I'd like to hear from any long term Hydrea PV/ET patients out there?
I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused Hydrea and just stayed on daily aspirin. About 18 months ago my diagnosis was changed to PV. So I decided to take daily 1 Hydrea (500mg), My counts are well controlled and I have no side effects from the Hydrea.
I'm considering switching to besremi with the promise of disease remission.
However I worry about possible side effects.
Also my Dr. says because of my age not clear I would benfit from it.
I would like to hear from people who have been on Hydrea long term > 5 years.
What their experience has been?
Thanks
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Jamesxyz
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HI, I have been on hydroxycarbamide since 2008. Different doses over the years. When you say that you are thinking of switching to Besremi with a promise of remission, I just wonder who promised you that?
I was HU-intolerant (toxicity at low doses) and it did not adequately control the erythrocytosis. I have done much better on the interferons, Pegasys then Besremi. they have been much easier to tolerate and much more effective. I just posted on update on mu recent results, a reduction in variant allele frequency from 38% to 09% in 18.5 months on a low dose of IFNs. I am very glad I opted for Besremi.
Note that we are all different in how we respond to these meds. Each of us has a different profile. i was diagnosed with ET about 30 years ago. it progressed to PV about 9 years ago. I also have an additional non-driver mutation, NF1, that increases my risk of progression of the PV. I am currently 67 years old and overall in pretty good health, despite some recent medical adventures. There is no question that Besremi was the right choice for me. I have maintained a complete hematologic response without needing phlebotomy. I may be headed towards a full molecular remission (hopefully).
I am not aware that your age has anything to do with whether you would benefit differently from Besremi vs Hydrea. These are two different classes of medication with two different mechanisms of action. The real issue in many healthcare systems is the difference in cost. Besremi = $180,000/year. Hydrea = $564/year (30 tabs/month). Pegasys (the other IFN) = $50,124/year. This is calculated into how healthcare system forumaries work.
You will have to decide for yourself whether the benefit-risk profile of Beremi is what you prefer for your own treatment. this is a conversation to have with your care team. Hopefully, your care team already includes a MPN Specialist. Regular hematologists usually have little experience managing MPNs and may have no experience managing a patient on Besremi. here is a link just in case mpnforum.com/list-hem./
Here is a link to the post where we are discussing responce to Besremi. There are some great comments and links to information from other members of the forum. healthunlocked.com/mpnvoice...
Thanks for detailing drug costs.Useful as many in the UK and other National Medicine schemes simply have no idea of costs as treatment is free to them. But the differences are enormous.
Actually the NHS is funded by all of our national insurance contributions that we pay to the government. I've paid national insurance contributions all my life, which is about forty years. So we do in turn pay for our medications.
Very True..but my point was the service is free at point of delivery and no differentiation made on medicine type or operation.Not a bad thing but "pills" have vastly differing costs and choices must be made when prescribing highly priced treatments
I was on HU for just over a year, so not really responsive to your question. But some comments on Bes:
I switched to Besremi last winter. Your Dr's concern on your age is old fashioned thinking. In the last few years it's recognized that IFN can benefit many MPNs and starting sooner is best. Esp as you're had a type of progression IFN is worth discussing.
The side effects of IFN (Besremi, PEG) can be concerning and some patients do need to quit, same as HU. But Dr will (should) keep close track of your blood counts as you begin esp liver results and others. I've also noted elsewhere you should get checkup by an eye Dr before starting and some follow ups as there are retinal risks.
IFN does hold promise of good odds remission of the mutation but of course it's not literally "promised". Nothing is for us unfortunately. Like Hunter I have had reduction in allele, if less dramatic from a lower start.
But beyond maybe helping the mutation IFN also improves odds of non-progression and "event free survival". This is discussed in various posts on the forum.
According to Scottish Medicines Consortium, "In a phase III study, ropeginterferon alfa-2b failed to demonstrate non-inferiority to hydroxycarbamide in treatment-naïve patients who required cytoreductive therapy and in patients who had a partial response to hydroxycarbamide."
