Hi all and merry belated Christmas
So… chemo….
I was diagnosed with ET about a year ago and finally found an MPN specialist in Montreal after a few months with a hemo who, unfortunately, knew very little about ET.
I should be starting Pegasys sometime in January and I have a few questions :
- anything I should do before? I read somewhere that I should get an eye exam.
- what side effects are you experiencing? I saw the list… should I be worried?
Thanks!
Glad to hear that you were able to connect with a MPN Specialist. This is the best way to ensure optimal MPN care.
There are some things to be aware of with Pegasys. PEG is not chemotherapy. It is an immune-modulating therapy. It works in a different way that chemotherapy agents (cytotoxins) like hydroxyurea. That is not to say that it does not come with its own list of potential adverse effects. All of our choices do. Note that PEG is used off-label for treating MPNs. The list of adverse effects you will see is based on the much higher doses used for treating hepatitis. MPN treatment with PEG usually begins at 45mcg, which is 25% of the dose used for hepatitis.
We each react differently to to the treatment options for MPNs, both in terms of efficacy and tolerance. I was refractory to and intolerant of hydroxyurea. I did much better on the interferons (Pegasys initially - switched to Besremi). The interferons have been more effective and much easier to tolerate than hydroxyurea for me. Note that is for me. We are all different.
There are two primary choices for cytoreduction for ET patients, hydroxyurea and Pegasys. Many MPN Specialists prefer PEG for patients age < 60 due to the specific risks associated with the long-term use of HU. Some MPN Specialists prefer PEG for all ET patients when cytoreduction is indicated. Here is a bit of information on this choice.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
You are correct to think there are health issues to be considered prior to initiating treatment with PEG. Below is a list of the contraindications and cautions for PEG. Note that a caution does not mean that you cannot take the drug. It means that you need to be aware and careful if the condition is present.
Contraindications / Cautions . epocrates.com/online/drugs/...
hypersensitivity to drug or ingredient
hepatitis, autoimmune
hepatic impairment, Child-Pugh Class B-C
neonates
infants
avoid: breastfeeding (pts w/ cracked nipple or bleeding nipple)
caution: female pts of reproductive potential
caution: elderly pts
caution: psychiatric disorder
caution: ANC <1500
caution: Plt <90,000
caution: Hgb <10
caution: renal impairment
caution: cardiac dz
caution: thyroid dz
caution: diabetes mellitus
caution: autoimmune disorder
caution: eye disorder
caution: pulmonary dz
caution: organ transplant
Your MPN Specialist will have taken a medical history and ordered labs prior to initiating treatment with PEG. These will likely include CBC, CMP (liver & kidney function), throid, and check for diabetes risk. It may be that some of this information is already in your medical record. Due to the potential ocular adverse effects, it would be reasonable to have your eyes checked prior to initiating PEG to establish a baseline and rule out an undiagnosed eye disorder.
I have been taking the interferons to treat PV since May 2021. They have been very effective and the side effects have been minimal and easily managed. Adverse effects = itching/rash controlled by antihistamine, increased liver function values controlled with milk thistle extract, and mild lymphopenia/borderline neutropenia which is tolerable. I am maintaining a complete hematologic response and my JAK2 allele burden has reduced from 38% to 10%. My only regret with the IFNs is that I waited as long as I did to start on them.
Wishing you all the best as you move forward.
Hunter,
Thank you so much for having taken the time to answer. I now understand what PEG is as well as the dosage LOL Your experience is very reassuring.
Yes, I will have labs in a couple of weeks and will talk with my MPN Specialist the week after. She was heavily leaning towards PEG because of my age (55) and the mild adverse effects compared to hydroxyurea and yes, she wants to start me at 45mcg. She wasn’t concerned yes by my allele burden which is at 15%, but she’ll monitor it every year/two years. I trust her judgment completely (I asked to be her patient).
It will definitely take some paperwork on her end as Pegasys is not a first line treatment for MPN here in Quebec.
Thank you for the links, looks like I have tons of reading for the holidays 
And I’ll make an appointment with my eye doctor.
