Should I switch from Hydroxy to other meds or no... - MPN Voice

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Should I switch from Hydroxy to other meds or no meds? What would you do?

Yakety_Yak profile image
48 Replies

Hi everyone, I know the answer for this probably lies in the wealth of very informative posts on here, I just never have time to read through all to try find any advice on this so cheating to try find quick feedback sorry haha. I was diagnosed about 9 months ago with ET Jak2+. I was on Hydroxy for about 5-6 months then (long story short) an existing 'patch' on my leg that I never got checked out (yes, stupid) started changing and I had biopsy done and turned out to be Bowen's disease. Luckily not serious and I've been using chemo cream on it for about a month. The haematologist at that time took me off Hydroxy when I informed him that I went for biopsy for skin cancer. I let the nurse know when it was diagnosed and told of cream I would use, who informed the haematologist. So I've been off Hydroxy for about 2 months now. Here is my dilemma : When I was on hydroxy I started to feel a lot better and many symptoms one by one started getting better or disappearing. So I was happy on it. Just to state I genuinely don't think Hydroxy caused the Bowens but the 'patch' I had for years suddenly and rapidly started changing few months into using it and I can't be sure it was just co-incidence. Again, not saying it caused it. BUT possibly if someone has skin damage over years and skin cancer runs in the family maybe I had a proneness and the combination of that together with the Hydroxy (with increased risk of skin cancer warning) did it. I will be speaking to my haematologist on friday and hear what my numbers are currently from blood test etc, and then obviously we'll discuss medication/change. He will certainly give me advice what he thinks. But I should I feel have sort of made a decision too about what I want to do going forward. I was happy on Hydroxy, after initial bit of nausea then settled and tolerated it very well I think. It slowly was decreasing numbers and improving symptoms as said before. But now obviously I'm a bit scared to go back on it. I'm also a bit scared of going onto injections as the side effects sound much worse for me personally that's why I kind of chose Hydroxy to start with. I guess there's the third option of not being on meds for a bit/for good and take that risk but I'm guessing that's a bit dumb as I'm not low risk hence being on meds and also I feel much worse being off meds so far it's really affecting me. I've read over and over about the different medication (as I did when I was first told I'd go on meds) but I am really struggling to make up my mind and go into that conversation with an informed idea. So any advice would help. Especially if someone on here has switched from Hydroxy to Peginterferon or something else and can tell me how they got on. Or anyone been diagnosed with Bowen's/more serious skin cancers and how it's affected medication decisions?

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48 Replies
piggie50 profile image
piggie50

Hi,I’ve been on Hydroxy for 8 years. I’ve had two squamous cell cancers removed, one on the back of my hand and one on my forehead. I’ve also had a few small spots treated by freezing. I am quite careful in the sun and use factor 50 sun cream. I haven’t stopped taking Hydroxy, the consultant felt my SCC’s were caused many years ago probably in my teens when sun screen was unheard of.

I know skin problems are a side effect of Hydroxy but it works for me in every other way so I haven’t thought about changing from it.

Judy 💐

Yakety_Yak profile image
Yakety_Yak in reply to piggie50

Hi Judy, thank you so much for replying! And for very good feedback I'm feeling a bit more justified in my gut feeling to go back on hydroxy now. I am sorry to hear you've had different skin cancers that's harsh😔. The squamous cell carcinoma in-situ (other name for Bowen's disease) is just a little patch on my leg luckily. I have various sun/age patches especially on my face that I now feel I should keep a close eye on. I also showed the dermatologist (at same appointment for my leg) some new patches on my face that have got lighter and 'thicker' than the rest of my face - she said doesn't look like anything concerning but couldn't say what it could be or could be causing it, I even suggested maybe hormones but she said she doesn't know (very helpful). I will probably get it checked again by GP just in case, which makes me feel like an idiot because its been checked by a dermatologist but I've learned from experience that doctors aren't always right and if something feels/looks wrong you should insist. Yep, exactly the same like you with sunscreen when young - unheard of growing up and intentionally sunbathing in 20's terrible right? I've been very careful for last 20 years especially since I developed sun sensitivity/allergy around this time. Also don't like being hot and being in the sun anymore I tend to stay in the shade if I can so that helps and in summer walk our dog when it's cooler. I wear a foundation with spf25 whenever I go out. The high spf creams generally feel awful on my face and especially when it's hot and I sweat and it irritates my eyes but yes definitely if we (haematologist and I) decide to go back on hydroxy I will definately find a spf 50 that I can tolerate on my face. Can you recommend any? If not I'll have to invest in a big sun-hat I guess. What are you on hydroxy for? ET or another MPN? I wish you all the best and pray that there's no more skin cancers on the horison for you (and me). It's hard enough to deal with our health without xtra 'bonuses'. I'm not moaning I know I'm lucky and it could be worse but still allowed to sometimes feel a bit sorry for myself. SORRY for the loooong messages I bury my head in the sand and then once per while I decide to open up and 'overshare' haha. Stay in touch.

