Day 5 – Off With the Hair   October 11th, 2011

I kept hoping I would be among the 1% of chemotherapy patients who wouldn’t suffer hair loss, but this morning as I scratched my head upon waking up, I managed to pull a clump of hair out. So put me on the 99% side of the hair loss column.

Pulling hair out of my head led me to figure out what other hair will fall out too, and some careful exploration suggests I will retain my arm and leg hair, I may keep my eyebrows and some of my already meager chest hair, but everything else is going.

My nurse this morning mentioned that a recent female chemo patient wore a shirt that said “Chemotherapy Gave Me the Best Brazilian” (I hope I don’t have to explain that further, but if I do, it refers to wax, hair removal, and pain in sensitive regions). It put a smile on my face.

Instead of having clumps of hair falling out all over the place, I decided to take some decisive action, and have Linda shave my head for me – that will only leave stubble to fall out in the coming days.

Linda starts shaving Jake's head

Linda starts shaving Jake's head

In the above image, and the subsequent ones, you may notice a dark mark under my right eye. That’s apparently a burst capillary from a coughing fit I had a few nights back. It is not the result of anyone beating me.

The first step in the head shave was to achieve equilibrium, in the form of a mohawk, as pictured below:

The interim phase of the head shave - a mohawk

The interim phase of the head shave - a mohawk

After that it was a matter of simply shaving off everything that was guaranteed to be falling out anyhow, including my mustache and beard – facial features my kids have never seen me without. Krystyana was cool with that (all these photos are hers), but Bas was a little creeped out.

The final result is below, taken while I was in bed getting yet another blood transfusion (after getting platelets this morning).

Jake with a baldish head while getting his latest blood transfusion

Jake with a baldish head while getting his latest blood transfusion

A couple of things I have discovered with my new-nearly bald head: First, my head gets cold quickly. Linda got me a skull cap a few weeks ago, and that is helping. I also bought myself a monkey head cap (like little kids might wear in winter) at a state fair several weeks ago for when I need to amuse myself. I also have a baseball hat, and a good friend is knitting me another cap.

Second, I now find myself baffled by whether I should use shampoo or soap on my head. I stuck with shampoo this morning only because it was the comfortable, safe option (plus it’s Baby Shampoo, so no tears). But if any of you who are bald or have gone through chemo have input, it would be appreciated.

My understanding is that over the coming few days all my stubble will be falling out. One friend suggested (coming from her friend who had undergone chemo herself) that one of those lint remover rollers that uses light adhesive tape might be a good way to assist the process. Linda and Krystyana are out exploring, so hopefully they will bring one back so we can experiment.

Other than the hair loss excitement today, it’s a pretty routine day: Platelets, blood transfusions, lots of drugs, rest, and struggling with dry mouth. One interesting (although obvious) note: if you get a nose bleed when your platelet counts are down (I was at 13000 today) the bleeding doesn’t stop very easily. I’ve been told my blood counts should start showing a slow increase in a few days, and as with everything, it’s only a matter of time.

While I try to express my thanks privately, I want to give many public thanks to my awesome family caregivers – Linda, Bas, and Krystyana – and to the excellent nursing staff here at the clinic.

 

Day 3 – Slow Recovery   October 9th, 2011

After Linda and the kids left last night, my plans for a restful night kind of came to a close with the introduction of a high fever and chills. The fever lasted most of the night and finally broke this morning. I kept telling myself that fever was a sign of the on-going battle of TIL vs. evil cancer cells, so in a way it was a good thing. And my doctors later confirmed that probably was the cause too.

However, it should be noted that the TIL attack is something that goes on for weeks, and it’s generally not clear until the second of post-treatment scans (which would be early December) of how well the treatment works. So feeling tumors from the outside to see if they have gotten smaller is something of a pointless exercise, at least this soon after the TIL was administered.

From the comments that Linda’s post received yesterday it might not have been clear that the 5kg of water weight I needed to drop was to ensure proper organ function, as much of that weight was in my organs (such as my lungs), and not any sort of vanity. I’m close to half-way there, and my lung capacity seems to reflect that.

The other side-effect of treatment that has been increasingly frustrating is that I have “dry mouth“, meaning that my salivary glands simply don’t turn on. So, to eat most things that don’t have a thin gravy of their own, I have to keep my mouth lubricated with water in between bites, and sometimes combine the two. That turns something like a protein bar into mushy cereal – not a great texture sensation.

