Miracles Take Time

Blood counts were not changed from last time - possibly the level of Rat Poison that I'm taking only reduces the load to a certain point. The counts were flat since the last month. The Huntsman people are writing a change proposal to double the dose again - possibly in 2-3 weeks.

Christmas Miracle at the Huntsman?

Hurrah! 53 days after doubling the dose of the Phase I test chemo, my blood counts have come down! Because the chemo doesn't "kill" blood cells, it takes at least the "life-span" of a stem cell to see a decrease in the resulting blood counts.

Although the decreases were not large (8% on platelets, 6% HCT), it was the first platelet decrease below 600 since starting the new chemo! Although there can be other explanations for the decrease other than the chemo, I'll choose the optimistic approach: IT'S WORKING! Recent bone marrow biopsies should indicate any change in reduction in my JAK2 mutant allele burden.

I'm so grateful to the corporate sponsor, the many researchers, doctors, nurses, phlebotomy professionals (and amateurs!) and friendly Huntsman Cancer Institute staff for all of their assistance. From the front door to the second floor and into Clinic "A", I find friends of 5 years, helpful professionals and intelligent scientists who help me understand the nature of the mutant enemy! Thank you to all.

Good times at the Huntsman: 11/29/2010

Today was a super day at the Huntsman. At the end of a major cycle, the sponsor, needs to know what effect the drug is having on my body. So, when I say, it was A super day, I really mean that they did lots of tests-for over four hours.

Bone Marrow Biopsy That which I feel may not be exactly what happens, but after numbing my hip in the middle of my back with a great deal of novocaine, the doctor inserts a large needle into the bone and breaks through the bone to get inside the hipbone. She then pulls out this including the bone marrow from inside the hip. Today, she did that twice and then using something like a hollow drill, she corkscrewed into the hip and extracted a bone sample. I confess, I yelled pretty loud, and it hurt like - - !

The biopsy site will be painful for 24 to 48 hours and makes sleeping with my ankle in a cast more difficult. The biopsy will be used to determine the proportion of JAK2 to regular stem cells and will indicate whether the rat poison is functioning as intended.

Blood Tests Normally, they do a single needle into the major vein in your elbow, and from that needle they extract 5 to 11 vials of blood. Today, they only extracted five vials of blood. I told them that I was not loved very much if there were only five vials. Later, after the bone marrow biopsy, they came in for 11 more files. So, I must still be loved by the testers a great deal.

As expected, there were not many changes in my blood counts: my platelets were about the same and my red and white blood counts were normal. I expect to see lower blood counts at my next appointment, December 29, 2010, because of the increased dosage of rat poison.

EKG and Vital Signs I'm pretty normal: 97.6 degrees, 116/62 (a little low), and down about 10 pounds after my surgery.

There is always great food at the Huntsman. The Point restaurant and deli are subsidized by the Huntsman with food provided by Gastronomy restaurants. Today, however, I have been nauseated and was restricted to Sprite, soda crackers and a roll with butter.

A FRIEND AT THE HUNTSMAN “Pat” is a 72-year-old woman on the same study protocol as myself. She is slight of build and very friendly. One day In Clinic A, I noticed that she carried the same red protocol book as me and I introduced myself to her. She has a similar condition to mine (myleoproliferative, related to Leukemia) but it is not polycythemia vera. Her disease seems to be more advanced than mine, and she requires 2 to 3 units of blood every two weeks. She is also hoping to increase her dosage of rat poison. We talked today, and occasionally on the telephone. She has good friends and family who drive her to the Huntsman. Like anyone on a study drug, I worry for her.

Up and DOWN and UP...

Although I have been on new medication since June, the doctor says that I am under-medicated which explains the constantly increasing blood counts. They have been going UP approaching levels which could be dangerous for stroke or heart attack. I've been a little DOWN Today I got an e-mail from the study coordinator, which said:

"your case was discussed during our 11/3 teleconference with the Sponsor and they would like to have you initiate a dose increase to 60mg once a day to see if we can't better control your counts. Please start tomorrow morning with taking 6 pills in the morning. I will get you additional pills to hold you over until we see you again."


So, now my dosage is UP and we'll expect to see the blood counts come DOWN in about a month.

11/7/2010 The increased dosage has caused a few side effects: nausea, dizziness and fatigue. Nothing new! It will get better.


11/16/2010 The fatigue lasts 4 to 5 hoursand takes a large chunk out of my productive day several weeks ago, I had requested permission to take the pills at night. I believe that by taking the medication at night that he will happen during my sleep and pass unnoticed leaving me in better physical condition during the day. Today, I got an exciting e-mail:


"I apologize for the delay in getting back with you on this. I have spoken to the Sponsor and they will allow you to take the pills at night, just as long as you have food approximately 20 minutes prior to taking the medication. Can you tell me how many pills you have left? I need to get you additional pills as we have increased the dose."


11/20/2010 I'm sleeping well and rising with more energy, no nausea, and not as much dizziness.

NEW HOPE!

During this clinic appointment, I was very excited about being in a Phase 2 PV study for an Interferon 2 Alpha (IF2A) study that had shown great promise. I had studied all of the preceding publications with the IF2A and had convinced myself that this was the "promised land" and that I finally had the hope of being cured from PV.

During the appointment, Dr. Prchal told me that because of my other genetic issues, I would not be accepted as a candidate for this study. I was devastated! However, Dr. Prchal told me about a Phase 1 study (first human consumption) with Eli Lily. The drug has shown promise with mice and dogs - and now needs human rats (or guinea pigs). I will go through the screening in late June and start the study in July.

Same old stuff...

During the past 4 years, I have been taking Hydroxyurea as a chemo for my PV. There are few side effects known and it manages to keep my blood counts quite normal - platelets between 200 and 300 and RBC and WBC in the low-to-normal range. Monthly, I go to Clinic A and have my blood drawn and note any changes. There have been no other alternatives to this point, but the literature indicates growing interest in Interferon and other approaches to controlling PV.

Discouraged, encouraged...the HHC swings.

Iron Jak finally updates the blog. After a rocky emotional start on this journey, the results have been felt and the mood is decidedly UP!

Ankle: after being diagnosed with bone spurs and serious arthritis damage to my right ankle, it was surgically repaired on October 16, 2008. Now, it's March 22, 2009 and I'm limping but still much better than before. I fit in my ski boot without pain, I have a normal walking schedule and if I over-do the exercise, I limp for a day. Gradually, it has improved - and faster than many ankle surgeries.

Hemochromatosis: after removing more than 5 gallons of my blood, my ferritin level has come down from almost 3,000 to 208 (in mid-February) New orders were written last week and I'm now on a once/month schedule of phlebotomies for 6 months. According to the general medical consensus, I'm "out of the woods" for HHC. BUT - just because the blood level is down, at 208, it's not normal (25-35) quite yet. The concern I have is for the organs that were damaged prior to any therapy. Only time will tell how the liver and kidneys function. The knuckle damage will never be undone.

So - dear HHC friends, the HHC front continues to improve and twice weekly phlebotomies weren't all that bad. They were helping keep my weight in check - and since turning off the blood spigot, I've gained some weight.

Take heart - that dark cloud has turned into rain and the skies in the HHC direction are turning brighter shades of blue.