piggie50 profile image
piggie50 in reply to Yakety_Yak

Hi,

I have PV diagnosed 16 years ago. I use La Roche Posay on my face and try to wear a sun hat where possible. One spot that I had frozen was in the parting of my hair on the top of my head, so I’m more aware of that area now. I’m a sun lover, walk the dog etc but sit in the shade if in the garden or on holiday. I can’t tolerate it like I used to. ( I would lay in it for hours)

I’m due back at the dermatologist in about six weeks for a check on recovery from the last excision, she also said she will check me all over for any other spots. I will ask for regular checks, if only maybe once per year.

I remember getting sun stroke when I was about 15, I used olive oil and vinegar thinking it would make me brown! How stupid was I ? I have freckled skin. 😂

Take care

Judy 💐

Yakety_Yak profile image
Yakety_Yak in reply to piggie50

I've posted an update about my decision (somewhere on this thread). Thanx again

Pkm52 profile image
Pkm52

Hello,I was diagnosed with JAK2+ ET in 2017. I started Hydroxyurea 500mg twice daily. I stopped having headaches (presumed to be migraines) and visual distortions I noticed driving at night. I too generally felt better.

I read the possibility of developing a cutaneous squamous cell carcinoma. I added a dermatologist to my care team for routine skin checks. I had two lesions that were biopsies and were identified as cSCC. I am a health care provider. I have done skin checks as part of routine screening. Neither of them were inflamed, scaling, itching or changing in appearance. I would not have selected either to biopsy. It was good that I saw a specialist. I go every 6 months for skin checks. My Dr. treats with liquid nitrogen and I have 5FU cream that treats these.

I am 70, blonde, blue eyed and spent time in the sun and in tanning beds in my younger years. So, I can’t blame my HU as the sole offender.

Maybe you could ask your dermatologist if with routine checks you could develop a cSCC lesion that could be a problem between appointments.

I am much more comfortable now with situation. In the USA Pegasus (Interferon A) costs around $4,000 dollars a month. I am not on government assistance so taking that HU alternative isn’t an option.

So, that’s my story. I hope it helps.

Yakety_Yak profile image
Yakety_Yak in reply to Pkm52

Hi Pkm52, thank you so much for sharing your experiences with me, it definitely helped yes I will take it all on board not just in making my decision but also in considering routine regular dermatology checkups. We're very lucky in UK with NHS healhcare but I can't imagine we can get that but I'll look into it and think about how maybe. I unfortunately can't afford to get any private healthcare to get it done that way.

Wow, I'm astounded that that's how much you would have to pay for the pegasus in USA! Understandable then that Hydroxy makes more sense combined with the fact that it has helped since the start with your symptoms just like me with mine. The best of luck to you, thank you again for replying I appreciate it.

Yakety_Yak profile image
Yakety_Yak in reply to Pkm52

Also, interesting what you were saying about being a healthcare provider yourself and you do skin checks and wouldn't have flagged yours if you saw them. I think that skin cancer is a very tricky thing to diagnose from what I've heard and read. I also genuinely all the years never thought of getting the little patch on my leg checked until it started rapidly changing. I thought it's just a big sun spot/patch as I have those especially on my face. I'm lucky that I got it checked and got treated early before it turned into worse. The 5FU cream you use I think might be the same as efudix fluorouracil cream I've been using.

piggie50 profile image
piggie50 in reply to Yakety_Yak

I tried efudix, prescribed by Dr before the excisions, it didn’t work for me.

