Platetes down to 16??

[michelehen]

Had a voice mail from my Prim.Care Doc today when I got home from work and she said my lab work from yesterday showed the platetes were down to 16 and contact my G.I. Doctor, my Potassium was down to 3, HBG was 8 sodium low, calium low, and also anemic. This pass week I have been coughing so bad that it makes me throw up, I will take my 14th shot tonight and was UND at 12 wks.  been short of breath alot, but seems to be alittle better as long as I don't cough.  Any suggestion, I won't beable to get my Hept C Doctor til Tuesday?  I am on Potassium pills now.......thank you for any advice.

Michele

[michelehen]

Hi everyone just got back from my G.I. Doctor went to Hematology Doctor yesterday afternoon, my platelets went up to 65 - hgb 9.5, wbc 3.9, rbc 3.07 hct 34.1, mcv 111.1(H), mch 34.2(H) MCHC 30 (L), rdw 16.5 (H) MPV 13.0    Don't know half od the stuff what it means, my Hematoloist said I should stay on treatments and he was going to run test more to see about putting me on the shots, he is concern about my anemia and hgb why it keeps dropping, when I started with him in May it was 18.....so I go back to him next Monday.

My GI Doc took me off treatments completely!  Said I did good the first 7 wks no sides and now blood work dropping and going up and he seems to this I will stay UND even after 12 wks.  I said how - with having Liver Disease, then he said maybe you don't have cirrihorsis, check my Liver enzymes to see what they were when we started in the end of May and he said wow those were very high.......then went onto to say he will order another Cat Scan and come back to him in 3 months.......my hema doctor said I should stay on treatment, so my GI doc will call him today........think I need to get another opinon, or can my Hematology Doctor treat me??

I'm so upset with all this mess - thank you all for your help here the last few weeks....

Michele

[PJ1966]

So sorry Michelle.  I can not imagine going so far and then having to stop.  I just had my one week visit today so a long way to go.  I did end up with a UTI after one week but already just with one pill, I already feel great but of course have to take the full 7 days.  Gave blood for testing my one week progress.  I I agree that your doc should of been monitoring you better.  My doctor said that once undetected, it doesn't hurt to reduce the riga when necessary.  He said that would be his first protocol if I drop to a point of being dangerous.  He said it usually works.  I can't imagine how you must be feeling with such low platelets.  That is really low.   Take care and rest and get your strength back.  The experts on this forum have great advice for you.  Monitoring is important.
Take care.

[Advocate1955]

#what if's#

[Advocate1955]

I'm sorry to hear that you had to stop treatment Michele. I know that is tough news to take. There's no way to know if things would have turned out differently if...but when your hgb started to drop and you had symptoms of anemia, your doc should have been monitoring you and treating you with dose reductions, meds, or transfusions. If he had, maybe you would have been able to complete treatment. It's impossible to know. But either way, your doc didn't follow the recommended management for anemia. I don't know as much about platelets. With your labs bouncing around the way they have been, I wonder what might be going on. The what it's really don't matter now, because your current health has to be addressed. Later your PCP can do another PCR and see if you've remained UND. If not, when your health is stabilized, you should be seen by a hepatologist to determine next steps.
Advocate1955

[pooh55811]

It is good that you were UND at week 4. Normally that is a good predictor of response. Normally people who are UND at week 4 have a much higher SVR rate than those who are still DET at week 4.

Here is the problem.

You have cirrhosis. Cirrhotics have a lower SVR rate than non-cirrhotics.

Because you have cirrhosis, you should be doing 48 weeks of Tx, not 24 weeks of Tx. (12 weeks Inc., Inf., Riba and then another 36 weeks of Inf and Riba.)  

If I calculated correctly, you have done 13 weeks of triple treatment. That is barely more than a quarter of the treatment time. At least you got all of the Incivek in, but generally speaking, one needs Inf and Riba for a longer period of time.

