Living with MCL

The “fill in” oncologist has relented!

She is authorizing the restart of the Velcade this evening, and after her plasmapheresis treatment tomorrow morning, the oncologist is going to release Edie from prison I mean the hospital.

She’ll have her last plasmapheresis treatment on Friday as an outpatient.

Finally! Now maybe we can start doing what we should have been doing all along, treat the kidney and the myeloma, not the symptom.

If nothing else, I’ve learned a lot from this experience.

Met with the transplant specialist yesterday, and it was far different than what I experienced during my visit 5 years ago.

The doctor didn’t go over any of the complications, side effects and hazards of a transplant, but rather just discussed what Myeloma is in general, and then discussed the transplant procedure, and some of the complications resulting from the fact Edie’s kidneys weren’t functioning properly.

He did think we should restart the Velcade, but (there’s always a but) wanted to wait until after the meeting with the entire transplant team, on Wednesday, to discuss Edie’s case, before telling the “fill in” oncologist to proceed.

Needless to say, I was not happy with that response, but…………..

I was willing to wait until I saw the results of this mornings creatinine test, and as long as it was continuing to go down, I would wait. If it didn’t show any improvement, then I was going to insist (with Edie’s blessing) the oncologist restart the Velcade immediately, and if she refused, we would fire her, and get another oncologist.

Of course, as you might expect the way things have been going, whoever’s responsibility it was, forgot to draw blood for the creatinine test this morning. Instead all they drew was blood for the bleeding time test, which wasn’t even necessary since Edie wasn’t having plasmapheresis today.

Jeez! Can you believe that? Now I have to wait about another hour to find out the results.

Well, Edie has given the “fill in” oncologist one more chance.

Edie said the oncologist came in today smiling, and went over all her labs with her, and was just a lot nicer than she had been.

In addition, Edie has been given a pass tomorrow, to keep an appointment she has had with the Kaiser transplant team, and the fill in oncologist has agreed to accept the recommendation of the transplant specialist.

And of course Edie being so considerate of everyone, almost to a fault, has decided she can wait one more day!

I’m not sure the transplant specialist would be willing to do that, but the oncologist has assured Edie the transplant specialist will do that. And ultimately it is Edie’s decision.

Just as a side note, we were told by another oncologist, who knows one of the neurologists that Edie works for, that we should have fired that oncologist the first day. She is not very well respected.

Apparently she set a retirement date, the department even had a party for her, and then she changed her mind.

My understanding was there were a few unhappy people after that turn of events.

Oh well, we’ll see what happens tomorrow.

Stay tuned!

Well so far the plasmapheresis has dropped the creatinine to 5 (it was as high as 6.1), and they want to do it 3 more times, Monday, Wednesday and Friday. So it looks like Edie won’t be getting out of the hospital until this Friday, at the earliest, and that’s assuming there are no more complications.

The bad news is Edie’s platelet count has dropped to 126K, which now brings in the concern of the “fill in” oncologist, that bleeding could be a problem (since one of the side effects of Velcade is Thrombocytopenia), should Edie have a stroke during plasmapheresis. Of course the likelihood of that occurring is minimal, but it does give at least some pause for some concern.

Edie has no plasmapheresis scheduled today, so we’ll see what happens to the platelets tomorrow.

I still don’t like this “fill in” oncologist (she’s just way to arrogant), and my instincts tell me we need to resume the Velcade, but I’m a metallurgist, not a hematologist, so are my instincts worth considering?

I just don’t know anything anymore.