I have been in complete haematologic remission on Pegasys (45 ug every 2 weeks for the last year).
I have never had an official allele burden as it is not available here. Though I did send saliva and nail clippings to the study in California on familial MPNs under Dr. Angela Fleischman. She could not find a Jak2 mutation in my exome but did PCR and found an allele burden of 7% which she could not guarantee.
I have considerable fatigue so I asked if I could come off of interferon. We did another BMB which was read as normal looking so the haematologist said yes to coming off Peg and monitoring monthly.
My question to the group is whether this seems foolishly optimistic?
I see Monarch mentioned on another thread that he knew of others who progressed when they stopped and had to go on higher doses of Peg interferon. I would not want that.
Thank you all for being here.
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Planti
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This is a topic that is under active investigation, though based on achieving a complete molecular remission. We still do not know for sure what the consequence of getting the JAK2 mutation so low that it cannot be detected.
Following the Besremi titration guidelines, there would be a gradual titration of the medication, gradually reducing frequency (or perhaps the dose). You are already at every other week, With a halflife of 80 hours. there would be very little PEG left in your system at the end of that interval. I think I would consider first going to a three week interval followed by a four week interval to see how I responded. Alternatively, I would consider sticking with a 2 week interval but reducing the dose to less than 45mcg. Ultimately, the goal would be to titrate all the way off the PEG and see what happens.
I do not think it is unduly optimistic to try coming off the PEG for a while. We always have the weigh the risks/adverse effects with the benefits and make the best decision we can. PEG can, in fact, have adverse effects that negatively impact our quality of life. Setting a primary goal as to quality of life is always our prerogative, provided it is an informed choice about the risks/benefits of deciding to discontinue a medication.
You will certainly be monitoring the results of any decision you make. You clearly understand the risk/benefit analysis related to discontinuing the PEG. The right decision is the decision that most closely aligns with your treatment goals, risk tolerance, and treatment preference.
We considered tapering but the haem did not think it was necessary.
I will be so glad to answer the question as to what is causing my fatigue, age and laziness or peg. I also have shortness of breath and had lung function tests that showed no pulmonary problems so it is a sensation and I see can be a side effect of pegasy
I consider having been on peg to have been a privilege where I live and am thankful it has worked so well and been as tolerable as it has been. It is very expensive and I use only a small amount of the syringe in which it is packaged so using even less seems an undue burden on the health care system.
I am doing well, thank you. Just back from a trip to Alaska. I got to fly out to the glaciers on a helicopter, which was a great adventure.
I hope your trial going off PEG works out. I would think that if the counts elevate too much you will be able to resume treatment, though there is apparently risk otherwise. I had not heard previously of an issue with rechallenge with PEG. The only way to know is to try.
I am glad to hear that your doctor listened to you and is willing to consider your treatment priorities. Sometimes it makes more sense to prioritize quality of life and to accept the risks of how we set our priorities.
Hunter i love your good attitude and super sense of adventure:).
I have a new twist on my journey. I think my last post was Just 2 years ago when i first started taking Pegasys, at that time I was 2 years into diagnosis with an allele burden of 25 and Platelets at 1100.
My hematocrit was managed with phlebotomies every 5- 6 months.
I was on 90 mg every week… pretty will tolerated but my fatigued just kept getting worse…
The good news is my platelets responded quickly. Gradually coming down to 200-250 after 18 months. And at that time we decided to check my allele burden again. Happy to say it was down to 14%… very happy about this…. However my fatigue and breathless continued to worsen!! My specialist hematologist suggested an anti depressant was in order!!! (As fatigue can sometimes be caused by depression). I declined…so one month later i was scheduled with another PA for my next bloodwork… the lady i usually see was having a baby so i just an ordinary hematologist substituted …. I told him about my huge fatigue and he said “do my mind doing a Ct scan …. So the next day i was scheduled….and scanned, easy.
I was no-sooner back at the hotel than get get a call saying “get to the emergency” room ….. so off we go… on my next adventure! I had blood clots in my lungs ( and still do).
I dpent 2 days in the Hospital …lots of tests!!!! When i was given heparin i could not believe how my fatigue was gone!!
I was so happy now i knew there my fatigue was coming from… no more guessing very happy. I was sent home with a prescription of Aliquis ….. since then i have been better…. But not my old self!!! And do not do well on stairs!!!
More good news just had another allele test at 6 months and Burden down to 6% … very happy about this..,
My heat rate is always over 90 bpm!! Right side if heart is getting larger because of working so hard. Next week i will get another CT scan and pulmonary function test.,,,
My Hematologist did apologize for not catching this !!!
