I’m 57, living in the USA, and have CalR mutated ET. I took hydoxycarbamide for 8 years at an average of 750 mg per day which kept the platelet count to between 850-950,000. I was happy with that because I didn’t notice any side effects. Then, about 18 months ago, the hydoxycarbamide became less effective, and after a further 16 months I was on 1.5 g per day with a count of 1,300,000 and still increasing. I needed a change of medications and got the doc to swap to Pegasys.
My doc required me to stop the hydroxycarbamide the day before starting the Pegasys, at 45 Mcg per injection. 2 weeks later the platelet count was 1,600,000. The Pegasys was increased to 90 Mcg. I am now 2 weeks further on and hoping that this will start to bring the platelets down very soon. This high count has me very worried.
I saw on this site that some people kept taking the hydroxycarbamide during the initial stages of Pegasys treatment to prevent the counts going up suddenly, as mine have. Can anyone point me to medical articles, if there are any, that say this is OK so I can convince my doc to overlap the treatments until the pegasys kicks in properly?
Thanks
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I did this procedure recently and my blood counts stayed ok thru the time. I'm not aware of a published procedure for PEG, but you should hear from members can provide, or at least who have done the transition.
INF often works slowly so a transition period with an HU combo is quite reasonable. In your case it seems compelling as a way to avoid very high PEG dosing, which might not make it go faster anyway.
Thanks EPguy for the link to the Besremi document. I forwarded this to my dr and but he still has his head in the sand. Much of the Pegasys documentation is for treatment of hepatitis and lacks the transition from HU protocol. A short section in one of these documents has the pharmacodynamics of Pegasys. This was also news to my doctor, which leads me to the point made by ET2005 below (thanks for that link) that I need to find a specialist MPN Dr and then work out how to navigate the transition of doctors as well as medications.
You're right about PEG research being focused on Hep C. And Hep C has moved on to different curative therapies, so most that PEG research is 15-20 years ago and has stopped.
You do need an MPN specialist. One problem I found in the US is for most Drs, you need to be physically in the state of their license to consult. A Zoom from a rest stop on the freeway in that state is often good enough. (lame in my opinion) So if your state has none that you prefer, you may need to travel.
I'm in San Francisco so Damon at UCSF and Gottlieb at Stanford would work but my insurance is with KP and I assume those guys are outside that.
Time is a factor for me and getting to see one of them
in a short time, let alone having insurance cover it will be difficult.
My doc just offered to hand me over to someone else at KP because, I assume, he doesn't like the questions. He claims after checking with his colleagues that the hydroxycarbamide was having next to no effect when he stopped it. No matter that before stopping the hydroxycarbamide the count was going up about 30 per week now its going up about 150 per week. He offers no alternative explanation for the numbers. It's amazing.
I'll get a CBC later today and take it from there.
Gottlieb is a top name for sure. I was planning to switch to KP when I start medicare. But with MPN Dx I realize other options might be preferred. KP seems not the best for rare conditions.
My current PPO, anthem Blue Shield, is quite good.
I have had KP for nearly 20 years because it was the most convenient option available through work and then for continuity. Overall I have been very happy with it and the health care people I encountered but every now and then I have come into contact with someone in whom I did not have confidence. I've always checked the primary medical literature on my ailments for details. Some of Drs don't like it when their explanations or reasoning are questioned. I used to just grin and bear it but the current issue isn't an issue where I feel I can do that. If you did not have the MPN I would recommend KP.
I am still waiting to hear from my hematologist if there are any MPN specialists at KP in SF or in NorCal. It maybe another question he never answers. There is a mechanism at KP for getting 2nd opinions outside of KP but I have only started learning how to do that.
Have. you seen an MPN specialist? If not, I think this would make a big difference in being able to advise on this transition. This doesn't seem like something you should have to research or convince your Hemo of. Video visits or zoom would even be helpful. Just FYI (in case it might help) here is a link to a list of MPN Specialists in US. pvreporter.com/mpn-speciali...
I have not ever seen a formal protocol for switching from HU to PEG in the literature. You are correct that people on the forum who make this transition typically report a gradual reduction in HU along with a gradual increase in PEG. It may be that you doc is just concerned about adverse effects and thinks it is better to risk the higher platelet levels for a time.
Do note this from ePocrates
Monitor/Modify Tx
hydroxyurea + peginterferon alfa 2a
monitor CBC: combo may incr. risk of myelosuppression; may incr. risk of cutaneous vasculitic toxicities in myeloproliferative disorder pts (additive effects; mechanism unknown)
This does not mean it can't be given together, but some close monitoring would be indicated. Do for sure take you questions back to your MPn care team.
Thanks for that input hunter. That may be one of his points but he refuses to comment on the combined treatment, discuss risk comparisons, or discuss a plan for the very real possibilities that the Pegasys takes a long time to work or does not work at all. The lack of constructive dialogue is a problem.
A few months back he offered Besremi as one of the
change of treatment options but said that the costs would be much higher
than Pegasys. Also he had a few patients on Pegasys so that seemed a
reasonable option to me. Today when I asked if I had taken the Besremi
option if he would have tapered the hydroxycarbamide as the EPguy's
Besremi document suggests he did not reply.
