More from the Annals of Polycythemia Vera

L's office brings in people to test our blood every year in a "wellness screening." I have polycythemia vera, that in layman's terms means I have too many [red blood cells. Essential thrombocythemia is too many platelets. I have too many platelets, too.] (I want to link to earlier posts about PV but the linker isn't working. See 2/20/08, 3/9/08, 6/2/08, 2/1/09.) I sent my results to my hematologist yesterday and today she said that since my counts are still high, despite my therapeutic phlebotomies (I go to the blood bank and they remove a pint and throw it away) that she wants to talk about prescribing hydroxyurea to lower the count. Wikipedia tells us that it's "used in hematological malignancies, specifically polycythemia vera and essential thrombocytosis." Whether my PV is cancer or not depends on whom you talk to. The delightful thing about hydroxyurea is that it prevents leukemia and also can cause it. It gets you coming and going. Side effects include "drowsiness, nausea, vomiting and diarrhea, constipation, mucositis, anorexia, stomatitis, bone marrow toxicity (which may take 7-21 days to recover after the drug has been discontinued), alopecia (hair loss), skin changes, abnormal liver enzymes, creatinine and blood urea nitrogen." For the moment I'm not upset, just scared about adding this new drug to my large bouquet of strong medicines. Will I have to take more drugs to combat the side effects of hydroxyurea?

The FDA tells us that the drug is good for ovarian cancer. I wonder if you can use it pre-emptively. Would that be the silver lining in this cloud? Likewise, what if people took chemo and they didn't have cancer? I suppose the chemo would kill off any cancer cells swimming below the radar. But it wouldn't keep you from getting cancer later.

Mayo tells us we should wear disposable gloves when handling the tablet or capsule. After all, this is a substance that can turn your nails black, cause hallucinations, and as I said, bring on leukemia--even years after you've stopped taking the medicine. It can lower your white blood cell count, so make you more susceptible to infection.

On the other hand, it can cause weight loss.

The thing about polycythemia vera, or at least my version of it, is that the symptoms are ridiculous. I have tiny red dots on my skin and I get very itchy from being in hot water or even from the deep massage I'm getting for my Achilles tendonitis or even just out of the blue. It also gives me red cheeks so I look robust and healthy, like I've spent all day skating around the frozen-over dikes with Hans Brinker.

I felt fine before I was diagnosed with cancer two years ago, and I feel fine now and I keep thinking of Ann Patchett's book, Truth & Beauty, where she quotes Lucy Greely saying that her cancer made her feel special. It's ridiculous now to feel special when one out of every eight or nine US women has a breast malignancy. But there's this Thanatos-loving part of me, or melodrama-loving part, that feels sort of hopeful about the possible endometrial cancer. And I don't mean hopeful as in, It's probably nothing. It's like this dark hopefulness, like an attraction to the edge of a chasm. As in, O, I'm even more special because I might have a different kind of cancer.

What kind of person thinks this? Do I feel another cancer is inevitable, so that it's a relief when I think of finally being hit by a second one? Then I don't have to worry about the second hit. If you're dying, you don't have to worry about dying, because you're already doing it. When I was younger I felt so guilty for being alive because I knew that if I didn't have asthma medicine I would be a goner. And I knew I was privileged to have the asthma medicine, and later a breathing machine, because there were people everywhere who weren't getting care. And maybe they were dying and maybe not, and it seemed like my real fate was to die. To be dead. (This is why I've been in therapy since the Nixon administration.) It helped that my parents paid for a machine like mine that they donated to the hospital. I went to summer camp for three years and hated it because I couldn't breathe but I didn't tell my parents, I think because I didn't want to disappoint them. There was something deeply wrong with me, I couldn't exist with and in Nature, even though it should have been... so natural. Nature could kill me, and now my own nature, my blood, has turned against me. Has thickened against itself.

We are finite beings. Is that so hard to fathom? Yes. Because we have been here our whole lives. The world could not have existed before we were born.


Anonymous said...

Woody Allen once said, "I'm two with nature." I use that line all the time - Woody doesn't mind. Feel free.

And I, too, have been disappointed not to have a serious disease. I may even envy you for the serious diseases you already have. Thanks for making it safe to admit that. You are very brave, which is the best kind of special to be.

The Fifty Foot Blogger said...

CB, I am so sorry that you have to go through this.

I guess my first question is: can't they just drain you a little more often? Recommend pet leeches? I mean, how many potentially cancer-causing drugs is someone expected to take at once?

Cancer Bitch said...

The hematologist said that the blood-letting doesn't lower the platelet count, but some other things that I forgot what they were.
--C. Bitch

Ruth Pennebaker said...

How to put it poetically? Oh, yeah -- this sucks. However, your line about being in therapy since the Nixon administration had me howling with laughter, wishing I'd said it first.

