Kidneys stayed about exactly the same. Not bad, but not good. But Dr Phan said we might not see immediate improvement from the 4 days of saline drip and 2nd dose of doxil. So we'll do more lab work later this week and see if there are any changes. We didn't have the results of the "light chains" which is a real marker for the cancer. This is where we really want to see improvement, given the cancer is impacting the kidneys.
I haven't had night sweats in a few days, even after chemo and steroids. This is a real change and possibly a good sign, given they've been a symptom I have had since the get go. Sooner rather than later, we'll do a bone marrow biopsy and this will give a real clear picture of what is going on. My bones and calcium count are still ok.
I'm low on blood, so tomorrow is a surprise transfusion day. It's been a while since I've had one, so I am about due. We'll do it as out patient. I had planned to go to work tomorrow, but blood trumps work. I am still trying to keep up with work, but it's tough to do with the ever changing medical program. This sucks, I really just want to go to work and be a normal working stiff.
Dr Phan is referring me to 2 different local myeloma experts. At this point, he said we need to get creative, aggressive and talk to some other myeloma specialists. It doesn't necessarily mean I have to travel to Arkansas just yet. It's more the doctor than the location. So he is sending me to two of who he thinks are the best....James Berinson, who is somewhere in LA and Dr Durie, who is at Cedars.
Friday we finish cycle 4, and then in all likelihood we'll switch to revlimid. For revlimid, I had to sign some forms that I didn't have to do with the other drugs. The forms had to do with me acknowledging that revlimid can cause birth defects in babies. So I had to sign, agreeing that Leslie and I won't be having any babies while I am on this drug. Not a problem, but kind of a trippy thing to have to sign.
Leslie is still kicking ass and really doing more than I ever could of asked anyone to do. My mom was here, as was my brother and his youngest. It's really tough for me to simply say I'm tired, go away and conversely really tough for me to ask for help on simple things. Either way I feel guilty and like I am a burden to everyone. And then you throw in the damn Jewish guilt......like me thinking "damn I should be have been nicer to my visitor" or "damn, I'm a horrible communicator". Communication takes energy, I really should have worked on this when I was younger and healthier. It would make things easier now. Got a real nice card from my sister and her family. As always, I really appreciate every one's concerns, thoughts and prayers. That is also real important.
And I think that's about it for the update. It's all overwhelming, but we all agree that we need to get more aggressive. Generally I feel the same as I have felt for months. Fatigued a lot. But otherwise I'm strong and now is a good time to fight.
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...