Update from the Mayo Clinic

Today I went into the Mayo Clinic to discuss the results from my lab test done about 2 weeks ago.  It was all around a very different appointment than what I'm used to.  This appointment was at the Mayo Hospital (the doctors go back and forth between the clinic and hospital) and I normally go to the clinic but this was his first available so I didn't get a choice.

At my last appointment Matt and I both left feeling pretty good about everything and thinking that we weren't going to have to really deal with much other than getting my blood checked every month, my low dose aspirin, and letting my blood off when my levels got high. We knew from my last appointment that my iron levels were low because I was very anemic but we didn't realize how low until today. At the last appointment my Oncologist really didn't want to put me on any type of drug just yet but he was pretty sure we were going to have to get some iron in me to bring up my iron levels. So he ordered an iron study and a study done on my JAK2 Mutation. I was pretty sure I would just get a call telling me to start taking iron pills and that would be the end of that. Then they called and told me that he wanted to see me which is why I went in today.

We arrived at my appointment and Matt and I were sitting there reading our magazines waiting to be called back when we were approached from someone from the American Cancer Society wanting to know if there was anything she could help us with - such as travel to and from appointments, nutrition, or things of that nature and I told her we had everything under control but she left a paper and the contact information in case we ever needed anything. It was nice but I think we are still in denial over a lot of things and I'm not ready for that yet. I'm ready to volunteer or help in any way I can but not ready to use their services yet it makes things too real I guess. I don't know but it looks like we might need their help sooner than what we expected.

When we got back there for my appointment the tone of the appointment was very different from the last appointment. First off he told us that I am EXTREMELY Iron deficient - a normal level for stored Iron in the body is 11-307 and mine is at a 3.  This would explain my very BAD headaches and how tired I have been. There are two reasons why I could be iron deficient -
1.) Being from the accident I lost so much blood from the accident which was never replaced and having my blood let off right before the accident could have just left my body really low on Iron.
2.) When Polycythemia Vera starts to turn to Myelofibrosis the bone marrow stops making Iron and then stops making blood. This is when I would need  a bone marrow transplant and things wouldn't be very good.

The doctor believes that it's the first reason however he can not rule out the 2nd reason at this point so he wants to take every possible action to prevent this. Instead of waiting to put me on any type of medications I will be starting a gene therapy called Pegasys which is actually used to treat Hepatitis C but have been used in patients with PV - it's not approved for patients with PV but it's been known to put them into remission. Basically I would have to inject the medication under my skin once a week (sounds like fun huh?? - Matt said it's better then everyday I guess he's right... :) ) So right now the Mayo Clinic is trying to get it approved through my insurance because it is VERY expensive and as the doctor put it he doesn't want it to bankrupt us and if the Pegasys works I would be on it the rest of my life or until a new and better drug comes along. He is doing several studies on other drugs and he believes there will one day be a cure but today he said it won't be for several generations.

Today the doctor was very frank with us and told us he doesn't have a clue what my PV will do - usually in patients with PV it doesn't start to change (if it does change) for 10 years after diagnosis which would put me somewhere between 37-38 years old according to the blood test they traced back. But he also said that that is not certain either. He had more concern in his voice today and both Matt and I felt like he just wasn't giving us all the information.  We are just praying this drug will not have any bad side effects - my doctor has about 100 PV patients on Pegasys and only about 3 of them had side effects that made him take them off of it. It will also lower my risk for blood clots and I wouldn't have to have my blood let out nor would I have to stay iron deficient on it. I would love to be in remission and just feeling 100% better.

On my very first visit with the Hematologist at the Mayo Clinic he told me there is a disorder I'm going to test you for it's very unlikely you have it but I would be a bad Hematologist if I didn't test you for it. Well that test did come back positive and here we are today. We had the same feeling today as we had then. It's a hard place for us to be right now.

We did get some good news today - on my JAK2 mutation he did another test that would test to see if I have a second mutation which would make the disorder act different. I don't have the second mutation which is a good thing. I still have the JAK2 mutation but not both of the mutations - I'm sure that didn't make sense but it's a good thing.

It was not the news we were looking for but it could be a lot worse. We will just have to pray extra hard that things aren't progressing and it's just all from the accident. I started taking Iron today along with Vitamin C that will help build my iron up and then for the next several weeks I will have to go in and  have blood test every week to see how my blood levels are responding. He said it could come up slowly or it could be like a dry plant that all of a sudden gets water and goes wild so he wants to keep a very close eye on that. If my body would do that then I would then have to have some blood let off which at this point is not really a big deal.

Thanks for all your prayers you don't know how much they mean to us.