There is no way to say for sure what the outcome will be. There is always a possibility you could attain SVR. But, to be honest, doing only a quarter of the recommended treatment is not a good omen.

By the way, why would you think you had 24 weeks of treatment? Is that what your doctor told you even though you have cirrhosis? Cirrhotics do 48 weeks of treatment even if they are UND at week 4. The doctor should know this.

Personally, I think you need to find a good Hepatologist at a large medical center/transplant center. With your level of fibrosis/cirrhosis, and your complications, you need to have a Hepatologist manage your medical care. Hepatologists are the only doctors who are experienced in managing cirrhosis and its complications. In addition, they have the knowledge and the experience to manage the care of a cirrhotic while that person is on treatment for Hep C.
If I were you, I would find a large medical center/transplant facility and make an appointment with a Hepatologist at the facility.

[michelehen]

Hi pooh55811

I remember you telling me to do a redraw and yes I did and yes it was undectable at 4 wks, yes I have cirrhosis and I have an enlarge liver.  My VL when started was 2.5million, sorry to say he didn't tell me the last count.  Anything else I can help with please feel free to ask, ty for your help.

[pooh55811]

It would help us answer your question about your chances if you can give us the following information:

Were you Detectable or Undetectable at 4 weeks? I remember you posted and you were detectable at 4 weeks but it was an early draw and you were going to get it redrawn. So what was the result of the redraw done at 4 weeks. Was it Detectable or was it Undetectable.

In one of your posts, you mentioned that you have cirrhosis. Do you have cirrhosis?

These factors influence length of treatment time as well as SVR rates and that is why it is important for us to know the answers.

[michelehen]

Hi everyone -  this is where I stand:

Friday my plateletes went down to 16 my HGB was 8
Saturday morning plateletes went up to 20 HGB was 9.9

Today Wednesday my platelets are 44 and HGB was 7

My Doctor called the Oncologist I was going to he is also an Hemotologist he is the one that DX me with the Thrombocytopenia, he talk to him about starting me on some kind of shots, and he told him it would take to long to get approval from the insurance company and to have me come see him on Monday.  I think what upsets me is if he would of been doing the CBC weekly like he should have prehaps there would of been some kind of pattern to everything dropping.  He said being UND I could still stay that way after 12 weeks, that in Europe they have a great rate at 12 wks, but that the USA doesn't approve it yet and makes everyone go to at least 24 wks???

I have Liver Disease, I'm so worried about it attacking my Liver again.

Has anyone heard if someone had SVR after 12 wks of treatments and stayed that way?  Thank you all for being so positive for me and all this info, you really are one in a million!!

(((((((((HUGS))))))))))) to all!!

Michele

[his3707]

Sorry to hear this!  What about a transfusion wouldnt that help the platelet count while this gets under control.  Would a good hepatologist be able to rectify the situation without pulling her off treatment completely?  Sounded like he was pulling her off permanently.

[8nickers8]

They told me that when the hemoglobin drops too low you get really tired and out of breath.

[Conanhcv]

Hope all is well, and they figure out what is going on.
Prayers with you!

[pcds]

When I was on tx and very sick with anemia, my doc actually had me not take interferon one week.  He called it drastic and it was.  It turned out to be ok.  Anemia was bad for me and I needed helper drugs early on and through most of tx.  Weekly labs are a must.  I have concerns that too many doctors w/o experience with hepc are treating.  This is a complicated dance, hep c tx, labor intensive for docs.  You only get one shot with the triple med regime, best handled by experts not novices.

[Dannyboi7]

Sorry the hear that michelelen.This might be of interest to you.


EASL- Eltrombopag Increases Platelet Counts During HCV Treatment in Patients With Thrombocytopenia.

BARCELONA, Spain -- April 25, 2012 -- Eltrombopag increases and maintains platelet counts throughout treatment with pegylated interferon (PEG IFN) alfa-2b and ribavirin (RBV) among patients with thrombocytopenia and chronic hepatitis C virus (HCV) who would otherwise be ineligible for antiviral therapy.

