Switching from HU To Pegasys: Skin Cancer Risk - MPN Voice

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Switching from HU To Pegasys: Skin Cancer Risk

Minify profile image
19 Replies

Six months ago I was diagnosed with ET Jak2.  I’m high risk (age, prior stroke) and I started Hydroxyurea 500mg/day.  All my counts came down nicely and my main symptom (brain fog) resolved. I had minimal HU side effects (a bit of initial hair thinning. dry skin/hair, a few mouth ulcers easily managed with Lysine).

So.., I’m a perfect HU success story, right? My counts are perfect, minimal side effects, and I feel great! BUT.. I have history of basal cell cancer x3, the most recent a month ago and represented by a 2.5” facial scar. In the past two weeks I’ve met with the dermatologist, the Moh’s surgeon, and the plastic surgeon and sought their recommendation on whether HU was accelerating my already high risk for BCC (blond, blue-eyed, excessive sunburns as kid, family history). The Moh’s surgeon was the most ardent, saying if I stayed on HU I should get “skin checks every 6 months, so they don’t grow so big so fast”. My most recent lesion grew from a pinpoint on biopsy to a 1.2 x1.2 cm lesion in 4 months on HU.

Today I met with my hematologist , to discuss HU vs Pegasys in relation to my skin cancer risk.  She agreed that switching to Pegasys was “a very good choice” for me. So next week I’ll start the switch with a start dose of 45 mcg every other week. We’ll monitor bloods every 2 weeks and adjust dose as needed. Since I’m starting from a baseline of completely normal blood counts (thanks to the HU), I hope I can stabilize on a low dose of Pegasys. If I can’t tolerate the Pegasys, I’ll gladly go back to HU, as I know it worked well for me once; and I’ll  just be super vigilant about the skin checks. 

Thanks to members of this group, who gave me the information and resolve to be an advocate for myself. I realized that, for me, the risk of further facial disfigurement from skin cancer was a quality of life issue.  I needed my care team to factor that into the medication choice. You guys made a difference !  Thank you! 

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Minify
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19 Replies
George1976 profile image
George1976

Skin cancer on peg will be risky too. How much more or less than HU I don’t know. I developed two squamous cell lesions after 4 years on 45 mcg of peg weekly. 2 more since switching from peg to 500/1000 alternating HU two years ago. But Ive been on BP meds during this time too. I’ve got my dermatologist and MOHS surgeon on speed dial. If you are going with 45mcg every other week then that should reduce the risk a bit IMO. Generally speaking meds make you more vulnerable to the sun.

PhysAssist profile image
PhysAssist in reply toGeorge1976

Hi George,

I know this response is a little delayed, but if you would be so kind as to post any references you have for your comments about INF[s] promoting the development of skin cancer, I would be extremely grateful.

My research to date has only shown the opposite- which is to say that they [INF] are being used to treat skin cancers [especially those that are resistant to usual therapy- including chemo- and radio-therapy, and surgery]. The references included reports of beneficial effects in invasive and metastatic melanoma, basal cell and squamous lesions, [even in "deeply infiltrating, recurrent, and morphea-form lesions"],.

This topic is very near and dear to my heart because my mother had had 2 BCC's and died of metastatic melanoma, and i am currently awaiting Mohs surgery on my nasal bridge BCC.

Best regards,

PA

George1976 profile image
George1976 in reply toPhysAssist

Hi PA. I picked up two scc’s while on peg. And 2 more after stopping peg and switching to HU. I was suspecting peg enables skin cancer by lowering white cells. Mine were below normal for about a year before they developed. Just my experience. But I also got much more sun in my life than I should have. Had never heard peg is a skin cancer treatment. IMO the biggest risk for skin cancer is the sun. And many meds make people more sensitive to sun. So use a lot of sunscreen and cover up your skin and don’t go outside during peak UV if you can help it.

I also thought BCC was less risky than SCC. I‘ve not done a lot of research on skin cancer, just what I’ve picked up from dermatologist and MOHS surgeon.

I’ve been told to take niacinamide 500mg x2 daily. Some studies show it prevents precancerous lesions and skin cancer itself. I’ve tried it and believe my ski looks better.

Also will want to schedule appoints monthly or every other month with your dermatologist. Then you can get any suspicious spot frozen off before it can become cancerous. If you have nothing of concern then cancel that month.

Very sorry to hear about your mother.

Best of luck to you.

hunter5582 profile image
hunter5582

That sounds like a very good plan. Given your history with skin cancer, Pegasys is likely a safer choice. We are all different in how we respond to these meds. I responded much better to PEG than HU. PEG was more effective and much easier to tolerate for me. Wishing you the same success,

KLCTJC profile image
KLCTJC

There are sometimes medication you can take if you are getting a bunch of these. I will prescribe it when patients have multiple skin cancers but usually for SCCs. The other thing you can talk to your doctor about nicotinamide. It is a vitamin that can help. Usually more with AKs and SCCs, but we recommend it all the time. You need to consult your doctor with these questions but I hope this helps. There are SOO many drugs that increase your risk for skin cancer. I have so many transplant patients, patients on autoimmune drugs and I prescribe a fare share of them myself for all kinds of dermatology issues! I hope this helps

Minify profile image
Minify in reply toKLCTJC

HI KLCTJC, Thank you for the information about Nicotinamide. I’ll research and discuss with my care team. Sounds promising.