A related symptom of this whole dry mouth situation is that my ability to taste has gotten terribly screwed up. Certain foods have no flavor (like Chef Boyardee single-pack macaroni and cheese – though Linda says it doesn’t have much flavor to start with), foods that should have quite a bit of flavor (Chef Boyardee single-pack Beef-a-Roni) are bland, while for other foods, even a few flakes of black pepper can make the dish inedible. I can taste sweetness to some extent though, so I’m thinking once I’m back in Boston I may have to work my way through Ben & Jerry’s collection if it looks like ice cream is edible to me.

I also learned that the carbonation from carbonated beverages is actually painful to my mouth.

I have some various dry mouth rinses, gels, and sprays – all of which work, but only temporarily, and being a mouth breather, things get dried out pretty quickly.

Hopefully my salivary system and tongue will heal up soon enough (it could be months) and I can start enjoying food again as opposed to having it be a torturous necessity for survival.

Perhaps I should be glad that this is the only side-effect from treatment that has clearly manifested itself, as I’ve had virtually no nausea (although in part that could be contributed to by the thrice daily infusions I get of Zofran), and while my energy levels are low (lots of naps), I don’t seem to actually be suffering from extreme fatigue (again, knock on wood). This may still change, but I’m hoping it doesn’t.

Today has been mostly spent connected to my IV drip system, first getting potassium phosphate to replenish my electrolytes (a four hour drip), then followed by two units of blood (two hours each – just finishing my second unit now) to boost my hemocrit and hemoglobin counts. I may also get more platelets tomorrow.

The family was with me most of the day, and during the points I wasn’t napping we took advantage of the rather decent WiFi connection here to watch a couple of streaming TV shows from Amazon (and yes, I have an Amazon Fire on order :-) ).

They (the nurses here) expect I will be under their care for another ten days or so, so my immune system can get built up enough that I can safely (with face mask on) travel back to Boston for a couple of weeks before coming back down for my first post-treatment scans in early November.

One ambling day at a time…

 

My neutropenia continues. I’m down to an absolute count of 54 neutrophils per cubic millimeter of blood, and at this rate I without doubt will be down to as close to zero as is humanly possible before my TIL cells get administered on Thursday.

Until then I’ll be getting a whole bunch of full body radiation. I went through my first rounds today – the first around 8am and the next around 2:30pm. A similar schedule will continue tomorrow and Wednesday.

Having also just had my last dose of fludarabine administered about an hour ago, I am now officially done with the application of chemotherapy and am moving on to deal with the side effects.

My energy levels are pretty darn good, and I’ve not had nausea (everyone, please find wood to knock on!). And my sporadic fevers appear to be dissipating.

I have been told that having Linda take me for daily walks around the amazing Hatfield Center I’m in here at NIH has been very helpful for both the energy levels and the fevers, although I have to wander around with a face mask (required because of my neutrapenia) and gloves (additional paranoid measure on my part). However, in that costume people rapidly make way for you if you generate fluid sounding hacking noise. People are pretty funny in how they respond to someone in a face mask.

I have also had some light-headedness today, but I’m told that the Adavan I’ve been told to take before radiation is the cause.

So, all that’s the good news.

Less pleasant effects are appearing however, including intestinal distress (requiring three Imodium-equivalent loperamide tablets, to, um, stem the flow) and bowels which are trying communicate audibly in a language I have yet to parse (I think it’s a dialect of Wookiee).

I have also developed a fair bit of pain at the base of my jaw, on both sides. Makes chewing painful, and the outside of the jaw is rather tender.

And from a continued oral perspective, I now also find myself with salivary glands that don’t really produce any saliva except for some thick mucus, sometimes. So, at times, when I try to eat anything my mouth gets all gummed up. I need to keep moistening and loosening things up in my mouth with lots of liquid – water seems to work best, flavored drinks and carbonated ones the worst). At other time with dry mouth, eating anything without its own liquid (like the protein bar I am masticating now) is like chewing on sawdust. Ugh. And if you don’t hydrate the food in your mouth, you could choke on it. Death by dry cracker. Not a pretty way to go, I’m sure.

The source of these side effects would tend to lean towards the chemotherapy – still messing with my system residually, as the radiation has only just started. None of the doctors have been able to pinpoint the actual source so far, and past consults have indicated that both chemotherapy and radiation can contribute to dry mouth and jaw problems, as well as diarrhea.

It is becoming clear to me that it is not for me to point fingers at a particular treatment component to find blame for the individual side effect, but instead just accept these side-effects as they come along and find the best way to deal with them, and hope they go away soon.

