Constant battle with platellet count

[moondog52]

I'll try to keep this short, but I just don't know what to do next, and I'm not happy with my GI's answers. I don't hear much on this topic from others here.

I'm a 2ber diaged last Oct ... PCR 5.5 milion. ALT and AST high, biop showed "some" cirrohsis. Plats were at 69,000/ml so I had to do transjugular biop.

Started Pega-Intron .5ml, Riba 1200mg on 4/13/07. Plats dove to 27,000 so I had to stop tx. I had to inisit on another PCR ... came back UND. SO I spent the next month eating like a horse (aaah food is good again!) and got plats back up to 70,000 for 2 weekly CBCs in a row ... so talked to GI ... he wanted me to go full dose again. I said can't we reduce dse so maybe it will go better this time? No
PCR ... he seems VERY reluctant to do them (I have no idea why). Well, at .35ml
Peg and 800mg riba, I was at 39,000 last Thursday, did CBC today which I'm pretty sure will show me under 30,000 again ... tomorrow makes 3 full weeks this round. He wants me to do another week ... with could put me at 10,000 by next week!
I may get CBC results tomorrow and will make decision based on that.

And I want another PCR, but his NP ays he doesn't like to do those very often!
I told her, if they aren't in the 30's I'm going to stop tx again and I WANT another PCR viral load test. Then if it's still UND I plan to wait until my plats reach low normal levels before starting again.

I think I'm making the right call here. My Hemotologist agrees, but suggests starting again at even lower dose next time ... He's an Oncon also and says they have to adjust dose all the time. He says bone marrow is probably ok 'cause of the rate the plats came back up after stopping tx.

Obviously I am a great responder ... but this yo-yo tx is just unnerving me.

I really REALLY wanted to get the whole program done with this year, so I'm pretty bummed by this platellet issue.

Incidentally, all cancer tests (PET scans) came back negative.

I just wanted to ask if others have had to deal with this (and how).

As a side note, I'm thinking of find another GI or maybe switch to my hemo for tx, but I'm not sure how well that'll work out or if it will cause insurance issues.

Thanks for any wisdom you might be able to impart ...

[copyman]

one of the reasons docs do not order pcr's that much is the insurance companies will not pay for frequent pcr tests. another reason is what protocol that doc is following. most only do 12 week,24,36,48. but i would not treat with a doc that did not at least order a 4 week pcr which i feel is the most important. as far as your low platelets why would your doc not order a rescue drug so you can stay on the treatment? hope i helped some. best of luck

[moondog52]

Considering the circumstances, I (and my hemo - but he's not the txing doc) see the 4 week pcr test essential.

What rescue drug increases platelletes? I've been told by the docs there is none for plats. My BC's are a 'lil low but not enough to warrant Procit which is for RBCs and the hemocrit/glob. My research comes up with the same results. All of tem are produced by bone marrow .... plats can *only* be produced by that ... there's no way to increase them short of a transfusion that I know of, and that's just a very temporary solution to fix critical levels or if there was some surgery I had to do.

I appreciate the input however. I'm just going on what I've read and what the doc's have told me. Fortunately I have a great response to the tx ... but it just seems to be telling my spleen that eating plats is an "all you can eat affair".  

I can't possibly be the only person with this problem. I wish a V-8 a day would fix it ;)

[copyman]

i may be wrong but i thought procrit can also increase the platelets. i have read other people treating in similar cicumstances as yours and it seems their was something they were able to do. i have flagged jmjm or someone else will answer i'm sure.

[mikesimon]

I don't think this drug is available yet but you should check.

From: Clinical Care
http://www.tiny.cc/jjS4N

Oral Platelet Growth Factor Eltrombopag

Peter Ferenci, MD:
McHutchison and colleagues[21] presented data from a phase II study evaluating the efficacy and safety of eltrombopag, an oral platelet growth factor, in subjects with HCV-associated thrombocytopenia (Capsule Summary). In patients with cirrhosis, thrombocytopenia prevents the use of antiviral therapy. This study demonstrated that eltrombopag increases thrombopoietin production in a dose-dependent manner and thereby increases the number of platelets. This agent was evaluated in a study of subsequent antiviral therapy; before treating patients with peginterferon and ribavirin, participants received eltrombopag for 4 weeks, and for a further 12 weeks during treatment. The oral compound was then stopped for 4 weeks. No data were given on the effects of the antiviral therapy, but with eltrombopag at a dose of 75 mg/kg, 90% of patients experienced a = 100 x 103 platelets/µL increase. At Week 4 of eltrombopag treatment the platelet count could be raised above 100,000 cells/µL (median 246 x 103 platelets/µL), enabling all patients treated with that dose to receive full-dose antiviral therapy. This is one of the most important new studies in terms of its applicability to clinical practice, and there is a large amount of data with this agent in cancer-induced chemotherapy that we may find useful in understanding its potential.

