I just saw both the Neurologist/Neurofibromatosis specialist and MPN specialist yesterday. The news was good on both fronts.
Neurology Update. At 4.5 years out from surgery, there is no sign of recurrence of the brain tumor. The data on this type of glioma (Pilocytic Astrocytoma) indicates that if there is no recurrence once past the 5 year point, then there is only about a 1% chance that the tumor will reoccur. We will do one more 6-month interval MRI, then go to a yearly schedule to monitor. I am very pleased with this outcome. The NF Specialist I see is one of the world's leading experts on Neurofibromatosis. She combines advanced knowledge regarding the science of NF medicine with being gifted in the art of healing. I am blessed to have her on my care team.
MPN Update. The Besremi dose increase to 175mcg appears to have done the trick. As of the last CBC, HCT is back at target (HCT = 44.9%). Neutrophils came back up to reference range (NEUT = 1.60). The mild lymphopenia remains stable and acceptable. There has been no change in side effects with the 25mcg dose increase. The plan moving forward is to continue at the 175mcg dose and monitor at 8-week intervals. If things stabilize, we will push the monitoring out further. If the erythrocytosis pushes HCT > 45% again, then we will make a decision to either opt for a phlebotomy or try another dose increase to 200mcg. We will base the decision largely on the level of leukopenia I am experiencing.
The MPN specialist is fine with either decision and will let me decide. I will of, course, consult with her about the decision. This is what shared decision making is all about. Actively engaging in treatment decisions in a relationship based on mutual respect is empowering and results in the best outcomes. I particularly appreciate this doctor's willingness to take time to discuss the issues, answer questions, and respect my wishes about my own care. My regular hematologist operates the same way. I am blessed to have such an excellent MPN care team.
The MPN Specialist is putting me into contact with one of her colleagues who is doing a Familial MPN study. This researcher is looking at the potential role of telomere dysfunction in acquiring the JAK2 mutation. She has done research prior to this study on this topic that is very interesting. They are specifically interested in our family situation since my daughter and I both have the JAK2 mutation with a diagnosed MPN. My son has what appears to be idiopathic erythrocytosis with no JAK2 mutation detected. My brother was diagnosed with a Non-Hodgkin's B-Cell lymphoma several years ago. All of us also have the NF1 mutation, in which telomeres may play a role in tumors. Needless to say, we are all interested in what there is to be learned on this topic.
We are fortunate to when we are able to create a strong care team. We are also fortunate to live in a time when so much progress is being made in understanding and treating MPNs. We all have the opportunity to make a difference in our own care and in the care of others with MPNs and other diseases. We can advocate for ourselves in how we manage our own care. We can advocate for advancing MPN treatment through our collective efforts and supporting organizations like MPN Voice who advocate on our behalf. We can all make a difference.
Wishing all of you all the best and success on your journeys
Written by
hunter5582
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Thanks, Hunter, for your inspiring post. You’ve always been so supportive on this site and people have learned so much from you. I’d be interested to know how the study goes with your family.
Also, very glad to hear that your neurologic exam went so well. May you continue to do well.
Thanks for the support. Unfortunately there too often is no recovery path nor even effective treatments in Sjo at this time. Hence my nagging on any added risk of "catching" it.
What an uplifting report to read and so thankful to know all things are well. My father also had an MPN but sadly in those days there were not the treatment options available that there are now, and the fact I too have ET jak 2 looking at the familial route would have been something I would have been interested in. I also lost my brother to a brain tumour 6 years ago, so to read your news is so encouraging as I also have a friend in recovery stage from surgery with this right now. Keep up the amazing work you do here encouraging everyone. I'm on hydroxy and had Mpn follow up yesterday and from last test to this platelets back in normal range and all bloods good, so much to be thankful for.
So glad to hear your good news, it is wonderful indeed. You give so much to us all on this group and you always know, both the science but also what we are going through. I can't say how happy I am for you and your family, sending you a big whoop of delight. Stay in touch.
That is such wonderful news & thank you for sharing & inspiring others. I always look forward to your posts which are very knowledgeable & also easy to understand. ❤️
Congratulations! Very good news of encouragement to start this day. The results of your hard work are awesome. Thank you for sharing and once again helping to educate others. Stay safe!
wow Hunter, lots of fantastic news there for you. I’m very happy that things are so positive for you. You always manage to inspire me (and many others) to really investigate what is going on in the MPN world that unites us here. You demonstrate what you suggest to us all, that being actively involved with our treatment providers is so important.
I thank you for how you have definitely helped me.
congratulations on getting the all clear, that must have been stressful waiting. CBC looks good, it’s interesting that on Interferons many still report low ferritin despite not venisecting
It takes a long time for iron levels to restore when they have been depleted. The body does not absorb iron easily. Most iron comes from recycled RBCs. My iron levels are gradually coming up, but it is over the course of years. Of course, more iron = more RBCs = more Besremi needed, so it is a balancing act. I am fortunate to find a balance at 175mcg.
I’m not sure they take that long to restore, I think it depends on what meds your on, I know patients on Peg for years and ferritin stays very low, on Rux mine recovered pretty quickly , my ferritin went from around 8 and MCV 56 on venisection to ferritin 60 and rising and MCV 85 and rising on Rux
Well you embody the saying “you can’t stop the waves but you can learn to surf” appropriate from out here in Santa Cruz, Ca. You get me back up every time I lose balance. You are a gift to us all. Thank you again. Marti.
This is so good. I agree with you about a great relationship with the doctors. It is a partnership, and we need to support each other and be able to discuss any issues we have.
You are amazing. Thank you for sharing. I always find your posts so helpful too. The power of teamwork is crucial. Sending enormous good wishes to you. Stay strong. You are a super advocate X
So great that you've gotten good news. Indeed, we all want to be boring patients!How wonderful that you're also participating in that familial MPN study. It's through the willingness of study participants that we will learn so much more about these diseases and hopefully pave a path towards better medications or cures. Thank you for always sharing your advice and being so selfless with your time!
Thanks for your update - it all looks very positive and of course you are totally on top of it all which is no surprise. You are the best example of how to be your own advocate with an MPN. Great news.
Such wonderful and encouraging news on all fronts. And thank you for such great insight as always. I have learnt so much from all your posts. Stay well 🥰
Although fairly new on the forum I‘ve already benefited greatly from your advice and such extensive knowledge: sincerest thanks. Sharing your personal experience on a very difficult journey over the last 4.5 years and the promising outcome is certainly encouraging for anyone else going through a particularly hard time. I‘m so happy for you and wish you all the best as you move forward
Fantastic news, Hunter! Very glad to hear. It sounds like you have an amazing team on your side and you are taking control of your health. That is a great lesson that we all have a say to a certain extent in how we are treated, even though it is so hard to be heard at times.
Congratulations Hunter, you deserve all the good news you can get. You help so many people on this forum including myself. I have learned so much from your posts. God bless.
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