Day 12 – Happy, Happy Day!   October 18th, 2011

What a difference a day (and night) can make. My doctor came into my room early this morning to let me know that my neutrophil counts have soared to 6,960 from yesterday’s 1,960. As a result I was declared non-neutropenic, the warning signs were removed from my door, all my IV anti-biotics were stopped, and I’m down to a couple of pills a day. I will also no longer be getting the Neupogen shots, so my neutrophil counts will like drop a bit tomorrow, but will still be well above 1,000.

Also, my platelets are on the mend by my own body. I was at 20,000 yesterday, and 21,000 today. Still quite low, but improving on their own.

A little while later, during rounds, I was also informed I would be getting my Hickman port out, so I won’t have to deal with maintenance of the tubes in my chest anymore – because they won’t be there! I had expected to deal with them for another two months, but apparently they will no longer be necessary.

Talk about being surprised and elated!

I have also been scheduled to return for my first scan post-treatment on November 9th, so I will be flying in the day before with Linda and out on the 10th.

We fly home to Boston on Thursday afternoon. Tomorrow is a day of observation to make sure everything is still okay. It will also be a day of packing, as I have collected a lot of the comforts of home here – like towels, a bath mat, a duvet, collapsible notebook tables for use on beds, etc.

I also decided I need to get more protein and fat into my system, so instead of broths, I tackled a slice of pizza (managed to eat only the cheese, as the sauce was a bit too spicy for my mouth, the bits of sausage got too spicy over time, and the crust was too dry) and some reheated fajita beef (went down pretty well). The girls are out right now gathering a freshly roasted (to meet neutropenic diet requirements) chicken for us to share. I hope that goes down well too. And I started the day with a protein shake. So my food and caloric intake is improving, and I’m feeling more energetic for it.

Also, being non-neutropenic, I managed a nice couple hour nap this afternoon snuggling closely with Linda (who napped well too).

All in all, a wonderful day.

I’ve been told I can even have dinner off-campus with the family tomorrow night! So tomorrow should be a great day too (I will be getting my port out then as well, so perhaps a little bit of pain, but worth the reward of being free of alien parts in my body).

Yay!

 

Day 11 – Closer to Release   October 17th, 2011

My immune system continues to mend itself, thanks in part to nightly injections of filgrastim/Neupogen – the same drug administered to me to boost my white blood cell counts as part of my stem cell harvest. I have been getting these shots for over a week now. Nice to see they are finally making an impact.

My neutrophils are at a whopping 1960 (compared to yesterday’s 500), and my white blood cell counts are at 2700. Major increase in both, and these are based on 2am blood draws, undoubtably they are even higher now. Unless something goes awry, I will be discharged on Thursday or Friday, most likely (might be even sooner, but I’m not counting on it). Woohoo!

The other good news related to elevated neutrophil countsis that while I will still be more susceptible to germs and need to wear a face mask in confined places, I will no longer be neutropenic, meaning lots more real hugs from Linda and the kids (instead of the half-hugs we were settling for to avoid infection). Also, once I’m determined to officially be no longer neutropenic (three days of neutrophils above 1000 or one day above 5000), I will be taken off most the drugs I am still on, including the two IV antibiotics. Will make for more restful days.

It was otherwise a (good) boring day. I had extra infusions of magnesium and potassium, but nothing else extra. My platelets were at 20 as of this morning, so there is a likelihood of a platelet infusion tomorrow if it drops below with tomorrow morning’s early blood draw and analysis.

The girls spent the day out in DC, at the Newseum, with lunch next door at The Source. I was able to surprise them (under the masterful direction and help of our AMEX concierge goddess and friend, Tara) with special desserts on which the dessert chef wrote a message in chocolate telling them both how I loved them. Krystyana will have to share the pictures she took when she has a chance.

Bas spent the day with me, and we managed to get in three episodes from the first season of the sci-fi series Farscape (thanks to Amazon Prime Free TV), as well as another wonderful walk outside in the sun.

The dry mouth is still here but I find sores my mouth and tongue have started to heal, and indication that my system is slowly returning to some level of normalcy.

A good afternoon nap provided necessary balance, and I now find myself ready to be a day closer to heading back to Boston – a vision that is now finally within grasp.

 

Day 9 – Immune System Returning   October 15th, 2011

My hopes for a start to the recovery of my immune system have been fulfilled. Yesterday my white blood cell count was hovering between zero and 50 lymphocytes (4000-6000 is normal), and this morning I was at 130, and by evening up to 330.

I may or may not have any countable neutrophils, but with the WBC lymphocyte count increasing, I will start having them soon – tomorrow or Monday for sure. The neutrophils tend to be in proportion (70% or so) to the white blood cells (lymphocytes), but not necessarily when the numbers are small.