PhysAssist profile image
PhysAssist in reply toMinify

Hi Minify,

Thanks for your most recent post- I will keep you apprised.

As regards nicotinamide for prevention of skin cancers, I did a very quick look and found these articles:

This one was from 2015:

Oral Nicotinamide Prevents Common Skin Cancers in High-Risk Patients, Reduces Costs

It not only supports a beneficial effect on reducing skin cancers, it also supports the intervention as a cost-effective measure,

Source: ncbi.nlm.nih.gov/pmc/articl...

This was very recent- circa 2/22:

Effect of Nicotinamide in Skin Cancer and Actinic Keratoses Chemoprophylaxis, and Adverse Effects Related to Nicotinamide: A Systematic Review and Meta-Analysis

Source: ncbi.nlm.nih.gov/pmc/articl...

This was even more recent- 3/23. but while it acknowledges the efficacy of nicotinamide otherwise, it did find any benefit post-transplant. However, it may have been too short of a study duration to elicit any benefit.

Nicotinamide for Skin-Cancer Chemoprevention in Transplant Recipients

Abstract

BACKGROUND

Immunosuppressed organ-transplant recipients have an increased incidence of, and mortality from, skin cancer. Nicotinamide (vitamin B3) enhances the repair of ultraviolet (UV) radiation–induced DNA damage, reduces the cutaneous immunosuppressive effects of UV radiation, and reduces the incidence of keratinocyte cancers (including squamous-cell and basal-cell carcinomas) and actinic keratoses among high-risk immunocompetent patients. Whether oral nicotinamide is useful for skin-cancer chemoprevention in organ-transplant recipients is unclear.

Method

In this phase 3 trial, we randomly assigned, in a 1:1 ratio, organ-transplant recipients who had had at least two keratinocyte cancers in the past 5 years to receive 500 mg of nicotinamide or placebo twice daily for 12 months. Participants were examined for skin lesions by dermatologists at 3-month intervals for 12 months. The primary end point was the number of new keratinocyte cancers during the 12-month intervention period. Secondary end points included the numbers of squamous-cell and basal-cell carcinomas during the 12-month intervention period, the number of actinic keratoses until 6 months after randomization, safety, and quality of life.

RESULTS

A total of 158 participants were enrolled, with 79 assigned to the nicotinamide group and 79 to the placebo group. The trial was stopped early owing to poor recruitment. At 12 months, there were 207 new keratinocyte cancers in the nicotinamide group and 210 in the placebo group (rate ratio, 1.0; 95% confidence interval, 0.8 to 1.3; P=0.96). No significant between-group differences in squamous-cell and basal-cell carcinoma counts, actinic keratosis counts, or quality-of-life scores were observed. Adverse events and changes in blood or urine laboratory variables were similar in the two groups.

CONCLUSIONS

In this 12-month, placebo-controlled trial, oral nicotinamide therapy did not lead to lower numbers of keratinocyte cancers or actinic keratoses in immunosuppressed solid-organ transplant recipients. (Funded by the National Health and Medical Research Council; ONTRANS Australian New Zealand Clinical Trials Registry number, ACTRN12617000599370. opens in new tab.)

saltmarsh profile image
saltmarsh

First, let me say thanks to you for this post. I've been on hydroxy for over a year and am aware of the skin cancer issues. I've lived my life on the water with all the related skin damage and still spend a fair amount of time out there. The skin cancer issue has been in the back of my mind but your post convinced me to see a dermatologist sooner than later. Thanks and good luck

gvibes profile image
gvibes

I've been on pegasys for about 2 years. About a year and half ago while I was on pegasys, I was diagnosed with a melanoma on my calf. Had surgery and some delayed healing of the incision - eventually with back and forth with the surgeon and my oncologist, I agreed to stop pegasys for 3 weeks. My MPN doc maintained that pegasys had nothing to do with my healing. Eventually I got better.

I suspect that the melanoma was there before I started pegasys. My gut says it had nothing to do with the healing but.. Ironically during this, I learned that interferon had been used in the past for treatment on melanoma based cancer. So, at least for me, it may not be too bad to have some interferon in my body.

Treatment of PV with pegasys has worked very well for me. All my blood levels are in range, had my last phlebotomy over a year ago and I am at a maintenance dose. Side effects seem to lessen with time and clearly are dose dependent. Alot of us have to be patient with the time pegasys takes to get going. It took about a year for me. It seemed like a higher dose got it going and then you could reduce the dose.