The only thing that appears 99% certain is within two week I will have at least lost the hair on top of my head, but as one of my nurses points out regularly: “Jake – with you nothing is predictable.”

Let me close with a quote out of a fortune cookie Bas got last night: “When you have no choice, mobilize the spirit of courage.” How apropos, eh?

So onward to tomorrow’s unpredictability with the spirit of courage…

 

Day -5   October 1st, 2011

From Linda…

Jake had his second and final dose of Cytoxan last night. He was a very weary “Urinator” that greeted us this morning. He was still dealing with chills and a small fever that responds well to Tylenol but was battling a queasy stomach all day. The wonderful team of nurses kept a watchful eye on him. The mandatory pee schedule ended at 7:30pm tonight so he is looking forward to longer stretches of sleep tonight. Although he was greatly disappointed to find out he would have to use the plastic urinal to pee in for the entire rest of his stay so they could track is output.

Jake voiced his growing displeasure with the cotton blankets he had piled high on his hospital bed. So Krystyana and I hopped on the Metro bound for “Bed Bath and Beyond” at the Chinatown station in DC to buy Jake a comfy, homey duvet to combat his chills. Bas kept Jake company while we braved the cold rainy day.

Tonight, Jake was “untethered” as he put it, meaning he will not be attached to an IV tonight. He was quite tired so we left him to rest early at 8pm. We shall imagine him snuggled down in his duvet. Just having the duvet put a small smile on his face.

Tomorrow is a brief day of rest between treatments. He will continue his course of Fludarabine tomorrow with radiation starting first thing on Monday morning.

 

Day -6 Towards TIL For My Melanoma   September 30th, 2011

Day -6 Towards TIL

I guess no one made clear to me that I was supposed to be suffering from nausea the morning after my first dose of Cytoxan. When I greeted the doctors on rounds this morning all cheery and upbeat they wondered if it had been administered. Apparently my lack of nausea is something of an anomaly – I prefer to think of it as me being special.

The last 24 hours have been spent peeing and peeing and peeing. I think I’m pretty close to 12 liters of urine output at this point, and I still have another 23.5 hours to go of urine madness. I am required to pee into a “urinal” (not the men’s room kind) – it’s a plastic jug with a handle, and it’s got measures on the side so that the nurses can verify I am meeting my minimum quota of 312 mL per two hour measurement period. I have far exceeded that. In fact, one of my nurses has commented that if I were one of the X-Men super heroes, I would undoubtedly be known as “The Urinator”. Beware his toxic yellow streams!

The issue with peeing this frequently (at times every 15 minutes due to the application of a drug called Lasix (also known as Furosemide) is that you don’t get much sleep, so my biggest side effect from the first 24 hours of my condensed chemotherapy is being really tired. I also had a headache and a small fever which both seem to have gone away after the application of Tylenol.

Linda and the kids kept me company for most of the day, which was very comforting.

As I write this, I’m getting my second dose of Cytoxan. I’m knocking on wood and hoping that nausea and diarrhea don’t follow since I’ve avoided them so far.

I’ve managed to catch a half hour of sleep here and there and that’s helped. Knowing I only have another 23.5 hours of pee madness ahead of me provides me a goal to work towards. And tomorrow night I get untethered from my IV after my dose of Fludarabine, so I can have a night of unencumbered sleep.

 

The Start   September 29th, 2011

From Linda…

The day began early at 8am with a CT scan to measure and check the growth of his tumors. At this point, they told us that the target start time for chemo would be 4pm.

The powers that be decided a MRI would be a good followup to get a more exact measure and Jake was on call for a time slot. About 2pm we got the COA or Certificate of Approval that Jake T cells in the lab were a 100% go for the start. Yeah! Woohoo! Yippee! This meant that the pharmacy could start making Jake’s personal chemo cocktail.

Jake arrived for his MRI at 3pm to be told it had broken down, but they got it up and running to get him in by 4pm and out about 5pm. Finally, we were just waiting for the chemo.  At 7:30pm, Jake officially began the chemotherapy portion of his treatment. Treatment has begun!

A toast to N.E.D.

and a mantra from the chaplain

 

All will be well
And
All will be well
And
All manner of things
Will be well

 

Chemotherapy Starts Tomorrow   September 28th, 2011

Today ended up being a quiet day that I managed to spend almost entirely with Linda and my children. Due to the on-going growth of my tumors in at least my right thigh (I have several that are now palpable (feelable), but were not two weeks ago), I was scheduled for a new CT scan to provide a better reference point for the post-treatment CT scan.

