Hydrea

[Chel1]

Am on HU and had a small lump come up on my face had it removed and just had letter from dermatologist to confirm it was basil cell carcinoma I now have to wait till end of April to speak to my hemotologist has anyone e else had this and did you have to change meds thankyou

[hunter5582]

Sorry to hear about the basal cell carcinoma. Unfortunately, skin cancers are an intrinsic risk associated with HU. You will hear from others who have experienced this adverse effect. sometimes more than once.

You will need to decide for yourself whether you should change to another cytoreductive medication. Pegasys is recognized as another first-line treatment option for ET. Anagrelide is also a second-line treatment option. You would also have the option to continue the HU with enhanced skin protection. You can discuss all of your treatment options with your MPN care team and make an informed decision about what is in your best interests.

Wishing you all the best.

[Chel1 in reply to hunter5582]

Thank you for that consultant did say the meds we need all have different side effects so will wait and have chat

[Cja1956]

I was taking HU since 2019. About a year and a half ago, my eye started bothering me. I went to my ophthalmologist and he said I had dry eye. I tried eye drops but the problem continued. Last summer my gp noticed my eye was irritated and prescribed antibiotics which didn’t help. I finally went to a different ophthalmologist in December and he diagnosed basal cell carcinoma of the inner eyelid. I’ve already had 2 surgeries and I’m having the final one on April 8th.

I live in Florida and skin cancer is very common here so I don’t know if the hu caused it or not. I am off that drug now anyway because last summer I was pre-transplant and they put me on Jakafi.

Wishing you all the best.

[Chel1 in reply to Cja1956]

Thank you for that hope all is ok with you

[ELG24]

Yes, I had same. Still on hydrea

[Chel1 in reply to ELG24]

Thanks for that

[mbr8076]

I am curious, how long have you been on Hydroxyurea? I am seeing the dermatologist for the first time next week. I have had sores on my scalp for almost a year. I was referred last May but could not get an appointment until now:/ I have been on Hydroxyurea since March 2018.

Wishing you better days,

[Chel1 in reply to mbr8076]

I've been on it for 3 years hope all goes well

[rustler35]

I have been on HU for 6 years and this is one of the side effects of the medication; increased sensitivity to sunlight. In my case (69 yrs. old) it also could be a result of youthful exposure to sunlight (sunburn after sunburn). My dermatologist has put me on Fluorouracil which is a cream applied topically and helps remove problem skin cancer cells. I am hoping this treatment works. At some appointments I have had over 30 spots removed by freezing and about a dozen Moh's surgeries which is scalpel removal of skin lesions.

Wishing you the best as well.

[Chel1 in reply to rustler35]

gosh that's so many hope that cream helps you and yes think mine goes back a lot of sunbathing in younger days (73yrs) and being fair skin and red hair !!

[givingITMybest]

I was on Hu for ET for about 2 years. I bloomed with skin cancers. It is slowing down now.

[Chel1 in reply to givingITMybest]

Oh dear will have to start wearing hats and slapping 50+ cream

[mpnunlocked]

I am 75 years old, have ET with a CALR 2 mutation, and was on Hydrea aka HU aka Hydroxyurea for almost 2 years. It worked well at reducing my platelets and I had no side effects for about 1 & 1/2 years. Then all of a sudden I developed severe dry eye - making my eyes bloodshot as well as uncomfortable. In addition, I developed a horrible skin rash on my face which was diagnosed as rosacia with acne. I never had this in the past. I also had "banding' in my fingernails. All of these conditions went away when I stopped Hydrea.

Before starting Hydrea, I felt fine and never experienced any symptoms from ET. The drug was much worse than the cure.

I now take Anagrelide aka Agrilyn and have not experienced any side effects (yet) other than some indigestion. I have been taking it for about seven months.

Hydrea is the first line drug for ET, but I do not understand why. I think it is very toxic. Doctors see the platelets come down and think that their job is done. Not so. The fact that this disease/cancer is so rare makes it more difficult to to determine the best form of treatment. True, everyone is different, but before taking Hydrea I would try all other alternatives.

[Murdoch01]

Yes I have it on my nose, going in on Thursday to have it removed

[Chel1 in reply to Murdoch01]

Hope it goes ok mine was on side of nose

[Mazcd Partner MPNVoice]

hi Chel1, I am so sorry to hear this. It might help you to view the vlogcast with Dr Nauman Butt who talks about side effects of MPNs and medications, particularly skin complications of itch (pruritus) and skin cancers. Dr Butt talks about the increased risk factors for skin cancers (non-melanomas) for MPN patients from sun exposure and some treatments, mainly Hydroxycarbamide and Ruxolitinib (dependent on dose and length of treatment.

healthunlocked.com/mpnvoice...

Best wishes, Maz

[Chel1 in reply to Mazcd]

thank you so much will look at this x

[PVPVPV]

I've been on Hydroxy for ten years. I had a squamous cell carcinoma removed 2022. My dermatologist has twice prescribed Efudix (fluorouacil is active ingredient) to remove pre-cancerous cells across my forehead. This was very effective. I decided to stay on hydroxy rather than change to interferon because "better the devil I know". I did not like the look of interferon side effects and did not fancy having to inject myself, even though I accept that it is an acceptable alternative. My skin is best it's been for about six years. I'm monitoring the situation. My dermatologist also said that these skin problems not necessarily caused by hydroxy but rather by exposure to sun as a child. We used to be out in the sun at any opportunity in those days before computers. I also lived in a tropical country for a few years. I was advised to take extra care with exposure to sun.

[Shadowperson]

I've been on Hydroxy Urea for several years. About a month ago I had a swollen lymph node in my neck biopsied. It "tested positive for malignant cells." The diagnosis was "metastatic squamous cell carcinoma." I am currently working with my dermatologist and my oncologist/hematologist to work out a plan. I understand they can treat this with radiation, meds, or surgery. Don't know if it has spread anywhere else and understand they can do a full body scan to figure that out. My vision has gotten blurry in the past ffew months to the point where it is difficult to read the label on my prescription medical bottles.

[PhysAssist]

Hi Chel1,

I was diagnosed with a BCC on the side of the bridge of my nose [almost into my eye] about a year after I stopped HU, and underwent a Mohs surgery procedure to have it removed under local anesthesia.

It was slightly unnerving and mildly uncomfortable having that done right next to my eye, but it was great to know that they got all of it without taking anything they didn't need to.

There was some discussion about whether the HU had contributed because I was only on it for 6-9 months, but in the end the docs agreed that it was certainly possible it enhanced the risk- especially since it was in a relatively well-protected area of my face [Since my 20's I have always worn hats and sunglasses outside during the day, as well as sunscreen].

Best of everything, and I hope everything goes as well for you.

PA

[Chel1]

thank you for that did you stop on hu or did they change you