Im on hold for a few weeks on my pegasys ….maybe it did not agree with my heart (which by the way was fine 2 years ago!!) before i started Pegasys… but glad i did!!!
I have not heard any other reactions like this…. Any one else have an answer or experience like this???
I have to ask- I know that you have been in good hematologic control/remission for a year, but can I ask, how long have you been on Pegsys overall, and what 'flavor' of MPN were you diagnosed with?
I'm just curious because I wonder what the average treatment duration that yields sustained remission is both for Pegasys and Besremi.
I did find this:
"In PV, rIFNα-2a monotherapy, together with targeted therapeutic phlebotomy, normalizes elevated blood cell counts within a few months, often accompanied by a decrease in the JAK2V617F allele burden.21–26,32–35,43 However, major molecular remissions are rare within the first 2 years of therapy and a minority of patients with PV may require a few phlebotomies per year despite 2–3 years of treatment...."
from:
New Perspectives of Interferon-alpha2 and Inflammation in Treating Philadelphia-negative Chronic Myeloproliferative Neoplasms
"After 5 years’ treatment, 53/95 patients (55.8%) in the ropeginterferon alfa-2b arm and 33/75 (44.0%) in the control arm achieved complete hematologic response (CHR) according to modified European LeukemiaNet (ELN) criteria [9] (RR: 1.30 [95% CI: 0.95 to 1.77]; p = 0.0974; discontinued patients were considered non-responders). Response rates in a prospectively planned sensitivity analysis of CHR with imputation of the last observation carried forward were 69/95 (72.6%) in the ropeginterferon alfa-2b arm versus 40/76 (52.6%) in the control arm at Month 60 (RR: 1.43 [95% CI: 1.12–1.81]; p = 0.004)."
from:
Long-term outcomes of polycythemia vera patients treated with ropeginterferon Alfa-2b
Hi There, Sorry that my original post was not clear. I am a recently turned 69 year old female with ET based on blood counts and a bone marrow biopsy. I was briefly, about 2 months or so on hydrea but found the side effects troublesome and stopped.
Peg was started in March of 2021 and by April platelet counts (which had been reduced by HU but got over 500 aging when I stopped) were at the upper end of normal range and have stayed that way ever since. I did have minor elevations in liver enzymes and some decrease to slightly below normal white cells (neuts or lymphs or both). The last year has been at 45 every 2 weeks but still have fatigue, SOB, muscle and joint pains (tolerable but my activity has reduced significantly).
As I mentioned in one post somewhere my platelets were only above normal for about a year and because I have family history of MPNs I was quick to ask for driver testing and found to have the Jak2 mutation. Allele burden is not an available test for people with ET here. My haem has asked to have my JAK2 mutation tested again (qualitative) however approval has not yet been given.
I see in one paper that people who stopped peg and did well were those with allele burdens under 10%. My haematologist also noted that I had not had elevated platelets for long before diagnosis.
The article is interesting and dense but I see several points that indicate to me anyway that perhaps stopping now might not be the best long term strategy but also give some rationale for my relatively quick and sustained response. Lots of work to be done and it will be difficult to fund research on old drugs like colchicine, statins and supplements like NAC. I have taken NAC for a long time (10 years) but currently on a low dose. Perhaps I should increase again. Had decreased 2nd to digestive upsets.
Lots to think about, thank you for sending that article and for supplying more food for thought.
I'm a retired doc so have been refractively uninterested in reading medicalese. Like stretching unused muscles. Grateful that I can, but taken in smallish doses.
The "others who progressed when they stopped" had stopped for an extensive periods of time; i.e. 3, 4, 5 years without regularly monitoring their counts to see if they had been rising. But by following Dr. Fleischman's advice about monthly monitoring, you should be able to determine in plenty of time whether or not bi- weekly or perhaps monthly dosing should resume.
I personally like the idea of monthly "disease maintenance" dosing because it likely helps the body resist the development of many potential blood and solid tumor cancers. Example: 7 years ago, before starting Pegasys interferon, I experienced occasional basal cell skin cancers and one squamous cell skin cancer, but I haven't had any of those since being on Pegasys. No seasonal flu or common colds either.
Thank you for the additional information on the others who stopped. My haematologist feels that more than two week intervals is sort of a waste of the drug which comes in syringes with 180 ug so I waste most of it.
There is much to consider but you are correct in that with proper monitoring there should be time.
My local MPN specialist is not Dr. Fleischman, I just entered her study on familial MPNs.
Oh that would make me feel better about staying on and reducing my dose. I noticed an improvement when I went from 45 every 10 days to every 14 days, less nausea after eating. I'm in Canada and I don't think that lower doses are available.