Mike

Nezam H. Afdhal, MD:
We have attempted to manage the side effects of interferon for a long time. The hematologic side effects can now be effectively managed in many patients by using hematopoietic agents to treat anemia, and as we discussed earlier, viramidine is associated with reduced rates of anemia compared with ribavirin. In addition, the use of filgrastim for neutropenia is a common practice. Eltrombopag has a distinct advantage over other agents because it is given in a once-a-day oral dose. It does not act by increasing thrombopoietin but binds to the intracellular component of the receptor; thus, it is a receptor agonist, and importantly, it does not appear to cause the side effects associated with increased thrombopoietin production. For example, other products such as interleukin 11, oprelvekin, and thrombopoietin cause muscle ache and fluid and sodium retention; by contrast, none of these side effects were observed with eltrombopag, and the potency was high. It can increase platelet levels up to 5-fold in a dose-dependent fashion, with platelet counts rising to normal levels and being maintained at that level during therapy. This drug will be very helping in treating cirrhotic patients and for preventing patients who experience thrombocytopenia on treatment from having to discontinue their interferon-based medication.

[mikesimon]

I never heard that Procrit can elevate platelet count and I took a lot of Epogen and it never helped mine any. Mike

[Bill1954]

Thrombocytopenia appears to be problematic, especially when patients attempt treatment.

As a stage 3-4, my platelets are slightly suppressed, but still in the 100-120K range, so I haven’t had to modify treatment (yet!). The drug oprelviken (brand Neumega in the U.S.) is used in some degree in cancer chemo to increase platelet production. We had a poster here last year that was using Neumega, but the side effects were rough to say the least, and it seems that most HCV docs stay away from it. One of the noted Sx is an associated decrease in hemoglobin, something that we don’t need with the current combo therapy. However, you might check with your hematologist and get his take on the risk-benefit analysis. Here’s a web page that discusses side effects:

http://www.rxlist.com/cgi/generic/oprelvek_ad.htm

Another interesting product currently in clinical trial is Eltrombopag. Although preliminary data looks promising, I’m unaware of it’s current FDA status. An overview of it’s use in HCV patients is available here:

http://www.hivandhepatitis.com/2006icr/ddw/docs/060906_c.html

One more item that you might consider (although it’s definitely invasive) is splenectomy. Here is an article that discusses this procedure and it’s clinical utility involving HCV patients. Here’s the addy:

http://www.hivandhepatitis.com/hep_c/news/2006/091906_c.html

From the paper: “Conclusion: The authors concluded that, "Splenectomy in patients with hepatitis C cirrhosis can be done safely to allow application of antiviral treatment and potentially avoid transplantation."
They added that splenectomy "may be considered in patients with Child's-Pugh A cirrhosis, no prior abdominal surgeries, and with non-1 HCV viral genotype." It was not clear from the report why the procedure would not be expected to also benefit patients with genotype 1 HCV.”

I’m sorry to hear your struggling with these problems; good luck in your efforts, and keep us posted as to your progress. Take good care,

Bill

[Bill1954]

Mike- our posts crossed. How is the world treating you these days? Got the bike out this summer?

Take care,

Bill

[mikesimon]

The world has been good to me lately but I'm not sure I know exactly how to handle that type of treatment. I rode my chopper down the road and back. I am selling that bike. My Harley is in the shop and it's driving me nuts. I want the best brakes in the universe and I keep having to spend more money every day to achieve that. I am almost there - just another $1000 or 1200 and it should stop on a dime. I am a little hesitant to ride anything on two wheels unless it stops better than it goes. I hope you're feeing well and joyous Bill. I always read your stuff - always. Take care and be well, Mike

[moondog52]

You folks are great! Thanks for the ideas. Yeah, Procrit doesn't do jack for platelets. But I am definitely going to look into that Eltrombopag. I'm in Tucson, so if it's available I should be able to get a line on it. I read somewhere that
calcium and vitamin K help "some" so maybe I should have those levels checked (don't see that on a CBC).

