Thursday, February 25, 2010

The ongoing saga of this chest-cold...

Tuesday night, when I returned from dinner, I felt pretty lousy. I realized I was running a fever. It was getting worse. I hadn't had a fever since I left treatment in Arkansas, and while it's probably nothing, people get very concerned about it when it gets up there and won't break. Fever is a common side effect of Velcade, although I've never had one from its administration and I'm six months into therapy with that stuff. Dex, as an anti-inflammatory, also reduces fever, so that is probably one of the reasons they use the two in tandem.

At any rate, my fever climbed from 99 degrees to 101.3. My poor little girl was so sad, because she knows I got the cold from her. I explained that everybody gets it, and I was glad I got it from her and not from somebody else, and that I would rather be around her and get sick than not be around her and not be sick. That made her feel a little better. I love her so much!

Anyhow, at 101 we call the 24-hour call number for Arkansas. It's around 10PM by now, but a doc from Arkansas calls back in a few minutes. He's 99% sure it's just a virus, but he wants me to take some tylenol to see if the fever will come down, and double up on my TamiFlu (which I had been doing), and take Augmentin (which I had been doing) and then get some blood cultures done as well as a respiratory viral culture.

The fever broke a couple of hours later, so I managed to avoid the hospital, but still felt awful. I felt a little better Wednesday morning and managed to get into the office of my primary care physician -- the wonderful man who found my disease early enough to put me in a good position to battle it -- yesterday afternoon. I met with his colleague since he was not around. She, like he, is an infectious disease specialist -- turns out she was incredibly helpful to speak with because she knows all about immunosuppressant treatment and the impact of that therapy, and what can be done to ameliorate it.

The first thing she said is that being on Dex once a week is the same thing as being on it constantly. My T cells are being killed by it. It actually, she thinks, has nothing to do with suppressing the IgG whatsoever -- it simply makes the system less able to fight the medicine that is used to suppress the IgG, and because of its anti-inflammatory properties is counteracts a lot of the side effects of Velcade. For example, fevers. She thought that if I were to discontinue dex, I would be much more likely to get fevers from the Velcade. She wondered if perhaps the recent increase in Velcade and the recent decrease in Dex could have resulted in the fever -- I told her that was an interesting theory but Occam's Razor* dictates that I got the fever from my daughter who had the same symptoms four days earlier.

She looked in my throat and told me I had thrush. Yuck. I remember thrush was one of the concerns in Arkansas during primary treatment -- they gave me Fluconazole to combat potential thrush. Some people, like my friend DP who maintains a blog elsewhere, were unlucky and got it -- it sounds awful. So I really didn't want any! I asked if I should go back on the Fluconazole and she recommended against that because that's hard on the liver (I remember this having an impact during therapy, though nothing serious) she recommended a mouthwash whose name escapes me. We'll try that for a couple of weeks and it should clear up, she thinks, and if not we'll go to the Fluconazole. She said that it was not yet severe, and that I will likely just need to do this quarterly while I am on the dex to keep it away.

She pointed out that TamiFlu is not effective against H1N1 if people have taken it prophylactically. So that answers that question. I'm not gonna take it any longer until I have a cold or flu that is flaring up. That will save money and be one less pill I have to take. She said that H1N1 will be back as it is making the rounds outside the US right now. She said that it's not seasonal, unlike the regular flu (regular flu season being over). I found this interesting and a little alarming, but I'm not a big "oh noes [sic] the end of the world is near!" H1N1 phobe.

She told me I should get the blood cultures done. I wanted to push for Tuesday, but she insisted they be done today, so I'm off to the infusion again this afternoon.

She also suggested that I go on prophylactic antibiotics. One she mentioned that was popular could decrease white count -- I told her that wouldn't work because the Revlimid is depressing my whites too much as it is, and she acknowledged that Myeloma docs generally don't like that particular drug. One cycle wasted on that conversation! :) She said there is another drug, however, that does not have that side-effect. She is going to call Arkansas, speak with either BB or Dr. EA, who is responsible for all supportive care, and make sure it's okay.

Meanwhile, I'm off to have blood cultures drawn this afternoon. The fever is gone, but the hacking cough remains. Ugh.

As for the IVIG, no point in getting that until I get over this. First, it won't make a difference at this point, and second, they want to be able to track my response to the IVIG, and some of that could be masked by flu-like symptoms so I want to make sure we know what's causing what.

And that, my friends, is all the news that's fit to print for the day. I still have those WBC charts to put up soon!!

*Occam's Razor. One of my favorite little ironies.

This is a critical element of logical thinking and an historical moment for reasoning in man's history. William of Occam came up with the simple maxim that the most obvious answer is the most likely one. For example, if there is smoke coming out of your house, the most likely answer is that it is on fire.

