Some good news...
Call from my haematology consultant, she is very pleased with my results, she is stopping my chemotherapy today, she said my JAK2 gene count is down to 2% and if the numbers etc remain the same she will stop my weekly injection of interferon, she said I was in remission, she doesn't understand how it's got that good.
Wow, that is amazing! I didn’t know you could be in remission with this disease. Its always good to hear good news on this site.
Combination of Jakafi dan INF provide 9% total remission.
I am awaiting travel ban ease to Malaysia to get this therapy
You mention chemotherapy, this usually means HU pills. Are you also on that, or just INF?
The various INF studies have shown complete molecular (gene) response (CMR) in a small set of patients, and substantial response in many or most. So you are in the lucky CMR group. It takes usually at least three years for a full effect.
Below are the results from the 5 year Ropeg Continuation PV interferon study. You likely got an earlier type of INF, PEG which can provide similar benefits but does not have this level of detailed study. These are averages, I believe some were below 2%.
Further if you need to restart INF it is likely to continue working as it was.
I don't have the respective reports handy but could look if desired.
We look fwd to know how you are doing.
That is very good news! Molecular remission is the best possible outcome with the Interferons. You must be a super-responder. Congratulations.
Some background.
Fully diagnosed in 2014 my numbers were
WBC 12.7
Hb 18.2
HCT 0.614
Platelets 1143
Neuts 9.59
They started on aspirin and venesection, that didn’t have much of an effect so they started om Hydroxy, I was eventually on 17 pills a week, a high dosage. It took 4 year and loads of venesections (30) to get my HCT down to a reasonable number but not low enough, so in October 2017 they added interferon.
My numbers stayed well about my target of 0.45 for hct, still more venesections now about 65 in total.
In January 2020 my hudroxy had been reduced to 3, my numbers remained close or below my target.
In January 2016 I went very jaundiced very quickly, diagnosed as pancreatic cancer, turned out to be gallstones, and had my gallbladder removed, sigh of relief.
I have 2 elderly parents living 200 miles away, dad had a heart attack and survived 3 years ago. Last October had a fall, broke his hip, surgery, survived heart attack in hospital and passed away, mum had mild dementia, day after dads funeral, she had a mental collapse and was sectioned, she is now in a care home and is struggling with long Covid.
In the meantime I was shielding, I was walking my dog in the woods, blacked out, got cut up rolling around ion brambles, went to hospital, Bloods, EEG and a head CT, they discovered a cyst in my brain, no driving, neurology referral, nothing found, but my pulse keep going up and down, ranging from 46 to 150, so cardiology, they did some tests, nothing major, so more tests, if I remain incident free I can drive again after Monday..
So I am pleased that my PV is possibly in remission…
Yesterdays numbers
WBC 4.2
Hb 1.40
HCT 0.43
Platelets 220
Neuts 2.38
Plan is to stop Hydroxy,then continue with interferon, another DNA test in December, interim blood test and then a full review in February, they will order another ultrascan..
So there you have it…
Pic of my legs after my blackout
Ouch - “but you should have seen the brambles…”Great news re. remission, though!
That's a lot of cuts. I had similar to my arm at age 5, I rode a bike right in to the bad bushes, didn't know how to steer yet.
When I get cuts these days it's a chance to check my bleeding. A bit thin from the aspirin.
I have no memory of the event...
You blacked out, that's scary. Any more info on your cyst?
The cyst could have been there from birth, had a head CT and MRI, they are not concerned, the worst part was being told I had one.
Blackout, no further in finding out the cause, neurology clear, had an eeg, the report said they found nothing, they described the test result as unremarkable
They have identified that my pulse keeps dropping to below 60, and then sometimes without a cause go up to over 150 , no explanation.
I have had a 24 hour BP monitor, nothing found. 7 day heart monitor, some small issues. I'm currently wearing a 14 day halter to try and identify issues, I'm due to have a cardio echocardiogram next week.
I have not been driving fir months, if I remain clear I can drive again from Monday.
Just before I blacked out, we changed motorhomes, we bought a 7.6 m 4.2 tonnes left hand drive manual. But as I can't drive, my better half has had to adapt from her 1.4litre right hand drive, automatic Toyota Yaris.
My haematology consultant is aware of all this, she wants another echo of my liver and spleen, my surgery has arranged for a scan to check for AAA.
I have 2 properties for sale 200 miles away, one sold within 4 days, so that needs clearing.
As my dad died without a will and my mother doesn't have any capacity, I am having to go through the Court of Protection to sort out their finances and probate, thats very slow, expensive and frustrating.
Besides that, not much happening really..
Goodness you have had some tough years all round, I feel for you - so even more pleased for you re the success of Peg for your MPN so well done, what a success for you and much needed good news after a rough run, all the best
What a journey you’ve been on, this is fantastic news. So pleased for you xx
Fantastic news!
Great news! Praying it continues for you.
Your road has been very rocky. So sorry for all your heart ache, but there is light at the end of your tunnel.
That’s a great result, I’m absolutely delighted for you. You deserve to have some good news after what you’ve been through.
Do you know what your allele burden was before reduction?
Good luck at your next consultation!
No idea, the result was from a BMB and the number was not recorded. New test is blood based, so I will know in December
It seems UK is skimpy with the Allele testing. With the discomfort of a BMB they should get that info. Good that you'll have it from now. I have from both blood and BMB. (14-19%)
I see you took HU for a long time to control your numbers, as the INF took hold you can cut it down and then out. That's great.
Looking at old posts on MPN voice, INF was not discussed that much about 4 years ago, and now it is quite common to see it here. That is progress.
Apparently Allele testing by blood is only a recent test in this area,so I'm pleased that it's not a BMB. They stopped my venesections about a year ago.
Yes interferon took a long time to kick in, I'm glad I've kept all the data, makes progress easy to track.
Just wish I wasn't so tired .
That’s amazing news, so pleased for you.
Great news.
I am very happy for your remission.
May all of us could achieve the same result
Wow! What a journey! Such a rollercoaster! Wishing you continued remission.
My numbers in a graph, Ive managed to keep my numbers and the higher and lower range.
I'm looking at your old posts. How are you doing lately? I see you had lots going on.
From the info you have in this thread, it seems you responded very well to the HU, in ~ 6 months for PLT and WBC while HCT required venesections (PLB). Are you still having PLB? From the smoother HCT plot lately it looks like you're having fewer or none any more.
Hello shiftzz - know you’ve had some very ‘up and down’ times and so good to hear your news - what a great result. Hope all continues going well.
Very best Anne-Marie x
great news, very pleased for you, hope your leg is better, it looks very sore. Maz x
GREAT!
Fantastic news! Hooray🙄🥂
I really hope things continue to be good for you
That is really good news.
Great news! So sorry to read about your parents and also your fall. Best wishes Fran
Congratulations, very good news. Please continue to keep us all informed as you continue on this journey. Best.
That's great news! Good to have some positive news after all you've been through. So glad that Peg has worked well for you. It's working well for my brother too (with no side effects) but I have awful fatigue. Please keep us all informed about the next stages. It helps us all to understand our condition.
And I meant to add that your record keeping is brilliant!
🥳🥳🎈Best Wishes 😃 Have a great time in Malaysia🏖️✈️
Good news!!
Good news!!
Good news re allele burden
Good news... and not so good news 😏