I'm data/evidence driven and a novice at this stuff so maybe I come across a bit blunt and pushy to him. I don't know.
I just went in for my CBC and some other tests that he ordered. I should have the numbers tomorrow.
I do see an MPN specialist. I took both HU and PEG for about a 6 weeks. Reducing the HU. I was on 1500 mg a day. My blood counts were good. My platelets dropped from around 600 to over 200 during the transition
Hi, I’m with Professor Harrison at Guy’s London. I over lapped Peg with Hu and had amazing results straight away. So sorry your Peg hadn’t kicked in yet. I’ve googled your query and I’m afraid I can’t find any information to help.
My CBC from yesterday has my platelets at about 2,400,000, up from 1,600,000 10 days ago. The other numbers are all reasonable. My Dr finally responded to this and suggested taking hydroxycarbamide at a dose of 1.5g twice daily for now and then to follow the tapering process as described in the Besremi document.
3g of hydroxycarbamide seems a lot to me but I am happy to start the HU again.
My understanding from the discussions on this site is that tapering should be adjusted according the results of the weekly blood tests. Does that sound right.
That is a lot of HU. You should keep looking for that MPN specialist. That PLT level is not common, and proper expertise to discuss it is worth finding.
For example that expert might help you get into the Bomedemstat trial. This agent can reduce PLT, and you may meet the requirements for this trial if your Dr and the trial agrees.
<<An Enzyme Inhibitor, Bomedemstat, for the Treatment of Essential Thrombocythemia or Polycythemia Vera That Has Failed at Least One Standard Therapy>>
Yes I was monitored weekly, originally I was on 9 anagrelide and 17 hydroxi a week.Wk1 no anagrelide and 90( should have been 45 of Peg dose error)
Result amazing platelets halved.
Wk2 I think halved hydroxi plus 90 Peg
Wk3 can’t remember hydroxi but Peg was changed to fortnightly.
Then no hydroxi
Then Peg every 10 days since. So my body responded so well I came off other meds really quickly. Now I’m 2 months before blood test. Phone call end of may then clinic 2 months later.
I do hope your body responds to Peg. Some people are on 135 a week others a low dose of Peg plus hydroxi because the body couldn’t cope with 90 of Peg.
Top priority get the pesky platelets down and play around with dosage. It’s a waiting game. Good luck and keep me posted.
Et guy said about a trial. Don’t dismiss the possibility
Firstly, I have to say that my Dr is now helping a lot. The high platelet count convinced him that the HU was necessary and he now has an open mind about new paths forward, uncharted for both of us. The document on Besremi and note from Wyebird about professor Harrison’s practice, which I forwarded to him, also helped.
Without the feedback from this site I would not have pushed for the earlier than planned blood test that led to this change. I offer a very big thank you to the members here.
My Dr has reached out to an MPN specialist, forwarded my data, had some initial feedback. I understand they will continue to interact as I proceed through the process, which is very good news. He also offered to write a referral to see one of the MPN specialists nearby. I plan to take advantage of the referral to get a second opinion and just pay the cash if need be.
A few weeks ago I did look up where the trials of Bomedemstat. I could not see one that would work for me.
My Dr said that 3 g of HU is often used in emergency situations with leukemia patients but only for a few days. Then the dose is reduced. I was on 1.5 g HU/day before cessation. 3 g HU concerned me so after talking on the phone we settled on 2 g/day. I will continue with the weekly injections of Pegasys (now at 90 Mcg) with weekly blood tests. The tests of liver function show only a very slightly elevated ALT and AST so I am OK there for now.
We agreed that once the platelets have stabilized at safe levels then the numbers will guide any future reduction in HU, increase in Pegasys, or a move to other treatment options.
Is there clinical trial data that directly compares Pegasys with Besremi for MPNs?
Physically I still don’t feel great but the anxiety I had about an imminent demise has abated. I’ll be taking it easy for a week or two.
No way to say whether it's relevant to us, esp since Hep C treatment adds oral ribavirin, and it's a small trial. But it seems to show the two are not equivalent. PEG was more effective for HepC treatment. PEG= 96% response while Bes average was 74%.
It is a surprise to me. Esp since the report is from Taiwan, where Bes is made. Their conclusion does suggest a bias since it states the two INFs are "as effective" but the numbers suggest not.
I've noted elsewhere that the two INFs use a different INF type, still curious if it matters.
One item of interest is the higher doses of Bes (270, 360, 450mcg) actually decreased response. We are finding on the Voice that the published high doses of Bes for MPN may be more than we need.
Sounds like a fantastic plan. Your Doctor is now well aware of MPNS and this will benefit you both greatly.Now let’s hope those pesky platelets act properly.
It sounds like you have a strong argument to put to your doc that gradual cross over with hydroxy would be safer as platelets have risen and peg can be slow acting for some of us. Good luck and let us know how you get on
Some states had moratoriums on licensing across state lines during Covid. Some have stopped or will be stopping moratoriums soon but there may be opportunities to zoom call with mpn specialist depending on the status of your state laws. Wish you the best.
It’s also possible that an mpn specialist operating in another state may have your state license. I presently consult with an mpn specialist in another state.
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