In addition, eltrombopag was associated with clinically meaningful improvement in sustained virological response (SVR)...

http://hepatitiscnewdrugs.blogspot.ca/2012/04/easl-eltrombopag-increases-platelet.html

[HappyByChoice]

Sending you lots and lots of hugs!!  We're all hoping for the best for you and waiting to hear that everything has been been resolved in your favor!!
Hugs,
Janette

[PJ1966]

I'm glad to hear they took you off, although I know this must be the worst news for you.   It would be devastating to all of us, but you have to do what is best for your survival.  You are really sick and hopefully you can start back up asap.  You're going to be okay.  Just relax and rebuild.   Your body needs its strength back.
Best to you and looking forward to hearing more about how you're doing.

[jules2551]

Hang in there Michele....hopefully the specialist will be able to figure out what is going on immediately and rectify the issues.  Take a deep breath and take care of you.  This will all work out :)

[michelehen]

Thank you so much for all your information - I just seen my Doctor and he took me off treatment completely!  My platetes are continuing to drop, he is arranging for more blood work and specialist to see.  All I can do is sit here and cry - I worry so much because my Brother died from this.  

I only had 10 wks left!!

I promise to keep you all updated......maybe it's just short term being off meds??  Have a blessed week everyone and lets fight this beast one way or another!

Michele

[sadmommyjoy]

I agree with HECTORSF. Please see a Hepatologist.

[HectorSF]

'Went to ER easrly this morning and it actually went up to 20 and guess what my GI Doc was oncall there.'  'he wants to treat the platetes and he told me if I promised to not do anything that would cause bursing or bleeding I could go home and not have the transfussion yet.  So I am to go to his office first thing on Tuesday and gave me a list of things to watch for in the meantime.'

'He was shock he couldn't believe it'

This is example of why we tell all cirrhotics that they can only be treated for hepatitis C properly by a hepatologist who understands all the ramifications of treatment in a patient advanced liver disease.

20,000 is still dangerously low! You are taking a risk with your health. Your doctor should have stopped treatment according to the label on the peg-interferon at 25,000 and standard protocol and he should have been monitoring your platelet count and reducing your interferon dosage when it went below 50,000. After your next injection your platelet count is likely to go lower again.

I am sorry to say your gastroenterology is ill informed about the dangers of thrombocytopenia, proper treatment protocol and treating patients with cirrhosis. Anybody that has cirrhosis and undergoes treatment needs to be monitored closely with blood tests. Bleeding in a person with cirrhosis can be very serious. Depending on how extensive your cirrhosis and portal hypertension is, you could have bleeding from varies that not only can be life-threatening but will make your long term prognosis much poorer. Obviously your doctor has not properly informed you of the risks you are taking. It is your life and your call.

Clinical Care Options
'Thrombocytopenia in Hepatitis C: Impact on Patient Management
Source: Treatment of Thrombocytopenia in Patients With Chronic Hepatitis C: Potential Impact on Treatment Candidacy and Outcomes'

http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/Thrombocytopenia/Module/Thrombocytopenia%20in%20Hepatitis%20C/Pages/Page%201.aspx

'Thrombocytopenia, defined as a platelet count < 150,000 cells/µL, is a common hematologic abnormality in patients with chronic liver disease, including chronic hepatitis C virus (HCV) infection. The prevalence and severity of thrombocytopenia increase with hepatocellular damage.[1-4] It occurs in 64% to 76% of patients with cirrhosis and/or severe fibrosis, compared with 6% of noncirrhotic patients with chronic liver disease.[1,2] The clinical relevance of thrombocytopenia is coupled with the abnormal homeostasis and platelet dysfunction seen in chronic liver disease and affects both clinical care and patient outcomes.
Moderate thrombocytopenia, defined as a platelet count of 50,000-75,000 cells/µL, can increase the risk of bleeding during invasive procedures such as liver biopsy, particularly in patients with coexistent coagulopathy, and may prevent optimal therapy of chronic HCV infection with peginterferon-based therapy.
In patients with cirrhosis, severe thrombocytopenia (platelet count < 50,000/μL) is associated with life-threatening complications and has been recognized as a risk factor for developing complications of cirrhosis, such as variceal bleeding and death.'