The irony, which I find hilarious but nobody else seems to laugh at, is that when this maxim was popularized, the most obvious answer to ANYTHING was "invisible gremlins did it."

"My horse just fell over dead." "Aha! Invisible gremlins did it." "However did you deduce that?" "Occam's Razor, my dear boy."

"My wife was drinking polluted water and now has the Plague." "Aha! Invisible gremlins did it!"

You see what I mean.

I can hear the peals of laughter coming in from all around cyberspace...

Tuesday, February 23, 2010

IVIG to the rescue?

Got a call from one of the nurses at Arkansas today. I think she must have called the house first and spoken with Jill, who probably reported that I'm have a problem with these stupid flus / colds.

The nurse told me she spoke with BB who proposed I get an infusion of immunoglobulin. Basically beef up IgG with some donor cells. I'm all for it -- we'll keep my crummy, wants-to-produce-myeloma IgG suppressed and help it out with some better IgG.

I think that means more time in the chair, and side effects including headache, etc. etc. but frankly I gotta stop getting these chest colds!!

I am thankful for their proactivity in reaching out to me and recommending this course of action. Not something Dr. GD would have done on his own, I don't think. I love the aggressive bias-to-action approach that BB embodies.

Spoke too soon...

Lying on the couch watching some TV last night, all of a sudden a stabbing charlie horse in the bottom of my left foot. There must be something to being in a recumbent position that triggers these things because they don't happen when I'm walking around. Anyhow, I had potatoes with my dinner, had been drinking plenty of water, and have been on the Magnesium pills, so none of that is foolproof!

I will continue to monitor this and report back.

Sunday, February 21, 2010

Oh, and thanks to Sean J for the Magnesium tip!

FYI, I have been trying to keep hydrated and also take magnesium for the leg cramps...and so far, so good. A couple of false alarms last night, mostly because I wasn't fully hydrated (a few glasses of wine earlier in the evening, plus coming off Dex and peeing everything out, equals not that hydrated).

But I'm pleased to say I've been taking ZMA at the suggestion of my friend Sean. This contains Zinc, Magnesium and some Vitamin B. It's frequently used by bodybuilders to increase testosterone (need this!), rebuild muscle mass (need this) and whatever the Vitamin B will help combat neuropathy and the Magnesium -- so far, anyhow -- appears to be keeping the cramps away.

I'm keeping it up -- three big-ol horsepills every night. But so far, so good!

Sorry to drop off the face of the Earth!

Well, work has been very demanding for the last two weeks. It is good to be back and fully engaged, but it has been a constant stream of work from the moment I wake up to the moment I go to sleep for about two weeks now. Not so stressful as to induce illness -- I'm doing a good job of managing that. But it is certainly time consuming! So my apologies, dear readers, for not getting back on here sooner.

I think of my friend WB, who is done with induction and appears to be doing very well! I have that white blood count graph I've been meaning to post for two weeks now...forgive me, Bill, I'll get it there soon! And then I'll move on to electrolytes since you'll be going through your transplants soon and you'll want to see how that all shakes out!

Kathy Giusti of the MMRF lamented to me that she got every cold in the world when she was on Revlimid. I contrasted this with a person I met in Arkansas -- who was nice enough to buy the wife and me some lunch without knowing who we were, which was followed by a very nice conversation. That person said they never got sick any longer.

I am thinking both may be true. I am thinking that once I go off Revlimid, I might have a spiffy immune system. I also think, however, that Revlimid's purpose is to suppress the immune system and it does a damn good job because I HAVE MY THIRD CHEST COLD IN FOUR MONTHS and it's getting VERY, VERY OLD. I literally just got over the last one three weeks ago and I've got it again.

I am doubling up on Tamiflu and also taking Augmentin, which CR prescribed for me to knock out the bacterial aspects of the bronchitis. Seems to be helping. We'll see how long it takes me to get through this. On Tuesday I will get a look at my blood counts. My WBC was only 3.0 last Monday; pretty low! I wonder if it has spiked to get rid of what ails me?

More news this week, I promise. Be well everyone!

Wednesday, February 10, 2010

A quick response from BB on leg cramps.

I emailed him last night to tell him there's an error on his website (in one place it says Myeloma is not curable!) and I mentioned in passing the leg cramps. Now mind you, GD (who I do think is probably a good doctor) sort of fumfered* a bit and initial said nothing other than "sorry, can't give you quinine." With a bit of prodding suggested potassium. Then two minutes later added Magnesium.

Bart immediately told me to take Elavil, 25mg, nightly.

I did some research. It's another tricyclic antidepressant. I have avoided taking the Cymbalta that was prescribed for something else (I think neuropathy) and found another remedy that worked. I'm not depressed. If I was on both these things, I'd be a little loopy -- but probably really happy!