I felt I needed to chip in here to tell you, there is a prefilled syringe available with just 90mcg. i use that one after contacting the maker ad being told of its existence. It seems they don't advertise that and continue to supply 180mcgs t every partaking pharmacist. I too throw half of it away every fortnight and feel so much better discarding half of 90 mcgs. In fact, I now dose 30mcg per fortnight.
Haematology today. I need to discuss finding my own allele burden and checking JAK2+ presence because I too suffer the effects you describe. Based on your mindset, which matches mine exactly, the feelings of 'guilt' and 'laziness' must also be linked to the drug, which has taken my platelet levels to well within normal range for around 5 years now.
Keep researching and I hope you find some answers and the outcome you seek.
Are you in Canada? My medication is dispensed by the hospital pharmacy as with all medications for cancers here.
I have been getting it in the same format since March 2021 when I started. Normally they are very cost conscious as the medical system counts its pennies. The dosing is actually for people with chronic hep C as Pegasys is not officially approved for MPNs.
I will definitely press again for them to seek different suppliers who may have smaller doses but am not very confident it can be done.
Haha, drug induced laziness and guilt what a good excuse!
I hope you get your answers from the haem team. Thanks and good wishes. L
My hospital pharmacy AND Professor insisted I was imagining the availability of 90 mcg syringes. Only when I contacted the maker did I get agreement and asked them to verify it with my professor.
I'm in England, whih has the same or similar availability and rules re Pegasys.
The suppliers are only interested in making money!!!!!
Sad but true.
They're based in the US so cheaper for you to phone and request.
Hi Lauren. I got everything from the leaflet in the box. It's Pegasys. Not generic and I must have researched it online. It was about five years ago. It looks as though they're Austian but I noticed I was talking to an American accented person. So maybe that's the number i found.
In the UK it says it's manufactured by
LOBA Feinchemie GmbH,
Fehrggasse 7
2401 Fischamend, Austria. The marketing authorisation holder is
zr pharma& GmbH
Hietzinger Haupstrasse 37
1130 Wren, Austria.
Maybe you could find the phone number you could use or the distributer in Canada.
Thank you so much. I will call my hospital pharmacy and talk to the head pharmacist. I used to work there as a psychiatrist so have a bit of old relationship with him. I will see what his take is on this information.
I looked up the website, GmbH was acquired by Pharm& (in 2021) which says it is a worldwide supplier of specialty drugs so perhaps there is a chance.
Contacting the employees of Pharma& requires me to be a member of LinkedIn which I will not do though as I have been avoiding that for years. I will look for a work around when I finish my coffee.
Thank you again and perhaps others might get on this bandwagon.
I thought that was a different company from when I called them. I think it was owned by Roche when I contacted them. I know they are still producing that dose because I use it.
I wonder why they're telling you to join Linkedin. Weird.
I guess that is how the employees have asked to be contacted or something. I emailed the head office and have emailed the Cancer Agency and phoned the hospital. Hoping for a call back from their acquisition person.
Hi, Well I spoine with a pharmacy tech at the hospital who did some research. So far that company doesn't have Health Canada permission to sell their product here. But I am sure that they will be in the process of doing that.
In the meantime my family doctor said she understood my dislike of throwing away so much of the expensive medication but also said that I had not cost the 'system' much in my life so far. In the last 5 years it seems like a lot to me several smaller surgeries and imaging studies plus the Peg.
I am watching the video posted by Manouche right now and hope to hear that some people can go down to 30ug per fortnight.
I will keep asking as the smaller doses I am sure will eventually be here as Peg is prescribed more and earlier in the course of the MPN.
Thanks so much for your encouragement and fantastic help.
Hi again Planti. I am on 30mcgs every fortnight an have been for around a year now. I had my latest blood results today and all my blood levels are very good and in normal range. My haemaglobin is borderline but still comes under 'okay'! So it is possible to go dow to 30mcgs!
I got a response from BC Cancer Provincial Pharmacy program:
“We appreciate the thoughtfulness of the patient in considering alternatives for benefit items. Unfortunately, medications funded are based on contract and billing restrictions. If the patient has more specific questions, they may direct it to their local pharmacy/center currently supplying his/her therapy.”
At least someone got the message and perhaps in time that will lead to some change.
I tried a three month break from Pegasys three years ago, after being on it for five years with very stable counts but like you with no allele burden measurement available here in the UK.
We monitored my counts monthly and they began to rise again, not dramatically but steadily, so I went back on Pegasys at just 45mcg every 4 weeks. That has proved a perfect compromise for me, with no side effects and good control of my platelets while avoiding over-suppression of my WBC.
