The Mayo Clinic

I’m back!!!

That’s right, I made it to the Mayo Clinic!

It was everything I’d expected.  After seeing Dr. Mesa’s videos, and talking to him via conference call at our local MPD support group meeting, I was expecting a very knowledgeable, professional, easy-to-talk-to doctor.  Check, check, check!  First, when he came in the room he gave me a big smile and introduced himself as Ruben.  So much for waiting for him to introduce himself, in order to know if ‘Mesa’ is pronounced may-sa or mess-a, which is exactly what I was doing, but I can’t complain about having such a personable, comfortable, friendly doctor, can I?  He sat right down and started talking to me.  TO me.  Not at me, or around me.  TO me.  He asked me several questions, then he started asking the questions that I had.  Have you seen his videos?  If you have, you know that one of the great things about the way he speaks is that he asks the questions that we all have, then goes on to answer them.  He does exactly the same thing in person.  He anticipated every one of my questions, and then went on to answer them.  He would stop and ask, “do you have any questions?”, but of course I didn’t because he had already asked them for me.  That really made me feel like he pays attention to the concerns of his patients.

The biggest hope that I had for this visit was to possibly get in a clinical trial, or on Pegasys.  My reasoning was that I am so frustrated with the symptoms that I have from ET.  Yes, HU brings down my platelet counts, but it does nothing for my symptoms, and in fact makes the fatigue and pain worse.  Without me even bringing it up, Dr. Mesa started to talk about his feeling that a clinical trial or Pegasys would be my best option.  He said to me, “we have 3 concerns with you.  First, to control your platelet levels.  Second, to prevent another blood clot episode.  And third, to treat your symptoms, which are not currently being addressed.”  Yay, Dr. Mesa!!!  He explained to me that the JAK2 inhibitor trials are not my best options, since I do have another option.  He said that trials are a huge ordeal, and while JAK2 inhibitors could eventually benefit me, he did not feel that, at the point they are now in development, they are a good option for me.  However, he was very optimistic about Pegasys.  He feels it will address my symptoms while controlling my platelet levels.  So in the end, that was the decision – I will start on Pegasys.

It will take some time to get this medication approved by my insurance.  How long it takes will depend on how cooperative my insurance decides to be.  Hopefully, it will not take long at all.  The Pegasys will be shipped to me every month, with everything I will need: vials, needles, syringes, alcohol wipes, etc.  It has to be shipped from a special pharmacy by the Mayo Clinic.  It can’t be gotten through my local pharmacy.  It is an injectable chemo, that I will self-administer once a week.  Dr. Mesa wants me to go to my Hematologist’s office to have them administer the first dose, and show me how to do it.  Then, for the second dose, I am to go to my Hematologist’s office again, and let them watch me do it, to make sure I am doing it correctly.  He said the needles are a very small gauge, like insulin needles, and I will inject the Pegasys under the skin on my stomach.  I sounds just like insulin shots, and I’m not worried about it at all.

Dr. Mesa also explained that the body has to be adjusted gradually to Pegasys, so I will start out at half the normal dose and work up.  At the same time, my HU dose will be adjusted accordingly, and brought down until I am only on the Pegasys.

A quick side note about HU:  My local Hematologist was having difficulty adjusting my HU dosage, because 2 capsules daily didn’t seem to do enough, but 3 capsules daily brought my platelet levels and my WBC down too low.  Dr. Mesa explained to me that HU is a slow acting medication, so it needs to be thought of in ‘weekly dose’, rather than ‘daily dose’.  That means that instead of 2 capsules daily, or 3 capsules daily, it is 14 capsules weekly or 21 capsules weekly.  That is quite a difference.  Clearly, 21 is way too much for me, but 14 is not quite enough.  So, we are starting me off at 15 capsules of HU weekly.  That means 2 capsules per day, except on Monday I will take 3 capsules.  We will adjust that as needed, until I receive the first Pegasys shipment.

I will be having weekly blood draws, and faxing the counts to Dr. Mesa, until we get me completely on Pegasys and at the dose that I need.  In 6 months, I will return to Arizona to see Dr. Mesa again.

I can’t express how excited I am, or how grateful I am to Dr. Mesa for treating me, and to my friend at the MPD Foundation for helping me to get in to see Dr. Mesa quickly!  My plane landed in Detroit Metro Airport minutes after the New Year rang in, and all I could think about was what a wonderful beginning I had to 2011 🙂


~ by julie70 on January 3, 2011.

