Hello my friends. It’s a while since I wrote about my various problems and said aid report back. My main problem was pain under ribs in right abdomen, which caused bad nausea and ache in pelvic area. First Ultrasound scan did not reveal anything untoward, apart from prominence in the collecting system in the Right Kidney, which ,my GP and Haematologist did not comment on but said my kidneys were alright, only a small cyst on the left side of liver detected which wasn’t of concern. However, after another bout of pain lasting over a week, with UTI symptoms for which I received antibiotics, I finally got an appointment out of the blue for a C.T. scan. I had no idea who had referred me for this but it turned out to be the Gastroenterologist my GP referred me to several months previous. I managed to obtain the CT report through applying to Patient Access which has not shown any abnormalities in kidney or any other organs ,thankfully, but I eventually recently wrote by “snail Mail” to GP stating I was concerned what to do if the flank pain and nausea returned as it nearly always began at the weekend when no Doctor was available. Result is, I’ve been given prescription for antibiotics to keep at home should the problem occur. I’ve not seen a doctor, GP or Specialist all this time. I’ve had regular 2 monthly calls from Haematologist by phone and on the last one 2 weeks ago I asked her if I could cease taking my 500 mg Hydroxy for 1 or 2 months to see if I felt better and I must say that I definitely feel much more like my ‘old self’ . Constipation has gone, much more energy and better appetite. So…..she is ringing me on 28 th Nov. After a blood test but says my platelets mustn’t go above 450 . We discussed alternative treatment and I asked about having Peg Interferon which she seemed to approve of. I’m hoping my platelets haven’t gone up too much as I’d like to wait till January before going on new treatment. One last thing, I’ve noted my Bilirubin levels are very high but no Dr. has commented since I saw GP in March. The numbers range from 30’s to 43 and 45 on 3 rd October. I wonder if anyone has readings like this? This is my up to date news. Sorry for the long Saga . Regards and best wishes to you all. Fran
CATCH-UP ET JAK2+: Hello my friends. It’s a while... - MPN Voice
CATCH-UP ET JAK2+
Good to hear you are on top of things Fran,and no problems with kidneys etcSounds sensible to have prescription to hand.
Hope someone can throw light on Bilarubin
Best wishes
Carolyn
It is really appalling that no doctor has seen you in person given what you are reporting. Recurrent pain is not OK. Much of what you are reporting is consistent with adverse effects from hydroxyurea. Suggest you crosswalk your symptoms to the list yourself.
online.epocrates.com/drugs/...
I am glad to hear your doc is willing to consider other options. Some of us do much better on Pegasys than HU. I hope your experience is the same.
Suggest you also review your treatment goal of platelets < 450. For many with ET there is no reason to set this goal. It depends on your unique MPN profile, something best reviewed with a MPN Specialist. Note some docs now use 600 when a set number is used. silvermpncenter.weill.corne...
The emerging notion is that it is actually the delta (degree of change) that matters the most. None of can know what is best for you in terms of a treatment goal for treating ET. That is best worked out with a MPN Specialist based on your profile, goals and risk tolerance.
All the best my friend. hope you continue to feel better.
Thank you once again Hunter for your reply and interesting links which I am looking at. What a list of possible adverse reactions Hydrea has! Yes, I am convinced some of my troubles are definitely caused by this drug. I note too, as I have suspected from other MPN posts that the most recent thinking on platelets can be up to 600 now, depending on other blood cell levels. I really hope that if I go on Peg.Inf. it will suit me better. Kind regards to you. Keep well! Fran
My GP dismissed my elevated bilirubin levels as unimportant - the most it reached was 37 - and said it could be ‘Gilbert’s Syndrome.’ I think it had been elevated for decades and I was always asymptomatic.
Interestingly, on my latest two blood tests it was 21 and 20. I wonder if being on PEG has resolved it? Also of note, my macrocytosis - a known side-effect of Hydroxycarbamide - has completely resolved since coming off HU in Feb in favour of PEG! Does that mean the HU is completely out of my system? Answers on a postcard!