My CAT scans did show both my liver and spleen slightly enlarged (I have numbers someplace) but the spleen was just thought to be a result of the liver and the virus. At 1st they said scan showed portal hypertension then after a review said "no". Swelling in my liver went right down that 1st 4 weeks ... I expected the spleen to follow, but maybe not. Maybe time for another scan of that.

I'll be having another long talk with my GI on Tuesday I reckon.

I feel like I'm so close yet so far away from a successful tx. I don't suppose anyone (2b) has remained SVR after only 4 then 3 weeks of tx?

Pains me (literally) 'cause I used to hike and cycle a lot and miss it so much.

[mikesimon]

I will tell you this although I am not recommending treating with low platelets: my count was in the low 20,000's for a prolonged period during treatment and my transplant team never said a word about it. Perhaps they are accustomed to seeing counts this low but they didn't reduce Pegasys or even mention anything about it. So, it is possible to treat with a low count - just don't ride motorcycles or do any knife throwing. Mike

[moondog52]

Thanks for that input. Well, I won't make a decision until I see yesterday's CBC. I could already be (and expect to be based on how bad  feel) around 25k. Since I seem to loose about 15k each week that's why I said I might be at 10k next week.

Last time (after 4 weeks and plat count of 27k) I apparently had a nosebleed in my sleep .... blood traveled down my throat, into my mouth and coagulated all around my teeth. Shocked the h3ll out of me when I went to brush in the morning!

That Eltrombopag sounds very promising.

[mikesimon]

Mine bottomed out at 23,000. I would expect yours to bottom out too but I really don't know. I just haven't seen them drop to zero or even into the teens so maybe yours will stop around 20,000 - I would hope so anyway. Good luck to you, Mike

[orphanedhawk]

Hey Moondog,
  I've had yo-yoing platelets and changed doctors because of it. My first doc was going to stop my tx when the platelets hit 33. My current heptologist/researcher/transplant specialist, said he'd let them go as low as 25 or so. I took super K, a variety of Vitamin K. My plats did increase before going down again. I've tried the exercise prior to doing labs approach. It does work to get them up slightly.
  The only known drug I am aware of to increase platelets is nuemega. My doc wouldn't prescribe it because of the negative sxs AND he writes scripts as if he owns the Pharmacy!
   The important thing for you to know is the main danger in having low platelets. It isn't so much that you'd bleed to death if you get cut. The danger is internal bleeding, especially if you hit your head. So no falling down and breaking your crown.
   I see the Gish group and they do clincs throughout N.California and Vegas and give written  second opinions for MD.'s.   Good luck.

[moondog52]

Thank you for that insight ... yeah if I can see a plateau of 25k I wouldn't be so nervous about it. I did find out that my GI has only (???) treated 16 patients in 8 years, but they all supposedly cleared. I think I'll give the vita K a try.

I called both my GI and Hemo, and asked about availability and their thoughts on Eltrombopag, have to wait for a call back. NP's I reached didn't know of it.

Also, I just bought a pretty expensive elliptical trainer (just arrived) thinking some exercise may be what I need too. That way if I feel wiped out in 5 or 10 minutes all I have to do is sit down on the couch and watch another movie ... Netflix loves me ;)

[copyman]

like i said in my previous post i was not sure but i knew i had read some posts about something helping with platelets, it must have been  nuemega. the others have givin you very good advice. good luck with the recent blookwork

[orphanedhawk]

Is a moondog a coyote?  I've got them here too though they look different then the ones I saw when we lived in Sonoita.
   I just re-read your post. The exercise to increase platelets is a short lived ‘solution.‘  Just take a brisk walk before your labs. If while at home exercise makes you exhausted, stop. That’s your body telling you it is putting energy elsewhere. If exercise energizes you, then keep going. It is easy to get into a habit of tiredness.
       I should've mentioned that I am also a geno. 2 w/cirrhosis. My dosage of interferon was reduced when I changed doctors. You might like to look at the following study:

   http://www.hivandhepatitis.com/hep_c/news/2006/120806_b.html
      
      Stay cool and hydrated,               OH

[GoofyDad]

As I understand it that office has used it 'a few times in situations where [they] really didn't want to dose reduce [early in treatment]'

I can't remember the early in tx part - I may be making that up.....