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low low platelet question
I am on week 21 triple tx (Incivek) and had labs drawn today. Last time labs were done (4 weeks ago) my platelet count was 25,000. When I started tx they were 64,000. When they faxed me the results instead of the platelet count it said See Note*. I emailed my doc and she responded and told me no count was available. I asked if this was a lab error and she said no that she would explain everything to me when I come in the office Wednesday morning. I was just curious if any of you have had this happen before and what it could mean. Are they really, really low?
" I also noticed that giant platelets were shown on my results."
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That may mean that several platelets clumpped together and it looks like one giant platelet. That would make it appear like less platelets than you actually have. So they'll want to repeat the test and do a manual count. What I don't understand is why they're making you wait.
Co
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That may mean that several platelets clumpped together and it looks like one giant platelet. That would make it appear like less platelets than you actually have. So they'll want to repeat the test and do a manual count. What I don't understand is why they're making you wait.
Co
every once in a while during my weekly blood draws in 2008 the lab could not get count and when I asked why they said if technician doesn't shake the vial then the medication in tub does not mix well with blood
They retook blood using another medication to help get platelets and they were 65K,
Good luck to you
Dee
They retook blood using another medication to help get platelets and they were 65K,
Good luck to you
Dee
hello I had something similar, odd sizes so they could not get a good count. I hadt go back they put my blood in another kind of tube, sent it out. My platelets were low I was sent to a hemotologist ho helped me
Wish you the best
Dee
Wish you the best
Dee
The doc just emailed me with the following explanation:
Your marrow is stressed due to the interferon. It is being suppressed, so in defense, your marrow is trying to work harder. When this happens, different size cells form. What the note says is that there are “giant “ platelets and therefore, the count is not accurate, so they did not give one.
I asked if this meant we needed to do something to try to increase the platelets or if we were going to change the medication and she responded with this:
I don’t know what the count is. We will repeat it Wednesday. Are you spontaneously bleeding?
I told her my gums and nose bleed all time, but they have for quite some time now and they know that. I even joked about the red banana I had for breakfast. I am still waiting to hear back from her. I am sure everything is fine, but I haven't ever heard of the numbers not being detected. I may just be a little dramatic right now, but I found it a little alarming.
Your marrow is stressed due to the interferon. It is being suppressed, so in defense, your marrow is trying to work harder. When this happens, different size cells form. What the note says is that there are “giant “ platelets and therefore, the count is not accurate, so they did not give one.
I asked if this meant we needed to do something to try to increase the platelets or if we were going to change the medication and she responded with this:
I don’t know what the count is. We will repeat it Wednesday. Are you spontaneously bleeding?
I told her my gums and nose bleed all time, but they have for quite some time now and they know that. I even joked about the red banana I had for breakfast. I am still waiting to hear back from her. I am sure everything is fine, but I haven't ever heard of the numbers not being detected. I may just be a little dramatic right now, but I found it a little alarming.
Hi, having trouble typing but would suggest with platelets that low I would ask if they could monitor you weekly. Just my humble opinion
I have just asked for a retest as my hgb has gone from 14.8 to 9.9
Doc says since I have finished Incivek that it should rise and stabilize. I asked if we could please check once a week instead of every 4 weeks.
Thank you all for your posts
I have just asked for a retest as my hgb has gone from 14.8 to 9.9
Doc says since I have finished Incivek that it should rise and stabilize. I asked if we could please check once a week instead of every 4 weeks.
Thank you all for your posts
Wow the whole platelet deficient gang is here :)
Mine went to 25,000 as well but they started at 180,000. I used neumega injections and interferon dose reductions to increase them as well. I was in a trial for victrelis and they were not thinking of discontinuing at that level. labs were done every week.
It sounds like promacta or neumega along with an interferon dose reduction are likely in the cards for you. Both have potentially serious sides effects and need to be monitored closely. Promacta is more effective but more toxic to your liver. If you have had issues with fluid retention from being cirrhotic neumega might be a problem. If you have been und since early in tx I would imagine an interferon dose reduction will not be a huge risk for you at this point.
It's great that you are being proactive. From my experience even the best doctors are not always on top of everything with each patient.
Best of luck,
Dave
Mine went to 25,000 as well but they started at 180,000. I used neumega injections and interferon dose reductions to increase them as well. I was in a trial for victrelis and they were not thinking of discontinuing at that level. labs were done every week.
It sounds like promacta or neumega along with an interferon dose reduction are likely in the cards for you. Both have potentially serious sides effects and need to be monitored closely. Promacta is more effective but more toxic to your liver. If you have had issues with fluid retention from being cirrhotic neumega might be a problem. If you have been und since early in tx I would imagine an interferon dose reduction will not be a huge risk for you at this point.
It's great that you are being proactive. From my experience even the best doctors are not always on top of everything with each patient.
Best of luck,
Dave
Wow! Good luck Chris n taccs. Glad to hear positive results from Promacta. I'm on week 22 of 48 and may need to pull a rabbit outta my hat.
