Hi, I'm new to this, but it has been recommended by one of my haematologist doctors.
I'm a 54 year old male who was diagnosed with Polycythaemia Vera, Exon 12 strain some 4 years ago now.
It has been controlled with first asprin, now clopidogrel due to chronic acid indigestion. I have venesections when the level is too high and iron tablets when I feel tired and breathless.
I suffer similar symptoms that I've read about on these blogs; tingling and itching after a shower, nausea, breathlessness, hot flushes, headaches, etc
My doctor has now suggested two differing chemotherapy treatments going forward.
Interferon self injection or Hydroxycarbamide capsules.
Has anyone had a similar experience and could share their experience?
I must admit to be apprehensive of starting chemotherapy treatment, even the mention of that word scares you!
Thanks in advance if you take the time to respond
Cheers
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mrbrindle
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Hi - I have ET, no mutations, and have been taking hydroxyurea capsules since July 2018. I haven’t experienced any negative effects and it has brought my platelets into normal range. I was extremely hesitant - and resistant - to start taking it, but there were so many people on this forum, including Maz the forum administrator, who’ve been taking it for ages, and so I began. Interferon wasn’t suggested to me as an option at the time as my haemo said that HU is the most easily tolerated treatment and I’d a very mild chemo. For me, it’s been fine.
The pros with interferon is that after long time treatment (maybe longer than 3 years of use), there is a chance to achieve a molecular response or even remission I think.. Interferon is also the most promising drug along with ruxolitinib or some other agents to treat deeply these MPN's. Maybe should ask your doctor about it. Read this:
Venesection is not a benign procedure. Hydroxyurea and interferon each have a profile of side effects and toxicities. Even low-dose aspirin has risks. The interferon injection process is next to nothing compared to the real issues you face. I am a partisan of Pegasys because I had a bad experience with hydroxyurea. But I can advise that whatever course you take, be very alert to signs of toxicity and make sure you have a open and honest relationship with your physician.
I have ET (Jak2+), diagnosed 2016. I have been on low dose hydrea since that time. I take five tablets one week, and four the next. I have had no issues whatsoever with this drug, and it controls my platelets well.
I would give some serious consideration to Pegasys though. There are people on this site who strongly endorse it. ‘In particular, ‘Susana7’ and ‘Paul123456’ who both have PV have had great results.
It’s great you have been given a choice. I didn’t have that option. But I’m happy with my treatment for now.
Hi, welcome to the forum. As mhos61 says, I have had a great experience with Pegasys interferon to treat my PV and if I were you I would go for that option. It is not chemo, interferon occurs naturally in the body, and it is more akin to immunotherapy.
Like you, I was diagnosed with PV at the age of 50. My HCT was 0.50 and platelets 1.5 million, and I was having visual migraines all the time, and high blood pressure. I have been on Pegasys now for just over 4 years years. It has been a life saver! My counts all normalised within a year. I started injecting 90mcg/week for the first year, then reduced to 45mcg/week, then every 2 weeks, and currently I inject only every 3 weeks. I lead a normal and very busy life with full-time demanding work and teenage sons. Most of the time I forget I have PV (the 3-monthly visits to the haematologist, the forums, and the Pegasys injection times being the reminders).
I suggest you inject at night (Fridays for me so it does not affect work), take some paracetamol in advance (at least in the first few months, I stopped taking paracetamol after 1 year as I have no immediate side effects any more) and use EMLA cream (over the counter anaesthetic cream) on the injection site (lower tummy) 30-40 min before, so you don’t feel a thing and takes all the dread away. I know it is only a prickle but I would rather not feel it! it is crucial to start at a low dose, 45mcg or 90mcg. I have had no side effects of Pegasys at 45mcg. When I was injecting 90mcg I experienced some temporary hair thinning and frizziness, sore mouth and dehydration. But all minor. Please do get in touch if you have any other Peg related queries! All the best to you, Susana x
Hi, thanks for sharing your experience with PV. Happy you are doing well, working full time wile having PV. Good for you and your family.
Did you have pain in head and eye(s)? Thrombosis caused by PV brings such pains, so making full- or part-time work hard/impossible. How did you work full time?
I don't have pain in head and eyes, thankfully. I have very few symptoms presently so working full-time is not a problem. Pegasys has been a great treatment for me. x
I was diagnosed 4 years ago as well and was put straight on to hydroxycarbomide and venosections. It wasn’t until the doctor told me I could only get the prescription done at the hospital that I was told it was a chemotherapy drug. The word cancer floated around in my head as I had only just got the all clear from breast cancer. Can I just reassure you taking the Hydroxy was the best thing I ever did. There are niggly side effects but compared to the symptoms it’s a no brainier. My bloods are now “normal” and have been for almost the whole time. I hope I never have to change medication.
You should remember that taking the chemotherapy is far better than having a stroke or heart attack.
Talk about your fears to your haematologist, if they are anything like mine they are very approachable.
Hi, I do understand your fears about chemotherapy. I got in a right state when the venesections were no longer enough to keep my PV JAK 2 pos under control. I did start hydroxea, the venesections were draining me of energy anyway. I haven't had a problem other than my condition seems to be highly volatile and I am having to increase then decrease my prescription. Our condition has to be managed in order for us to live life to the max, whatever that is for each individual. I am still here on this crazy ride, and I am very thankful.
The sun will kill your fr skin cancer quickly using this med. my husband lasted 12 yrs went well before his life expectancy bc we were not told to stay out of the sun
I can’t really add much more other than Interferon has worked well for me - and please note that it is not a chemotherapy drug; it is just used to treat forms of cancer, which I think is where the confusion lies.