Oh, and I’ve had a complete haematological response on PEG without the fatigue I experienced on HU: Platelets: 291, Hgb: 152, Hct: 0.443 and WBC all within normal limits.
That’s interesting, FG251. My Bilirubin was In the early 20’s during 2019 then began rising each year after. I began HU in late 2018. Last months reading was too high as far as I can see, being 45. I’m certainly going to ask about it in telephone conversation with Haemo.
Re, MCV, MCH etc, as expected all were high for me on HU too. On Bes they all normalized after about 6-7 months. My Dr had said they would likely not normalized rather just be less high.
It's possible the HU was all out well before that while is effects took longer to fade.
Great to be CHR. I can't say it's without any fatigue for me, but overall I prefer the troubles of Bes over those of HU.
Absolutely! For me, PEG has controlled the counts much better: maintaining Hgb without inducing neutropenia. Long may it last! And I really think HU was the cause of awful fatigue, since it wasn’t a problem before I started taking it and it hasn’t been since I ceased.
My Dr has stopped increasing my dose because my WBC is getting low. At 140mcg. I'm good with that, he had wanted 200, but I know that is too much. I think 120 is my sweet spot.
I had good numbers on HU but the sides were not.
I’m still on 45mcg a week. With everything in normal range and a 50% reduction in my platelet count from diagnosis, I would imagine I’ll stay on that dose unless anything radically changes.
Hope your WBCs pick up, meanwhile.
45 is not too much, maybe similar to 100-120 on Bes. My Dr was figuring better molecular results as the dose goes higher, but the data don't point that way and I got the allele reduction on ~120 Bes.
My WBC last was:
Neutrophil # (LabDAQ) 1.52 Low (1.56 - 6.13 10³/uL) Final
Lymphocyte # (LabDAQ) 0.96 Low (1.18 - 3.74 10³/uL)
Dr says the extreme lower limit is about 0.5 Leuk and 1.0 Neut. At the original goal of 200mcg, WBC likely would get there.
From the little reading I’ve done - and been able to understand - molecular responses aren’t necessarily dose-dependant but rather time-dependant. Hope the WBCs improve!
Agree on the non-dose dependent. I've spent (too much) time studying these and have posted on it. For time, the best responses are fast and initially steep. And the correlation to CHR is strong. But there's still no clear way to know who will get the very best molecular responses.
I don't expect much increase on the WBC, but my Dr is ok where it is. Possibly when I switch to one/month dosing it might help.
I've looked for whether IFN WBC effects + or - has any prognostic signif, but can't find anything. It is a well known IFN effect.
Yep. I’m still holding out for future research to show that we were right to aim for deeper, molecular responses with IFN cf. HU. Hopefully we’ll be vindicated. In the meantime, if it’s doing its job without too many AEs, that’s all we could wish for in the absence of more targeted medicines. I also read that, unlike HU, IFN preferentially targets circulating granulocytes, which lowers the thrombotic risk... Thoughts?
I've only recently looked into granulocytes. It seems this is another word for most, not all, of our WBC, this site has a good discussion:
"There are four types of granulocytes [1]:
Neutrophils
Eosinophils
Basophils
Mast cells"
labs.selfdecode.com/blog/gr...
But Leuk and monocytes are in a different category, Agranulocytes, so the WBC count is not the same as gran count.
--
In this case I am getting this targeting granulocytes all too well. I have not seen a specific connection of granulocytes to thrombosis, but assuming so I'm getting the benefit. On HU my WBCs including grans were held to a good range but IFN has moved all still lower.
--
We do often get a test for immature granulocytes (IG%)where lower is better. The marrow should release in very large part only mature ones. This can be confused with IG test, which is an unrelated anti body test.
ET JAK2 + 
ET JAK2 positive
Bone pain in myelofibrosis 
Newly Diagnosed with ET 
ET related fatigue