And I’m so glad interferon works for you.
Thanks again !
You are lucky to have a Canadian doctor compassionate enough to offer you Pegasys as it is the only drug out there that gives ET & PV patients a chance to live a normal lifespan.
And you are extra lucky to be offered it while your mutant allele burden is only 15% because starting the drug that early boosts the chances that it could induce a state of "Minimal Residual Disease" in a year or two at which point only a small "disease maintenance dose" would be needed about every 3 weeks that will probably have no side effects.
Monarch,
Thank you so much for your reply. And thanks for the article, I’ll try to get access through my library.
Dr. Natasha Szuber, my MPN specialist, is extraordinary.
When I was diagnosed in April, I decided to be treated at the CHUM (translated as University of Montreal Health Centre, a teaching institution which also includes pure and applied research, teaching, and the evaluation of medical technology and best healthcare practices.) in Montreal. It’s the biggest hospital in Quebec, one of the biggest in Canada and they have an amazing oncology department.
Soon after my ET JAK2 diagnosis, I found this forum and started reading posts on ET. Almost every time, Hunter would advise to see an MPN Specialist. And since I felt the questions I was asking on the progression of ET, allele burden, supplements and so on weren’t being answered properly and that my worries (heart health, smoking, huge family history of blood clots, etc) were being disregarded, including the fact I was told that fatigue had nothing to do with ET, I checked and found out I was treated by a hematologist, not specialized in MPNs. So I asked for one, without any success.
During my research on ET, I found that there was a research center on NMPs in Montréal headed by Dr Busque. So I called and asked was the procedure was to be transferred there under the care of Dr Natasha Szuber. It took a few months as I’m not an urgent case, my ET is « clean » so to speak, my platelets are between 600K and 800K no sign of pre-PMF or PMF in the bone marrow biopsy.
I met Dr. Natasha Szuber on Dec 21 and I was just amazed. I was finally talking the same language with my doctor. She explained everything very clearly, including treatment options, told me why she prefered Pegasys over Hydrea, asked for my opinion. Of course, since I have no private insurance, she will have to ask for the RAMQ (the Quebec equivalent to the NHS) for approval. And I have another appointment with her on Jan 22., after a complete blood work.
It’s so reassuring to have a Specialist, to talk to someone who doesn’t dismiss your symptoms. A couple months ago, I didn’t fully understand what it meant to be treated by an MPN specialist. I do now and couldn’t be more grateful to be in such good hands.
Hi Isabelle
I am in South Shore of Montreal 53 years old and I take Peg since 14 years from the CHUS from a doctor that is now chief at the Jewish Hospital. I am now taking 45 mcg every 6 weeks. I have ET CALR type 2. I am sure it helps to not progress as I have this illness for probably 20 years.
wishing you a positive experience as I have had with peginterferon to treat ET JAK2. I did not tolerate hydroxy nor anagrelide well so started on low dose 45 every two weeks and then weekly after 3 months. Now at 67 weekly. I carry prescription anti nausea pills and was advised to take a 384 Tylenol before injection and as needed in between. My doctor suggested getting an eye exam at start to have data for comparison over time. I have eye exams every 6 months now. No vision side effects. Found that nausea and pain would happen on day 2 or 3, not day of injection. Pain was not headaches, it is lower back and hips. The injection is at 2:30 PM having assumed sleep would help overcome reactions. Timing has not mattered either. I was aware of possibility but still surprised to experience some occasional sadness and wanting to be left alone. Overall, side effects are definitely manageable. This may change as dose goes up to 90 in new year but I have adjusted to the drug and feel comfortable handling an increase. Slow and steady is working for me. I hope your experience is the same. Stay safe!
Mishie14,
Thanks for your reply and for sharing your experience.
My Specialist wants me to start at 45mcg every week and said she would adjust the dosage depending on how I react.
My first « to do » this morning is to have an eye exam as soon as possible after the holidays.
Thanks for the Tylenol and anti nausea. I’ll check with my pharmacist, she has the presciption and started doing some research on ET since she didn’t know what it was, the only other patient with an MPN she has is one with PV.