I'm not sure what I'm gonna do with this -- probably try potassium, magnesium and calcium supplements. My thighs hurt a smidge right now...could be from the dex, or the velcade, or even from the Zometa (but I doubt it as the pain was there before I got the Zometa yesterday). Nothing major but enough to make me wonder what's going on.

*My new favorite word.

Tuesday, February 9, 2010

Thin walls at GD's office...

Got my second infusion of Zometa today. Hopefully when I go back to Arkansas in May, all those bone lesions will be gone.

Velcade was upped to 2.5mg from the 2.0 that I was getting. It seems to me that this is slightly less than the 30% increase that BB wanted, however GD said it was the "maximum they could give." I explained that BB said he gave this to little old ladies, etc. GD was unmoved. Oh well. I'm sure a 25% increase will do the trick.

As most of you here suspected, the leg cramps are from the Revlimid and Velcade. I got some more last night. GD said that they sometimes prescribe quinine but that lowers platelets and mine are too low for that kinda stuff. I'm going to try potassium and magnesium supplements. I used to have magnesium tablets from way back when in the hospital in Arkansas, but I'm pretty sure I pitched them in an effort to reduce the size of the giant medicine sack that I've got under my sink. I may need to buy some more over-the-counter. As for potassium, it's back to potatoes, sounds like. We shall see what happens.

Other than all that -- and another fairly painful port access from the inept nurse -- it was pretty much business as usual. Except I heard through the wall a woman being counseled for her Myeloma. It was all I could do not to scream through the wall or try to knock it down. This woman has already been on other therapy but it hasn't done anything. So after consultation, they are going to start Velcade and Dex (what the hell was she on before? the mind boggles...could it possibly just have been prednisone?) No mention of Revlimid or Thalidomide. But after a while, with the minimal amount of Velcade and Dex, if she tolerates it (she was young, the doctor said) they will add Cytoxan.

I wanted to bang on the wall and scream.

Then I heard her say "I trust that what you're doing is the right thing" and I wanted to tear the wall down.

Oh well. None of my business.

I feel sorry for that woman. Even if one pursues a control-the-disease only approach, this mishmash of drugs isn't the best way to do that, seems like.

Wednesday, February 3, 2010

Two incidents of acute discomfort, or, OWWWWWWWWWW!!!!!!!!!! *!*#*!&*@**#!!!!!!! (and a Velcade schedule comment)

Hello folks.

Well, sadly the old portacath pains are back, entirely as a function of poor technique on the part of this nurse at GD's place. The great and painless nurse that quit assured me that her colleagues were capable, but they are not. I was searching for a comical descriptor..."merciless witch" was one that came to mind but she is too sweet to be called that. Likewise, "vicious, needle-wielding harpy" is also probably a little over the top. "Nurse with poor technique" is accurate but not very spunky as far as names go. C'est la vie.

Anyhow, accessing the interior portacath wasn't quite as bad as the searing, awful pain that it was three months ago but it certainly hurt like heck...kind of like somebody took an awl and shoved it into my chest half an inch. This was still hurting when I went to bed eight hours later.

It was not, however, hurting at 3AM. At 3AM, I woke up with a stabbing pain in my right calf. It was the worst cramp I'd ever experienced. I'd gotten a couple of these over the past week -- they are quite rare for me, thankfully. And I hadn't thought anything of them, and probably wouldn't have thought anything of this one. Except that at 3:01AM, this became only the SECOND worst cramp I'd ever experienced because I then got a cramp in my left calf, same basic place. These were very bad, people. I got up and found I couldn't put any weight on my legs.

After a minute I shuffled over to the computer and with the help of Wikipedia, ruled out deep vein thrombosis. So that's good. Unfortunately, neuropathy can be associated with these cramps.

Cramps, of course, could be a million other things including side-effects of my meds that have nothing to do with neuropathy. I am mindful of BB's admonition not to overanalyze myself.

Having said that, it's now almost three hours later and my legs are still sore.

Jill observed that I didn't have Velcade last week, so maybe my body just wasn't very happy about it. That's a possibility.

On that topic, I realize that I didn't cover off the issue of whether or not there are any breaks in the Velcade. Here's what BJ said: Velcade interferes with the testing, so no Velcade is given while in Arkansas. This equates to a break about every four months of one week.

In that week, I noticed that my red counts crept up (from 12.9 to 13.2, although this could be noise) and my white counts crept up (they were 3.8 two weeks ago and are at 4.2 now, ignoring the temporary spike to 4.8 in response to my cold). On that note, I have a lingering productive cough (say 10 times a day versus 200 times a day before the Augmentin). Hard to finish these things off with a depressed immune system!

White Blood Count graph is next, with special consideration for my new friend WB who started induction a couple of days ago and will likely be familiarizing himself with neutropenia soon. Hopefully it will reassure him to see the ebb and return of white counts in response to therapy.