Yakety_Yak profile image
Yakety_Yak in reply to Pkm52

I've posted an update about my decision (somewhere on this thread). Thanx again

EPguy profile image
EPguy

If you don't have insurance in the US you are usually out of luck however PharmaEssentia, who makes Besremi INF, has programs for those without insurance and not on Medicare.

pharmaessentiasource.com/fi...

INF has potential advantage over HU in being able to reduce allele (Jak2+) levels for many. If you want to avoid HU this could be a good option to discuss with your Dr.

I have just switched to Bes from HU recently.

Yakety_Yak profile image
Yakety_Yak in reply to EPguy

Hi, thanks so much for your message. Yeah I've heard how tough it is without insurance in US. I'm in the UK but that's also helpful information for anyone on here from US. I've read a bit about allele burden reduction with Interferon even before I started any meds and it's obviously a big plus. But having weighed up all info especially potential side effects I had to personally go with Hydroxy as a first choice even if just for a while . I felt I needed to choose the option of better tolerated and which potential side effects would be worse for me personally and also in regards to other previous/ongoing health issues. To see how it goes on Hydroxy first then consider changing later. Thanx again, I'll add this advice into the mix for making the decision. You say you switched recently, how are you getting on so far with INF compared to HU? Best of luck, hope it'll go well and prove to be helpful and beneficial to you.

EPguy profile image
EPguy in reply to Yakety_Yak

Sorry for the international confusion. I also goofed that even if you can access Bes in UK, it is currently approved only for PV, so NHS is even less likely to pay.

All of HU, PEG, and Bes have US FDA black box warnings. These are not that common and are for the possibility, even if low, of severe side effects. I found the HU label esp scary. But all three are used because they work well for enough patients to be worth the known risks.

It seems HU is working for you. I got great blood response also, but symptom reduction as weaker . One note is you should coordinate closely with your Dr on the dose. Mine worked too well after ~4 months and I did better with a reduction. Drs sometimes hit it hard to get quick results, but an adjustment can be useful sometimes.

You might consider Bes if/when in the future it's approved in UK for ET. For some members here, Bes has worked out better than PEG.

My transition is going ok, the period of taking both was rough. I will post more details after my CBC next week.

Yakety_Yak profile image
Yakety_Yak in reply to EPguy

Haha no worries you didn't take any oath of truth before you wrote that. The black box warnings sound lovely, luckily the hydroxy just had a red warning sticker with cytotoxic on haha. My numbers were doing ok but platelets were going down very slowly. Symptoms I feel improved a lot in a short time and got worse substantially when I went off it. So yes I do feel it worked well for me. Thanx for the advice yes I'll keep an eye on that (dosage) regardless of which meds I'm on. I started with 500 every day and increased to 500mg a day and 1000mg on weekends. Sorry to hear it was rough, yes please keep us posted after CBC. I'll also try remember to post an update after my telephone appointment with haematologist on friday.

EPguy profile image
EPguy in reply to Yakety_Yak

I needed 4 months to get PLT in normal range, I've posted this image before. I was on 1000/day till the low point where it went to just over 500/day. If you were on 1000 it might go faster but your Drs advice is good in my opinion, to reduce bad effects.

PLT
Yakety_Yak profile image
Yakety_Yak in reply to EPguy

I've posted an update about my decision (somewhere on this thread). Thanx again

hunter5582 profile image
hunter5582

You are getting at the need to do a risk-benefit analysis for cytoreduction and if cytoreduction is indicated which agent to use. There are number of "it depends" questions to review.

How high are your platelets?

What co-occurring medical conditions do you have?

What is your age? Most but not all MPN Specialists consider this.

Have you have incidents of thrombosis, hemorrhage or microvascular symptoms?

VERY important - what secondary symptoms do you have that are a problem?

What risks and symptoms to you need to control?

Do the benefits of cytoreduction outweigh the intrinsic risks of the agents used?

If the answer is yes to cytorection, then which agent to use? There are different choices. Each has its own risk/benefit profile. Your individual history and risk-tolerance/preferences must be considered. These four would be considerations.

Hydroxyurea - first line

PEGylated Interferon - first line

Anagrelide - second line

Ruxolitinib - second line

HU and RUX both have skin cancers as a risk. Given your history, this is a valid concern. Caution is indicated. You indicate concern about potential adverse effects from PEG. Does the concern about what might happen outweigh the risk of what did happen with HU? If so would ANAG be a better choice based on your profile and preferences?

