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I Have Waldenstrom Disease, I Was Treated With Pembrolizumab Which
Question: I have Waldenstrom disease, I was treated with Pembrolizumab which triggered Red Pure Aplasia. Due to Pembrolizumab my immunity system changed and attacked reticulates and therefore I lost 1/3 of my body hemoglobin monthly. My understanding is, that I did not get damaged by my bone marrow in this process. Later was my system inhibit and restarted by corticosteroids. My question is: how much time is needed for my immune system to fully recover and could be full recovery or partial only.
Till today we do not fully understand the immunity system if you can point me to an article about my problem I would be happy to read it.
Thank for answer
Till today we do not fully understand the immunity system if you can point me to an article about my problem I would be happy to read it.
Thank for answer
I have Waldenstrom disease, I was treated with Pembrolizumab which triggered Red Pure Aplasia. Due to Pembrolizumab my immunity system changed and attacked reticulates and therefore I lost 1/3 of my body hemoglobin monthly. My understanding is, that I did not get damaged by my bone marrow in this process. Later was my system inhibit and restarted by corticosteroids. My question is: how much time is needed for my immune system to fully recover and could be full recovery or partial only.
Till today we do not fully understand the immunity system if you can point me to an article about my problem I would be happy to read it.
Thank for answer
Till today we do not fully understand the immunity system if you can point me to an article about my problem I would be happy to read it.
Thank for answer
Brief Answer:
It may take years and recovery may still be partial
Detailed Answer:
Hi
Thanks for your query.
As you said it yourself, we don't understand the immune system fully. Pembrolizumab is a new drug and much of its side effects are unknown. There a few case reports of immunotherapy induced pure red cell aplasia. From them we know that this is a serious complication.
Treatment involves stopping of pembro and starting steroids which may lead to some improvement in few patients. Full recovery may not be there and all patients may not respond.
The immune effect of pembro can last for years even after stopping so it's difficult to predict when the bone marrow will recover.
I am providing link to one article but it's mostly medical jargon. You can go through the cases mentioned in it to have some idea.
https://www.thejh.org/index.php/jh/article/view/507/417
Hope this helps.
Regards
It may take years and recovery may still be partial
Detailed Answer:
Hi
Thanks for your query.
As you said it yourself, we don't understand the immune system fully. Pembrolizumab is a new drug and much of its side effects are unknown. There a few case reports of immunotherapy induced pure red cell aplasia. From them we know that this is a serious complication.
Treatment involves stopping of pembro and starting steroids which may lead to some improvement in few patients. Full recovery may not be there and all patients may not respond.
The immune effect of pembro can last for years even after stopping so it's difficult to predict when the bone marrow will recover.
I am providing link to one article but it's mostly medical jargon. You can go through the cases mentioned in it to have some idea.
https://www.thejh.org/index.php/jh/article/view/507/417
Hope this helps.
Regards
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
Brief Answer:
It may take years and recovery may still be partial
Detailed Answer:
Hi
Thanks for your query.
As you said it yourself, we don't understand the immune system fully. Pembrolizumab is a new drug and much of its side effects are unknown. There a few case reports of immunotherapy induced pure red cell aplasia. From them we know that this is a serious complication.
Treatment involves stopping of pembro and starting steroids which may lead to some improvement in few patients. Full recovery may not be there and all patients may not respond.
The immune effect of pembro can last for years even after stopping so it's difficult to predict when the bone marrow will recover.
I am providing link to one article but it's mostly medical jargon. You can go through the cases mentioned in it to have some idea.
https://www.thejh.org/index.php/jh/article/view/507/417
Hope this helps.
Regards
It may take years and recovery may still be partial
Detailed Answer:
Hi
Thanks for your query.
As you said it yourself, we don't understand the immune system fully. Pembrolizumab is a new drug and much of its side effects are unknown. There a few case reports of immunotherapy induced pure red cell aplasia. From them we know that this is a serious complication.
Treatment involves stopping of pembro and starting steroids which may lead to some improvement in few patients. Full recovery may not be there and all patients may not respond.
The immune effect of pembro can last for years even after stopping so it's difficult to predict when the bone marrow will recover.
I am providing link to one article but it's mostly medical jargon. You can go through the cases mentioned in it to have some idea.
https://www.thejh.org/index.php/jh/article/view/507/417
Hope this helps.
