Good Results after Pegasys treatment

[Stoosh]

hi all

In my previous note I mentioned that my platelets count was over 450 for more than about 15 years and recently haematologist recommended me to take Pegasys to treat PV . I started it in end of July. In late August was on holiday overseas and last week had the first blood test after the treatment.

Amazingly and to the surprise and to full satisfaction of my specialist platelets dropped to 273 from 543( the last result before treatment).

The Haematocrit was 0.48 ( an increase from 0.46 in the last result before treatment)

The Haematocrit was different results earlier 0.52(12/7/23), 0.40(20/9/23 after venesection), 0.46(18/6/24) and 0.48 on the recent test

Hence specialist requested me to have another venesection ( I have done that this week ) and increased the time between Pegasys treatment time to a month from two weeks . (90 mcg).

The specialist was v happy with the results from treatment .

Now asked me to do a blood test in Dec and consult him prior to Christmas holidays .

As another matter I would like mention with this treatment .

Some of you who read my previous post would have noticed that I mentioned I have severe thigh and leg ache and pain and I mentioned it as killing me . Also I indicated that I don’t know whether it is side effect of this treatment or something else ( mean time I have made an appointment with neurologist as well - appointment in Nov).

However , after the venesection this week the thigh and leg ache and pain has completely gone at least so far . Also the imbalance occasionally I faced while walking after treatment commenced also gone so far after the venesection . I tried to investigate through literature whether my observation is really due to the venesection or a coincidence .

in addition in the last blood test the pathological comment was “ large platlets present” . This is the first time in my all blood tests recorded like that .

Hence I investigated it through ChatGPT . According to that my observations findings are possibly correct and the reason for all such as large platlets, thigh and led ache and pain reduction, not experiencing imbalance while walking are all contribute due to venesection and the larger platlets was due to adjustment of Pegasys treatment. In other words , the side effect reduction may be due to reduced density by venesection and good oxygen flow in thigh muscle and blood flow to brain .

Whatever the reason , the venesection has helped to reduce side effect as well as hopefully will bring Haematocrit to below 45 or 46. Specialist told me he would like to see it below 46 as well as Platelts below 450.

I am sharing the above as a way of letting you all my experience as well as to share the first hand happy results. Will keep you posted near Christmas again.

Bye now.

[hunter5582]

Glad to hear that you found symptom relief from the venesection. Your theory that imp[roved blood flow may be why you see the improvement seems reasonable. Hyperviscosity can cause multiple symptoms, including muscle pain in the legs.

The large platelets can be directly caused by abnormal megakaryocyte activity associated with the PV. Since it is a new finding, suggest you review the issue with your hematologist for a proper explanation.

Wishing you all the best.

[Stoosh in reply to hunter5582]

Thanks Hunter

Certainly I will wait to see the next blood results and will raise the question with the haematologist.

He has seen the last results however hasn’t mentioned any thing about larger platlets during last consultation. During the last consultation I was not aware of larger platlets. At the end of consultation I received a copy of the blood results report. When I arrived home when I looked at the test report I noticed that.

Any way once again raising that and I will discuss with him in the next consultation.

I haven’t heard what is abnormal megakaryocyte . Can you pl Hunter let me know what that may be.

Once again thanks for your suggestion.

[hunter5582 in reply to Stoosh]

Megakaryocytes are the cells in the marrow that produce platelets. The production of megakaryocytes is overactive in MPNs due to dysregulation of the JAK-STAT pathway. In addition, the megakaryocytes often show abnormal morphology, such as being larger or more irregular in shape.

Please let us know what you learn when you talk to your hematologist.

[Stoosh in reply to hunter5582]

Hi Hunter

Your responses to every ones is very valuable to all. I noticed you have been doing a wonderfull service to all in the group.

How are you ?

In addition who are you? I mean I would like to know your background. Not personal details but your background etc.

I have read your responses to many people. All those who received the responses felt the same way as I do.

Hence my question “who are you” mean background.

Cheers

Love

Will keep you posted after the next consultation.

