LIVING WITH MCL

Medicine is supposed to make you feel better, not worse. No one should have to go through the same misery Edie experienced last night (after receiving her 4th dose of Velcade yesterday afternoon), having to run to the bathroom, seemingly every 1/2 hour, and certainly, no one should be subjected to watching, not being able to imagine the misery they're going through, and not knowing how to respond. Last night had to have been the worst night of all, including the evening after receiving Doxil . It must have been pure hell, and I can only hope that means the "medicine" is working. Edie goes for another blood test this morning, to check if that is the case. The only thing I know for sure is, I don't want to have to go through that same misery.

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 r

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,

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 hematologis

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

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 th

That's how long the nephrologist said Edie may have to stay in the hospital. :o , after his consultation with Dr. Durie (Myeloma specialist). Dr. Durie agreed the pheresis was a good idea. Plus he added that she should continue with the Velcade plus an increased dosage of Dex (40 mg day 1, followed by 20 mg every other day 3 more times). Edie won't like that, but if it helps it will be worth it. The on call oncologist thought the Velcade may have been exacerbating the problem with the kidneys, but according to Dr. Durie, Velcade is not cleared through the kidneys, so that isn't an issue. Plus the Dex, being an anti inflammatory should also help. So right now, she should be receiving her catheter for administering the pheresis as well as the Velcade. I forgot to ask whether they will be continuing the Doxil. I'm not a real fan of that particular drug, so I'm not overly concerned if they don't restart it, assuming of course the Velcade and Dex will do the tri

Got a chance to talk to the nephrologist (who looks young enough to be our son) today, and he seems to think the rapid rise in Creatinine is due to her free light chains, which have been steadily increasing, and depositing stuff in the kidneys. An earlier ultrasound ruled out any blockage. I'm not so sure though, being convinced it is the elimination of the Dexamethasome, which Edie stopped about 3 weeks ago, that caused the problem. She hates the Dex, as it causes all sorts of unpleasant side effects, and wanted to stop taking it. Still there doesn't seem to be much consensus as to how to proceed. Right now we're waiting for the [on call] oncologist (hers went on vacation this week), to decide if we are to continue with the Velcade/Doxil treatment, hopefully with the Dex added back in, and when and if they're going to put a shunt in her jugular, for the administering of chemo and/or plasmapheresis or dialysis. I'm sure she would welcome visitors (I can only s

The only difference between today and last Monday , was this time Edie's creatinine had risen to 6.1, and I wasn't there with her, when they decided she need to be admitted to the hospital, for more fluids and to receive dialysis. I just don't know. It wasn't supposed to be this way. :cry:

Yesterday, Edie had her first infusion of Doxil , and second infusion of Velcade , but this time in the infusion center at the hospital, as an out-patient. (She had her first infusion of Velcade while in the hospital last Tuesday) Because of the administration of Doxil, yesterday was a particularly long day, starting at around 10 AM with blood work, and ending around 4:30 PM, by the time she finally got home. I certainly was relieved. Thank goodness she only has to endure this once every 3 weeks, as I don't think I could handle it any more often. The total therapy consists of receiving Velcade on days 1, 4, 8 & 11, with the Doxil administered on day 4, followed by the next 10 days off. Then the process starts all over again, and goes on for up to 8 cycles, which will take us up to just before the time we are planning to leave for New Zealand . Hopefully by then, or sooner, some sort of remission will be achieved, and she can either decide to stop further treatment, or go on

Well, all of Edie's counts were stable this morning, which means they didn't improve, but neither did they get any worse. I guess that's good, but............ Anywaze, the doctor gave Edie the OK to go home, armed with a bag full of drugs including Procrit , Neupogen , and some other drugs mainly to counteract the effects of the chemo (Velcade and Doxil) which she will be receiving for the next couple of months. It's amazing, that you have to take so many extra drugs to counteract the effects of the chemo (which is intended to kill all the cancer cells, but in the process destroys many good cells as well), after which you're expected to get better. Sounds a little counter intuitive to me, but then again, no one ever said medicine was an exact science. Only time will tell.