Regards
Above answer was peer-reviewed by :
Dr. Vaishalee Punj
Dr. XXXXXXX
Thank you for your answer. This article from USC, California you mention is absolutely excellent and for me very readable. I did not read any better. My reaction to pembro was very similar as mentioned cases, after first pembrolizumab infusion I was losing over 30% hemoglobin/month and my neutrophils went down due to treatment with corticosteroid 50% bellow minimum. It was a dangerous Clinical Trial, my physician spent 10 seconds! checking my complex blood test, and he did not do any thinking about it. Pembrolizumab is dangerous side effects and in 2017 were 2 trials from 249 patients were 29 death and in the second trial from 301 patients 19 death. Pembro is in use from the year 2007(2006), that was possible to get full knowledge about side effect and run safe Clinical Trial. I went into without any financial needs and today I am feeling very bad about it. Then I was treated 8 months later, I had seven cycles of Rituxan and it pushed my platelets practically to zero levels as you can see on the diagram, my bone marrow system did not recover yet. I can digest articles from NIH, JAMA, or BLOOD, so your language could be for me more technical and I would prefer it. All over I liked your answer very much, but my favorite question: what you personally do, would do in Clinical Trial in such situation, how much time you would spend to thinking about my blood test?? would you put it in the search and research and verify mode?? I am not asking this to judge, rather get a reference point for me.
Thanks
Thank you for your answer. This article from USC, California you mention is absolutely excellent and for me very readable. I did not read any better. My reaction to pembro was very similar as mentioned cases, after first pembrolizumab infusion I was losing over 30% hemoglobin/month and my neutrophils went down due to treatment with corticosteroid 50% bellow minimum. It was a dangerous Clinical Trial, my physician spent 10 seconds! checking my complex blood test, and he did not do any thinking about it. Pembrolizumab is dangerous side effects and in 2017 were 2 trials from 249 patients were 29 death and in the second trial from 301 patients 19 death. Pembro is in use from the year 2007(2006), that was possible to get full knowledge about side effect and run safe Clinical Trial. I went into without any financial needs and today I am feeling very bad about it. Then I was treated 8 months later, I had seven cycles of Rituxan and it pushed my platelets practically to zero levels as you can see on the diagram, my bone marrow system did not recover yet. I can digest articles from NIH, JAMA, or BLOOD, so your language could be for me more technical and I would prefer it. All over I liked your answer very much, but my favorite question: what you personally do, would do in Clinical Trial in such situation, how much time you would spend to thinking about my blood test?? would you put it in the search and research and verify mode?? I am not asking this to judge, rather get a reference point for me.
Thanks
Dr. XXXXXXX
Thank you for your answer. This article from USC, California you mention is absolutely excellent and for me very readable. I did not read any better. My reaction to pembro was very similar as mentioned cases, after first pembrolizumab infusion I was losing over 30% hemoglobin/month and my neutrophils went down due to treatment with corticosteroid 50% bellow minimum. It was a dangerous Clinical Trial, my physician spent 10 seconds! checking my complex blood test, and he did not do any thinking about it. Pembrolizumab is dangerous side effects and in 2017 were 2 trials from 249 patients were 29 death and in the second trial from 301 patients 19 death. Pembro is in use from the year 2007(2006), that was possible to get full knowledge about side effect and run safe Clinical Trial. I went into without any financial needs and today I am feeling very bad about it. Then I was treated 8 months later, I had seven cycles of Rituxan and it pushed my platelets practically to zero levels as you can see on the diagram, my bone marrow system did not recover yet. I can digest articles from NIH, JAMA, or BLOOD, so your language could be for me more technical and I would prefer it. All over I liked your answer very much, but my favorite question: what you personally do, would do in Clinical Trial in such situation, how much time you would spend to thinking about my blood test?? would you put it in the search and research and verify mode?? I am not asking this to judge, rather get a reference point for me.
