Thank you for your comment, and I’m sorry to hear about your husband. I am in NYC, so traveling to farber or md Anderson or mayo would be difficult for me.

In ny I have been treated so far at two hospitals with excellent reputations, but seem baffled by my differential. Combined with my age, my specific differential is a hematological grey zone, and unfortunately, it’s making getting care impossible. There is zero wieght to mzl in my case besides the cd markers, which are identical to lpl/wm. Symptomotolgy is textbook WM, and the appearance of them more than a year ago is what kept me going to doctors to try and figure out what is wrong. The fact that I got the IG panel, was purely due to me. I sought out an allegorist immunologist to see if I was allergic to something suddenly. My symptoms which I learened after Waldenstroms was brought up in march but was told it would be very unlikely, and they didn’t think I had cancer at all, and elevated igm are hallmarks of it. This was in march. The fact that in August I was not only told I have nhl, but the differential was wm/mzl seems like an impossible coincidence. Even so, it is not like I want either, all I want is to truly exhaust testing to the point where, and it could happen, they have to guess. With both cancers how you treat it matters. How you begin to treat it REALLY matters. It is beyond my comprehension that I have documented symptoms going back more than a year that that flair together, and have gotten worse together, and are indicative of one of the differentials, and not at all the other, that it is not considered. I’ve learned a few things so far about people like you husband and me, and what we are facing. 1) (maybe this will give you some comfort) my symptoms from around November on have basically left me disabled. I am out of breath making the bed, unilateral while right side edema, non stop tinnitus, confusion, in a flair the inability to speak. If your husbands labs are off, but he still feels relatively ok, I wouldn’t worry so much because with cancers like ours symptoms really matter. Having them is usually the trigger to start treatment and get out of watch and wait, I’m not sure about myeloma, as I actually have a clavicle bone lesion from my cancer, but was told I don’t have myeloma.

2) if he’s on meds and improving that is good. That’s the goal. You got through the bottle neck I’m stuck in, and your husband should definitely feel good about that! It’s certainly still scary, but i can tell you from experience. I got a pretreatment for treatment and it made me sicker. It ironically is for myeloma, but I was prescribed as steroid pulse at a very high dose. It has but me into potential kidney failure. I found this out Friday from the hospital. The Dr who prescribed them, didn’t show up to what was meant to be my first infusion. He also didn’t respond to 10 or so calls emails etc, when I started having a severe reaction on day 2 of the 4 days or the entire 6 days after. So really take a treatment and improvement as a very good thing.

3) This is the most important. The medical system is broken. It doesn’t work correctly. Throw in a rare disease and the battle is uphill. The best thing you can do for yourself is download and read every single after visit summary, google what you don’t understand, and then use your own common sense to see if it adds up. You don’t need to be a doctor to do it either. I’m a younger generation, and more internet savvy but I can assure you, it’s all not that complicated. Doctors for the most part will tell you don’t google blah blah. However, what google does is just give you acceess to research information etc, that before the internet was unavailable to the patient. You and your doctor can read the same guidelines, the most up to date discoveries etc. The difference is you are 100% more likely to actually do that. Dr.s have to many patients and in the end for most, it’s a job. It’s not a calling. So do not be afraid to research everything about myeloma. You can even just copy and paste those cd markers for your husband’s pathology, and check for yourself what they match. WHEN INFORMATION BECOMES MORE FREE, EXPERTISE MEANS LESS.