I’m pleased by the idea of getting a reference scan right before treatment because it will show more clearly how much tumor shrinkage has occurred due to treatment when compared to my first post-treatment scan in month and a half or so. If the scan from two weeks ago were to be used for this comparison, the tumor shrinkage amount would be skewed by the intervening new growth, and I would have to wait for the second post-treatment scan for more accurate results.

Anyhow, they ended up not having an available slot for a scan today, so I’ll be doing that early tomorrow morning instead, hence some extra hours with the family, in which we ran some necessary errands and enjoyed a nice meal out together – the last one for quite some weeks.

My treatment schedule in chart form - Day -7 is Thursday, Sept. 29, 2011

My treatment schedule in chart form - Day -7 is Thursday, Sept. 29, 2011

Tonight at 1am I start getting hydrated by IV in preparation for the start of my chemotherapy tomorrow.

During the day tomorrow I will receive my first of two doses of Cyclophosphamide (Cytoxan), a toxic chemical designed to  stop cell growth. It is toxic enough, I understand, that the nurses who bring in the one hour IV drip bag do so in a haz-mat suit to avoid exposure (since they have to administer the drug frequently). I hope to remember to take a picture of that.

I will get a second dose of Cytoxan on Friday. I will also start a five day course of Fludarabine tomorrow.

During the first three days of the chemotherapy I will be required to urinate (pee, piddle, wee wee, wizz, tinkle, etc.) every two hours, around the clock, in order to prevent Cytoxan-tainted urine from sitting in my bladder for long periods of time and causing bladder damage, and will also receive Mesna, a medicine intended to prevent the bladder from being irritated by such frequent use.

I understand, in addition to the other side effects from the drug (including major nausea), that being constantly woken up and urged to pee is one of the most exhausting parts of the treatment (the other being the IL-2 which comes at the end). Fortunately, I’m a peeing machine, so I should be up to the challenge. I should add that I will be heavily hydrated to ensure there’s enough liquid in my body to produce results every two hours.

I am guessing, based on what I’ve heard and read (and related above), Linda will be posting updates here instead of me until I’ve been off the Cytoxan for at least a couple of days.

Most patients appear to better deal with the Fludarabine which continues to be given for three days after the Cytoxan.

We’ll see.

 

Tuesday: Starting with a restless and mostly sleepless night, I arrived in Bethesda around the middle of the day, and checked in my room in the 3NW immunotherapy wing of the Hatfield Building, greeting all the fabulous nurses I have come to know from my prior stay. After unpacking, I had a chest X-Ray, an EKG, and blood work done. All look good!

My platelets, which had dropped to a level of 30 last week were up to a healthy 130, which resulted in a high five with the doctor as we celebrated, albeit breifly, that my blood counts were good enough to allow for the protocol to proceed unimpeded.

Linda and kids were here by late afternoon and settled into the adjacent Safra Lodge, which is quite a nice place. The Lodge is on the NIH campus, same as NCI, and has great facilities for families whose loved ones are being treated only a few hundred yards away. The rooms themselves are like regular hotel rooms, but there’s a huge shared kitchen area for the storage of food, cooking supplies, and leftovers, and there are a number of nooks which provide quiet space for stressed out family members, and in our case places our kids can work on school stuff.

Best of all, the Lodge is free – which is important in an area where the average hotel room night tends to run around $250/night. As one might imagine, the Lodge is quite heavily booked – up to two weeks in advance, so Linda and the kids will need to move to a regular hotel on October 2nd for four nights before moving back to the Lodge, unless those dates happen to free up for them. They are back until at least October 20th, my projected departure date.

I had expected Wednesday to be the start of chemotherapy, but that appears to be actually Thursday.

Instead, Wednesday provides a buffer day in case there’s a need for additional scans or labs, which will be determined after rounds in the morning.

We will have more details on the actual treatment process later today, probably.

Also, Linda has been set up with an account on this blog, and may post in my stead should I be feeling unwell enough to post on my own.

 

If you have a short attention span, here’s the big news: My Tumor Infiltrating Lymphocyte (TIL) with Total Body Irradiation (TBI) treatment starts next week, on Tuesday, September 27th.

The long version, including historical information, follows below.

My week at the National Cancer Institute (NCI) has gone quickly, but not without some complications.

On Wednesday, I got my scheduled stem cell apheresis, this time through my newly installed Hickman catheter. It was wonderful to not have to get stabbed again with needles for this process, especially as the bruising I incurred last week for the feeder apheresis are in full bloom with all sorts of color.