Cancer Bitch said...

And it's true!! The only long stretch w/o therapy was for a period of about two years: about before, during and after cancer treatment up to this fall.

Maybe Nixon was the origin of all my anxiety! Whom can I sue?

Jonah said...

The blood letting lowers the hematocrit, and I think the hemoglobin. Unfortunately, in people with PV it tends to also stimulate more blood creation, which is what PV is to begin with.

I also have polycythemia, but the secondary kind(we are hoping) and not vera. As I understand it, secondary is more likely to go away.

I have been thinking lately about the whole idea of illness as a specialness in regards to my own weight issues. I lost about twenty pounds since August, by accident. I am pretty sure that this is not healthy. There is one big part of me that says, "I need to gain weight. I will stuff myself silly and I will gain weight." and then there's this other part of me that wants to exaggerate the weight loss and go, "I am so sick. I can see my ribs even when I breathe out as much as I can. I am so special!"

Anonymous said...

Hi...I got kicked in the stomach (figuratively) last Friday. My doctor sent me to a hematologist because of high blood counts (for an extended period of time.) The specialist says it is one of two things, either polycythemia vera or chronic leukemia. I find out this morning what I have. I am scared to death. I guess part of me was hoping that it would turn out to be polycythemia, thinking it was the lesser of two evils and not cancer, but from what I have read, it is cancer? or not? I read conflicting messages. I am 42years old and am the mother of two young boys. I need to be here for them, I can't believe this is happening to me!!! I wish someone would wake me up from this awful nightmare. :(

Anonymous said...

PV means your bone marrow makes too many red blood cells NOT platelets. I have been under PV treatment for the last year and a half.
Your blood becomes too thick, which makes many other symptoms like high blood pressure, headaches, itching, vision problems, or in my case stroke before it was caught. My hemocratic sp? was at 62 and should have been at 42.
I had 10 phlebotomies in a row each week for 10 weeks to get my blood back to normal.
It took 8 months for my blood levels to stabilize after the bleedings, but I haven't had to have another for the previous 8 months. Also, on no drugs to combat this.
Regarding the elevated platelet level, it's due to the bleedings if you are having them. First of all, your body responds to the blood loss by producing platelets to STOP the bleeding you are experiencing. Second, if your iron level is low due to the bleedings, you will produce platelets instead of red blood cells. Enough iron produces blood cells, not enough produces you have to realize where you are in the process. A good hemotologist will explain this to you.
Also know that any stress will aggravate the PV, and cause your blood numbers to go up. I have had the Mayo clinic test looking for gene mutation as well as the Leukemia test which both turned out negative....but I still have PV and deal with it daily.

Anonymous said...

Thank you for your post, it has put a light on the subject that my doctors didnt bother explaining. They simply told me smoking will kill me and they bleed me monthly for the past five years. I dont take any of the drugs mentioned, they treat me for high blood pressure and my Rhuematoid arthritis. Knowing what makes what increase;(platelets) and what makes the RBC count increase helps; thank your for that. I was forty when diagnosed... some of my family members have known this is a "family affair" and didnt think it important enough to share so it went undiagnosed for a good long time. If it kills me I hope it does it in one clean swipe. Until then I totally intend on living my life to the fullest. I keep an eye on the professionals and their results, my life is more important to me than it is to them..... dont dwell.. just deal...stress can only make things worse :)

Lisa Ginsburg said...

My Mom has been diagnosed with PV and I am a bit confused. Is it cancer or not? Do you know where I can get info? Who to talk to? I understand that it can stem from radiation exposure. My Mom had radiation 30 years ago for sarcoma of the uterus. Any advice would be helpful. Thank you for your wisdom and humor. Lisa from Chicago.

Cancer Bitch said...

Dear Lisa,
I am so so sorry I didn't see your comment until now. I hope you've gotten the help you need. If you want a recommendation for a hematologist in Chicago, I recommend Anaa Zakarija at Northwestern. She's a good doctor and a good human being. Some soldiers got PV from radiation from bombing fallout but I don't think there's been proof that other kinds of radiation have caused PV. It's a rare disease so there hasn't been a lot of research on it. Mayo does not consider it cancer, but the National Cancer Institute does. It is chronic and doesn't grow like a tumor does. I've been on hydroxyurea for a while now and I don't have side effects, I don't think.
C. Bitch

Asmilwho said...

Hallo CB

I came across this blog entirely by accident (I was googling PV+weight loss).

Had PV rubra for 3 years and somehow feel the same as you, like I subconsciously want it to be worse. Weird feeling, kind of "if you're going to make into leukaemia, do it NOW!"

Also on hydroxyurea since I got anaemia from all the blood letting

Cancer Bitch said...

