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.
Well, I’ve just about had it.
After providing documentation to the fact that Velcade does not affect the kidneys, and is in fact beneficial to the kidneys, the “fill in” oncologist, admitted that to be the case, and then proceeded to come up with a new excuse. She said the reason for not resuming the Velcade was that the risk of a stroke was high during the plasmapheresis process, and if the platelets went down that could be a problem.
She then went on to add,
I’m covering my ass!
Can you believe that? The reason she doesn’t want to resume the Velcade is because she’s more worried about herself, than she is Edie.
Since that time I have done some research, and talked to someone knowledgeable in the field of plasmapheresis, and discovered, that the risk of stroke is minimal at worst, and only when the platelets are starting out at a relatively low amount. Edie’s currently is over 200 (reference range 130 – 400).
So while Edie’s creatinine is still at 5.3 after the second plasmapheresis treatment, her hemoglobin continues to drop, and the myeloma continues to progress, the “fill in” oncologist, doesn’t care. She just wants to go on treating the symptoms, instead of the cause of the disease, because she cares more about her ass, than she cares about Edie.
Unfortunately, she is the oncologist on call for the weekend, so there is no way to get in touch with anyone else, until Monday morning.
So tomorrow (Sunday) evening, we are going to fire her (that’s what patient services said we have to do), and get another oncologist [hopefully mine will be willing to take over] in the interim, until Edie’s regular oncologist returns on September 4th.
I just hope we haven’t waited too long.
Do they think they know more than all the experts?
Yesterday, the on call oncologist convinced Edie not to restart the Velcade, despite my disagreement with that decision.
The oncologist said all the literature she had read insists Velcade can be harmful to the kidneys. This is despite considerable evidence to the contrary, which I easily found on the internet, and the recommendation of Dr. Brian Durie (a renowned myeloma specialist at Cedars Sinai), that Velcade is not harmful to the kidneys, but rather is most likely helpful in returning renal function to normal. [I wonder where she gets her research?]
Instead she wants to wait 11 more days, until Edie’s regular oncologist returns from vacation, and let her decide. [11 days is an eternity as far as I'm concerned.]
Unfortunately I wasn’t there at the time she came to see Edie (6:30 PM), to try and reason with her, as I was home feeding myself, and making sure Sylvia had something to eat.
I guess I’m going to be at the hospital for the long haul today.
Hi, my name is Marc [that's my wife Edie beside me], and I have Mantle Cell Lymphoma, a typically aggressive form of lymphoma, except it so seems in my case.
I was diagnosed over 9 years ago, and have managed to survive since then without treatment, by following a few simple rules. Eat a [mostly] well balanced diet, exercise (cycling, at least up until recently), abstaining from taking supplements or any medications, drinking 5 to 6 cups of [Japanese] green tea a day, and most importantly [lots of good wine], flossing and brushing my teeth twice a day, everyday.
I started this blog mainly to chronicle my life, putting down in writing what goes through the mind of a cancer survivor (although I have been seen straying into unrelated areas on occasion), and along the way help educate others about lymphomas and other blood cancers, and filter out some of the hype and misinformation so often associated with the internet, which unfortunately there is plenty.
You can read a lot more about me by clicking here