It sounds pretty clear that cytoreduction had benefits. This may well be due to a reduction in inflammatory cytokines occurring as well as reducing thrombocytosis. You may well find significant benefits to cytoreduction that outweigh the risks. You may find an agent that is easier to tolerate than HU. Or not. You may also just decide to tolerate some adverse effects because the benefits justify tolerating them.

As for what I would do, my situation is different. I did treat the PV with both HU and venesections. I am HU-intolerant, experiencing toxicity even at very low doses. I did OK on venesections for a couple of years but then the side effects became worse than the PV symptoms. I opted to start on Pegasys until Besremi was approved. I achieved a complete hematologic response on low doses of the two types of IFN. I have only had very minor side effects (mild lymphopenia and mild itching). The benefits of IFN clearly outweigh the risks and side effects for me. Emphasis is on for me.

This is a decision we each have to make based on our treatment goals, risk tolerance, and preferences in how we manage our MPN. I am sure you will be able to make a good decision for yourself once you evaluate each of your choices.

Here are a couple of links that may help. Each one is a link to a relevant med.

ePocrates is an excellent ressouurce. You can sign up for a free account.

online.epocrates.com/drugs/...

Drugs.com is another good resource for meds info. no account needed.

drugs.com/monograph/hydroxy...

RxList.com

rxlist.com/agrylin-drug.htm

Here is some information you may find helpful in considering treatment options.

mpninfo.org/conferences/202...

legeforeningen.no/contentas...

Hope this helps even if that answer to your question was a bunch of questions.

Yakety_Yak profile image
Yakety_Yak in reply to hunter5582

Thank you very much hunter5582. You are always very helpful on this site. The questions all made sense in what you're trying to get me to consider and think about step by step, so yes it helped A LOT actually. Once I've read the links you've added and re-read and digested your and everyone else's replies I know I'll be more informed and therefore confident in the choice I make. Take care

Yakety_Yak profile image
Yakety_Yak in reply to hunter5582

I've posted an update about my decision (somewhere on this thread). Thanx again

Jennytheb profile image
Jennytheb

Hi, when I was first put on Hydroxy I asked my hairdresser and she didn't know so just went with it. I have my hair coloured every 6 weeks and have done so for the 6 years have been on hydroxy, no problem at all. It is a relief to be able to carry on normally isn't it. I have dry skin but as you say, probably enhanced by hydroxy but that's all. Good luck

Elzbietta profile image
Elzbietta in reply to Jennytheb

I don’t wish to be alarmist but when I was first diagnosed one of the first things a Dr told me is that ET is highly prevalent amongst hairdressers and dental nurses. He asked if my mother was a dental nurse or hairdresser. I advised him I was the daughter of a dentist and used to play at my father’s surgery with materials including pieces of mercury. He said that exposure to these and chemicals in hair dye has been associated with ET. I subsequently had a test and discovered my mercury levels were dangerously high. I immediately changed to organic hair dyes, and no alcohol or work for a year and had my mercury fillings removed. I remained in the 900 to 950k for the next 10 years.

Although my haematologist was not convinced how or what I did may have helped he was very supportive and told me whatever I was doing may be helping and to keep doing it!

My platelets were on a steep trajectory upwards when I was first diagnosed. He had advised me it did not look good but for 10 years I was very stable.

About ten later after resisting HU for years and maintaining the level around 900 I had a sudden rise up to 1250 and a small clot. I had agreed with my Dr to take HU when and if I hit 1250. He was right. May have been better to go on it sooner.

Anyway, I wonder how many more ET patients have had exposure to mercury or hair dye or have heard of this correlation?

I think organic hair dye really worth considering. Best, Elzbietta

Wyebird profile image
Wyebird in reply to Elzbietta

Wow interesting regarding the mercury, in my day schools had it. When in the 6th form I always new my hockey stick from anyone else’s because I had a blob of mercury on it

EPguy profile image
EPguy in reply to Elzbietta

There has long been discussion of a possible relation of MPNs to various toxics, Benzene for example. The well known Pennsylvania PV cases ID'd these toxins of interest there:

<<arsenic trioxide, benzo(a)pyrene, potassium chloride, ethylbenzene, benzo[k]fluoranthene, styrene, cadmium chloride, hydroquinone, 1-1,1-trichloroethane, TCDD, TCE, methylene chloride, sodium cyanide, and manganese chloride. The scientists also noted that some of the toxins, namely benzene, cadmium chloride, chromium oxide, potassium chloride, lead oxide, and sodium cyanide lead to increased cell death and 100% of the cells had DNA damage after exposure to the toxins.>>

targetedonc.com/view/advanc...