The only downside is that I’ve become a bit more prone to catching colds than when I was on higher doses of Pegasys, so I’ve lost that beneficial side effect!
Congratulations, that’s a nice dilemma to have, ie stop or reduce/space out dose, from what I read/hear different experts have different views. The main and obvious thing is to monitor it carefully if you come off and of course you can jump back on quickly. Another option is maybe to e mail some of the Peg/Bes famous experts, I have had dealings with most of them and they are very approachable.
I did mention my progress in an email to Dr. Fleischman who I thought might be interested as my family is participating in her study. Your suggestion has merit though I would not like to be the one on the receiving end of a barrage of emails.
I appreciate that even the experts have different views and the research that is being done is very exciting for us in the MPN community. It is particularly valuable to have the understanding that though most of us survive a long time on this, for many the symptoms are miserable.
I think this sounds to be wonderful news. In your shoes I would definitely try weaning off the peg and then watch and wait with regular blood tests to monitor. You can always start the peg again if bloods rise. Well done you and please keep us updated
Forgot to say on my reply that I would be very interested to hear how your breathing goes as I experience slight breathlessness now too and not sure if it’s the peg . Not a problem at this stage and seems to be intermittent. Good luck
I will keep you posted on whether the breathlessness goes away. It is not really a problem except that I find myself blowing out through pursed lips and sometimes overbreathe and get a bit dizzy. Takes no real exertion to bring it on and yes it is intermittent.
I seem to have problems with the exhaling. Sometimes feel I can’t completely blow outwards and empty my lungs. Breathing in is fine but find myself overcompensating by filling my lungs up like filling up a balloon😂🎈. Anything which needs to be coughed up seems to come from higher up nearer the throat rather than deep in the lungs. All quite different now to how my body was before the peg but is it the peg or is it getting older?
Problems with exhaling are common with a lot of lung issues and mostly what I have too. I think that it is worth mentioning to your doctor and having the peace of mind that it has been recorded, and perhaps testing for pulmonary function can be done.
Puffers can sometimes help. I use one periodically, like right now when I have post viral (a 'cold' only) reactive airways. That means that you have a bit of asthma like tendency when your lungs have been challenged with a virus, doesn't usually last long but can cause that prolonged coughing after a cold. Most people don't know that they have this, they just cough.
I hope you get some answers and some relief, even if you are only mildly irritated by this.
I am on 45 mcg every 4 weeks. Counts are stable. Allele burden was 8% when last measured 15 months ago. I hope to be done with this in March. Maybe you can go to 3 weeks.
My haematologist has always said that taking peg less often than every 2 weeks is to infrequent for the body to notice you are taking it. However, I am also very aware that people are different in how they metabolize medications so that may not be the case for all.
Several people who responded are also on monthly Peg and doing well. Would they be doing as well without seems not to be the case for some.
I hope that you can be done with it when March comes.
You can be sure that I will be back on it if my platelets show any signs of rising again and at that time I will be asking to go 3 weeks between.
Maybe tell the Heme MD that you're only trying to keep the Peg getting noticed by and acting on the [aberrant/malignant] cells, which are the most sensitive to it, and that having it go un-noticed by the rest of your body is a benefit.
Must admit that I find her a bit conservative in that there is perhaps a little too much dependence on studies. Studies tell us lots about groups but little about individuals.
I am on Pegasys for 4 years. I started with 45 mcg weekly, now once every 3 weeks. Platelets stay around 175 consistently, no side effects except low WBC, but absolutes are good. I am ET with MPL mutation.
Would like to go to once per month, but my specialist said that would be such a low dose, it would not be meaningful. I would love to have a pre-filled syringe, but of course it is off-label, so just thankful to get it.
Good for you having control with minimal side effects apart from the WBCs being low. I am assuming that they are not very low.
I recall in my medical career that there were people who were stable on what seemed like impossibly low doses of their medication (I am a retired psychiatrist). And woe is me, and to my surprise when I discontinued that unmeaningful dose they got ill again. People are different and it is not always possible for medical specialists to predict, however, we do feel very bad when things go wrong which engenders caution.
Perhaps a lower dose at 3 weeks would keep your illness in check.
I am so happy to have seen the ranges of doses and intervals mentioned by people who have responded. I am going to try stretching my interval to 3 weeks and lessening the dose to 30ug for a time, as sort of an experiment rather than quitting as I have been given permission to do.
Hope you stay well and keep up discussions with your specialist about interferon treatment.
Ps. My patient was able to get back on that low dose in time and stabilized again.
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