In order to be discharged I need to have three days in a row where my neutrophils number 1000 or more, or one day where they are 5000. And my platelet count needs to be steady above 20. I may be out as soon as Wednesday, but it could also be next Saturday, depending on how things go.

While I had a couple requisite naps, my energy levels were definitely a bit better today, and I even got to go outside (with sterile mask on) to enjoy a bit of the sunshine. Haven’t experienced any part of the outdoors in over two weeks at this point. I was pretty wiped out after both my slow walks with the girls (hence the naps).

After my afternoon blood work, I ended up with another 6 unites of platelets, as I was back down to 17,000 (from 23,000 this morning). And I was given magnesium via IV to compensate for a small deficiency earlier in the day.

I still am maintaining a mostly mild fever (99.0-100.6F/37.2-38.1C), which appears to not be unusual for someone who went through the TIL/TBI treatment (and is even considered a likely sign that the TIL are hard at work).

Several of you had asked question about broths and food in general with respect to my mouth dryness and soreness. I am finding I am having an easier time with warm liquids than with room temperature or cold. And thinner liquids create less of a mucous issue than creamy or thick ones. So clear broths with added material (meat protein, maybe some noodles) work pretty well as does warm tea (room temperature tea is not bearable). Solids outside the broths are not very good at this point because they get stuck in my mouth and require lots of water and gagging to get them down.

Linda had me try a thin butternut squash soup today, and I managed to get a fair bit down, but it was still too thick to do again in the next couple of days. We also experimented with apple juice. I couldn’t stand the bitterness and acidity of cold apple juice when I tried it this morning, but after Linda heated it up in a microwave, and it became more more palatable. Go figure.

The respiration department here at NIH also dropped off a new toy which might make sleep easier – it’s a vaporizer that uses oxygen to mist sterile water into a tube and attached mask. It’s very loud, but I have high hopes for it working tonight now that I understand how it works (although I think I look a little alien with the mask on). Would be great to maintain moisture in my mouth and nasal passages while I sleep.

I will leave you all with a webcam capture of the latest evolution of my Mr. Clean look. And no, no plans for any earrings (sorry Dara) :-)

Going for the Mr. Clean look, sans earring

Going for the Mr. Clean look, sans earring

 

The doctors here say that boring is good. Alas, today was not quite as boring as yesterday. It started with a low-grade fever at dawn (38.4C/101.4F), which resulted in my taking Tylenol as well as being put on an IV drip with an even stronger anti-biotic than I have already been getting.

When the morning doctor rounds took place, I was informed that my platelets were at a very low 9,000 per cubic millimeter (normal is 140,000 and higher), exposing me to potential problems with respect to bleeding. Considering that I had bloody sinuses during the night, this was a bit scary. I was also told that there was still no measurable sign of any neutrophils in my blood. Maybe tomorrow?

I was given five units of platelets, and stayed on my IV most the of the morning. Getting another CBC (complete blood culture) this afternoon showed that the platelet infusion has bumped me up to 17,000. Much better but not great. So I’m getting another five units right now as I write this.

The fever has been gone since this morning fortunately, and I had a pretty good afternoon. I even had Linda take me out for a slow 15-minute walk around the clinic. Pretty tiring but it felt good to be moving. The rest of the afternoon was a nap-fest all around. I am coming to appreciate naps more than ever before. Naps are good!

The dry mouth is still a plague, although I have found that I can manage chicken and beef broths as my main forms of sustenance – they are among the least difficult foods to process as they minimize stringy mucous build-up, and cause the least mouth pain. I even managed to get some minced, steamed (over 165F because of my neutropenia) roast beef into me last night via the beef broth, which made my body happy (protein!). Warm herbal teas – blueberry and raspberry – are good too. And Hall’s Sugar Free Citrus Drops are helping a bit too.

I’m also coming to grips with the stubble on my head and face. The lightly-adhesive lint roller is coming in handy, but I still keep having tiny stubble hairs come off in my hands, shirt, pillow, etc. I will be glad when all the stubble is gone, so I can have a real Mr. Clean look, shiny head and all. I like that comparison (thanks Sam!) better than the Telly Savalas or Yul Brunner look.

I’m hoping for no fever overnight and the start of measurable neutrophils in the morning, as that would indicate my body is finally starting to make progress after the necessary destruction to my immune system caused by the chemotherapy and radiation.

Linda and the kids have been wonderful to have around to give me comfort, support, germ free hugs, and ruffles. I have no idea how someone without such a support network would handle this process. So, again, thank you Linda, Krystyana, and Bas. I love you all!