No mention of mercury there, but doesn't mean it's not nasty and an MPN concern. Hairdressing sprays/dyes might have some of these chemicals also, which would add to any mercury.

Jennytheb profile image
Jennytheb

Forgot to say have Jak2 ET if that helps.

Orangeboykitty profile image
Orangeboykitty

I actually couldn't tolerate HU at all, so this may not be a fair assessment, but I know it promotes non melanoma skin cancer, so I wasn't anxious to be on it anyway because I live in Southern Israel where the sun blazes at least 6 months of the year. I've tried almost every medication available for PV during the 8.5 years that I've had it. Now I'm on Besremi and it seems to be doing very well for me. Very few side effects and PV symptoms are starting to disappear. Bone pain is gone and the neuropathy I had is almost gone. It's kept my numbers in check on the lowest dose, 50mcg every 2 weeks. We're all different and it may not work as well for you, but I'm happy that at least it's not chemo and doesn't promote skin cancer. Some people find that after they've been on it for two years, they can space out injections to only once a month. I've only had 6 injections so far so it's too early to tell if that'll happen to me. Hope so!

Yakety_Yak profile image
Yakety_Yak in reply to Orangeboykitty

Thank you so much for your advice, I did take it on board with all others to make the decision😄

Wyebird profile image
Wyebird

Hi, below is a picture of sun cream my friend uses. She had a cancerous growth removed from her face last year. Her consultant says it’s one of the best. I googled bowen’s disease and I’m curious as to why it wasn’t lasered- job done! Do you have an MPN Specialist? Reading other posts it seems that going back on hydroxi is fine. I swapped to Peg about 9 months ago with no regrets. Wished I’d been put on it much earlier. We are all different, different amount of meds etc and swap for different reasons. Good luck with what ever you decide.

Picture of high factor sun cream
Yakety_Yak profile image
Yakety_Yak in reply to Wyebird

Thank you very much for the recommendation, I'll definitely look into buying this! I don't have a specialist yet I think it's about time I ask to get a referral. To be honest I'm not sure how dermatologists generally and especially here work in making their decisions. I had the biopsy and pictures done on that day right after the appointment. The results took about a month then I got a copy of the letter sent to GP saying it's Bowen's and what the GP should prescribe. I assume because our NHS is under a lot of pressure, short of staff and maybe that department is very busy they don't have appointments for 'procedures' unless it's very serious/urgent. Or maybe because the area that needed treatment is very small. I don't know but hopefully the cream has worked and it'll be ok, I'll go see the GP soon and ask what they think. I'm glad you're doing well on Peg. Yes, we're all different and have to make the decisions in light of our individual circumstances.

Jazzyb50 profile image
Jazzyb50

Hi, I had malignant melanoma and a Basal Cell Carcinoma before I went on Hydroxycarbamide, with hindsight maybe I shouldn't have been prescribed it. However, I tolerated it well for five years until it stopped working and possibly caused another BCC on my face. I was then prescribed Peg Interferon, which I don't tolerate so well unfortunately, even after three and a half years. Don't rule it out though as we are all different and I'm sure it is much kinder to our skin.

EPguy profile image
EPguy in reply to Jazzyb50

Do you have access to Besremi? We're seeing some members do better on it vs PEG.

Jazzyb50 profile image
Jazzyb50 in reply to EPguy

I did ask my consultant about Besremi when I first heard about it but he said it was more or less the same as PEG

EPguy profile image
EPguy in reply to Jazzyb50

Based on some members' comments on the Voice, I'd vote for the "less" part of your Dr's advice for at least some. Understandably your Dr has no formal data to judge as there isn't any I know of. Our best feedback so far is informal and right here on the Voice. But if you didn't tolerate PEG, and HU is out, Bes is certainly worth a cautious look between you and your Dr.

