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.


  1. Hey Nick,
    "INEPT" might be a good word for that nurse.

    Were the cramps like charley horses? I had that a few weekends ago, while visiting in Florida, and Oxycodene helped (it kept happening, felt like a neuropathy b/c it was in wee hours of morning while in bad, like when I get the burning hands.) It has stopped completely, after a few days of it, and I think it was dehydration. Any chance lack of fluid caused yours? I stepped up water intake and have been fine since. THANK GOD! Those hurt!

  2. Nick -- I have written before on this and wondered if your medical team ever got an answer... low potassium levels have been linked to leg cramps... any chance the Velcade has some potassium and when you don't have it, you are dropping those levels? Just an idea...

  3. Hi Nick,

    I had excruciating leg cramps when I was on Velcade (also while taking Thalidomide and Revlimid). Since I've had no treatment in a few years, I've noticed that the calf cramps are pretty much gone. I do have neuropathy up to about my mid-calf.


  4. Looks like H will be starting Velcade shortly, have read so much about neuropathy and leg cramps perhaps Sandy is right about low potassium levels when you have a break from Velcade.( wonder if anyone has asked about that)
    So we have much to look forward to with Velcade! but not so much choice really is there. I sincerely wish you better days Nick.

  5. I concur on the potassium levels affecting both neuropathy and cramps. Suggest eating source of potassium. Magnusium supplements also does B vitamins and drinking LOTS of water. I had some leg and foot arch cramps during Velcade, the I did the raisin/magnesium/B vitamin thing and it (seemed to) mitigate the problem.

  6. Just weighing in. Revlimid is notorious for
    causing leg cramps. Very early morning is when they hit Tim too and always in the calf muscles. We kept a heating pad plugged in and ready by the bed and wrapped his calf when they hit. He was also allowed to
    take calcium/magnesium supplements after checking with his doc and that helped ALOT.
    Some people swear by quinine water but you have to be careful. It can cause drops in platelets, believe it or not, and being on chemos that bash blood counts, that certainly is an issue. I well remember those mornings being woken up by Tim almost yelling out in pain as I stumbled in the dark for the heating pad with my heart in palpitations from waking like that. Someone on the acor listserv said they never got another cramp after they started drinking pickle juice! Try the cal/mag.

  7. Thanks for the "special consideration", still overwhelmed viewing the labs every day. So sticking with your advice, WBC!! Good news - lose the bag today. Bad news - cold turkey off high dose Dex (I'm 15 lbs heavier than when I saw you last week). Am I in for the CRASH?!?!? So I hear.....WBC readings - Monday 4.24, Tuesday 6.74, Wednesday 12.85, Thursday 10.04, Today, tomorrow?!??!?! Oh yeah, bananas = good potassium!

  8. Potatoes are the best source of potassium, per the sheets I got from the nurses. The banana lobby must have photos of somebody because they are way down the list.

    So Bill, run by Whole Hog and get two baked potatoes on the side -- they make them really good there!!

    As for the weight, you'll lose it again. It's a bit disturbing though, to gain so much that quickly, isn't it?