Hydroxyurea because of anemia from the blood-letting. It's hard to process that. Oh, I get it. You had to stop the blood-letting because it gave you anemia, and now you're on hydroxyurea.
So far I have to say I don't think I've had side effects from it, though I'm still on a low dose.
I had a doctor (periodontist) correct me when I said it was cancer. You can find it on the Natl. Cancer Institute's web site, so that's pretty proof positive, for me.

Anonymous said...

Hi, I have PV, or polycythemia rubra vera, ands diagnose JAK 2 positive via bone marrow biopsy... Be careful, I've learnt that a lot of doctors don't have a clue, hydroxyurea will cause white blood cell leukemia (as told by oncologist at Princess Margret Hospital here in Canada
PV is when your (RED) blood cell or hematocrit count is too high (should be below 0.45) too many red blood cells... that why blood letting is used. also another symptom of PV is too much blood... you can manage most case by diet, stay away from high iron food, things like Vitamin C during high iron meals stay away from Vitamin K...lots of stuff, I'm male 45, diagnosed 2 years ago... dumb bastards they missed it, thought it was something else I went in for surgery and I stroked.. in the hospital, Ya (STROKE), I'm told now that as long as I manage my blood I'm not a stroke candidate... (change Hem's get another for hydra (stay the F@#!away... they use it to treat symptoms... if you can manage it with blood letting do that, your system is suppose to be able to manage giving blood every 56 days, BE CAREFUL you need to monitor levels or you'll end up (anemic) and that could make you feel even worse... Ben

Stacie said...

Okay first off Cancer Bitch - You are lovely, adorable, witty and just too cute. Your blog makes me smile. Thank you!! I happened across it by accident of course (ironically) scrolling for info on PV and other reasons for elevated RBCs, Hemoglobin and Hematocrit - of which, you guessed it -I have just been told I have. The sad part in all this is that "Have" is not the operative word her as much as perhaps..have "had" - as I have just called and requested labs from a few other MDs and such and it seems as tho I have had this odd elevated for about 6 months and no one has caught it, so tomorrow I will be calling the old PCP to let him know it is not In Fact just the last lab he called to notify me off, but has been happening for a while now. How was yours found and diagnosed? How elevated were your RBCs and H&H? Mine do not seem high - but high enough for the MD to want a re-draw, but now that I see it is in fact a chronic issue I am a bit concerned.....and a bit nervous. Any pointers? Wishing you well! And hoping this finds you happy, healthy and enjoying the holidays!! Peace and Love ! S.

Agnel T. Joseph said...

Polycythemia is not an end. It's curable. There's an effective treatment is there >>

Agnel T. Joseph said...

Polycythemia is not an end. It's curable. There's an effective treatment is there >>

Cancer Bitch said...

Phlebotomy and bloodletting are the same, no? I'm now on Jakafi, though it does lower my immunity, and I've had bronchitis twice since I started a few months ago, as well as stomach flu, though you can't prove the connection. Anyway, my itching has improved maybe 40 percent. I was hoping for more. My red blood cells are high, so I'm going from 10 mg Jakafi/twice a day to 15. We shall see. The amazing thing is that my insurance covers this, all but $20/month. If it doesn't do much more for me, I may go back to hydroxyurea because this is costing my husband's old employer (a union) a whole lot. Or maybe take Jakafi in warm weather only, because that's when the itching is worse. How strange that pv is very rare and usually hits men over 60, and I know two other women who have it. One is a very good friend. Both are Ashkenazi Jews. Another disease brought to you by those who don't Marry Out, and therefore keep the gene pool small and intense with weird diseases.

Mayo Saad said...

من الاعمال شركة تنظيف خزانات بالمدينة المنورة التي لابد من القيام بها تحت اعين شركه كبيره تمتلك كل مقومات النجاح اعمال النظافه فالنظافه اصبحت اليوم امر هام جدا نظرا لانتشار التكنولوجيا وتعدد الاستخدامات داخل اي منزل اصبح الاعتماد علي شركه تمتلك اسم كبير امر ضروري وحتمي علي كل البيت ولتوفير ذالك الامر فعليكم شركة كشف تسربات المياه بجدة الاتصال بشركتنا كشركه كبيره في عالم النظافه حيث تقدم الشركه شركة الصفرات للتنظيف اداء عالي جدا لعملائها الكرام حيث اننا نقوم بتنظيف البيت من الداخل والخارج

Herbs Solutions By Nature said...

Polycythemia Vera Herbal Treatment can help control the disease and its causes and complications. Weakness and Redness of the skin are symptoms of polycythemia vera for diagnosis.

Anonymous said...

I have pv as well and all the blood letting (called phlebotomies). I was a life long blood donor and it aggrivates me that they throw the blood away. I've recently been diagnosed with breast cancer and I came across your blog looking for a connection between the two. I wish you good treatment.