There may be some truth to the mfg's claim:

<<Ropeginterferon alfa-2b, which is a novel, long-acting, mono-pegylated proline interferon with improved pharmacokinetic properties allowing once every two weeks administration offering improved tolerability and convenience>>

hq.pharmaessentia.com/en/rd...

Jazzyb50 profile image
Jazzyb50 in reply to EPguy

Thanks for your reply and information. I'm sure the cost of Besremi also has a lot to do with it.

Yakety_Yak profile image
Yakety_Yak in reply to Jazzyb50

Thank you for your reply. I'm sorry to hear about the many skin cancers you've had, it must've been difficult to deal with and then the MPN and then another skin cancer. You've been through a lot and I hope things get easier for you. I count myself lucky that mine was just a SSC in situ. Also sorry to hear you're not tolerating the Peg interferon. Hopefully some advice on here will help you to consider changing it or with time you tolerate it better. Best of luck.

Hopetohelp profile image
Hopetohelp

You could always try going on peg and if it doesn’t suit go back to hydroxy. For some of us we tolerate peg very well and I personally have hardly any side-effects at all. Don’t be frightened of the injections as they are easy once you know how. Drink lots of water. Very slight chance of going into remission on peg which is very hopeful. Good luck with your appointment and let us know how you get on

Yakety_Yak profile image
Yakety_Yak in reply to Hopetohelp

Thank you for your reply. Yes I did consider that (I can always switch things in the future) it's not a permanent life-long decision.

Yakety_Yak profile image
Yakety_Yak

Thank you so so much for all your replies. I am very grateful, I have been making notes and taking all advice on board and am close to making almost-final decision now and then the final one after hearing what the haematologist says tomorrow. I'll let you all know how it goes and what I decide and also reply to everyone I haven't had a chance to it was a hectic day and now it's late. I was very pleased and surprised at overwhelming support and number of responses you are all amazing best wishes x

Gaithersburg profile image
Gaithersburg

Hi , I was on Hydroxyurea for about 6 years and didn't have any trouble with it. I then had quite a time on aspirin only, as I was young and healthy and had children, and have now been on Anagrelide for over 12 years which has been good for me. Hope this helps and good luck with it all.

Yakety_Yak profile image
Yakety_Yak in reply to Gaithersburg

Thank you for your reply and advice, much appreciated😉

givingITMybest profile image
givingITMybest

Hello,it looks like you've received plenty of solid information to aid in your decisions. while we share a common goal in staying healthy while we deal with our MPN we are all individuals and I've found what works for one person might not for another. I can tell you that after 2 years on HU for E.T. Jak2 positive I bloomed in skin cancers. I'm 70 years old, but found the number of skin cancers, yes, Bowen's, to be a lot in a 6 month period. I had 4 excisions and now face a Moh's procedure on top of my head. This is the second one on top of my head. My MPN specialist removed me from HU because as well my fatique level had ramped up. I'm currently participating in a study medication called bomedemstat which has it's own set of side effects. With the rash of skin cancers I did schedule more frequent visits with my dermatologists to watch out for anything developing. I wish you good fortune.

Yakety_Yak profile image
Yakety_Yak in reply to givingITMybest

Thank you very much for your reply. I'm sorry to hear that you've had to go through all that that's awful. I hope you have better luck on the bomedemstat, I did see that one in my search and comparisons of medications. Good fortune to you too.

Yakety_Yak profile image
Yakety_Yak

Hi! I've made my final decision yesterday while talking to the haematologist. As you know I like to write short-story length messages 😉😆 so as soon as I have time today I'll write you the full update. The short version is I've decided to go back on hydroxy only time will tell if that was good🙈

Yakety_Yak profile image
Yakety_Yak in reply to Yakety_Yak

Hi! Thank you again everyone who replied to my question and gave good advice and opinions I appreciate it VERY much it gave me a lot of 'food for thought'. The biggest thing I've taken away from this after considering all is that even though we have something very big and relevant in common (MPN's) we are very individual and very different in a lot of aspects: our symptoms, the severity of our condition and symptoms, other existing/previous health issues and how they affect us and affect our MPN's, how we tolerate different things and medications; and also which risks and side effects we prefer to take and tolerate over others. It's all a big balancing act that we just try to do to the best of our ability with the help of doctors, family, friends, and most importantly this online community. The decisions that we have to make is to choose 'the best one for us as an individual' or 'the least-worse one for us'.

