Skin and Hydroxycarbamide

[Bobthecob]

Good morning everyone, I have Et jak 2 diagnosed in 2000 and take Hydroxycarbamide since diagnosis. I have had skin cancer removed from my nose and have really dry patches and other sun blemishes on my face. Despite never being a sun worshipper and wearing a high factor sun scream and hat. At my latest haematology appointment I mentioned the concern over my skin, the reply was the danger of a bleed outweighed the skin issues. I would be interested to hear from other people who have the same issues or any advice. Thank you for reading .

[Inca]

Yes me.I have P V 11 yrs now,Now on Jakafi as progressing to MF.....

Carcinoma ,face,two on chest,one on leg,all removed but my skin once really good,is always flaring up with something or other.Not a sun worshipper,tho

live SW France,have a good dermatologist,surgeon and team of excellent consultant and Drs......they all know the Chemo Meds cause our problems

so are aware .Its not just sun ,but being out doors in all elements,I wear huge sun glasses,cover everything possible,it is extremely distressing,I wish you the very best with this awful problem we have.

[Bobthecob in reply to Inca]

Thank you for your understanding reply. When you say dermatologists that treat you know your problems with chemo Meds, is this something you made them aware of? I am unsure if the GP, dermatologist or surgeon I saw was aware of the significance.

[Inca in reply to Bobthecob]

I live and so treated in France.There ,they are much more aware of the fact that being out doors can cause skin cancers and that MPN patients are more at risk due to our Meds.In U K we bred horses and I was outside in all weathers.....my skin troubles started soon after diagnosis(inFr)and starting Hydrea.System here is very different to U K ,any thing the G P is not sure of ,you are straight to a specialist,all is much speedier and there is no waiting around,so G P informs which ever type of specialist care needed a all on the Fr.Health system .So many of us on this site have skin probs,it goes with the disease I guess.Good Luck tomorrow.

[Mwalimu]

I guess they are right …… I wear a SPF cream all the time despite not sitting in the sun, and avoid direct sunshine but use an umbrella ( special one with protective lining bought on the internet). I always travel to hot climes for a holiday and use it scrupulously. Sallie

[h2ogal]

ET, Jax2+, 1 year hydroxy. I cannot tolerate the sun at all since starting the hydroxy even with highest SPF, long sleeves, hat, & not being in direct sun. I try to be outside only in very early sun right after it rises. 24 hours after my first dose of hydroxy I had bad pain in all the spots where skin cancers had been taken out and new pre-cancerous spots everywhere. Even staying out of the sun I was still burning. Had sunblock film installed in my truck & living room windows which helped. The best tool I have now is a UVA-UVB light meter which measures the harmful rays. Also use it to check my clothes to see if they really are blocking the sun.

Hope this helps you a little.

[Bobthecob]

Thank you so much for your reply and advice.

[Jazzyb50]

Yes me too. PV diagnosed 2007. On Hydroxycarbamide for 5 years from 2013 to 2018. It stopped working and caused a skin cancer (Basal Cell Carcinoma) on my face. I avoid the sun, keep covered up and use a high SPF factor on my face due to a previous history of Malignant Melanoma 2009 and BCC 2013. With hindsight I don't think I should have been given Hydroxycarbamide and I'm currently waiting to have something removed from up my nose. I am now on Peg Interferon but don't tolerate it well.

[catkinspolymer]

hi Bob ,

I have had Et for 30, years take Hydroxy carbamide and I have had r lots of basal cell carcinoma removed from my ears and face, Never sun bathe but do work outside a lot.

all the best

Town Cryer.

[Bobthecob in reply to catkinspolymer]

Hello, thank you for your reply. Do you visit a dermatologist or are you left to find sun damage/Hydroxycarbamide damage and then get it investigated? I would find it helpful to have access to expert knowledge.

[catkinspolymer in reply to Bobthecob]

hi tends to be the later , but I am now seeing a dermatologist about every 6 months who is carrying out a watching brief.

[Cyclemore]

Hi. I was diagnosed in 2017 with ET & PV so am on 1g Hyrdoxy / day.