Have a read of both and then write down any questions you want to ask your consultant before you make your decision.
I have been taking Hydroxycarbamide now for almost 13 years, and have had no problems, apart from, very rarely, mouth ulcers, and my hair hasn't fallen out so you should be ok.
It is a very difficult decision to have to make, and we all do understand how you are feeling, so I hope we have all helped in some way.
Hi Welcome, I’m Et , regarding both anagrelide and hydroxicarbomide the positives definitely out way the negatives. Some people are side affects free we are all different.
I have had a MPN for over 30 years. Was ET - progressed to PV about 6 years ago. Following a spike in thrombocytosis following surgery in January 2018, I went back on hydroxyurea for about a year. While I had tolerated it before, it turns out that I am now HU-intolerant. Toxic effects even at low doses. I am off it now. It may have had some long-term negative effect on my intestinal endothelium. The jury is still out on that issue.
While my experience with HU is negative, others tolerate it better. ALL of the chemotherapies had potential adverse effects and we each respond differently to them. You did not mention Jakafi (aka Jakavi- aka ruxolitinib). That is another consideration worth discussing.
It is also worth discussing sticking with phlebotomy-only as a treatment approach. This is the approach I have taken based on consultation with one of the leading MPN Specialists. This doc, (Dr. Jerry Spivak, Director MPN Clinic - Johns Hopkins Hospital) takes a different approach than the standard treatment protocol most docs follow. This is based on his own experience and the research that he has done. Not all agree with this approach.
There is emerging thinking that it is best to individualize the treatment protocol for each patient based on their individual presentation of symptoms. Rather than chasing numbers on a CBC, basing treatment on the issues and risks each patient faces makes a lot of sense to me. As an example - I was on aspirin for 30 years, but at this point it appears that my body reacts to excess platelets by tending towards bleeding rather than clotting. Add to that that in the last year I was diagnosed with a hemorrhagic brain tumor. Pretty clear that aspirin is not necessarily such a good thing for me. (The tumor has been removed, but will likely recur). However, there are others who have had thrombosis, TIAs, etc who clearly need to be on a blood thinner.
Since you are clearly symptomatic with the PV, the symptoms need to be addressed. The challenge is to figure out a treatment approach where the cure is not worse than the disease.
Here is a link to an interview with Dr. Spivak where he discusses his treatment approach. mpnforum.com/spivak-how-i-t... . Reference is made to his recent published article in the journal Blood. (Jerry Spivak (Johns Hopkins University School of Medicine) Blood First Edition Paper, prepublished online May 31, 2019; DOI 10.1182/blood.2018834044). The full article is worth reading if you can get access to it.
In the interest of balance, here is another article by Alessandro M. Vannucchi that recommends a more conventional approach ashpublications.org/blood/a... .
While the two docs agree that thrombocytosis alone does not increase the risk of thrombosis and that it is critical to control hematocrit, they disagree on how best to accomplish this. They also disagree on the use of aspirin for some patients.
I believe the best thing any of us can do is to educate ourselves about the MPNs and what the treatment options are. To me it is really clear that one size does not fil all when it comers to treating MPNs. Given how rare these disorders are, most hematologists just do not have the depth of experience to provide truly individualized treatment. That is why it is so important to consult with a MPN specialist. If you have not already done that, please consider doing so. It is worth the time and effort. Here is a link to patient-recommended MPN Specialist docs mpnforum.com/list-hem./ .
I have the JAK2 617f mutation with a mutant allele burden of 25%. My symptom load from the PV is relatively indolent. Never have had any thrombosis, but do tend to be bit too bleeding prone - especially when on aspirin. I actually have more trouble with the secondary inflammation-related symptoms. My Integrative medicine specialist has suggested a trial of Low Dose Naltrexone, which I am looking into as an option.
If you do decide to pursue chemotherapy to control the symptoms you are experiencing, do be sure to research all of the options. Here is a recent article on interferon that is vey informative (also very technical - have a medical dictionary handy). ncbi.nlm.nih.gov/pmc/articl... .
There is a lot out there on Jakafi (aka Jakavi aka ruxolitinib). There are good reasons to consider this option too since it directly addresses the problem and might provide more help with the symptoms other than hematopoiesis. Read with a grain of salt as much of what is out there is sponsored by Incyte (drug manufacturer).
He was terrified to go on hydroxy chemo tablet . He needed too many venesections and he was absolutely drained so he opted for hydroxy he was fine for two years still needed a 3 monthly venesection .
His spleen had doubled in size which led his consultant to do a bone marrow biopsy. This revealed early stages of myelofibrosis. He sent him to see the transplant team they agreed he's still fit and well and they would try him on ruxolitanib.
We know there's 9 unrelated donors who are a 10/10 match if he ever needed a stem cell transplant.
Since starting ruxolitanib in February all his bloods are in normal range and his spleen has reduced back down.
His diet has a massive impact on his exhaustion. He's avoiding sugary foods and filling on more protein and he's been quite good.
Don't be afraid to start hydroxy like I said my husband hasn't had any problems on that at all. Just drink plenty of water .
It seems I need to carry out some research and find what suits my particular condition as you said.
From the the feedback so far on the platform I feel more positive going forward, as many of you seem to have few side effects from your chosen medication
Hello ... I’ve been trying to talk to you but am not familiar with this site and keep getting it wrong .... anyway ...I remember you saying Thankyou for letting you vent in our last post ... just to say I’m always around and your welcome to talk or vent whenever you want ... so good to talk to people who are on the same weird journey lol....Lainie
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