Good luck

Bluetop profile image
Bluetop

Sounds like a good plan. Good luck with it.

Mirror368 profile image
Mirror368

I have the same problem. I am 78, have ET JAK2, have had two Mohs on my nose, and squamous removed from back and arm. I normally see nurse practitioner twice a year but she left the practice. When I finally see new NP in May I will discuss Hydroxyurea and skin cancer.

Eileen

Minify profile image
Minify in reply toMirror368

For me, it was about quality of life. This big facial scar has really distressed me, and I needed to know I was doing everything possible to reduce risk of future skin cancer. I really believe the HU accelerated the growth of the last skin cancer as BCC is normally slow-growing. . I suspect I have other “baby” skin cancers that aren’t big enough to be detected. I haven’t seen anything in the literature linking Pegasys to skin cancer, but there is a lot of evidence of the increased incidence of skin cancers with HU (esp squamous and BCC). At least now I can rest easy knowing I am doing everything in my power to reduce risk.

Good luck with your conversation with your NP.

Mirror368 profile image
Mirror368 in reply toMinify

I agree about HU and skin cancer. My husband has had several MOHS on his face from years of sun exposure. The scars eventually faded into the lines of his face. Maybe yours will be the same,

I am going to ask my hematologist about Pegasys because of headaches and skin cancer issues from HU.

Eileen

PhysAssist profile image
PhysAssist in reply toMirror368

Hi Mirror368,

I also had headaches from Hu- they were daily starting almost immediately after beginning treatment, and then after a few months, I had a couple of really weird migraine-like episodes of visual distortion, which led to an MRI of my brain.

That fortunately showed that my head was [as suspected] empty [of abnormal findings- e.g., thrombus, tumor, etc.]😇

I don't think I have had more than 1 or 2 headaches in total since I stopped HU and started Besremi.

Best,

Thomas

Mirror368 profile image
Mirror368 in reply toPhysAssist

Thomas,

I did not have visual migraines just headaches and a vertigo attack. I did have an MRI which was normal. I also had a two hour test for balance/vertigo/dizziness…also normal.

I just saw my hematologist and she was totally against Pegasys for me. She would like me to try Anagrelide but I am hesitant because I have AFib and heart palpitations seem to be an issue of many. So right now I had a short break from HU but back on it again, only 500 mg three days a week with labs in a month.

Eileen

PhysAssist profile image
PhysAssist in reply toMinify

Hi Minify,

Ironically, my mother's actual birth name was Minnie, but I digress.

Please see my post above in response to George1976's- who I suspect developed his cancers because of HU, and in spite of Peg- and ironically might have had less risk if his Peg dose had been higher, since all my research has ever shown re: INF and skin cancers is its use in treating them.

Thanks for sharing your experience- I'm very concerned about my BCC and upcoming Mohs procedure- not as much regarding the disfigurement angle, since my mug is hardly photogenic anyway, but more because of its proximity to my eye. It's literally less than a CM from my eye's inner canthus [where the lids meet in the corner], and if they have to extend the excision that way, my eye [sight] could be permanently compromised.

Best,

PA

Minify profile image
Minify in reply toPhysAssist

Hi Phys Assist, Two of my facial skin cancers were very close to eye and each required a flap to close. You need a plastic surgeon to do the closure if the proximity is close to the eye. Please note that Medicare will cover the excision by Mohs surgeon followed by closure (under anesthesia) by plastic surgeon, usually the next day. You go home from the Moh’s with an open wound with a large pressure dressing. You need to request when you schedule the Mohs as both surgeons and hospital OR need to coordinate. You’ll get the best outcome if you use a plastic surgeon to do the closure.

PhysAssist profile image
PhysAssist in reply toMinify

Hi Minify,

Thank you for the helpful information. I quite appreciate it!

It's been a stressful few months of waiting. I had requested a Mohs surgery evaluation at my MPN specialist's facility [Roswell Park Cancer Center] where they wanted me to have a plastics/reconstructive surgery consultation prior to scheduling the Mohs procedure, but all told, it would've been mid-September before they could schedule the procedure.

Instead, I'm going to the Mohs surgeon I was referred to by my Derm MD.

She [the surgeon] is at the University of Rochester Medical Ctr,, but I before deciding, I also forwarded her pictures of my lesion [tumor] showing the size and close proximity to my eye, and explained what the folks at Roswell had said about plastics being needed, and she reassured me that she had a lot of experience in doing both the excisions and closures in the same area as mine, and that she was very confident that she would give me both a curative procedure, and a good cosmetic outcome, Even more importantly, during the Tele Med consultation, she convinced SWMBO of the same.

Thanks again,

PA

Minify profile image
Minify in reply toPhysAssist

I’m glad you explored your options and have confidence in the Moh’s surgeon. They are highly specialized. Let me know how it goes, and good luck!

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