•March 17, 2011 • 4 Comments

This week saw two ‘Goodbyes’ that had, or will have, a pretty big effect on me.

First, my Platelet count was 160 and my Mayo Clinic doctor decided it is time to say Goodbye, completely, to Hydroxyurea!  That’s right, no more HU!  Starting today, the only chemo therapy I am on is Pegasys.  Needless to say, I am excited about progressing along, and eager to see how my counts and symptoms do on just the Pegasys.

I also had to say Goodbye this week to my faithful companion and four-legged best friend, Ginger.  She has been fighting a Cancer battle since last June, and last weekend the battle turned against her.  She was my shadow, and we relied on each other for comfort and security.  We often comforted each other on our rough days.  Almost 12 years ago, I caught her as she came into this world, and last Saturday I held her tight as she left it.

I know Ginger’s passing doesn’t have anything to do with Essential Thrombocythemia, but I mention it for two reasons.  First, because she deserves mentioning, often and with all my love.  But I also mention it because this week I learned just how physically draining emotional fatigue can be.  It reminded me how important it is, while we deal with the effects of this disease, to surround ourselves with things that make us happy.  People that lift our spirits and make us smile.  Fatigue is already such struggle for many of us, and if we are tired, emotionally, it will make it even more of a struggle.

Often easier said than done, but well worth it when we can pull it off.



New Concerns

•March 5, 2011 • 4 Comments

Yesterday, I had my monthly check-up with my local Hematologist.  It was a nice appointment, because he wasn’t very rushed and was able to sit and talk with me.  He talked about some recent conversations he’d had with other Hematologists about Pegasys, and how there is still a lot of apprehension with most doctors about using it for MPNs.  But, as he pointed out, it will probably just take a major facility like Mayo, using it successfully on patients, to sway everyone.  One of the things that I really like about this doctor is that, as he said himself, he is very open-minded.  He didn’t consider putting me on Pegasys himself, but he is open to working with Mayo since they have started me on it, and he is interested in seeing how it works out.  I already knew that he was an open-minded doctor, as he had been supportive of the idea when I asked about trying some natural approaches to my treatment.  I had wanted to try Grape-seed extract, and he’d said that there isn’t really any information to support the use, but he wasn’t opposed to trying it.

We also talked about my symptoms.  Let me back up a little:  2 1/2 weeks ago, we (‘we’ being my Hematologist at Mayo) increased my Pegasys dose from 45mcg to 90mcg/weekly (a typically full dose for MPNs), and decreased my HU from 1000mg 6 days and 1500mg 1 day a week to 500mg/daily.  Well, if you look at my Blood Work charts, you will also see that is when my platelet count went from 386 to 172, and was 138 the following week.  That, of course, was still in response to the 45mcg Peg and 1000-1500mg HU.  Last Wednesday, my count was 407.  The increase in the Pegasys and decrease in the HU had resulted in an almost 300 count rise in my Platelets.

Mayo feels that some of that could be normal fluctuation, and that there isn’t a need for concern.  We will continue as we are now, and see what the count is next week.  My local Hematologist, however, feels differently.

Back to the symptoms, and the reason why my local Hem is concerned:  Last August, when I had my retinal thrombosis, my counts were in the mid-400s.  Now, technically, that is in the normal range.  High end of normal, but normal nonetheless.  But I had a clotting episode, and I was still having more symptoms, like burning in the soles of my feet, more aches and fatigue, headaches and more – oh, what was the word he used? – Parethesia (checked my notes ;)).  Parethesia is the tingling, burning, and otherwise abnormal sensations in the skin.  In my case, it is in my hands and feet, and sometimes my arms and legs.  He (my local Hem) had determined that the 400s, while normal, was still too high for me.  He had said, at the time, that we needed to be more aggressive in bringing my counts down.  We brought them down around another 100, more or less, and my symptoms did improve.  No more headaches, the burning in my feet was almost gone and the aches were much better, as was the fatigue.  They were all still there (minus the headaches), but much improved.

At my appointment yesterday, I told him that over the last week, the headaches had come back.  Pretty badly, in fact.  They’re not the ‘sharp pain’ kind of headaches, or even the ‘dull throb’ kind that I would usually get.  These are a ‘burning’ kind of pain.  Very different, and clearly related to my ET.  Also, the burning in my feet has gotten bad again, the aching is much worse, and I have been pretty badly fatigued.  And I have a new symptom.  Usually, I wake up a few times in the night, because the tingling in my arms is so bad from lack of movement, and my hands have become numb.  I simply switch positions in my half-awake state, and go right back to sleep.  For about the last week that has been a little different.  I wake up several times during the night, not just with tingling and numbness, but with a terrible pain in my arms.  Usually just one arm at a time, depending on how I am positioned, but it is a sort of a ‘pressure’ pain.  You know how it feels when they take your blood pressure, and the cuff gets way too tight?  Imagine that, all the way from your shoulder onto your hand.  It hurts to move and reposition in the first place, then I lay there for several minutes, gritting my teeth while the pain subsides.  Then I try to go back to sleep.  I haven’t been sleeping very well, needless to say.

