Happy to say that the news remains favorable on all fronts.
I reviewed my PV status with the MPN Specialist at Johns Hopkins. I remain in a complete hematologic response at 150mcg Besremi. Tolerance remains the same, with mild lymphopenia, borderline neutropenia, and mild itching. I switched to Zyrtec (cetirizine) to control the itching. It seems to work better than Claritin (loratadine), which is reported in the literature for skin issues. The LFTs remain WNL since I started on the Milk Thistle extract. The MPN Specialist took note of that as I am not the only patient she has on IFNs who have had an increase in the liver numbers. I can't prove that the Milk Thistle is why my LFTs returned to normal, but I am certainly not going to stop taking it.
I told my MPN doc that I feel better now than I did 10 years ago and much better than I did a few years ago when I was using HU and phlebotomies. My quality of life is much better on my current treatment plan. I wish the same for everyone with a MPN, to find the treatment approach that works best for their unique profile.
I also had good news from the last MRI of the brain. There continues to be no sign of tumor recurrence. The flair spot in the anterior horn of the right lateral ventricle does not flag as a concern on the MRI. This could be anything from an Unidentified Bright Object (common benign anomaly associated with NF1), to a cyst, to a tumor in development. This is just something we keep an eye on in the MRIs every 6 months.
I am gearing up for the Summer. I will be volunteering at Brainy Camp again this year. It is a terrific Summer Camp program run by Children's National Hospital for kids with significant medical issues. I have as much fun as the kids do and it is very rewarding to see kids with medical issues just be able to be kids. I am going the the Children's Tumor Foundation NF Summit for patients/families and then to the CTF NF Conference for professionals. It will likely be September before I can go to another MPN Forum. If things work out, I am gong to try to make it to the ASH conference in December. There are some very interesting things happening in MPN research. Would like the chance to hear it first hand.
Wishing everyone all the best on your MPN journey.
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hunter5582
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Wonderful news Hunter! Congrats on such a great report. It's encouraging to hear when things are going well. As another Besremi patient less than 6 months in I feel optimistic. Thank you for sharing your journey, it helps!
I get it through Fullscripts, where it is ordered by my Integrative Medicine doc. It is available through other sources. Suggest consulting with an Integrative or Functional medicine doc if you are interested.
Glad to hear all such positive reports in your ongoing journey...
I am a tad better now too... Monocytes are still way too High, as is C reactive protein & LDH. However, I am feeling much better and all bleeding seems to have ceased now...
Even my fingers, (while still a tad sensitive), have stopped bleeding too... YAY!!!
After briefly visiting the lower realms of "69" on last Platelets, they are now "642". Which for me seems a fine number!
Love the sound of your Kid's "Brainy Camp" too... AWESOME!
I am now working on trying to put together our next MPN Cycling Fundraiser over here, which will (if all goes to plan), will include a Ride of scenic splendour & historical significance, concerning Australia's "First Nations' People".
It will will be called "The Secret "DYARUBBIN" River Ride", a full day's sight seeing of many sacred spaces...
Best wishes buddy...
Steve
(Sydney)
River art by Leanne Redpath (Dharug women & artist)
I've now been on ruxolitinib for 10 months, and today's CBC numbers show ongoing stability: HCT 39.1%, HGB 13.0, RBC 4.19, PLT 426, and WBC 16.73 (and that is a significant reduction from the ~20 I'd been seeing for the past few months). My current dose of ruxolitinib (10 mg once daily) seems to be working for me.
You are certainly keeping busy. These days, our days are determined in large part by our grandsons' activities. At ages 5 and 8, they keep their parents and grandparents occupied! That being said, we are now talking about taking an early fall trip to Europe. That will be a very good change for us, and as we approach 80, it's increasingly clear that we have to do such things while we still can.
Glad to hear that the RUX is working for you. We are very fortunate to have better options than were available only a few years ago.
the time with the grandkids is great! My granddaughter (soon to be 13) is coming for a visit soon. I am looking forward to the visit.
Definitely go to Europe for a holiday. I did a cruise in the Mediterranean last Summer. It was great! Cruising is a great way to see various part of Europe.
I started at 10 mg twice a day; CBC numbers quickly dropped but so did HGB, resulting in serious anemia. My MPN specialist reduced the dosage from 140 mg/wk to 100, then to 70. I am aware that the manufacturer's recommendation is to take pills twice a day, but 10 mg once a day has worked very well for me so far. If I need to go to twice a day dosing, I will split pills rather than incur the much higher current cost (in the US) of taking 5 mg pills twice a day. Once the Medicare drug costing limitations go into effect next year, I will discuss with my MPN.
Sorry to hear about losing your brother to the tumor. I was fortunate in that my brain tumor was a Grade 1 Pilocytic Astrocytoma, negative for all 27 cancer genes tested. At 3 years out from resection, there is still no sign of recurrence. I am at elevated risk for recurrence due to having Neurofibromatosis Type 1, which is what caused the tumor. I am hopeful to be done with bran tumors.
That's really good news . You are a valuable source of information on this forum and I am very grateful for all the detailed information you give us . Wishing you good health for many more years to come and enjoy the summer camp with those young people . They are an inspiration as are you 😘
That's super news Hunter - very pleased for you that you're doing so well. How you manage all your levels and the analysis of medical information is just amazing. You are a role model for us all. Enjoy your summer.
Such fabulous news Hunter. I am so very pleased for you. What a journey you have had. Enjoy the summer and with Brainy camp. I too work with children with brain tumours in England. The Christie Hospital in Manchester. The Brain Tumour Charity are great as other charities are for our children. Our children are inspiration. They are little warriors powering through the medical field. I really wish you well. Thank you for all the support you give, you're so knowledgeable. X enjoy your holibobs.
Congratulations! It is very uplifting to hear stories of success and positivity. Keep up the great work, and please continue to share updates with us. 👍
That is spectacular news. So happy for your success on this treatment and grateful that you continue to share all of your extensive knowledge with us!!!
What a wonderful report! I continue to be impressed with how you weave together guidance from both integrative and traditional medicine to find a pathway that is right for you! You are doing an amazing job of managing several serious diagnoses - and your willingness to share your knowledge with others generates inspiration. Thank you!
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