Thanks
Thank you for your answer. This article from USC, California you mention is absolutely excellent and for me very readable. I did not read any better. My reaction to pembro was very similar as mentioned cases, after first pembrolizumab infusion I was losing over 30% hemoglobin/month and my neutrophils went down due to treatment with corticosteroid 50% bellow minimum. It was a dangerous Clinical Trial, my physician spent 10 seconds! checking my complex blood test, and he did not do any thinking about it. Pembrolizumab is dangerous side effects and in 2017 were 2 trials from 249 patients were 29 death and in the second trial from 301 patients 19 death. Pembro is in use from the year 2007(2006), that was possible to get full knowledge about side effect and run safe Clinical Trial. I went into without any financial needs and today I am feeling very bad about it. Then I was treated 8 months later, I had seven cycles of Rituxan and it pushed my platelets practically to zero levels as you can see on the diagram, my bone marrow system did not recover yet. I can digest articles from NIH, JAMA, or BLOOD, so your language could be for me more technical and I would prefer it. All over I liked your answer very much, but my favorite question: what you personally do, would do in Clinical Trial in such situation, how much time you would spend to thinking about my blood test?? would you put it in the search and research and verify mode?? I am not asking this to judge, rather get a reference point for me.
Thanks
Brief Answer:
appropriate investigation for anemia required in clinical trial
Detailed Answer:
If patient develops anemia during treatment, I usually do serum iron profile, B12, folate levels, Coombs test and treat accordingly with supplements or erythropoietin. If there is further fall and no evidence of hemolysis, I do a bone marrow.
I continue the trial drug as per trial protocol. Eg, if protocol mentions, you can continue trial drug as long as Hb>8 then I follow that. Sometimes, in case of unusual phenomenon I have to take a call out of the trial protocol too. In that case, patient gets off the trial based on investigator judgement.
Hope this helps. As I don't have (and can't ever have) full details of your case, I can't comment on what I would have done exactly in your case.
Regards
appropriate investigation for anemia required in clinical trial
Detailed Answer:
If patient develops anemia during treatment, I usually do serum iron profile, B12, folate levels, Coombs test and treat accordingly with supplements or erythropoietin. If there is further fall and no evidence of hemolysis, I do a bone marrow.
I continue the trial drug as per trial protocol. Eg, if protocol mentions, you can continue trial drug as long as Hb>8 then I follow that. Sometimes, in case of unusual phenomenon I have to take a call out of the trial protocol too. In that case, patient gets off the trial based on investigator judgement.
Hope this helps. As I don't have (and can't ever have) full details of your case, I can't comment on what I would have done exactly in your case.
Regards
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
appropriate investigation for anemia required in clinical trial
Detailed Answer:
If patient develops anemia during treatment, I usually do serum iron profile, B12, folate levels, Coombs test and treat accordingly with supplements or erythropoietin. If there is further fall and no evidence of hemolysis, I do a bone marrow.
I continue the trial drug as per trial protocol. Eg, if protocol mentions, you can continue trial drug as long as Hb>8 then I follow that. Sometimes, in case of unusual phenomenon I have to take a call out of the trial protocol too. In that case, patient gets off the trial based on investigator judgement.
Hope this helps. As I don't have (and can't ever have) full details of your case, I can't comment on what I would have done exactly in your case.
Regards
appropriate investigation for anemia required in clinical trial
Detailed Answer:
If patient develops anemia during treatment, I usually do serum iron profile, B12, folate levels, Coombs test and treat accordingly with supplements or erythropoietin. If there is further fall and no evidence of hemolysis, I do a bone marrow.
I continue the trial drug as per trial protocol. Eg, if protocol mentions, you can continue trial drug as long as Hb>8 then I follow that. Sometimes, in case of unusual phenomenon I have to take a call out of the trial protocol too. In that case, patient gets off the trial based on investigator judgement.
Hope this helps. As I don't have (and can't ever have) full details of your case, I can't comment on what I would have done exactly in your case.
Regards
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Thank you Dr. XXXXXXX I think that you were honest to me, I will strongly demand again the investigator to let me see the protocol , I asked for it already without any luck. I do not wish you waste your time on me and if you do not mind, I will contact you again in the future hopefully with the happy end of the story.
Thank you Dr. XXXXXXX I think that you were honest to me, I will strongly demand again the investigator to let me see the protocol , I asked for it already without any luck. I do not wish you waste your time on me and if you do not mind, I will contact you again in the future hopefully with the happy end of the story.
Brief Answer:
All the best
Detailed Answer:
Hope all ends well.
Regards
All the best
Detailed Answer:
Hope all ends well.
Regards
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Brief Answer:
All the best
Detailed Answer:
Hope all ends well.
Regards
All the best
Detailed Answer:
Hope all ends well.
Regards
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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