Response to sunscreen question.

[Janis12]

I am very grateful to you all for your responses in relation to my question about sunscreens , medication and hair loss, we are lucky on this site to have such a bank of information from people who have years of experience and comforting to know that there are others in the same boat. At my hospital appointment yesterday I was all geared up to a probable change from HU to Interferon until my consultant said that this was a drug prescribed a number of years ago and is not used much now to which I responded with with a suggestion he has a look on this site, it is very commonly used. After further discussion he said he was happy to prescribe it if that is what I wanted but felt that Anagrelide would be better as it is platelet specific (I have ET) and would not effect my hair. As far as the sun screen issue is concerned he admitted he would not leave the house without factor 50, his colleague works in dermatology and often reminds him of the damaging effects of the sun on all of us and not just those deemed at risk. So I came away the same as I went in, still on hydroxy and a return appointment in 8 weeks. I hope in the interim time I can make a decision about what I want to do....it's a mine field! Thanks everyone for your help.

[hunter5582]

Glad to hear you were able to engage your hematologist in a productive conversation and that he is willing to respect your wishes in regards to your treatment. You are correct that many providers consider the IFNs a first-line choice along with HU. Some prefer the IFNs. It is not a black-and-white decision. What matters most is that you be comfortable with your choice. Defining your goals and risk tolerance and evaluating the risk/benefit profile of each choice will enable you to make a good decision.

All the best moving forward.

[Janis12 in reply to hunter5582]

Thanks for your response, it is such a big decision which ultimately we have to make ourselves and there is no way we can do that without knowledge...thank goodness for the support of this site.

[J-fd]

hi , I was offered interferon and still haven’t decided what to do as like you say such a mine field , does it cause hair loss , my platelets are in the 400 odd and been like that for a year now go from 400 too 500 highest I think was 600 odd , my consultant told me about this site even though I had already found it , he also does public talks about ET etc and has asked me to attend as think it will do me good to meet others for my mental health as have got quite anxious about it all , I’m lucky to have such a knowledgable and caring consultant , I just take aspirin at the moment so really don’t know what’s the best thing to do , I know sun cream is important and may sound stupid but I’ve never used it so should I now as are we more likely to burn when we have ET

[Ebot in reply to J-fd]

Hi there. It’s not the ET that’s the issue here, it’s the drug treatment and in particular, Hydroxycarbamide. Having said that, as Janis12 highlights in their update post, sun protection is a wise option for everyone, MPN or no MPN. Wishing you well.

[Janis12 in reply to J-fd]

Hi, as I do a lot of outdoor activities I feel it is important for me to make myself as safe as possible. As a cyclist for over forty years I already have some sun damage on my forehead which was treated with ointment, many of my cycling friends (now in their 70s and 80s) are peppered with sun damage and some skin cancers and many of my farming friends have similar problems. We did not see the danger of exposing ourselves to the sun years ago but it seems eventually it does catch up with you and I for one do not want extra hospital appointments in my diary due to something that I did not take enough care to prevent. There have been some very good and useful responses to my post on this site which makes me feel more positive. Your blood count does not seem bad to me, my platelets had inched up to 600 recently despite the hydroxycarbomide, with one extra tablet per week this dropped to 520 which my consultant was quite happy with considering my concerns over hair loss and skin cancer. I am still collecting the evidence so I can make an informed choice in two months time. Try not to be too anxious which of course is easier said than done, if you are worrying about what might be it is very easy to miss out on the here and now. Best wishes.

[J-fd in reply to Janis12]

no platelets aren’t bad but doesn’t take the worry away , all tue best to you

[Mirror368 in reply to J-fd]

Hydroxyurea has a toxic effect that makes you more vulnerable to skin cancer. You need to use sunscreen and have dermatology checks.

If you decide to take Hydroxyurea ask your hematologist if you could start slowly. After trying different doses I am currently taking 500 mg on Monday/Wednesday/Friday. I am starting at 528 at this point….next lab is 6 weeks, I have no headaches this way.

Eileen

[J-fd in reply to Mirror368]

thankyou

[Wyebird]

I’ve had anagrelide with hu. My haemoglobin went as low as 93. Since on Peg I’m so much better.

[Janis12]

That's interesting and some good information for me to work on whilst trying to decide what to do . I did not think the Anagrelide would effect the haemoglobin, so many people on here are saying they feel so much better on Peg, I have no idea why my consultant has tried to steer me away from it by claiming it is not used much these days, this I feel requires further investigation by me. Thanks for your response.

[LucyGeering]

Hello! I’ve read these posts with interest. I’ve been on Peg Interferon for exactly three years now. I’d say it’s weakened my hair, causing it to break rather than fall out, so I have it cut to a shorter length and there’s much less breakage. Since starting Peg I’ve been much more functional and feel more consistently well. Peg was both my consultant’s and my first choice and it’s doing a good job at keeping me stable. Could it be the non-pegylated form of interferon which your dr was thinking of? I understand that that form is rarely used now as the peg one is easier on patients.

[Janis12 in reply to LucyGeering]

Hi and thankyou for your response. I had my hair cut short due to the hair loss with hydroxy and must admit it looks better but of course is still thin. My hairdresser recommended the Nioxin shampoo/conditioner (this was advised by the oncology nurse) product range which has made my hair feel as if it has more resistance and together with mousse it is almost acceptable but what a faff. I will review the Peg issue again with consultant, I assumed when I mentioned interferon he would know I was talking about the modern version as he was guy in his 60s with many years experience in haematology but hey we should never take anything for granted. Best wishes.

[russkatt]

After 4 years Hydroxyurea has thinned my hair, my skin and fingernails. Also ridiculous fatigue. It drives me crazy. When I switch to Peg I sure hope it is an improvement.