long awaited venasection done yesterday &....

[Tess74]

...I feel a million times better...first morning in ages I haven't woke up with a banging headache and feel more alive, I hope it lasts!! My concern now is getting them every 2 weeks as its rumoured the UK is going into another national lockdown on Wednesday, its taken till last week to get my venesection as my hospital wasn't doing them due to covid...fingers crossed that it won't alter my treatments. I just wanted to post to say "yay I feel great"

[friendofpiglet]

I always get a lift from a venesection.

At my telephone consultation on Thursday, I was asked to arrange a venesection for late November, but with the current and ongoing Covid omnishambles it remains to be seen how that's going to pan out. I do suspect however that It's safer getting a venesection than going to the supermarket.

Glad you're feeling chipper by the way.

Andy

[Tess74 in reply to friendofpiglet]

I'm going to phone my consultants secretary on monday to make sure I can carry on with them as well as chase up my bmb results....I honestly feel 10 years younger...could be the full moon mind you haha

Thanks Andy x

[hunter5582]

Glad to hear you had the venesection. This is not optional treatment for PV. Regardless of COVID, it is essential care for a form of blood cancer. I hope your healthcare system makes wise judgements about essential care of patients with PV.

I totally agree that it is safer to go for a venesection than it is to go to the grocery store. Safer for all concerned, patients/customers and medical staff/store staff. My experience with the phlebotomy lab has been totally positive. Where I am, the lab is totally separate from the hospital. It is the same place as the blood donors go to donate. Very safe and well controlled environment.

Tess - do I recall that you are fairly early in the PV treatment sequence? Every two weeks is pretty frequent for PV control, but not uncommon early on. I was doing every three weeks for close to 6 months initially. Then I got over-phlebotomized and my iron levels were so low they could not be measured and I went into anemia (Ooops!). It took my body over a year with no venesections to recover. (I did not take iron supplements due to the side effects - yuck!!). Now I am back on a venesection sequence that seems like it will be about every 9 - 12 weeks. Time will tell. I am hoping the hepcidin mimetic (PTG-300) will get FDA approval as it would likely be a good option for me. The venesections really do help, but the chronic iron deficiency is not without its own side effects. Beats the alternatives though,

Anyway - all the best to you. Hope you keep getting the care you need.

[Tess74 in reply to hunter5582]

Thanks hunter, i used to get venesection about 6 years ago when by rbc count was first flagged and back then I was first bled every month then it was up'ed to every 2 weeks until my levels went to a more normal level then I was discharged due to being jak2- then a few years after that my blood was picked up by another haematologist in a different hospital who I'm learning now is specialised in mpns and he diagnosed me as primary pv due to low epo and my blood level history and instructed my gp to monitor me but that didn't happen but for quite a while I've been feeling really yuk so pestered my gp surgery for a blood test and sure enough it showed my rbc to be way too high again so now I'm back to the original haematologist but putting my foot down this time until I get some answers as to whats going on with my blood...I am patiently (haha!) awaiting the results from a bmb which will hopefully help with some form of diagnosis and depending on what they show I'm hoping to get referred back to the consultant who has more of an interest in mpns ....

Its a weirdly frustrating journey! Hope the treatment you want gets the approval x

[hunter5582 in reply to Tess74]

Yoda says "Do or do not. There is no try." There is no hoping to get referred to a MPN Specialist. There is going to the MPN Specialist of your choice. The time for answers is now. You have waited long enough.

[Tess74 in reply to hunter5582]

Hmmm but if my BMB doesn't show up with anything then I really don't know where to turn :/

[hunter5582 in reply to Tess74]

Then it is REALLY time to turn to a MPN specialist. My son is looking for answers too. He has what appears to be Idiopathic Erythrocytosis. My daughter and I are both JAK2 positive. He is not. We are all NF1:c5425C>T positive, as is my brother. My brother just completed treatment for a Non-Hodgkin's B-Cell Lymphoma. The NF1 might be related, but we really do not know for sure.

I hope you get answers soon.

[Tess74 in reply to hunter5582]

can/does the Jak2 status change?

[hunter5582 in reply to Tess74]

If you have it then yes it can. The percentage of JAK2 mutated cells can change - JAK2 mutant allele burden. Progression = increase in mutant allele burden. There appears to be a clonal advantage to JAK2 mutated cells over the wild-type (normal) so progression in mutant allele burden can occur over time.

More subtle change is the degree to which JAK 2 mutation is heterozygous or homozygous. That is whether the mutation, which is typically a point mutation (transversion), is on one side or both sides of the JAK2 gene pair. This can also change over time as the genes replicate and errors are made.

If you do not have the JAK2 mutation at all, then there is nothing to change. What may be of interest to you is that there is research underway looking for more mutations of the JAK2 gene than are currently known. There might be other mutations we just do not understand yet. This is why basic research is so important for MPNs.

[Tess74 in reply to hunter5582]

I have been tested twice for jak2, once in 2014 then again in 2017 plus exon12 so I assume thats pretty certain that I don't have it....it'll be interesting to see what all this uncovers and also if my epo is still low...I've no idea when I'm next going to hear from the haematologist but assume I'll get a letter when all my results are in & have been discussed... if its not within the next 2 weeks my patience will run thin and I'll be calling his secretary ha.

Thanks again for all your helpful info x

[hunter5582 in reply to Tess74]

I will look forward to hearing what you find out. I hope the answers do become more clear. Patience is a virtue. Tolerating inadequate care is not. I am sure you know which is which. All the best to you.