There are two types of comparative trial designs: superiority and non-inferiority. The makers of besremi chose to use a non-inferiority trial design in their phase III study, meaning that they already knew that besremi could not have been better than hydroxycarbamide and therefore use a non-inferiority design. But, even with that, they still failed to demonstrate non-inferiority to hydroxycarbamide.
Why pay big bucks to make yourself suffer and most likely not achieve better results?
I read thru the report briefly. My take is SCM considers PegIFN to be a valid therapy but the extra cost of Besremi's version is not worth it.
So they are not dismissing IFN as shouldn't we, but they are reacting to the super high Bes price.
See plot here and in next reply.
--
-Besremi used Rux as one of the comparisons in the submission to SCM. I've not seen this is the other Bes trial/approvals. If it is unique here that would mix up the results since for example the starting VAFs were very different as they say here.
- They state that "Molecular response was achieved by fewer patients given ropeginterferon alpha-2b" in Proud PV (3 year results) This is factually not accurate, see the familiar plot here. They cite three reports, I have not studied these but the plot is hard to refute, I welcome any details from the cited reports.
-"Study selection was based on the availability of data for mean JAK2 allelic burden, which is not one of the main clinical criteria used for disease management and was an exploratory outcome in the included studies. The BSH guidelines note that the clinical utility of JAK2 allelic burden is not well established" Quite true. But ask most MPN patients and they will value it quite highly. Plenty of recent info is pointing to a value, but it's not yet clinically actionable.
-"MPN Voice has received 37% pharmaceutical company funding in the past two years," Interesting note. But almost everything in the field has corporate money, the subject of many movies.
-"The major limitations of the economic analysis relate to the reliability of the clinical effectiveness data on JAK2 used to inform the model; the appropriateness of JAK2 as a model response parameter; and, the comparability of the modelling approach to the ruxolitinib appraisal" Agree Jak2 goals are still evolving. The Rux aspect is curious.
-"The assumed dose in the base case was a lot lower than the dose received in PROUD-PV and CONTINUATION-PV." This is 1st I've seen of this, it would be helpful to see the report that proposes the lower dosing (which better matches our real experience)
What is the clinical significance of lower AB? Both FDA and EMA did not mention such clinical data in their approval announcements of besremi. Why did FDA and EMA both fail to recognise this? Is this a real benefit to patients or just a unique selling point for marketing to justify for a $8,000 unit price?
The maker of besremi is planning to run a clinical trial in the US using 250mcg-350mcg-500mcg approach. Given that interferon therapy works for some patients and not for others, they should actually run the trial with the intent to identify the specific subpopulation of PV patients, who may benefit from thi drug.
However, this may lead to lower future drug sales as unfit patients will be screened off.
It is all about money rather than actual patient care. This is sad.
Interferon therapy works for some patients but not for others. It is like a box of chocolate, you neer know what you're gonna get. They should do more research on defining the suitable patient population for besremi.
Here is another plot on the latest 6 year data. Clearly fewer bad events on Bes. PEG has shown similar benefits. This was not an endpoint in the trials so none of SCM nor others were able to consider it.
Hi. I’ve been on Hydroxyurea since 2015. The only problem I’ve had are a few mouth sores if I forget to take it a certain way. I drink water immediately before taking it so my mouth is moist & then swallow some more water right after the pill. The most I’ve been on was 10/week and that was only a year or two. Katie
I take mine buried in a giant tablespoon of yogurt. I bury the pill and it slides down without encountering my tissues. A wonderful friend told me to do this. I’ve had to up my dose to ten a week from four to prep for hip replacement and was worried about side effects. So far all ok. So thankful for all these responses as I learn more here than from docs.