I was just checking the schedule for the Team in Training Tuscon Team, anticipating possibly riding with them this Saturday, and I discovered my picture is on the front page of the website, with the team coach. At the very least, I look like a dork. Even worse, I have this strange grin on my face, and I think I look fat, but the worst part of all, I look old. Ed, the coach, looks a lot better. I am so embarrassed! :oops:

Well, Edie's creatinine has fallen back to 3.5, which is good, but her hemoglobin is continuing to fall, and is down to 8.4, which isn't good. So the oncologist wants to keep her there for another day, to monitor her further, while she continues pumping additional fluids into her, and starts her on a Velcade + Doxil treatment regimen (Velcade today and Doxil Friday). Doxil + Velcade has shown some efficacy, as indicated in this 2006 ASH abstract , so we are hoping for the best. In the mean time, I am getting some more personal items for her, including her computer. Hopefully there is a wireless access point some where for her to log on to the internet. If not, she can at least watch a couple of DVD's. One good bit of news is, she has a private room, the unfortunate part of that is, I believe that perk is afforded all cancer patients. NOTE: As of  11:30 AM Edie does have internet access (albeit a very slow and inconsistent connection), but you may be able to contact her

did I envision Edie's appointment with her oncologist would begin with Your creatinine is up to 4, and we need to admit you to the hospital immediately, to pump you full of IV fluids and then begin treatment with Velcade. Oh and your hemoglobin was down to 9.8. That wasn't exactly how it happened, nor were those her exact words (she does have a better bed side manner than that), but that is pretty much all I remember. So I ran home, packed the few things Edie thinks she'll need to get through the next 24 hours, and I'm about to head back out on my bike (we drove separate cars to the oncologists office, and I don't want to leave one there over night) to take here the things she needs. The oncologist was optimistic she will only need to be there 24 hours. I sure hope she's right. This just isn't any fun anymore!

I don't know how others manage, but for me it's just getting harder and harder. Ever since Edie informed me of her latest test results on Monday , I have really been in a stupor. Just getting out of bed this morning was a chore, and I didn't even enjoy the round of golf with the Eldorado mens club yesterday. Even riding my bike offers little enjoyment, although when I am on my bike I seem to be able to forget most of my troubles, as I struggle to climb a hill or just to keep up with the other riders. It also helps in controlling my weight, as I have this almost uncontrollable desire to eat. So I force myself to ride. Still that only lasts for about 3 or 4 hours a day, after which reality sets back in. It's one thing to be sick yourself, and deal with the consequences, but when someone you love is sick, dealing with that also, well..... that's a whole 'nother issue. Edie does manage to put on a happy face most of the time, as I do, but I know how that is.

Yes, I won my first round of match play in the Eldorado Men's Club golf Flights Championship , but not even that could improve my mood after Edie called and said her urine protein jumped from 399 mg/24 hrs in November of '06, to 2288 mg/24 hrs in July '07. That isn't good, and means the Revlimid and Dex isn't working. And I had such high hopes. :( Now we're faced with a decision - Velcade and Doxil (AKA Adriamycin ), Doxil alone or a transplant, none of which are good choices, at least in my opinion. Anyone who has ever read this blog, or posts of mine else where, know that I don't like the idea of a transplant, except as a last resort, and I don't like Adriamycin much more, but those are the choices. So right now, Edie's oncologist is going to contact Dr. Durie, a myeloma expert at Cedar's Sinai, to get his input, plus she is going to have a MUGA scan (to test heart function in anticipation of using the Doxil), and then she has another appointm

I met the participants for this years Team in Training , El Tour d'Tucson ride for which I am the honored team mate . Even though I coached the '05 Solvang team, and have met individuals from all walks of life touched by cancer, I am still amazed at the wide cross section of individuals that choose to participate in these events. I know everyone has their own particular reason for participating, and this certainly isn't something you would wish on anyone (ok, so maybe there are a few exceptions), it's good to know you're not alone in your struggle. And on a lighter note, I got the Lexus back yesterday, and I think it looks damn good. The guys at Earl Scheib , in Bellflower , did a good job. I will let you be the judge though (click on the photo for a larger view). The color isn't the exact match for the original, but without a back to back comparison, no one could tell. You also have to remember this is a 15 year old car, so it's doubtful even Lexus coul

Just got the results from this mornings blood test, and while my absolute lymphocyte count is holding steady at around 88 thou/cumm, where it has essentially been for the past 10 months, the real surprise was my hemoglobin jumped to 13.6 g/dl from 12.5 g/dl last month. No wonder I felt so good this morning on my bike ride. That should also put me in proper spirits for my first ride with the Team in Training Tucson Team this weekend. Of course that could be an error, but I'll choose to believe otherwise, at least until I see next months results. So this morning I checked the local wine shop (The Wine Exchange in Tustin), and they had 6 bottles of the 2003 Domaine Serene, Mark Bradford Vineyard, Pinot Noir left (The winery was sold out). I bought 3 of them. It was one of the wines we had at the Domaine Serene wine dinner, and it was excellent. Not as good as the '02 Monogram (so you can imagine how good that one was), but it was a lot less expensive, and I did buy a bottle