new member with p-vera exon 12

[gvibes]

Hi everyone,

I was recently diagnosed with p-vera. Have been treated by a local hematologist/oncologist with expert consult from doctor at Weill Cornell. Seems like a good combination.

After many phlebotomies, have been on pegasys for a couple of months (started at 45 now at 90 mcg now) which is recently having some lowering effect on my blood counts. Some fatigue and lowering of general stamina but overall doing pretty good. Still iron deficient from phlebotomies.

I have the more unusual Exon 12 mutation and am 617f negative. This seems to result in very high red blood cells and hematocrit but normal platelets and white blood cells. Curious in experiences of others with this form of the disease. Also interested in effects and doses of pegasys and balancing with phlebotomies.

I haven't done much of this type of communicating and probably doing it wrong. Wish the best to all who are dealing these conditions.

regards,

gvibe

[mhos61]

Hi gvibes, and welcome to our happy little forum.

Don’t worry about the ‘communicating.’ You have very eloquently summarised your condition and story to date.

It seems as though you have received excellent health care, which will give you additional confidence.

Pegasys is the best treatment, as it works at a deeper molecular level, and may ‘halt’ disease progression in some people. So, you’re lucky to have been offered it, as cost can rule it out.

Yes, you fall into a minority of around 2% with the Exon12 mutation. I don’t know the relevance of having this mutation. It would be good if your health care team could answer any questions you may have with regards to this.

I have posted a couple of links which you may find helpful, although you seem to be quite knowledgeable already.

Good luck

mpnvoice.org.uk/

patientpower.info/myeloprol...

[gvibes in reply to mhos61]

thank you for your kind response. I have asked the question of the docs, and even at Weill Cornell (NYC- which has used interferon for years and strongly advocates for it), the large historical study of its interferon effectiveness included only a couple of exon 12 participants. Anyway, I am being well studied and I guess we will react to whatever occurs.

I find the forum interesting and helpful. Lots of question emerge as you go through this and I look forward to participating. I guess what I could share how relatively easy it was to get the research institution involved and how important its been for my treatment so far.

take care...

[mhos61 in reply to gvibes]

These Diseases are rare enough without feeling further ostracised by a rare mutation. Hopefully, someone with the same mutation will respond, however with such low percentages don’t be disheartened if that’s not the case.

I think at this point the main thing to take from this is that you’re in excellent hands with regards to healthcare/treatment.

Forums like this one will offer you additional support. We have some professional, compassionate and supportive members who are here for you.

Glad you found us!

[hunter5582]

Welcome to forum. Glad you found your way here.

I have PV with the JAK2 v617f mutation. Originally presented as ET about 30 years ago. Progressed to ET about 8 years ago. I have both erythrocytosis and thombocytosis. I just started on Pegasys last week after a couple of years of phlebotomies. The iron deficiency has proved problematic as well at the secondary PV issues. On to a new plan! I am hopeful of a favorable result.

Do please stay in touch and let us know how things go.

[gvibes in reply to hunter5582]

hunter5582,thanks for the response. Starting this at 68 is different than others who started earlier and complicates seeing symptons different than the aging ones. (a good thing obviously that I didnt have the disease for all those earlier years) Currently, side effects/symptons include from the p-vera, from the iron deficiency caused by my many phlebotomies (8 in 3 weeks) and from the pegasys; on top of all the wonderful aging stuff. You must have your own list - hard to keep them straight

Hope the interferon goes well. My local doc was recommending quickly increasing dose up to max 180mcg, but something felt wrong and I luckily ran it by my MPN guy and he said no way. It seems that the local oncologist can't keep up with all the rare diseases and maybe referenced something that was out of date or not quite relevant. It moves fast. Yikes!

I've been doing pretty well on the pegasys ( I actually had a hole-in-one two weeks after I started - therefore pegasys causes holes-in-ones) and it seems that they may hold me at 90mcg. My syringe is calibrated to a hundredth - wonder why we ultimately settle somewhere slightly more or less one of the standard doses. It seems like you go slow in calibrating the pegasys dose.

I am hoping to get the pegasys working and hopefully get the iron in range and maybe my red blood cells shaped better (maybe alot to ask). good luck with your journey. gvibe

[hunter5582 in reply to gvibes]

I like the hole-in-one theory. Maybe I should take up golf! I think I will get my bow out and see if I can hit the bullseye more consistently.

Amen to sorting out the aging vs PV vs iron deficiency mess. I had to add to that Magnesium and Vit B/Folate deficiency. really good reason to deal with these issues holistically.

Glad to hear you are doing well and the PEG-IFN and that you are getting proper guidance about the dose. Yikes! I am still on 45mcg, but anticipate we will titrate up. Drawing the Pegasus is a bit of an approximation, but I figure close enough is close enough.

All the best.

[Mazcd Partner MPNVoice]

hello gvibes and welcome to our forum. Good to know that you are in capable hands with your team, it is very daunting when you are newly diagnosed, trying to find out as much as you can about your MPN and your treatment, I hope that being part of our community helps you with this. Best wishes, Maz

[gvibes in reply to Mazcd]

Hi Mazcd, thanks for the positive thoughts. I think the community will help. take care gvibe

[Susana7]

Hi and welcome to the forum. I was diagnosed in 2014 (PV JAK2+, with both high platelets and hematocrit), and have been on Pegasys since 2015 with no phlebotomies needed. My starting dose was 90mcg/week, after a year it was reduced to 45mcg/week, then further reduced to every other week, and then to every 3 weeks. Currently, I am back injecting 45mcg every 2 weeks as the platelets went over 400,000 again. I do very well on this dose, with no side effects. At 90mcg I had some hair loss and sore mouth. The recommendation is to have the smallest possible dose that controls your counts so it was a good call not to accept the suggestion to increase to 180mcg. Most MPN patients are on 45mcg or 90mcg doses. I hope the interferon works as well for you as it has done for me! All the best, Susana

[gvibes in reply to Susana7]

thanks Susana, good to know. exciting that pegasys dose may be decreased with time. I seem to be dealing with some fatigue at 90. My next blood test is tuesday to see how I am doing. I have normal platelets and white cell counts so one of the challenges may be keeping those high enough. each case seems pretty unique

take care.