SO I made the final decision yesterday whilst talking to the haematologist. I told her about what decision I'm leaning towards and any concerns I still have regarding making that decision and we discussed shortly. Not being on any meds was quickly ruled out. Then, I’ve chosen beforehand to exclude a lot of the meds (including trial ones I could potentially try) due to potential side effects/risks in lieu of other previous or ongoing health issues. I was left with hydroxy and interferon as only options left I felt ok for me when we spoke. With interferon there were too many concerns still about some of the potential side effects…….this is the important part: The potential side effects and risks of interferon (taking in consideration MY previous or current health issues) was even more concerning and dangerous FOR ME than the increased risk of skin cancer on hydroxy. Trust me this was not an easy decision as I have small areas/patches especially on my face which the dermatologist said isn’t a concern and weren’t biopsied but I will probably ask the GP to refer me for again as I’m really not convinced. And I’ll insist on regular skin checks in future, and any little skin thing that concerns me I’ll be begging to get referred. The haematologist was very convincing (and I’ve read this before) that the increased risk of getting skin cancer on hydroxy happens after many years on it not in a short time (months) like I was. She felt (and I agree now) that the patch on my leg (the Bowen’s) that’s been there for years suddenly changing was very likely just coincidence and bad luck. To be fair it did over the years have small slow changes but nothing that made me think to get it checked I thought it’s just a sun patch. As for the ‘patches’ on my face (that also suddenly appeared at the time the leg patch started changing), I’d be a bit surprised if it isn’t skin cancer too. But because I have other health stuff going on apart from the MPN I wouldn’t rule out that it’s something harmless and completely unrelated to the MPN and the hydroxy. The fact the dermatologist didn’t have any answer to me (even when I suggested few things off the top of my head such as hormones) to what it might be or is causing it didn’t exactly help instil confidence that it’s nothing. Anyway, as usual I’m ‘off-loading’ too much here and going off topic sorry. Back to the meds – we (haematologist and I) have agreed that for now (in light of current circumstances) it’s best to go back on hydroxy and if anything happens regarding my skin in the future we’ll switch to Interferon. Or if some health issues get better or resolve sometime soon (making the risks to switch lower) I’ll definitely consider changing to Interferon (if I can as I get the feeling that it’s more offered to ‘younger’ patients in UK). I am as happy as I can be with my decision to go back on hydroxy. Firstly ‘better the devil you know than the devil you don’t’ (sorry, bad joke). Secondly, I know that in regards to much relief from symptoms and tolerating it fairly well I’ve been lucky and happy on it. There’s not much else I can do but trust in the decision knowing if it proves bad I can change it hopefully before too much damage done. Only time will tell. BEST WISHES and best of luck to all of you.

hunter5582 profile image
hunter5582 in reply to Yakety_Yak

I am glad you were able to make a decision for yourself based on your own analysis of what you would prefer. It is clear you went through the entire process and made the decision that you feel is best for you, based on your individual profile. Informed decisions are the best decisions. It sounds like you have a good care plan going forward and will monitor what needs to be monitored.

All the best to you going forward and do let us know how you get on.

Yakety_Yak profile image
Yakety_Yak in reply to hunter5582

Thank you again for your advice on this. And your advice and info on this site in general I think you help a lot of people.....you're very knowledgeable.

EPguy profile image
EPguy in reply to Yakety_Yak

Good quality rational thinking. Thanks for the details.

At some point in the future you might check how well Besremi INF is showing. As more data on its adverse effects accumulates (including the valuable stories we read here) it's possible that it could prove mild enough vs PEG to consider. But for now, no way to know that with confidence.

Yakety_Yak profile image
Yakety_Yak in reply to EPguy

Thank you very much for advice and positivity. How was your blood results? Did you post an update after these messages. Hope you're doing ok.

Hopetohelp profile image
Hopetohelp

That’s why this site is so good. Loads of people to help with their experiences to help you make a decision for yourself. Good luck

Yakety_Yak profile image
Yakety_Yak in reply to Hopetohelp

Exactly yes. It's really a great place to get advice and support I'm very glad I asked.

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