Day 13 – Packed and Ready To Go   October 19th, 2011

I managed to eat a whole thigh and drumstick’s worth of chicken from the rotisserie chicken we had last night. Could not eat the skin because it was too spicy, but still a major achievement.

It was a pretty decent night too – only one wake-up for vitals and blood draws. I slept pretty solidly from around 11:30pm to 8:30am this morning. Using Toothelle Mouth Moisturizer to lubricate my mouth before going to sleep was a key part of the better rest I got. It’s a new thing one of my nurses suggested, and I’m glad she did!

I woke to learn that my neutrophils and white blood count had continued to increase since yesterday (not much, but a bit, since I was now off the Neupogen booster shots). Other than a slight deficiency in my potassium and magnesium (cured with pills in the former case, and my final IV infusion for the latter), everything looked good, even with my platelets, which had naturally increased from 21,000 yesterday to 29,000 today. That means my body is starting to heal properly!

Shortly after the magnesium IV infusion ended, my doctor came in to remove my dual-lumen Hickman catheter port. She was unable to just pull it out as my body had already started to form scar tissue around the cuff that’s part of the tubing (and is supposed to let the body’s tissues form a tight, integrated seal, both to reduce the chance of infection as well as to provide additional security from accidental tugs). So I got injected with lidocaine, and she then used a scalpel to free the cuff. The actual removal of the plastic tubing was a non-event after that. The tubing looked shorter than I expect. Krystyana and Linda observed the whole process, but Bas averted his gaze – he’s not into blood or sharp things penetrating human skin. In any case I now have a small bandage covering the original port site, which I will be able to remove in a couple of days. And no more port!

The process, however minor, did tire me out, and I have a little bit of pain at the exit site when I move my arm in certain ways. That apparently frees me from heavy lifting with luggage tomorrow or any other sort of overexertion involving my right arm and upper body. Time for Bas to earn his keep, I think :-)

Our TIL friend Jamie and her husband Jeff swung by to say hi – Jamie was having her one-month scans done this afternoon to see how the TIL with IL-12 treatment she received worked. It’s still a bit early to see definitive results, but we know she will be NED before long!

I managed a low-carb protein shake for a late breakfast, and then for a late lunch, wandered down to one of the cafeterias here at the clinical center. I managed to put down most of a Salisbury steak (which I had the grill master throw back on the grill for me to ensure it was hot enough), and Vitamin Water Zero (which only had a bit of flavor, but was refreshing nonetheless).

After that I was exhausted, and napped with Bas for over an hour and a half. Good snuggles and a good nap.

The girls had gone to the lodge to pack themselves up so they could be ready to go tomorrow, and then came back to pack me up. I sure have a lot of crap stuff here! Fortunately we are flying back on Delta to Boston tomorrow, where Linda, Krystyana, and I all have elite status, which means at least two free bags up to 70 pounds each per person (the benefit rubs off on Bas too). We need it, apparently :-)

Dinner was a daring experience – Chinese Food. I kept it simple, yet experimental, with foods that should all qualify as neutropenic based on their recent cooking temperatures): Egg drop soup (went down pretty well, although a bit thick), Crab Rangoon (went down best with the sweet sauce), boneless spare-ribs (were a bit spicy on the tongue, and had no real flavor to me – needed the sweet sauce too), and fried dumplings (couldn’t manage the dough, but the meat blob on the inside went down well with the soy-based dipping sauce). I only had a small bit of everything, and noticed how off the flavors were from my expectations due to my tongue situation. I tried a bit of hoisin sauce that Linda got with her moo-shu dish – the hoisin had real hoisin flavor to me, but also was a bit too spicy on my tongue. It was good to be able to experiment a bit though, as well as eat more solid foods than I was able to manage only a few days ago. I expect what I can taste and eat will be expanding every few days as my body continues to heal and mend.

I will add that Jamie and Jeff dropped off some mini-cheesecakes. I was able to enjoy several bites of those before becoming full. In retrospect they were the best (and most flavorful) part of my meal, and I should have started with them!

My sleep tonight should be uninterrupted as I no longer need my vitals taken, and won’t have any blood drawn. That will be awesome!

And tomorrow – my destination is my steam shower in Boston (it’s not really a steam shower, per se, but the water it produces is strong and hot, and can steam up the whole bathroom easily)!

Good night all, and thank you for all your support and words of encouragement and love – they have definitely helped me through the last three challenging weeks here!

Virtual hugs to you all!

 

I write to you tonight from my private (for now) room at the National Cancer Institute (NCI) in Bethesda, Maryland. For those of you who follow this blog closely, you will understand that this means that when I signed the agreement to participate in the Melanoma TIL (Tumor Invading Lymphocytes) clinical trial here yesterday, I was randomized into the arm of the trial which adds Total Body Irradiation (TBI) to the base TIL treatment.