I have had a fair amount of sun exposure in my life and have noticed an increase in solar keratosis, (dry crusty bits) and also seem to get more wart-like lesions both of which I freeze off if appropriate or use a cream, (5-fluorouracil). I have had two BCC removed at the GP practice. My skin is dryer, particularly on my legs and I bruise more easily. I am much less tolerant to sun however I lead an active outdoor life and none of these issues affect me adversely. The only other thing is facial redness, which could be rosacea not necessarily linked to the treatment though it is listed as a side effect.

[Bobthecob in reply to Cyclemore]

Hello thank you for your reply, I too have so many wart like lesions, can I ask do you monitor them yourself or have access to expert advice?

[Cyclemore in reply to Bobthecob]

I tend to monitor them myself and they seem to come and go with or without freezing and particularly on my forearms for whatever reason; at the moment I seem to be pretty clear. The freezer I use was previously available over the counter though I get it online ebay.co.uk/sch/i.html?_nkw=...

I have found it the most effective to use and much better than those with sponge applicators.

I have what I think may be another BCC on my shoulder, which I have freeze treated but seems to be coming back. If that persists I will go to the GP, this is softer and more pink than the warts; the two previous removals were on my chest. I saw a dermatologist about 15 or so years ago when I had a solar keratosis removed from my nose though this predates my diagnosis and treatment by a long way and certainly due to sun exposure over many years. At this time I had PHI and seeing another dermatologist subsequently he recommended the cream I mentioned, also called Effudix. If you read the notes on the cream it can be used for the treatment of BCC too. It tends to inflame the skin a bit at first but eventually the keratosis comes off.

[Bobthecob in reply to Cyclemore]

Thank you so much for the advice and recommendations, will give it a go.

[Heather270240]

Hi Bobthecob. I have ET JAK2 and been on Hydroxycarbamide since 2016. During that time I have had 4 BCCs removed leg arm and face and due to go in tomorrow to have a second one removed from my nose which is a very painful process. Despite dermatologist stating it was probably caused by HU haematologist disagrees and said she had never heard of it before. I have always worn a suncream on my face winter and summer and it's only since starting HU that I have had the problem.

.

[Bobthecob in reply to Heather270240]

Hope having yourBCCs removed goes well for you. Over the years I have been told so often by haematologist that various concerns are not down to Hydroxycarbamide, it is very frustrating. Thank you for replying

[Inca]

How on earth can a Heamatologist never have heard of any Meds for M P Ns.

Bizarre....and worrying,hope you found a better one Heather.

[Peter18]

I was diagnosed with PV in February 2018 and have been on daily hydroxy since. Apart from a noticeable drying of skin, particularly on the face, I have a sort of lesion on the bridge of my nose. My GP raised the possibility of solar damage but referred me to a skin specialist whom I see early next month. I'll raise this thread in my consultation.

Many thanks and best wishes.

[Bobthecob in reply to Peter18]

Thank you I appreciate your response

[hunter5582]

I think it is debatable whether skin cancer is "better" than risking a bleed. HU is a known carcinogen, particulalry causing skin and oral carcinomas. It also causes mucositis, which is perhaps some of what you are describing.

What actual symtoms have you experienced due to the thrombocytosis? Do you have Acquired von Willebrand Disease? Do you have a history of either hemorrhage or thrombosis? DVTs, TIAs etc? Risk is a relative term. Which risk is worse the certainty of continued skin disorders/cancers or the risk of a bleed?

Have you been offered any other options? There are other meds for ET that you may tolerate better. Have you discussed the option of no cytoreduction? Some docs do not use chemo for levels under 1 million. (Based on uour individual risk profile).

I would suggest getting a second opinion from a true MPN specialist. Many hematologists so rarely deal with MPNs that they are not able to offer optimal treatment.

I have found that assertive patients receive higher quality care. Passive patients do not. It is your body and your right to determine what risks are acceptable and what is in your own best interests.

Hope you get it all sorted out ASAP.

[Bobthecob in reply to hunter5582]

Hello hunter thank you for your response, I have had episodes of losing my vision, stomach problems leading to dehydration and hospital admittance. Have been prescribed Anegralide and interferon in the past which I have not tolerated that well. I agree that a consultation with an MPN specialist will be beneficial. Thank you for your response.