[hunter5582 in reply to Stoosh]

Thank you for your kind words. I have received a lot from my participation in this forum. My own walk with PV and other health conditions has been an interesting and unique health learning opportunity. I have learned a lot from others on this forum. I often deepen my own understanding when trying to answer questions.

My own story starts over 30 years ago. I was diagnosed with two conditions at that time, Essential Thrombocythemia and Neurofibromatosis Type 1. Both conditions proved relatively benign compared to others with these conditions. For many years I largely ignored them, until I could not. Staring in 2013, things started to change. I had a large spike in gastrointestinal issues and severe reactive thrombocytosis. It turned out that this is when the ET progressed into PV but my hematologist misdiagnosed me as still having ET. It was not until 2018 that I was properly diagnosed.

Between 2018 and 2020 I had four surgeries, including heart and brain surgery. The NF1 had caused a brain tumor which had bled internally. The first of the surgeries, a Green Laser PVP/TURP did not have a positive outcome, largely because I did not properly advocate for myself. I reached an epiphany that I would have to change how I managed my healthcare. I realized that I needed to better educate myself and become my own best advocate.

I am fortunate in that I have been a behavioral health professional for many years. My background in clinical psychology taught me how to evaluate research. My work in mental health/substance abuse programs had taught me how to advocate for others. I realized, somewhat belatedly, that I needed to apply these skills to my own healthcare. I set on a course to learn more about MPNs, NF, and other health issues I was managing. I also worked to develop better self-advocacy skills. This was essential when my insurance company denied access to Besremi when it was first approved. My doctor could not get it approved on appeal. I was able overturn the decision by filing my own appeal. It took a lot of work and understanding how to advocate for what I need.

My own journey has taught me that educated and assertive patients receive higher quality care. Passive patients who do not understand their conditions do not. I am a firm believer that we can all learn to effectively manage our MPN and other health conditions. We must be our own best advocates. We do not have to do this alone. We have resources, like this forum, that can help us on this journey.

I feel blessed to have others to walk with on this journey. There can be significant challenges managing a MPN and other health issues. We need all the resources we can find to have a successful outcome. This forum offers us the opportunity to share information, support and understanding. We do not have to walk alone. For me, this is the most important lesson of all.

Wishing you and all of our MPN family all the best.

[Stoosh in reply to hunter5582]

Hi Hunter

When reading about your journey , one of the things I learnt about you is that with all different hardships and trouble you have been through you seems to have strong positive approach with good human natured will to succeed. That might have evolved through your training and your profession.

While reading I found it difficult not to shed water from eyes .

All in all it is v hard for a person as well as his/her family to go through. Having been through you are a role model for others who undergo some difficulties whatever may be that form to trust , believe, and honestly work towards success. The life is basically in some form to contribute to human, society, nature, and to future generations .

I believe you are also a strong spiritual person . Whether you believe that or not I believe you are and in the way you are participating and doing all services in this forum. It is very commendable for what you are doing.

Also God ( whichever/whatever form one believes doesn’t matter) is always there for every human when need arises. He is always there every minute in every ones heart and also certainly at difficult times too.

The other point you mentioned about every individual needs to take care of themselves and look after their health and learn more of it is an important thing.

Regarding PV , I am new to it even though I had mild Thrombocytosis for more than 15 or 20 years.

With your encouragement and by learning from this group I will learn more about PV and MPN .

Thanks for sharing your journey to all in this forum .

Best wishes .

Love

[Anag]

what wonderful news for you! That makes me happy also! Thank you for sharing.

[william-Indo]

Happy for your good result.

Based to my experienced, you should keep hydrate all the time to help your HCT in normal line.

Hope no more venesection in future.

Best whises

[Mishie14]

thank you Stoosh for your update. I appreciate being able to learn from others. Your attitude is an inspiration. I did not handle HU nor anagrelide side effects well but with a slow and low dose approach with peginterferon I have done well. Venesection has not been needed but your experience is excellent reference if and when it is. Hoping you continue to have positive results come December tests. Stay safe!