My RIBA is still at 800 til we get procrit working. 3rd shot. It really wasgood to hear + feedback! Thnx. Karen :)
My RIBA is still at 800 til we get procrit working. 3rd shot. It really wasgood to hear + feedback! Thnx. Karen :)
I am currently on Promacta before treatment to try to hold my platelets steady (@50k) this time around on triple therapy with Incivek
My last tx was with Infergen and it dropped my platelets to 6k and they stopped me immediately. I was a previous relapser on 2 48-week Peg/Riba tx's and my platelets were ok those times.
Good thing about Promacta, it works; bad thing, it is a hepatoxin so they put me on the lowest dose of 25 mg daily. If they do offer it, they should monitor you VERY closely and for people with hepatic impairment (I am cirrhotic), it is required by the FDA under the 'Promacta Cares' program.
I do a CBC (complete blood count) weekly and in four weeks my ALT, bilirubin, and Alk Phos have been steady and my platelets have increased from 42 to 54 so that is a good sign!
It is expensive (my pharmacy lists it at ~$120/tablet but my HMO only charges me a co-pay of $20 for a 30 day supply) but it may be my best hope for SVR before a transplant which I may end up needing anyway even if I do achieve SVR. The good in that is that I would be clear of the Hep C which can cause cirrhosis in many transplant patients in as little as 5 years.
I am also doing a 4 week lead in with just the Peg/Riba to see how my platelets do before starting the Incivek.
I have faith it is gonna work!
Good Luck!!!
Chris
My last tx was with Infergen and it dropped my platelets to 6k and they stopped me immediately. I was a previous relapser on 2 48-week Peg/Riba tx's and my platelets were ok those times.
Good thing about Promacta, it works; bad thing, it is a hepatoxin so they put me on the lowest dose of 25 mg daily. If they do offer it, they should monitor you VERY closely and for people with hepatic impairment (I am cirrhotic), it is required by the FDA under the 'Promacta Cares' program.
I do a CBC (complete blood count) weekly and in four weeks my ALT, bilirubin, and Alk Phos have been steady and my platelets have increased from 42 to 54 so that is a good sign!
It is expensive (my pharmacy lists it at ~$120/tablet but my HMO only charges me a co-pay of $20 for a 30 day supply) but it may be my best hope for SVR before a transplant which I may end up needing anyway even if I do achieve SVR. The good in that is that I would be clear of the Hep C which can cause cirrhosis in many transplant patients in as little as 5 years.
I am also doing a 4 week lead in with just the Peg/Riba to see how my platelets do before starting the Incivek.
I have faith it is gonna work!
Good Luck!!!
Chris
Thank you all for the suggestions. I will ask about the Promacta. Karen, sure thing!
I also noticed this time that my some of liver function tests have increased again. They were all normal last time (for the first time since I found out I was HCV positive) so I hope it is normal for them to fluctuate a little during treatment and not a bad sign.
I also noticed this time that my some of liver function tests have increased again. They were all normal last time (for the first time since I found out I was HCV positive) so I hope it is normal for them to fluctuate a little during treatment and not a bad sign.
Maybe you can take Promacta. On Promacta, my platelets went from 21k to 80k. It is a very expensive drug, so make sure your insurance will cover it. Ask Dr. what options you have to keep on treating.
-robo
-robo
I'm treating w transplant hospital too. They cut peg to 90 about week 6?? Platelets were 22. I've steadily gone up n they raised me back to 135 about 4 weeks ago.
They did move to weekly labs at that time. I'm at 44 last week n go to Dr Wednesday AM also. They want me on Promacta if they drop again or they won't go full 180 Peg. I remained UND so far and there are no symptoms for low platelets. There is good statistical evidence that 135 Peg is fine for SVR.
Let's compare notes after Dr visit! Karen :)
They did move to weekly labs at that time. I'm at 44 last week n go to Dr Wednesday AM also. They want me on Promacta if they drop again or they won't go full 180 Peg. I remained UND so far and there are no symptoms for low platelets. There is good statistical evidence that 135 Peg is fine for SVR.
Let's compare notes after Dr visit! Karen :)
Thank you for your responses. I will keep you posted.
Hector, although we did talk about the platelets being low going it to treatment we have never really discussed what will actually happen if they drop too low other than the fact rescue drugs may be prescribed. At my last visit when the count was 25,000 I was just told that although they were very low we going to continue on as planned. I was surprised that they waited 4 weeks to repeat the lab work since I was already so low. No mention has been made of stopping treatment or reducing meds so far. They did say if they got below 20,000 then we would consider some options. I am using a hepatologist at a transplant center and consider myself to be very proactive when it comes to my treatment so I am never afraid to question their recommendations and research to see what other doctors and centers do in similar situations. I understand the reasoning behind the decrease in the platelet count, but I was just thrown by the fact that she said no count was available. I also noticed that giant platelets were shown on my results. Of course, I have put my "honorary Google hepatology degree" to use to see what these are and what causes it to happen. I just want to be as educated as possible when I go in Wednesday morning in case I have an alternative to their recommendations. I always like to have evidence to support my claim.
Thanks for your input, you are always so helpful. I hope you are doing well.
