After the last disastrous round of chemo, I was very apprehensive about doing round three. I was actually quite petrified. I walked into my oncologists office with two goals: to ask for any meds available to make the day easier and to see if I could shorten the chemo from six sessions down to four. I love my oncologist because she really listens to me and takes what I say seriously, while also bringing a level of authority and knowledge that I really respect.

We immediately agreed that I should get pain meds before any other chemicals enter my body, and that worked out relatively well. As always, it was a two day regiment, and the first one (Thursday) was pain meds, nausea meds, rituximab (the main one) and then the bendamustine. I had the usual symptoms of feeling nauseous and like shit pretty much from the start, and I managed to vomit a couple of times while getting the rituximab. The pain stayed away until about 2 pm, when it came with a vengeance. I felt it in both my upper thighs and my lower back.

The timing sucked: I was about to start the last hour of bendamustine. If I interrupted it to get pain meds, I would add 30 minutes for the infusion, and it would only kick in 30 minutes later, leaving me with 30 minutes of “relief” but only after one more hour of pain. If I stuck it out, I’d be out in less than an hour (pain included). I decided to stick it out but asked for a hot water bottle, which was prepared for me…and worked like a charm! As in…it took away all the pain, almost immediately. I am not sure what this pain is, but I suspect it has something to do with a bad lower back and being immobile for 7+hours. If I could “walk it off” it would help, but unfortunately I am too weak to walk during the infusions. All in all that first day was bearable, and the second was even easier (and much quicker).

Post chemo symptoms

I was physically sick on Thursday night, and very early on Friday, but that was that. The rest of the week post-infusion I felt generally crap and weak, and nauseous, but I wasn’t vomiting. It was Zac’s 8th birthday on Monday and Micole’s 17th on Wednesday, but unfortunately I wasn’t very present for either. I walked to Brooklyn Mall by Thursday (about 1km), and then made sure to walk as much as I could after that, although I was VERY weak and usually just ended up giving up half way. I do find that walking really helps. It’s almost as if the activity helps the toxins move through the muscles (where they would otherwise sit), and recovery is easier. I slept a lot, ate as much as I could and generally had a good month after that. (I even moved house!)

A rash…

A rash, very itchy!, on my arm

The one hiccup in the chemo regiment was that I developed a rash that was very, very itchy. I developed it three weeks after my second infusion, which the oncologist felt was a bit too late for it to be a consequence of the chemo (but not impossible). She recommended that I visit a dermatologist, which I did. He took a biopsy and it was determined that the rash is in fact a consequence of the chemo drugs, so there is not very much I can do about it (other than stop chemo, of course!). I vowed to scratch less (I looked horrid with all the scabs) and hoped it would go away soon. (Spoiler Alert: it went away and came back as something much much worse!)

6 rounds of chemo or 4?

As for whether I should have 6 rounds or four of the chemo: the literature clearly suggests that four rounds is just as effective as six, which gave me much hope. However, as my doc pointed out, we are not just trying to lower my IgM level..we are actually trying to get rid of the autoimmune haemolyitc anaemia and the CAD. And there isn’t much literature on that, lol. So, in her opinion, we should just be safe and do six (she says where they try to achieve a cure or remission, they give enough chemo sessions to achieve that, plus 2 more for safe measures). However, she did say I should have the Combs test done (last time I tested I was positive), and if it came back as negative we could discuss the option of shortening the chemo regiment. So we wait and see. We’ll know in March.

If you are specifically interested in my Waldenstrom journey, from diagnosis to the present day, then I suggest you view this page to see all the posts I have written about it, in chronological order.