 

From Linda…

Today was more of the same but a little less of this and that. They stopped two medications and gave Jake just one batch of platelets, so Jake’s day was more untethered than tethered.

The helpful hint of using a sticky tape roller-style lint remover to get the hair stubble that is still falling out worked wonders – Thanks Mare! And did I mention it is fun too in a silly kind of way. Almost as much fun and making a Mohawk – watch out Bas.

The doctors stopped by in their usual group to see how Jake was doing. They were happy to hear “nothing new, nothing exciting”. At this stage of the game, boring is good. We took Jake for a stroll in the hospital. We played Yahtzee and Crowns. We rubbed Jake’s back and snuggled close to encourage him to eat his chicken noodle soup.

The next change will be the reappearance of neutrophils in Jake’s blood sometime in the next several days as his immune system starts to come back on-line.

 

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!

 

This morning I had an appointment with the oncological nurse practitioner who specializes in Interferon immunotherapy treatment for melanoma.

After she looked at my blood work, I was told my liver function was spot on, but that my white blood cell and platelet counts were extremely low, at 1,900 cells per cubic milliliter (cmm) of blood.

For reference, two weeks ago I was at 2,600 cells per cmm, while the normal healthy range is between 4,500-11,000. Likewise, my platelet count was down to 72,000 per cubic milliliter, down from 117,000 two weeks ago, with a healthy range being 150,000-400,000.

The nurse indicated my white blood cell counts were in fact now so low that I needed to be very careful about exposure to any infectious agents in the next few days, because it would be difficult for me to fight off infection in my weakened state. Also, to allow my body to stabilize, I also needed to suspend use of the Sylatron for a week or so to see if my counts recovered, and if they did (and she had all expectations that they would), shifting me to the lower maintenance dose of Sylatron of 3 μg/kg at that time to avoid a repeat of this situation. There is no indication that the reduction of the dosage earlier than anticipated will negatively impact the effect of the treatment, which is a relief.

So, no Sylatron for me tomorrow.

I will have new blood tests in just over a week when I return from New York City, where we will be dropping Krystyana off at the JFK airport for a trip she’s taking with National Geographic Student Expeditions to Italy and Greece for a couple of weeks.

You may be like I was, wondering how immunotherapy treatment would result in a more vulnerable immune system. Apparently the immunotherapy drug acts as a kick-start for the body to fight against the melanoma cancer cells, but also strikes a balance in the system, reducing white blood cell counts, among other things. The remaining white bloods cells should still sufficient to tackle the cancer cells (or so it appears to be), as long as there aren’t other problems, and suspending treatment for a week is generally sufficient for the body to get counts back closer to normal.

I was told that suspending use of the immunotherapy drug with a later downward adjustment in dosage was at not unusual, and that this is typical in a majority of patients during the interferon induction phase. Nor are my symptoms in any way unusual. Learning this was comforting. I also took additional comfort that with postponing my next dose I might actually have a bit more of my appetite come back, just in time for our jaunt to New York City and some of the fine dining we are planning on doing there.

More on Mutations

The meeting this morning was also educational in that I learned that while the genetic analysis of my melanoma indicated I had an NRAS gene mutation (see my prior blog post), that was not necessarily a negative thing. As I had written, the more common BRAF mutation is what is being targeted by some of the new melanoma drugs, but I was told that BRAF mutations actually carry a much higher risk of both relapse and aggressive spread of melanoma, relative to NRAS mutations. So while BRAF mutations have the targeted drugs and NRAS don’t, it’s probably because the BRAF mutations need it more. Further, these genetically-oriented treatments are more palliative (treating the symptoms and side effects) in nature than they are curative. So, I guess, a bit of a silver lining in my genetic mutation leading to my melanoma cancer.

Scans Coming Up, Radiation Too

The other result of the morning meeting was that I am now scheduled for full scans in about two weeks. These scans will be merely a snapshot and benchmark, and are expected to be clean, as all such scans could show are sizable tumors, and not any microscopic “seeds” of melanoma that might still be in me. I will also be starting my radiation consultations at the same time, which will ultimately lead to a simulation-generation scan, and then radiation treatment. I may also end up staying on the Sylatron during radiation now, but that is only a thought, not definite.

A Bit More On Talking About Cancer

Some discussion ensued about my “Cancer Sucks” t-shirts after my last post, leading to the idea that I and my fellow melanoma patients are really “Melanoma Warriors”. So, my next quest is to get some t-shirts made up with “Melanoma Warrior” on them. If any of you has a good source for low-volume, high quality t-shirts printed with block letters, let me know.

More from me later as my situation evolves.