So, my local Hem is concerned.  He feels we can’t dawdle in the 400s while we get my meds straightened out.  That seems to be the number when my platelets start causing me serious issues, and he is worried about another clotting episode.  So he asked me if he could call the Mayo Hem and discuss my symptoms with him.  I said, “please do.”  After all, that was my intention – to have them work together.

And wouldn’t you know it…my Mayo Hem is on vacation.  So my local Hem was unable to talk to him yesterday.  He will have to call him back, next week.  So now I wait, and try not to worry.


•March 2, 2011 • 1 Comment

Someone asked me if I use Twitter for blogging.  Well, no, I wasn’t…  To tell the truth, I hadn’t thought of using it for that purpose.  The extent of my tech savy-ness is Facebook and this Blog.  I don’t even have a cell phone.

So, I now have a Twitter account for my Blog.  You can find me at MeandETblogger .  I’ll make posts – er, Tweets – there, when I have a new post, here.  And I’ll also tweet when I find tidbits or articles that I know you’ll all be interested in.

Hope to find you all there 🙂

International Rare Disease Day 2011

•February 28, 2011 • Leave a Comment

Today is International Rare Disease Day 2011.  You can read more about it, here: Rare Disease Day 2011.

Since Essential Thrombocythemia is a rare disease, I decided to make a short video about our disease, and also to urge people to be more aware of their health.

So to all my ET and MPN friends, ‘Happy Rare Disease Day’! I know, that sounds a little funny, but I am thankful for the friends that I have made though this blog and through support groups and other MPN groups. Our disease may be rare, but it’s good to know that people as good as all of you aren’t!

International Rare Disease Day 2011 Video

Making Some Adjustments

•February 23, 2011 • Leave a Comment

Today, I had my weekly blood draw.  As usual, the lab at the local Cancer Center faxed the results to the Mayo Clinic, where they were reviewed.  Then, the nurse calls me and lets me know if I need to make any medication changes.  We’ve been doing it this way since I went to the Mayo Clinic in December, and we decided to start me on Pegasys.  I’ve stayed on my usual dose of the Hydroxyurea (actually, just a tad bit higher of a dose), and we’ve added the half dose of Pegasys.  The plan was to let my body adjust to the lower dose of Pegasys, then gradually wean me off of the HU, and onto the full dose of Pegasys.

Well, today we took the next step.  I got my call from Mayo, and was told that my platelet count is 138!  It hasn’t been anywhere near that low since I became aware of my platelet count!  In fact, the nurse said, “your count is good.  Really good.  In fact, it’s almost LOW now.”  You can see how my platelet counts – and the rest of my blood work – has been fluctuating, and reacting to medication dosage changes, in my Pages, under the Blood Work tabs, in the side bar of the blog.

So what is the next step?  Starting tonight, I will reduce the HU dose to 500 mg/day.  That’s one capsule.  I was taking 2 capsules (1000 mg) per day, plus a third capsule (for a total of 1500 mg) every Monday.  In addition, I’ll increase the Pegasys injection from 45 ml to 90 ml, which will be a typically full dose.

I’m excited to be progressing in my treatment, but I’ll be honest, I’m a little anxious, too.  I asked the nurse if I should expect the side-effects to increase with the dosage, and she told me No.  I think I’ll take that giant Ibuprofen tonight, anyway, just to be safe ;).

Round Two

•February 4, 2011 • 4 Comments

The day before yesterday I had my second dose of Pegasys.  As promised, I am here to tell you how it went :).

Did you notice the smiley face?  That should tell you something.  I feel a hundred times better than I did last week!

I did prepare a little better this time.  I tried to be well rested, and I tried to make sure I had eaten.  I was very nervous, though, and I started to worry that my nervousness would affect my reaction to the injection.  Which, of course, made me more nervous.  Finally, I waited until just before bed to do the injection.  That’s when I usually take my meds anyway, but I also waited because I was hoping that way I’d be able to fall asleep before any side effects really kicked in.  You may remember that the first dose was given mid-afternoon, and I was really hurting by bedtime.  As a result, the pain kept me up most of the night.  I was hoping to avoid that this time.

