Let me introduce myself

[Willympn]

Hello, we live in the small town of Madeira Park in Pender Harbour BC, I have been recently diagnosed with Primary MF Jak2 positive and am on Hydroxyurea. I had a Stent inserted in December 2015 and last October when I once again developed severe Shortness of Breath our Have had 2 transfusions, a week apart when my Hbg nose dived. I have been getting weekly blood cross checks for about 6 months now. Our internist recommended alternating dosages during the week after not so successful trial at 2000mg daily, down to 1500 Mg daily, then 1000Mg daily our Hematologist agreed to this course. We are now alternating 1500 Mg Monday Wednesday and Friday. As well our GP ran all of my meds through a software that he had. It was indicated that the APO Allopurinal I was taking for Gout was conflicting with the Hu. In to week three of this dosage, my Hgb is Low but almost normal, Platelets High but almost normal. No real fatigue, and am back to doing 8-10 hour days in our small family run Satellite and Security Alarm company with the exception of an added assistant who takes the place of my long suffering wife/caregiver who has been with me for going on 47 years now, and allows her to stay home with the books and telephone calls.

I have been using Phoenix Tears, before bed, now and this has really improved my sleep, although I have had night sweats a few times now, I am told it is part of the disease.

[mhos61]

Hi Willympn,

I would like to welcome you to our friendly forum.

I have ET (jak2+) and am also on hydrea and aspirin. I am pretty much asymptomatic. I am nearly 62 and still work part time.

I’m not sure about the hydrea/ allopurinol conflict that you mention. I know that there are people on this forum that take both medication. Maybe they will respond.

On another note you live in a beautiful part of the world. My son lives and works in downtown Vancouver. He sends me such stunning photos!

Mary x

[Willympn in reply to mhos61]

Thank you, Mary. What is the difference between ET and MF. We are still waiting for the referral to a second MPN for a second Diagnosis. Unfortunately the doctor we have chosen is a partner to our present Hematologist and our GP thinks this could be an issue?

[mhos61 in reply to Willympn]

mpnvoice.org.uk/

Take a look on the above link. You will be able to find answers to your question.

Mary x

[Rachelthepotter]

Hi Willympn

I have MF and was originally given hydroxyurea plus allopurinol to prevent me getting gout. The hydroxy breaks down the excess blood cells and the breakdown products ( especially uric acid) can cause the gout. The allopurinol blocks the excess uric acid that causes the gout.

So, I’ve been taking the allopurinol ever since. No gout problems.

Glad you found this forum. The MPN Research Foundation has some good information packs. Here is the link. mpnresearchfoundation.org/M...

Keep in touch.

Rachelthepotter

[jillydabrat]

Hi Willy, welcome to the MPN family. I went on so many sites before I found this wonderful place, full of people who are experiencing what you are. I lived in BC for my years in the Okanagan Valley and miss it every day. Hope you get all the info you need and the friends you would love to have.

Jilly

[Wyebird]

Hats off to your GP

[WileyFrench]

Hi Willympn, I am also a British Columbian (in the Comox Valley) and have ET - diagnosed in 2017, and have been taking hydroxyurea since the beginning of July. So far, no real side effects that I can determine, and the platelets seem to be sloooowly coming down. I hate the whole thing, but I guess I'd hate having a stroke even more! Hope you are doing well.

[wgsutherland in reply to WileyFrench]

Sorry for not replying sooner. I was Dz with PMF in October 2017. I am on Hydroxyurea as well. Mon, Wed, and Friday 1500mg 1000mg the other 4 days. I am also on 9 mg of Warfarin daily, as well as 20 mg of Rabe

Erazole for Barretts Esophegus, and 20mg of Atorvastatin for my Cholesterol. I do blood tests bimonthly at the hospital here in the next town. At first I was doing a Cross match every time and blood tests every week. January 2018 had transfusions for two weeks in a row due to my crashing Hg, but now with manipulation of my meds I am, at last Tuesday’s Bloods, Hg 109 and Platelets 769. The Hg is low and the Platelets high, but I am relatively active again. One of our trades is surveillance cameras, and I recently worked on a 5 story building, up and down the full five flights and as recently as October 2018, a flight of stairs would have me sitting on the top step wheezing. Also , I was Dz last August, with Sleep Apnea, and now have been using a sleep CPAP machine with great success. I am even dreaming again. A sign that I am getting the deep sleep needed for a complete rest. I have learned that , Catch Up Sleep really is a thing, and I am now getting 8 to 10 hours of sleep a night. I can also attribute this in part to the 60 to 70 Mg of THC I take before bed.

We make our own THC gummies now from store bought THC tincture, but we are looking to making our own tincture, down the road, to save on cost. Today we attempt to get a Medicinal license from the Feds. If left to it’s own devices my appetite would be non existent, in fact I have now dropped over 50 lbs and of course could do with another 20 gone. To counter this loss of appetite, I have reverted to ha it’s of 20 years ago, and will vape before meal time at least once a day to stimulate my appetite.

I worry about longevity, and how my passing will affect quality of life for wife. I now have an informal bucket list on this list was a new vehicle. We have done that. We are now making preparations to downsize from our 4 bedroom house in the country to something smaller, low maintenance and closer to the hospital.