But the stem cell apheresis on Wednesday was pretty tiring too. As I later found out, part of this was because the process caused my magnesium, potassium, and platelet counts to drop significantly. Contributing to this was that this apheresis also required that 30 liters of my blood (about five time the blood supply in my entire body) to be fed through the centrifuge over a six hour period.

I spent the rest of the day resting and dealing with a related headache, under the assumption that all had gone well with the stem cell apheresis. However, at midnight, deep into Ambien-assisted slumber, I got woken up and was informed that they did not manage to collect enough stem cells (the minimum required by the protocol is 4 million, but 5 million is more ideal), and that I would need to go through the process again on Thursday morning. No further details were available, but I was given another pair of Filgrastim shots, and put on an IV with potassium chloride to help boost my electrolytes (and potassium levels).

So, yesterday morning I found myself in the apheresis center again, for another 30 liters of blood processing. Turns out that the first day produced 2.6 million stem cells, so not a complete failure. Fortunately, yesterday’s collection produced another 2.04 million stem cells, for a total of 4.64 million cells, sufficient not to require additional vampiration (and delay treatment). Because of the unexpected second day of apheresis, I also had to rearrange appointments with doctors from radiation oncology and from the dental clinic. In each case the doctors advised me on the side effects of the radiation treatment (which are potentially significant). But other then sterility and an increased chance of early cataracts, only these effects are generally transient (but could last for many miserable months).

I fortunately had also learned first hand about this from a couple where the husband had finished treatment about two months ago – they learned about be from Melanoma Mom Jamie’s blog, and were wonderful enough to look me up at NCI to see if they could help with any questions I had about the process. Thank you so much Pam and Joe!
In any case, the anecdotal evidence suggests that the aftermath of TBI is well worth it in terms of increased probability of response to the treatment. The amount of response benefit is actually what this clinical trial is designed to help define.

Yesterday, I was also told that I had excellent teeth and dental health. I think that was the high point of my day. The day ended with more potassium infusions, and six units of platelets, both of which helped my blood counts creep towards normality.

I wrapped up my stay this morning with a simulation scan to prepare for my full body radiation treatment (which goes on twice a day for three days, starting October 3rd).

The end result was that I now have a bunch of lines on me, drawn with a permanent marker (fortunately not really permanent), with the critical markings covered by waterproof tape. The lines will be used to align my body with respect to the photonic radiation emission equipment. By the time I’m done with the three days of radiation, my body will have absorbed 12 Grays of radiation, and my lungs only 6 Grays. The Gray is a unit of measure that relates to “rads”. It is a significant dose for full body exposure, but small compared to localized radiation.

As I already indicated in the abbreviated version of this blog above, I learned that I have been scheduled to return to Bethesda on Tuesday, September 27th – so a mere four days from now. The first day will be spent getting me all set up, and I start my five day course of chemotherapy on the next day, followed immediately by the three days of radiation.

Again, the whole purpose of these two components of the overall treatment is to kill my immune system as well as the cell generation in my bone marrow. The idea is that the resulting environment (no immune system) gives the TIL the best possible chance to do its thing – namely kill all those nasty melanoma cancer cells that are still intent on spreading throughout my body, without interference from my own normal immune system.

After the TIL cells are administered, the stem cells will be administered, then I get the mind numbing IL-2 treatment to boost the power of my TIL and stem cells, and then there’s recovery…

I will stay at NCI until it is deemed safe for me to be exposed to much of the world, namely when my immune system has recovered enough to ensure that I will no longer be in danger of infection from the most minor germ. Right now, my return date to Boston, as a bald, easily nauseated, and very tired person, is scheduled to be October 20th, but that date is subject to change based on my recovery, and the on-going entropy that is part of my life these days.

I want to extend a very special thanks to Jamie and Jeff for letting me be part of their nightly take-out dinners during my stay at NCI. Thank you both for your friendship and hospitality.

The few days I have in Boston (I am en route now) are going to be spent with family. In fact, my parents flew in from the Czech Republic yesterday – the original plan being that we’d be spending a couple weeks together. However, the melanoma train stops for no one, so we’re down to only a few days together. But that’s okay, because my train’s destination is NED – No Evidence of Disease. And a pig roast at our house in Bonaire in the spring!

Note: I want to mention to those folks who have been depending on e-mails from me for notification of new blog entries, I will no longer be sending out those e-mails during treatment. And I will not be posting notification on Facebook or Google+ either. My upcoming posts, throughout treatment, if I can manage them, will be a lot more succinct than my usual posts, and to see them you will have to remember to check back here at http://www.jakestake.tv every so often to see what’s new.