Hector, although we did talk about the platelets being low going it to treatment we have never really discussed what will actually happen if they drop too low other than the fact rescue drugs may be prescribed. At my last visit when the count was 25,000 I was just told that although they were very low we going to continue on as planned. I was surprised that they waited 4 weeks to repeat the lab work since I was already so low. No mention has been made of stopping treatment or reducing meds so far. They did say if they got below 20,000 then we would consider some options. I am using a hepatologist at a transplant center and consider myself to be very proactive when it comes to my treatment so I am never afraid to question their recommendations and research to see what other doctors and centers do in similar situations. I understand the reasoning behind the decrease in the platelet count, but I was just thrown by the fact that she said no count was available. I also noticed that giant platelets were shown on my results. Of course, I have put my "honorary Google hepatology degree" to use to see what these are and what causes it to happen. I just want to be as educated as possible when I go in Wednesday morning in case I have an alternative to their recommendations. I always like to have evidence to support my claim.
Thanks for your input, you are always so helpful. I hope you are doing well.
"I was just curious if any of you have had this happen before..."
Yes, I had cirrhosis also and had a 60,000 platelet count to start treatment with. My platelet count at 12 weeks had dropped below 20,000. I was a non-reponder so I stopped treatment anyway but would have to due to the platelet count.
"...and what it could mean."
The interferon has decreased your platelet count. Since you had few to start with your platelet count has been reduced to a dangerous level.
Are they really, really low? "
Yes.
A platelet count of 25,000 is very low. Your hepatologist should reduce the amount of interferon (180 to 90 mcg) you are taking to try to raise your platelet count. Actually if your platelets go below 25,000 treatment should be stopped.
Maybe you have already decreased the interferon? Then they will probably give you a platelet transfusion to bring the count up, although a transfusion will only temporarily raise your platelets.
Since you only had a 64,000 count your treating doc should have had a strategy in mind should your platelet count become so low. This is a very common for cirrhotics who try treatment.
If you notice any bruising under the skin or bleeding from the nose or when you brush your teeth you should notify your doctor.
From INCIVEK label:
"Platelets: Treatment with peginterferon alfa is associated with decreases in mean platelet counts. More patients treated with INCIVEK combination
treatment had decreases in mean platelet values of all grades: 47% compared to 36% treated with peginterferon alfa and ribavirin alone. Three percent of INCIVEK combination treatment subjects had decreases to 49,999/mm3 or less compared to 1% of those treated with peginterferon alfa and ribavirin-treated alone."
"PEGASYS Hematological Dose Modification Guidelines"
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
A normal human platelet count ranges from 150,000 to 450,000 platelets.
One common definition of thrombocytopenia is a platelet count below 50,000 per microliter.
If the person's platelet count is between 30,000 and 50,000/mm3, bruising with minor trauma may be expected; if it is between 15,000 and 30,000/mm3, spontaneous bruising will be seen (mostly on the arms and legs).
Best of luck with your treatment.
Hector
Yes, I had cirrhosis also and had a 60,000 platelet count to start treatment with. My platelet count at 12 weeks had dropped below 20,000. I was a non-reponder so I stopped treatment anyway but would have to due to the platelet count.
"...and what it could mean."
The interferon has decreased your platelet count. Since you had few to start with your platelet count has been reduced to a dangerous level.
Are they really, really low? "
Yes.
A platelet count of 25,000 is very low. Your hepatologist should reduce the amount of interferon (180 to 90 mcg) you are taking to try to raise your platelet count. Actually if your platelets go below 25,000 treatment should be stopped.
Maybe you have already decreased the interferon? Then they will probably give you a platelet transfusion to bring the count up, although a transfusion will only temporarily raise your platelets.
Since you only had a 64,000 count your treating doc should have had a strategy in mind should your platelet count become so low. This is a very common for cirrhotics who try treatment.
If you notice any bruising under the skin or bleeding from the nose or when you brush your teeth you should notify your doctor.
From INCIVEK label:
"Platelets: Treatment with peginterferon alfa is associated with decreases in mean platelet counts. More patients treated with INCIVEK combination
treatment had decreases in mean platelet values of all grades: 47% compared to 36% treated with peginterferon alfa and ribavirin alone. Three percent of INCIVEK combination treatment subjects had decreases to 49,999/mm3 or less compared to 1% of those treated with peginterferon alfa and ribavirin-treated alone."
"PEGASYS Hematological Dose Modification Guidelines"
Platelet <50,000 cells/mm3 - Reduce to 90 mcg
Platelet <25,000 cells/mm3 - Discontinue treatment
A normal human platelet count ranges from 150,000 to 450,000 platelets.
One common definition of thrombocytopenia is a platelet count below 50,000 per microliter.
If the person's platelet count is between 30,000 and 50,000/mm3, bruising with minor trauma may be expected; if it is between 15,000 and 30,000/mm3, spontaneous bruising will be seen (mostly on the arms and legs).
Best of luck with your treatment.
Hector
It seems that if your platelets were too low, your doctor would tell you on the phone and give you some instructions. Best wishes for a positive appt. on Wed. Keep us posted.
Advocate1955
Advocate1955
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