This is actually a good thing – even with the nasty side effects – because the use of TBI, based on anecdotal evidence, appears to contribute handily to improving the response to the TIL treatment. And, as it was confirmed this morning that the melanoma has now started to spread to my liver and my lungs (small tumors were spotted on the CT scan on Wednesday), I am pushing for every bit of help the TIL treatment can get in killing my melanoma. So TBI is most welcome as a part of my treatment.

The emblem of the surgical unit of the National Cancer Institute

The emblem of the surgical unit of the National Cancer Institute

A short while ago I received my first set of injections of a medication called G-CSF a.k.a. filgrastim a.k.a. Neupogen. The purpose of this medication is to stimulate the growth and release of stem cells into the bloodstream. The careful readers among you may notice that I referred to “injections” in the plural. As it turns out they can only inject a maximum of 2mL of filgrastim per injection site, and my dose is 2.8mL, so they split the dose in two, shot into opposite sides of my belly. I apparently will be getting two shots every 12 hours (at 7am and 7pm), instead of one larger one, for the next five days. Eek.

I guess I shouldn’t be surprised by having to be poked twice as often, as needles have been a big part of my week here in Bethesda. In counting the number of times I have been punctured in the last three days, I get to twelve. Only nine of those were successful. This includes the two belly injections tonight, two sets of drawn blood, three IVs, and two related to my leukapheresis. The puncture wounds on my arms alone make me look like a junky. But that should have changed with the small surgery I had this afternoon to install a double-lumen Hickman catheter (more on that later).

The feeder apheresis, also know as a leukapheresis, was pretty interesting. As described in my prior blog post, the idea was to remove blood flowing through one arm, filter it for the desired blood component, and put the remaining blood components back into my body in the other arm. And that’s pretty much how it worked yesterday morning. All in all, 15 liters of my blood (which is about 3-4 times my total blood volume) was run through the apheresis machine to produce almost a liter of mostly white blood cells. The process ran nearly four hours, and after the initial installations of the intake and outtake needles, was pretty painless.

My white blood cells after the leukapheresis

My white blood cells after the leukapheresis

The filtering process is actually a centrifuge which forces the components of my blood into separate layers, one of which is the white blood cell layer. It’s next to the red blood cell layer, which is why the above bag of white blood cells is reddish in color. The white blood cells will be further separated out in a lab, and then fed to the TIL cells being grown for me, since those cells will appreciate a “homey” environment (namely from my body).

Next Wednesday morning, all the stem cells being released into my body will be collected via a stem cell apheresis, but this time I won’t need to be punctured again. That’s because this afternoon I had a dual-lumen (two port) Hickman catheter installed into my jugular vein.

Diagram of a dual-lumen Hickman catheter

Diagram of a dual-lumen Hickman catheter

The doctor installing the catheter indicated it was 23cm (almost 10 inches) long. It starts in the middle right part of my chest, loops up over my right clavicle, and down again into the vein. At the end of the catheter (the part inside my body) are two openings about 1.5 cm apart, at right angles from each other. The catheter itself has two independent channels (lumen), one connected to each of the openings.

On the end of the catheter sticking out of my body are two ports which can take IVs, but more importantly, can also be used for my stem cell apheresis so I don’t have to be poked again for that (or future apheresis or any IVs other than for CT or MRI contrast injections).

The catheter is pretty uncomfortable tonight – a little bit of pain, plus a feeling like I bruised my neck muscle, but the doctor (and the nurses here) said I would get used to it in a couple of days. Good thing, since I need to continue to keep it in for at least three months.

I also had a dietician come visit me today to discuss my dietary needs and restrictions once I start my actual treatment of chemotherapy followed by the radiation and IL-2. And, even more importantly, the months after treatment where I will be recovering from the effects of the radiation. About half-way through my treatment, I will achieve a point where I am “neutropenic” – having little or no white blood cells with which to fight off any infections or illness, and that will require being extremely careful about what foods I eat (and whose hands I shake).

However, even as my white blood cells come back after the reintroduction of my stem cells, I’ve been told that I will need to maintain a neutropenic diet for about three months after treatment to avoid complications. This cuts a lot of fun and interesting food out of consideration for consumption, so perhaps I should take solace in the fact that I won’t have much of an appetite, as well reduced taste sensation, during my recovery.

An overview of the “can and cannot eat” items in a neutropenic diet can be found here.

After I return back to Boston on Friday or Saturday, I can only count on being there for between five and twelve days, and I’m betting on the lower end of that range based on how fast things have gone at NCI. Then I’ll be back in Bethesda, starting my treatment, and hopefully moving my way through the final step towards NED – No Evidence of Disease!