Cancer Treatments Change When Biology Dictates   July 12th, 2011

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.

 

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This entry was posted on Tuesday, July 12th, 2011 at 15:47 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.

17 Responses

July 12th, 2011 at 16:02
Ford Says:

Jake, thanks for the update — the Melanoma Warriors moniker sounds good.

July 12th, 2011 at 16:09
Hannah Says:

Thanks for keeping us up to date. Awareness is critical in these situations. Enjoy NYC.

And I do have a source locally for great t-shirts, low volume, and organic or recycled. They are great to deal with.

July 12th, 2011 at 16:14
Jenna Says:

For making tshirts, Cafe Press is the most popular though Zazzle has a pretty hard-core following. And, both sites are easy to navigate for creating stuff and selling stuff.

I adore Melanoma Warriors. That’s awesome. But, make sure you also design some for those of us supporting the Melanoma Warriors…like Melanoma Warriors and then in small letters (or on the back) Support Staff (I don’t know why that popped into my head; I’ve obviously been working in the legal field too long.) But, you get the idea. I bet Linda would have a FAR better phrasing idea. I think you should ask her to do the support t-shirt.

Anyways, whatever you create, if you do have Zazzle or Cafe Press host it, you could always donate the proceeds to your favorite Melanoma charity…just an idea.

July 12th, 2011 at 16:16
Judi Says:

Hang in there Jake. You’re giving us all a real education on cancer. Sorry it has to be at your expense. Want to see you home again in Bonaire soon!

July 12th, 2011 at 16:18
Judi Says:

Hang in there Jake. You’re giving us all a real education in cancer. Wish it wasn’t at your expense. Want to see you again in Bonaire real soon!

July 12th, 2011 at 16:21
Mary H. Says:

As always, thanks for the in-depth coverage. I love the term “warrior” – it’s a battle but you will prevail!

July 12th, 2011 at 16:32
Steven Says:

As always, you’re an inspiration man.

July 12th, 2011 at 16:54
Liz Says:

Jake,

Love the “Warrior” concept…can you imagine what my tee would say (anal cancer…lol). My girlfriend Nadine did all the tees for DEMA, etc for Bonaire (from the US) so she may be able to get you in touch with a good tee shirt distributor. I’ll ask her.

FYI, your symptoms are very similar to chemo, my platelets were down to 15,000 when I required a transfusion. With both rounds of chemo, I ended up in the hospital, requiring packed RBCs because my hemoglobin was so low. My WBCs and RBCs are still low, but not dangerously, like you I have to be careful of where I go and when. I had to forego being with family because my niece and nephew had an “intestinal bug”, even the smallest “bug” can be dangerous for us. You also need to watch and not eat raw fruits and veggies (this was very hard for me as I love them) with neutropenia aka leukopenia (low white neutrophils or white blood cells), as even after washing they can contain bacteria (more on the Livestong website). Also, did they tell you if you run a fever of over 100.5, you need to get to a doc/hospital, to avoid neutropenic fever or it turning into sepsis, which is dangerous!

Also, Ed being Italian and me French descent, we like you are “foodies”. The loss of appetite and enjoyment of food was difficult. I found that “grazing” helped a lot. I don’t have meals per se, but have what I want to eat every couple hours or so. I start at breakfast, 1 egg, 2 hours later greek yogurt, 2 hours later won ton soup, 2 hours later carolina bbq pulled pork, and so on. Also, and don’t know if it will happen to you, but was a side effect on my chemo, was my taste buds were shot and things just didn’t taste the same. For a while black pepper was to spicy for me and sugar was never sweet enough. Pretty much everything has returned, but my ability to enjoy a good glass of wine..hopefully that will come back soon, and I hope this is side effect does not hold true for you. Enjoy NYC and all the wonderful eateries. Order what you want, enjoy what you can eat, and bring the rest home for later…..

July 12th, 2011 at 17:48
Mercy Says:

Several yrs ago, I ran into a lady on the flyaway bus to LAX. I was telling her about a situation I was in and said, I’ll be ok, I’m a survivor. She told me to never call myself a survivor, or I will be setting myself up to always have to survive something. She said, “Call yourself a warrior!’ So, I totally approve of where you’re going with that moniker Jake!

July 12th, 2011 at 18:02
Cynde Says:

Jake, thanks for the update. I’m sure you will be careful on your trip to limit exposure to any infectious agents that other travelers may have….I also have a good contact for inexpensive tshirts. We use them for our Nordic Tug Vous’ shirts. Let me know if you want the information.

Hugs and love,
Cynde

July 13th, 2011 at 05:47
Jarmila Richter Says:

Jake, I find what Liz has to say very valuable. Professional consultations are one thing, but sharing what to expect even in the small life matters, helps getting through the day.

Love, mom.

July 13th, 2011 at 10:13
andrea Says:

J is right there with you! He was post-poned for two weeks, but finally got a treatment last night which of course lead to high temps and body aches. Anyways…You might want to look up studies concerning interferon and relationship to dropping WBC. Studies have also shown in people who are undergoing sylatron treatment, and their wbc drops…they seem to have less recurrance…another silver lining…but in this state of life, we will take any good news we can get!!

July 13th, 2011 at 10:27
Tish Says:

Cynde is right on: Take care in NYC, but enjoy. Lots of good news in your post. Many hugs!
Tish

July 15th, 2011 at 11:36
Judy Workman Says:

My thoughts and prayers are still with you Jake! Enjoy what NYC can give you :)

July 15th, 2011 at 14:20
Jake Richter Says:

We are working on trying a “Melanoma Warrior” design via CafePress.com. If the shirt quality comes back okay, we’ll be taking on Jenna’s suggestion for a Melanoma Warrior on-line shop, the profits from which will go to Mass General’s Melanoma Research Fund. Thank you for all the input!

Liz – you’re spot on for what I was told about the 100.5 fever. Knock on wood, so far so good. Just lots of extra naps the last few days. And acupuncture this afternoon for the first time.

Andrea – fully agree – we’ll also take any good news (or suggestions of it) we can get :-)

Jake

July 16th, 2011 at 13:23
Jean Says:

Hi Jake,
Yes, I agree, take all the good news that comes your way, with grace and gratefulness, as you are. And… enjoy NYC as much as you can, one day at a time, one meal at a time, one snack at a time, one taste at a time. And smile and laugh as often as you can… these are the things you do have control over, and it can’t hurt! My thoughts are with you.
Jean

January 29th, 2012 at 00:26
nuru massage Says:

Good luck with your on-going treatments. I so appreciate your updates and will look for more.