr. Binder for consultation. I was impressed with the time he took to listen to me and answer questions I had. He reaffirmed my oncologist in Sioux Falls, SD was doing what he could and was right about how to treat my condition.
I did several blood draws and a twenty-four hour urine sample. Dr. Binder suggested further testing to help determine issues I am having with pain in my hands etc.

I am so glad I have a strong support system of God, Family and friends!!!! I couldn't ask for better Physicians and people taking care of me.

Linda aka Puffwithfluff

I was diagnosed with WM in 2014. Since then, data shows that certain mutations, MYD88 and CXCR4, determine which treatments have better outcomes. The mutations are only found by a bone marrow biopsy. The International Waldenstrom’s Macroglobulinemia Foundation (IWMF) is an amazing educational and support resource for patients and families. I happen to be an IWMF MN and WI Support Group Co-Leader and would be happy to give you direction to those amazing IWMF resources.