LIVING WITH MCL

Edie has started on her second round of Pomalyst, and the results just keep getting better. Her Kappa freelight chains are now down to 36 from the 175 about 3 weeks ago. The normal [reference] range is 5 to 19, so there is still a little ways to go, but at least there is progress. Her numbers haven't been this low since after her transplant in October 2008. (It's hard to believe it's been almost 5 years now.) The only question remaining, as it was was when she first started on the drug, is how long to take it? There doesn't appear to be a good answer for that. Since this drug is so new, there's not a lot of information about how long to stay on it, or even how long is safe to stay on it. Fortunately there doesn't appear to be any significant side effect which can be attributed to the Pomalyst, and which could prevent its further use. So for now the plan is to finish this cycle, and then see what her numbers are at the end and how she's doing, and then decide...

It's now been just over 2 weeks since Edie started her first 28 day cycle (21 days on and 7 days off) of Pomalyst, and the initial results are encouraging. After only 12 days on Pomalyst, Edie's Kappa Free Light Chains dropped from in excess of 600 to 175. I believe that to be the biggest individual drop in numbers she's ever experienced. Don't know if any new side effects can be associated with the Pomalyst. Edie has been (and still is) on so many different drugs, it's difficult to determine what side effects are caused by what drugs. At least she doesn't appear to be any worse off, so that's a good sign. The only questions remaining now, are how many cycles of Pomalyst will she need, and if the treatment will be long lasting? Only time will tell!

It seems my cold is finally running it's course [at least I hope]. On Saturday it was a sore throat, Sunday I was congested and had a constantly runny nose, and yesterday was an extreme headache and a mild cough. Today the cough as progressed a little beyond mild. (I even had to resort to taking 1 Tylenol and some Hall's throat lozenges to help ameliorate the discomfort.) But rather than dwell on my problems any more, I thought this would be a good time to update everyone on Edie's condition, especially since it's been awhile (just about a year) since I last posted anything about Edie. Since that time, Edie started on maintenance Velcade (infusions every other week). She had also been taking Biaxin on a regular basis, because her doctor told her it had shown some efficacy in treating Multiple Myeloma, but due to some side effects, she went off it to see if that would help. About that same time, her free light chains started to rise. Whether that was coincidental, a di...

It seems the second go around of Velcade plus Decadron is doing its job on Edie's myeloma. After just two treatments, her blood counts are improving, as is her kidney function. So all would seem well again. Unfortunately that is never the case. As I've learned many times in the past, there always has to be some bad that goes along with the good. If you remember from her first go around , it was the Velcade that caused Edie's peripheral neuropathy (PN), and now it seems see she is experiencing some additional PN, above and beyond what she already has been experiencing. Plus last night, after her 3rd round of treatment, was a particularly trying one. She woke up around 12 AM with the shakes, and was not feeling so well. So she took a Lorazepam, and went down stairs to see if she could sleep on the recliner. A few hours later, when I went down stairs to see how she was doing, she seemed to be feeling a lot better. The only problem now is she can't seem to stay awake for mo...

It's not bad enough Edie was diagnosed with multiple myeloma 5 years after my diagnosis with lymphoma, has already undergone radiation treatment [twice], several different chemotherapy iterations, and a stem cell transplant (while I have had no treatments or major symptoms), today she's going for here 2 nd blood transfusion in just 3 weeks. She had to go for the first transfusion about 3 weeks ago, after taking a round of Melphalan , which did a job on her immune system, dropping her hemoglobin and platelets to [I assume] dangerously low levels. (Why else would the doctor order a transfusion?) Her counts did initially recover after the first transfusion, but unfortunately the results of her latest blood test (yesterday) indicated a drop in hemoglobin back down to 7.5 g/dL, the same level they were just before the first transfusion. Her platelets managed to increase from 27 thou/mcL to 55 thou/mcL, but that's not much consolation, as that is still pretty freakin' low, a...