Actinic Keratosis

[mbr8076]

Good morning from the US of A,

Yesterday I received notification from a scalp biopsy I had done last week that the sore on the top of my head is Actinic Keratosis. In researching it I found it is due to ultra violet ray exposure and it is pre cancerous. I mentioned to the Dermatologist that I have been on Hydroxyurea for 6 years for treatment of ET and now wants me to follow up with a complete review of my skin in 2 months. But, first I am to treat this sore with a medication for 3 weeks that is also a chemo drug:/ 😩 Needless, to say I am shopping for a variety of hats

I am wondering if i should contact my MPN specialist or wait until May for my appointment. Also, wondering if this will be reason to change treatment plan.

Thank you all for listening,

[hunter5582]

Sorry to hear about the actinic keratosis. I recently had a seborrheic keratosis removed from my cheek. Too much sun exposure is certainly not a good thing.

Doing routine skin checks at least annually is a very good idea. Our risks for secondary cancers are higher due to the MPN and some of the medications we take. You are correct to think that there is a risk of skin cancers specific to HU. This would be an issue to discuss with your MPn care team. There may not be a black-and-white answer to whether you should continue on HU or try a different medication that does not carry the same risk of skin cancers. This may be more of a matter of lining your choice of medication up with your treatment goals and risk tolerance.

Happy hat hunting. I own lots of them.

[Tipsy2023]

Hi I am also on Hydroxyurea and have Actinic Keratosis was seen by Dermatologist who is treating it with fluorouracil cream . She is aware of my diagnosis . ET Jak2 positive .So far after several weeks treatment the areas are very red which is expected .The thought then being that all will settle leaving new skin . I am led to believe it may come back at some time . I also believe that I have had the condition for some time .The treatment has been around for a long time and the skin response can be quite alarming I am at that stage so hoping it will now settle as advised by dermatologist .L

[mbr8076 in reply to Tipsy2023]

Hi Tipsy2023,

Thank you for sharing. The letter from the dermatologist mentioned the adverse effects from the cream and also that I may need to take OTC pain meds or Benadryl to sleep:/ Needless to say I am not looking forward to starting. The pharmacy had to order the medication so I have not picked it up yet.

[Hombre in reply to mbr8076]

Hello mbr8076, another treatment for actinic keratosis is cryotherapy, which means a quick spray of liquid nitrogen. This only feels like a pin prick and is much more effective than creams.

[mbr8076 in reply to Hombre]

Hi Hombre,

Thank you for your reply. The dermatologist stated that when I follow up in 2 months if he is not satisfied with the results after the cream he would do cryosurgery. From what I am hearing it seems crusurgery should be the first option and be done with it:/

[Hombre in reply to mbr8076]

Yes I agree, and it's so quick. It's not 100% guaranteed, but not are the creams. By the way, I had actinic keratosis years before starting HU.

[mbr8076 in reply to Hombre]

So, it may not be from the hydroxyurea but the years as a lifeguard in the 70’s:/

[quanglewangle]

This is a common known side effect of Hydroxycarbamide. I have experienced it for some years and particularly annoying small patches are treated with Efudix (nose and ear tips); other small dry areas/spots come and go with no further action. I wear a hat at all times outside and to be honest it seems to make no difference but costs nothing (affected spots have seen no sunlight / UV in ten years but develop anyway). Interestingly no spots anywhere else other than on my head - maybe too much brain activity!!😵‍💫🤭

[mbr8076 in reply to quanglewangle]

Hi quaglewrangle,

Thank you your reply? How many years are you on Hydroxyurea and are you still on it after all these diagnoses of keratosis?

[quanglewangle in reply to mbr8076]

I have been on Hydroxycarbamide since 2010. I have numerous of the listed side effects at times (pruritis, actinic keratosis, peripheral neuropathy, erythromalalgia, nail cracking and splitting, tiredness, anaemia, nosebleed, mouth ulcers) - but most are very minor and none are life-inhibiting and are mostly ignored. There are other possible side effects but not everyone will get them and you may not get any more.

For what its worth I say "don't worry - it could be worse!"

[Mazcd Partner MPNVoice]

hello mbr8076, so sorry to hear about the actinic keratosis. I think you let your haematologist know about this before your next appointment in May. I hope that the treatment goes well. Kind regards, Maz

[mbr8076]

Thank you, Maz,

I will contact her via email today.

[Scottishterrier]

Hi I have been on Hu for many years and never have had any problems with it at times itchy skin but the first time I went out in the sun my arms swelled up but I didn't know that it made me photosensitive so now I use factor 50 and wear black t shirts or light cotton shirt and also baseball cap and sunglasses I have never been bothered with moles but would not ever like to change from Hu as never had a problem with it was put on it due to 3 hepatic infarctions i have et Jak 2 positiveStay safe

Scottish terrier