New Concerns

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.


~ by julie70 on March 5, 2011.

4 Responses to “New Concerns”

  1. Oh wow….I sure hope things get back into a better swing for you!

    By the by, how does Grapeseed Oil help?

    • Back when I was first diagnosed, I had read some reports about antioxidants fighting cancer cells. I had asked my Hematologist about it, and although he hadn’t seen the reports, he was supportive of me trying it. I’d read that Grape-seed extract was supposed to be one of the best for this purpose, so that is the one I wanted to try. I had even written a post about it, here (there are some links at the end of the post for articles about the reports).
      I did take the extract for a short time, but not really long enough to feel that I can give an opinion on it. I did, however, start drinking A LOT of acai berry juice every day, and I was putting about a quarter cup of frozen blueberries in each glass. My Hematologist did comment on how nicely my platelet count came down. Was it quicker than normal? Did the berries work against the ET? I have no idea, and I don’t drink the acai berry juice anymore, nor do I eat as many blueberries.
      I do want to mention that I have also, since, come across this article from the American Cancer Society, written in 2008, on the possible cons to using antioxidants to fight cancers.

  2. I am new at blogging and not familiar with the procedure so I am trying to reply and hoping to find someone to share with regarding E.T. and the use of Hydrea. I am 66 yrs. old.

    • Hi Connie! How long since your diagnosis? Are you on Hydrea now?
      I have a page (you can find it over on the side of my blog, along with my Blood Work charts) with a bunch of helpful links. There are several for forums and discussion groups. I’m glad you found my blog, and I look forward to talking with you!

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