My Specialist said that most of her patients chose to inject on Fridays so that their side effects are during the weekend. Considering what you’re saying and what I’m reading, the majority of adverse effects are usually on day 2 or 3, so I think I’ll inject on Thursday evenings since I have Fridays off.
Thanks for mentionning the occasional sadness and wanting to be left alone, I’ll monitor closely. My Specialist also emphasized mental health care as she finds depression is the number 1 side effect with Pegasys.
Take care !
I am very happy to read you have a good team start to treatment. Armed with information is so important. Best wishes to you for 2024 and in particular for successful treatment using peginterferon. Stay safe!
Side effects: youtu.be/OsdoYoA1kLQ
hello IsabelleHo,
You’ve already had very comprehensive answers from Hunter5582 and monarch5000 so I won’t duplicate, but I thought I’d give you info on the side effects I experience (which are very few and manageable). Everyone’s experience is different. I find myself quite dehydrated (which has its own side effects) so I make sure to drink plenty of water at all times, but especially the day of my peg injection and the day after. I also found that drinking alcohol on the day of the injection didn’t help. I’ve actually given up alcohol overall (for many reasons, not just this), but that’s not for everyone! I also find myself a little anxious the day after the injection and sometimes I have a funny tummy. But overall my body seems to tolerate it well.
Good luck on your journey!
NCB1983,
Thanks for your reply and for sharing your experience.
Drinking water… I have to work on that since I’m rarely thirsty. I’ve actually been working on drinking 2 liters a day to mitigate fatigue. And yes, as weird as it may seem, it’s hard LOL
Alcool, I’m not a drinker, I don’t like the effects. I have an occasional glass of wine or beer or whisky, and I usually drink only in December (my birthday, Christmas and the New Year). And yes, I’ll keep in mind not to drink on the day of injection.
Anxiety… thanks for telling me. Stress management is one of my problems so I’ll make sure to monitor that.
Take care !
the list of side effects is off putting to read. I took a week looking at my injections before I took the plunge. Peg Interferon is brilliant for me. It has taken over a year for my MPN to experiment on doseage. I am now 45 monthly & keeping platelets controlled & rest of blood checks. It is slow reacting so do not expect a quick miracle just concentrate on feeling healthy. I have ET Jak 2. Julia UK . 👌
Exeter21.
Thanks for your reply and for sharing your experience.
Yesssss, you’re so right!!! The list of side effects made me wonder if I really wanted to go through with Peg. LOL Thank you for reassuring me, it really helps a lot.
Take care !
So glad that you have found an MPN specialist with whom you are comfortable! My journey on Peg has been great - not without its ups and downs (mainly around liver enzymes) but once we got the dosage and timing correct it has worked very well with all my blood now in normal range for the first time in a decade. I pushed for Peg given my age (52 when started) and the fact that I did not tolerate hydroxyurea.
The only real side effects I had was fatigue on 2nd day after injection. Someone from this community suggested I try injecting earlier during the day to be more active as my body metabolizes the Peg 9I used to inject right before bedtime) so I gave it a try and it worked wonders. Fatigue is no longer a limiting factor. Also make sure I hydrate really well and especially the two days before and two days after injection.
Hope it works well for you! I would advise patience. For some it seems to work immediately but for some of us it can take a little while - it took us 6 months to get the dosage right and another 8 months for the desired results but glad we waited it out. As Hunter has said in the past, these cancers are a marathon and not a sprint....
Thanks for the advice on the injection time, I'll try in the afternoon then. Fatigue is my number 1 problem with ET, some days, I have to take multiple naps to be able to work.
I'm a patient woman, but I didn't think it could take that long to get results, thanks for the heads up!
Hi IsabelleHo,
Congrats on finding a very qualified MPN Specialist. I am in Calgary and have been on Pegasys for almost 2 years. So happy with it. Feeling great. All bloods from CBC are in the normal range. I have PV Jak2+.
Pegasys starting dose for PMF
Pegylated Interferon...starting soon
Starting soon!