I have been on Hu since 2011 and am now 80. Other than fatigue and always a 'sore mouth' hovering on the horizon, I cannot pinpoint other adverse effects. My blood has been and is well-controlled but have had several problems: blood clots in both lungs probably as a result of 5 months of steroids prescribed for chest problems and an occlusion in my left eye resulting in loss of sight in the central panel. Have just had a diagnosis of emphysema -never smoked, worked abroad - only polluted area was 3 years in Khartoum (desert sand?). Sallie
Hi I have ET that has just progressed to MF I was diagnosed with ET in my mid thirties I am now 71, I have been on Hydroxycarbamide for 23 years at 1000mg a day and it’s only in the last 3 or 4 years that I have really suffered with any side effects from the Hydroxy, in as much as I have had 16 skin cancers removed from my head, face and hands or really anywhere exposed to the sun even though I’ve never been a sun worshiper and covered up, numb feet and ulcers on the soles of them for the last three years do cause me mobility issues as well but apart from these last few years I had an active life, When I was first diagnosed I asked the consultant if I would die from ET he replied the treatment would probably do that first. Still alive and kicking although with a few problems I won’t stop taking the Hydroxy as apart from the above issues I tolerate it well and always have. I’ve lived with this Chemo drug in my body for over half my life so any one who has qualms about taking it I would say it has worked for me so give it a chance and stick with it if you can, and I hope you all have a merry Xmas an many more happy New Years to come.
I was diagnosed with PV in 2015 when I was 71. After a few months of treating it only with phlebotomy, my hematologist put me on hydroxyurea, initially at 500 mg/day. This worked well for a while but platelets continued to climb so the dose was increased, eventually to 1000 mg/day. This led to serious skin reactions, so the dosage was reduced to 500 mg MWF. This was tolerated but HCT stayed high, which led to frequent phlebotomies. I then consulted with a MPN specialist, who told me that I was having too many phlebotomies and should switch to Jakafi, which I've been on for almost four months now. There were some questions about the proper dose, but we've settled on 10 mg/day, which seems to be working well now.
Maybe some of those who started on one of the interferons in their mid 70's could weigh in and let us know how they tolerated it starting at their age and how it has affected their blood counts and AB/VAF. It seems that most of those starting on interferon (who are posting here) are less than age 70. It would be nice to know how those in their mid 70's have tolerated the interferon and what results they have had thus far. Hoping to hear from some as I am also nearing mid 70's and currently on HU.
I was diagnosed with ET + Calr in 2015 have been on Hydrea for about 7 years. I started off at 500mg daily but the dosage was gradually increased over the first 3 months to 1,000/1,500mg every second day - a total dose of 9,000mg a week which has resulted in constant good blood results every 12 weeks and no side effects of any kind. I am 77 years old and also diabetic (Type 2). I am fit and active playing golf 2/3 times a week all year round.
I was on HU on varying dosages from my mid thirties for about 15 years until it stopped working, then a mixture of anagrelide and HU for a number of years. I was changed to pegasys which unfortunately I had a rare and dangerous reaction to and am now on ruxolitinib. During my HU years I recall occasional mouth ulcers and some skin infections. It was only when the drug was greatly increased, as it was obviously not working well any longer, did I have feelings of toxcity. However throughout the period on HU I led a normal busy life and no-one other than close family knew about the problem. I'm now 69.
I'm 72 and have taken hydroxy for 6 years. Dose has varied but currenly 5500mg /week. Side effects to do with numbness in fingers and toes, otherwise I am fit and healthy. That said, 'the grass always looks greener on the other side and I have an annual discussion with my haem about switching to peg interferon -so far I have not been encouraged to do so
I'm ET/JAK2+, 68yo. I've been taking Hydrea for a bit over 4 years and it has returned me to feeling like a normal person living a normal active life. I was started on Hydrea after recurring double vision episodes. Platelet levels are now within 'normal' limits.
Side effects...initially some nausea, so I take it at night and sleep through it. Skin changes include some thickening in patches (arms and backs of hands, which I exfoliate regularly). Most serious side effect is occurrence of malignant SCC. I have now had 2 of these cut out of backs of hands. Both grew quickly (several weeks) to size of a bean seed. But then I am a redhead who has spent a lot of time out under the Aussie sun, mostly wearing long sleeves and gallons of sunscreen.
I’ve been taking hydroxyurea since 2008. This year is the first year I’ve noticed side effects like frequent mouth sores and lung issues. They say I have COPD and two small lesions in my lungs. I also never smoked in my life. I’ve had shortness of breath since the beginning but it was managed. This year when I get up in the morning, I can barely breathe and I feel very faint. I’m post Et Mf.
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