9 Responses to “The Mayo Clinic”

  1. Thank you so much for this blog!!! I had not heard of that medicine yet!

    • Hi Mercy!
      Pegasys has been used for some time to treat Hepatitis, but is pretty new for use with ET. I plan to write a post about it, as soon as I finish the one I am working on.
      Thanks for coming by and reading…I hope the posts have been helpful to you :).

  2. Yay for you! I hope things go great for you …I also had not heard about this drug before…

    By the by, have you or anybody you know ever had any seizures associated with ET?

    • Hi Nina 🙂
      I’ve never had seizures, ET related or otherwise. Have you? I haven’t heard of seizures being associated with ET, but I am far from being a doctor so I would be interested to hear if this is an issue.
      I still plan to do a full post about Pegasys, but I did want to mention that it is a pegylated form of Interferon. So it is an injectable, and hopefully will address my symptoms as well as controlling my platelet count.

  3. Hey Julie,
    Wow you got to meet “The” Professor Ruben Mesa from Mayo Clinic. I’ve watched his Youtube video many times. His video explains clearly the conditions and understanding of ET. I was administer with the Pegasys Interferon last year for about 2 months. My haematologist recommends this treatment as oppose to HU. After a few weeks, my platelet count did went down but it impacts my liver enzime. I was then taken off the treatment but was lucky that my platelet went down. I did the injection myself too (once a week). I injected it through my thigh instead of the stomach area. If my platelet count goes up, I may be put on other treatment, pending further consultation from my haematologist.


    • Hi Bryan 🙂
      Do you have symptoms from your ET? How did the Pegasys do with those? That is my biggest reason for being excited about the Pegasys. HU controls my counts okay, but it just does not address my symptoms. I will be sure to ask my Hematologist here, and Dr. Mesa, about the possible affects on my liver. Thanks for the heads up :).

  4. Hi Julie,
    I have headaches, dizziness, feeling hot all over and at times feeling fatique and tired. That was some of the symptoms that I exeperienced early last year. I felt the same lately, but I do hope that it is just my mind that worried me too much. So I do really hope that my blood examination with my haematologist this week would return an encouraging result. Else, I would be put on medication again. According to my haematologist, the Pegasys – Interferon will react differently with differnt patients. My body reacted with an impact to my liver. Alternatively, I may put on different types of Interferon or on Anagrelide, depending on his recommendation. Sad thing is that wihtout a definate cure to this blood disorder, we’re just running through the options best suited for our system.


  5. Julie –

    I am so excited to find your blog. Congrats on your trip to Mayo, I hope Pegasys works well for you.

    I was just diagnosed with ET on January 2, 2011. The information is overwhelming to say the least. I was started on HU 1000mg and after about two weeks there was no change in my platelet count (985,000) so they have increased my dose to 2000mg per day. So far I am JAK2 Neg. I went to my doctor for blood work because I was starting to feel pins and needles in my feet, all the time.

    I have dizziness, fatigue, pins and needles sensation in my left arm, hand and foot and some headaches. I am hoping my body will adjust to the meds after some time but I am nervous.

    I started a blog to write about my family and it has turned into my health blog about my experience with ET.

    Thank you for sharing your journey with me and I look forward to reading more of your posts.

    – Susan

    • Hi Susan!
      Yes, you are right, it can be very overwhelming, and difficult to organize. I really feel that blogs like ours can be essential to maintaining our sanity while we sort it all out. When I started my blog, I didn’t know of any others, and just being able to talk about what I was going through made it feel so much easier to sort through and deal with. Have you found a support group that you can participate in? They are wonderful, and so calming, and good for making you feel ‘not so alone’ with this rare disease. Check out the MPD Foundation’s site…they have a listing of support groups around the country. I also have a post, titled, “Helpful Links” that has many helpful places for information. If you know of any others that I don’t have listed, please let me know so I can add them :).
      It sounds like we started out much the same way with our diagnosis. I don’t know if you’ve read my post titled, “My Diagnosis” (I think that was the one), but I, too, went to my doctor with other complaints and ended up diagnosed with ET.
      I look forward to reading your blog and talking with you more!

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