I gave myself the injection, and took the rest of my meds.  I also took an 800mg Ibuprofen, proactively.  Just before getting into bed, I looked at the injection site, and it was surrounded by a perfect, solid red circle, about 1/4″ in diameter.  I didn’t know if that had happened last time…I hadn’t looked at the injection site for quite some time afterwards…so I decided to just go to bed, since it didn’t hurt and I wasn’t feeling funny.

I woke up feeling pretty good.  The red circle was gone.  I was just a little achy, but more of a stiffness in my joints.  However, as the day went on, I got more sore.  I also got pretty fatigued and the heavy thirst/cotton mouth was back.  By bedtime last night, I was feeling pretty run down and stiff, but no tears and it was certainly tolerable.  This morning, my back hurts pretty bad, across the back of my shoulders and down my spine.  My pelvic/hip bones are also pretty sore and stiff.  But again, not nearly as bad as last week and I am just going to take another Ibuprofen.  I am confident that will give me all the relief I need.

I had been hoping for some improvement this time.  This is much better than I had expected.  Last week I had extreme pain, fatigue and thirst, loss of appetite, upset stomach when I did try to eat, a bad headache and severe chills.  This time I have a dry mouth, slight loss of appetite, soreness and fatigue.  I’d say that’s a pretty good improvement! 🙂


•January 28, 2011 • 8 Comments

This week, I was started on Pegasys to treat my Essential Thrombocythemia.  Several people have asked me, “so, what is Pegasys?”  Well, I was wondering, too, so I’ve been doing some reading and researching.  I’ve had a little trouble finding MPD specific information about Pegasys, because it is commonly used to treat Hepatitis.  Only recently has it started being used for MPDs.  So, a lot of the information that I’ve been finding deals with using Pegasys in conjunction with other Hepatitis drugs.  But, I was able to find information that I felt could be applied to MPDs and I would like to share it with all of you.

Pegasys is simply a common brand name for Pegylated Interferon.  Many of us are familiar with Interferon, maybe not through use but at least from hearing about it from our Hematologist.

Interferon is normally the drug of choice for pregnant MPD patients, younger patients, in special cases, or when another drug (for example, Hydroxyurea or Anagrelide) is not tolerated by the patient.  Interferon controls blood cell count (red cells, white cells and platelets), it reduces spleen size and it reduces clotting events.  It also may reduce fibrosis (scarring in the bone marrow) and it may reduce MPD-related itching.

So, what is the difference between Pegylated Interferon (Pegasys) and Interferon?  Well, it turns out that the answer is pretty simple.  The difference is the PEG in PEGylated.  PEG stands for Polyethylene Glycol.  When the PEG molecule is combined with the Interferon, it lowers Interferon’s toxicity and it slows the clearance of the drug from the blood stream, making is a longer acting, slow releasing medicine.  That means that you get the benefits of Interferon, plus the PEG allows for weekly injections, rather than several injections a week.  It also allows fewer side effects than with non-pegylated Interferon.

Now, that doesn’t mean that there are no side-effects when starting Pegasys.  If you read my last post, you know that flu-like aches, pains and chills, headache, extreme fatigue, fever, heavy thirst and loss of appetite are common (and were present for me).  However, it was explained to me by both my local Hematologist and the nurse at the Mayo Clinic that the side-effects will lessen with each dose.  Just like when you get the flu, your body will create a resistance to the side-effects, and that resistance will increase with each exposure (dose).  Eventually, the side-effects will be non-existent.

I think what excites me the most about Pegasys, even more than the possibility of reducing my clotting events and some of my symptoms, is the possibility that Pegylated Interferon may reduce abnormal JAK2 in patients, possibly leading to remission.  Isn’t that exciting?!?  However, trials are still being done to test this possibility.  I know, those are a lot of ‘possibilities’, and no ‘promises’, but it is still a positive outlook.

Pegasys does have a website, HERE.  However, please keep this in mind when perusing the site: again, most information available on Pegasys deals with using the drug to treat Hepatitis.  This means that many of the warnings offered are for when Pegasys is used in conjunction with another drug (for example, Copegus).  Therefore, many of those warnings and information do not apply to us (for example, Interferon is used to treat MPD patients who are pregnant.  However, Interferon and Copegus used together are dangerous to pregnant women).  PLEASE…if you are looking for information on Pegasys (or anything related to our treatment, really), please make sure the situation applies, correctly and completely, to us.