[hunter5582 in reply to Bobthecob]

Here is a list of patient-recommended MPN expert docs mpnforum.com/list-hem./ . I found an excellent specialist from this list.

In addition to the different forms of interferon available now (some easier to tolerate) there is also Jakavi (ruxolitininb). Perhaps the MPN Specialist could more fully explore options for you.

It is hard to say whether the vision loss is related to the ET - I believe it is possible. the stomach issues could be related to the JAK2 mutation. The JAK2 mutation drives the overproduction of inflammatory cytokines that are thought o cause many of the secondary symptoms we experience. I am also JAK2+ (PV) and experience various inflammation related issues: GERD, eczema, insomnia, osteoarthritis. It is hard to tell sometimes what is related and what is not.

Hopefully you can find a MPN specialist to help you sort it all out.

[Bobthecob in reply to hunter5582]

Thank you I appreciate it

[conno61]

The meds for mpn's are a postcode lottery in the UK. In my area (Merseyside) we cannot get peg interferon and are all put on HU. I've told my haemo that I'm not going on HU as I've already had a melanoma and am at a higher risk of developing another. I don't therefore think that they should be prescribing me a drug that will give me another, seems totally counter productive.

[Hopetohelp in reply to conno61]

That is so unfair. All patients should have the right to treatment wherever you live

[Bobthecob]

I live on the Wirral, and attend Arrowe Park hospital, interested in your response .

[conno61 in reply to Bobthecob]

You can probably access peg interferon then bob, Cheshire can get it. That's how insane it is.

[Stay05]

I was advised about this i.e. to expect possible skin conditions, cancers to pop up. The only advice I was received was to be vigilant and have every thing checked.

[Lemonverbena]

hi bob, i am pv/ jak2 ( was once et) and taking hu for years. recently had a melonoma ( stage 1) removed from leg which has meant have looked in to it. this is my take so far.

i do have fair skin/ history working outside/ burnt as child snd adult.

my haematologist insisted no risk mm hu, only for bcc's, but lowered dose anyway.(?) that not gone so well so back on 1500 mg. meanwhile my dermatology think any immune suppression does up the risk.

looked at the alternatives with haemt and they all seemed worse re skin ca and other side effects so am on watch and wait. no new ones so far (14 months on but i have many moles....).

this did all freak me out at first - i guess now am in ' the new normal'.

[Bobthecob]

Thank you, it freaks me out as well 😳

[GardenGal3]

I have ALWAYS been active outdoors gardening or playing "real football"/soccer. ET diagnosed in 2012, baby aspirin kicked up my ulcerative colitis, so put on HU. Just found out about CALR mutation. Last year I had two BCC's removed (upper right lip and on back of my neck). I had NOT been using sunscreen, so now I cover up and lather stuff especially on my face. I'll be seeing the dermatologist later this week for a yearly check. I'll let you know how it goes.

[Bobthecob in reply to GardenGal3]

Thank you for replying, it is good to hear of others in the same boat. Good luck at your dermatology appointment.

[Hidden]

Hi l also have skin issues,malasma dark patches on my cheeks that seem to have gotten worse.l believe it is linked with ET and jak2, and hydroxy, your post has encouraged me to speak with my hematologist about it maybe something can be done about it. I hope things have improved for you...

[Bobthecob in reply to Hidden]

Hello there, sorry to read you are having skin issues and I hope you manage to get some advice from your haematologist. I am constantly monitoring my skin, and use factor 50 sun protection. I have brought up my skin issues with my haematologist and each time I have been told to visit my GP, my GP photographs my skin issues and measures their growth. Unfortunately I have found it very hard to have a face to face appointment with a medical person due to the pandemic of have not had the same opportunity.I would be very interested to hear how you get on concerning your skin issues after speaking with you haematologist. Please keep me updated, best of luck to you.

[Hidden in reply to Bobthecob]

Thanks Bob l will indeed keep you posted as you know its hard for us to get the face time we need right now and lots of health issues have had to be put on the back burner lets pray this changes for the better as the country gets better at managing this health crisis for all of us.