Day -4 – Gone Neutropenic…   October 2nd, 2011

The duvet Linda mentioned in the previous post, combined with being untethered (no IV), and an Ambien, led to almost 12 hours of sleep, with just a few interruptions. I went to sleep just past 9pm last night, and woke up just past 9am. I did have a fever during the night, but Tylenol helped bring that under control for a while.

This morning when I woke up I had a fever again, and also learned that I had met the requirements for neutropenia – meaning a neutrophil count of less than 500 (based on a white blood cell count of 630).

My nurse calls me an over achiever. First I pee up a storm, and now I’ve gone neutropenic at least a couple of days ahead of schedule.

Because of the fever which is coming and going while neutropenic I’ve been put on a broad spectrum anti-biotic (since I have very little of my immune system left), as well as all sorts of other drugs designed to prevent fungal infections, cold sores, acid reflux, and all sorts of other things. I’ve been told that by the time I finish my treatment in eight days, I will have had more different prescription drugs during the treatment than I have had the entire part of my life until now (since I have no normal prescriptions otherwise).

I was light headed this morning, but figured at least part of that was due to lack of much food yesterday, so I’ve slowly been working to eat a bit more today, and it has helped.

At present, I am sitting in bed (hospital beds are pretty cool with all the different angles they support, but I wish they were a wee bit wider), taking in one of my first two units of blood for the day. Having such a blood transfusion is necessary because my hemoglobin (red blood cell related) counts are way down. I will likely have these blood transfusions every day or so while I’m neutropenic.

And that brings to mind something else. A lot of people have been asking Linda and myself what they could do for us and to let us know if we need anything. Many of you know that we are difficult people to help (and buy presents for) because if we need something we just go out and get it or take care of it pronto ourselves. And with the uncertainty of what my symptoms will be post-treatment (e.g. nausea, fatigue, loss of appetite), we can’t really plan ahead very well either. And it doesn’t help that I will be limited to a neutropenic diet, which means we can’t accept food gifts for three months, however much we’d want to.

But a practical thing that most of you can do for us, for yourselves, and for cancer patients around the world, is give blood and platelets. When I had my platelet infusion last week, for example, I received six units of platelets, given here at NIH the day prior by six different people. And the dozen and a half, or so, units of O-negative blood I am going to be receiving as part of my transfusion also come from individual donors (although not the day before, like platelets). In fact, Linda will be donating platelets tomorrow (you can normally only give blood or platelets every eight weeks, and Linda last gave blood exactly eight weeks ago at Mass General). Thank you Linda and Mona for this excellent suggestion!

Today’s course of treatment continues with my fourth dose of fludarabine tonight, and early tomorrow morning I get my first of six doses of full body radiation – two doses a day for three days. Unclear how I will be feeling after those. However, what is pretty clear is that my immune system will be down to zero in time for my TIL cell administration on Thursday, and that is awesome. Don’t want anything getting in the way of my melanoma fighting cells!

 

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This entry was posted on Sunday, October 2nd, 2011 at 14:18 and is filed under Health. You can follow any responses to this entry through the RSS 2.0 feed.Both comments and pings are currently closed.

4 Responses

October 2nd, 2011 at 18:42
Barbara Leary Says:

Thinking about you and sending daily wishes for success! Thanks for the updates!

October 2nd, 2011 at 22:18
LaDonna Says:

yep…..you are definiatly an overachiever…..just look at the name of this blog and count how many other blogs/jobs/titles you have!!!! you are just staying true to form :D so keep up the good work!!! Love you, Bro!!!

hugs!

October 3rd, 2011 at 10:33
Nathalie Says:

Hang in there Jake, Linda, Krystyana, and Bas. You are all in our positive thoughts. Your strength, fortitude, and humor continue to inspire.

To NED.

Nathalie, George, & Chris

October 3rd, 2011 at 21:02
Tracy Griffin Says:

Jake,
Sounds like all is going better than expected thus far. You may have inspired a needle fearing woman into donating blood for the first time in a very, very long time! We wish you well, and hope that radiation goes better than expected – and TIL begins on time. Go get those cancer cells!!! Happy thoughts to you, Linda and the kids!
Tracy & Mike