'The product labels for both formulations of peginterferon recommend dose reductions for patients with platelet counts between 50,000 and 80,000 cells/µL and discontinuation of therapy if platelet counts fall below 25,000-50,000 cells/µL.'

*********************************************************************
2.4 Dose Modifications

If severe adverse reactions or laboratory abnormalities develop during combination PEGASYS/COPEGUS therapy, the dose should be modified until the adverse  reactions abate. If intolerance persists after dose
adjustment, PEGASYS/COPEGUS therapy should be discontinued.

Table 3, Table 4, Table 5, and Table 6 provide guidelines for dose modifications and discontinuation of PEGASYS/COPEGUS based on laboratory  abnormalities, patient’s depression status, and cardiac status.

Table 3 PEGASYS Hematological Dose Modification Guidelines:

Platelet <50,000 cells/mm3   - Reduce to 90 mcg  
Platelet <25,000 cells/mm3   - Discontinue treatment

Adult Patients
When dose modification of PEGASYS is required for adverse reactions (clinical and/or laboratory), initial dose reduction to 135 mcg (which is 0.75 mL for the vials or adjustment to the corresponding graduation mark for
the prefilled syringes) is recommended. Dose modification to 135 mcg per week can also be achieved by using a 135 mcg/0.5 mL strength disposable autoinjector. Dose reduction to 90 mcg (which is 0.5 mL for the vials or
adjustment to the corresponding graduation mark for the prefilled syringes) may be needed if the adverse reaction persists or recurs. Following improvement of the adverse reaction, re-escalation of the dose may be
considered [see Warnings and Precautions (5) and Adverse Reactions (6)].

Platelets

In the hepatitis C studies, platelet counts decreased in 52% of CHC subjects and 51% of CHC/HIV subjects treated with PEGASYS alone (respectively median decrease of 41% and 35% from baseline), and in 33% of CHC subjects and 47% of CHC/HIV subjects receiving combination therapy with COPEGUS (median decrease of 30% from baseline). Moderate to severe thrombocytopenia (less than 50,000 cells/mm3) was observed in 4% of CHC and 8% of CHC/HIV subjects. Median platelet counts return to pre-treatment levels 4 weeks after the cessation of therapy.
*********************************************************************

Hector

[Advocate1955]

I am glad your labs are up a bit too, and I'm glad to hear your primary care doc will be doing CBCs every week. Take care, and check in with your doc every week and ask for copies of your labs. You mentioned trouble breathing and being short of breath back around week 7 of treatment, so you were probably anemic back then. If your platelets keep falling, lr if your hgb stays low, it will be too risky to stay on treatment, so please take care of yourself. It sounds like your GI doc is not monitoring you closely enough and that could jeopardize your treatment.
Advocate1955

[BoceprevirGal]

  Hey, I am glad your labs went up a bit :)
I had the breathing problem also, when I had my HGB in the 9's, but no cough.
  My platelets before treatment were at 120, then dropped to 90, and stayed at 90-95 for most of my Treatment, but when I had my End of Treatment labs, they had fallen to 66.
   Please be very careful with yourself right now.
just make sure to rest, and I used to take slow walks, only around the block, when I had trouble breathing~  Good Luck, Michele

[streamline569]

In my case my platelets dropped to 20 I think it was the first or second month can't even remember now then came up and stabilized. Hope the same for you. I was on procrit as soon as I hit 10.8 and stayed there the whole treatment. Good luck hope it all works out.

[michelehen]

No he wasn't - but my Primary Care said yesterday she is going to run CBC every week on me now, she wants me to see a Hemotoligist??  Mispelled.....sorry.