Waldenstrom macroglobulinemia (WM) 3 years: Might I be in remission?

Yep. On 10 4mg of dexanetgsone once a week orally and twice a month before infusions intravenously. No sleep for 24 hours after😖

Only symptom is fatigue right now. No nosebleeds or sweating. Use cpap for sleeping due to copd, but only other symptom is bruise easily. Could be old age (81).

But young at heart I am sure

I started chemo/immune treatment for WM in March & developed a bad rash following 1st treatment. 2nd treatment only got 1/2 way thru due to rash. I found that Clariton plus a medrol pack & lots of lotions (including Cortisone cream, benadryl gel, lubriderm, aloe) gets it under control w/in a couple days. 1st couple days are
misery. I did just the Bendamustine for the 3rd round to see if that's what I was reacting to & it was. I don't know if I'll also react to the rituxan (haven't been able to make it through entire dose yet due to infusion reactions). Next treatment may be just rituxan to see. I read if you get rash with Benda it means your body is really responding. My IgMs have gone down from 3850 to 665 with just 2 1/2 treatments. I'm hoping I can continue treatments with prophylactic clariton prior to treatments. I'm sure the rash will still be bad but hopefully controllable. Also the rash in later treatments were not as bad as after the first treatment. Best to you in your treatments!

It seems like I am reacting to the Rituxan. Saw doc yesterday and are doing a much more agressive dosage of prednisone but so far no change. I am in a coastal town in nc and am wondering if you think or know if sun exposure makes it worse. Have been staying inside so far but would like to walk the beach

Good question. I live near beach in California and cover up big time since we are prone to skin cancers with Waldenstroms. I’m not a doctor but know too much sun can’t be good.

Don't know about sun but probably not a good idea to get too much. For me Benda is VERY hard on the skin. The first rash I had left my skin like alligator skin. Later ones not as bad. A good lotion is absolutely necessary for hydration for me. Agree with zeedee1 that this med can make you prone to skin cancers so that probably says it all. I'm hoping when treatment is over I can get back out in the sun a bit but I wouldn't do it now.

What symptoms should I be looking for with Waldenstroms? After three years I am still preety much asymptomatic except for fatigue and neuropathy in feet. Now starting to have unexplained weight loss (lost 15 b in last 6 months with no change in diet). Just wondering what to look for? Hard to find others with this diseae!

Totally understand. Night sweats, cold and hot(at same time), extreme fatigue with bursts of edgy some days, weak, edgy, tired, blood tests up and down… and that’s the good stuff😉

Forgot about the weight loss.. 25 lbs in 3 years and cold and numb feet and fingers