I have been trying to pluck up courage to write this.Since my P V and before diagnosis,had the flushed cheeks ,hands red,itching eyes ,skin etc. Take Hydrea ,7 yrs now,dose according to monthly blood tests.Fast forward to red left cheek getting worse and peeling.No-one really noticed,protect face always from strong sun,but have always had outdoor life.July ,I noticed a spot ,very small appearing centre of flushing cheek.Fast forward ,G P ,then Dermatologiste,who told me in no uncertain terms that I had a Carcinoma that needed immediate surgery.She also said that as I take Hydea,I had not taken enough care to stay covered ,always ,not just sunlight....really scared me.Very quickly,good surgeon,but the little spot was surrounded by carcinogenic cells and the surgery was major.Iwas horrified at the sight of myself,healing now6weeks on,will not post pics.I am assured by surgeon,who actually has done a fantastic piece of work,that in a few months I will not see any scars....but the trauma has been horrendous for me and my husband too.Now I still have to shield wounds from wind ,sun,water,dust,in other words I am to cover up for months yet,tho the daily dressings being changed has now finished ,special creams now to help healing.I want to warn anyone with an M P N ,taking Hydrea to watch skin carefully,do not ignore the red scaly patches anywhere,especially the face.I was proud of my well cared for skin,now I am in shock that this has happened.Confidence disappeared,tho I am stronger now,would not like any one else to go thru the same. Could we not have better warnings of the danger of skin cancer and Hydrea...or was it that my Dermatologiste and very experienced surgeon were wrong ?
Carcinoma: I have been trying to pluck up courage... - MPN Voice
Carcinoma
hi inca, regardless of what we know or what your dermatologist says, you have been through a very tough time. you sound stressed even traumatised by whats happened. it must have been very difficult for you. your post is important for anyone taking hydrea but just as importantly, it is perhaps the start of you getting some support. This is a lot to deal with & it can be all to easy to wish you had done something different or wish youd known more when really, more than ever, you need to be kind to yourself. You mention its taken a while to write this post, perhaps its still difficult to talk about. Well done for taking this first step, we're all hear to keep listening xx
Dear Inca, thank you for the kind warning about this problem, I agree not enough warnings are given about staying out of the sun but I do hope you feel better very soon . I feel for you very much , it must be a dreadful shock having this happen , but you sound strong, so keep up the good care of yourself. We are all in the similar boat and are grateful to you for caring for others.
Oh Inca what a dreadful time you have had and I hope you can now continue to get stronger .
It is so good of you to emphasise the importance of covering up when you have been through so much .
I know about covering up but I admit sometimes I forget .
I'm sending you loads of healing vibes and lots of virtual hugs xx
Thank you for writing. It reinforces what we are told but so often ignore. I am grateful and hope that you recover quickly and well. God bless, Sallie
Thinking of you Inca what a terrifying experience. I so hope as each day goes bye things will ease for you.
so very sorry to hear your story
but such good news that you're going to heal well
and thanks so much for posting the warning to us
Hi Inca,
I am so glad that you are recovering and found a good surgeon. I hope you will be feeling better really soon.
Thank you so much for posting about Hydrea and exposure to sunlight. I live a lot of the time in a Gran Canaria so for me it is very important. Neither of my consultants have warned me about sun exposure whilst on Hydrea. Of course, I am careful in the sun, but I would have been extra careful if I had known before now.
It was very kind of you to talk about your harrowing experience to warn others here.
Bless you!
Kindest regards and a big hug,
Marcia.
Hi Inca, thoughts are with you. Hope your posting has been somewhat cathartic for you. Thanks for the reminder regarding protecting our skin in the sun as well. I had heard somewhere that I should be more wary now. However, I'll be honest I don't know is that because I have an MPN or because I'm on Hydea......so much information when you're diagnosed!
Above all Inca, remember you're not on your own we're all here for you, just look at all the responses so far.
Thankyou all,feel better now to have posted the warning and had your kind responses.I am in U K just now,forced myself to do Xmas Fairs and face people.....good sales and orders,had to see Doc as now have chest infection,he was amazed at the surgery how clever it is,optician also and dentist (yes I am a wreck !!!!!) All saying what great surgery!So I have been lucky I think.However ,the discomfort,pain and now the scary worry of continually checking everywhere....have been assured biopsies are negative....The cold here has made poor face stiff and aching ,in spite of bobble hats,pashmina wraps,Jackie O specs,feel like a hiding celeb!!! Worst thing,I lost my lovely big G S D ,the black on my pic,to cancer of spleen very suddenly just after my op,I felt like giving up totally.Inspired by the posts of J R and others in much worse conditions than me,I came to do the exhibitions,stay with my daughter and now I hope my experience warns you all? Back to Fr, the weekend for checkups,blood etc. Keep Well every body,don't give up ,life goes on doesn't it,beauty only skin deep !!!!!!xxxxSallyMust add,one person said ,'Oh have you had a face lift?How marvellous!!!' I did not reply !!!!
Hello Inca, what an awful time you have had, and very brave of you to share it with us, we are all sending you lots of love and hugs. I am sure we will all be extra careful now in checking moles, spots and strange patches, so thank you. Maz x x x
Advice for you all: when you are taking Hydroxycarbamide you do have to take extra precautions as it does make the skin more sensitive, there is a warning in the Hydroxycarbamide leaflet about skin cancer and taking care in the sun, (but we don't always read everything in these leaflets do we!) We also have advised about taking precautions in our booklet on Hydroxycarbamide, you should avoid exposure to the sun by using sunscreen and wearing protective clothing and a hat. And remember, the sun during the winter months can still cause damage to your skin so still use a sunscreen.
Thank you Maz for your kind reply.Such a help to have all the mails,e hugs and best wishes.I must reiterate what the very pedantic Dermatologiste said to me.That it is not sufficient to cover just in sun light,but that harmful rays are now all the time,all around us....I think she was a bit over the top,but she scared me.My life has been outdoors in all weathers,all seasons....Maybe it is more of a risk if like me one is fair skinned,blonde ,blue eyed...Since living in a warmer environment and since P V,I am extra careful,never sun bathe,never have .I see my Brit friends basking in the sun,tanning every inch,feel really put out ,that as the care ful one ,I get the trouble!!!Thanks again Maz,will keep you posted how things progress,I am surprised too that we all have not realised how much risk we are under.Optician I saw here in U K last week told me he is seeing more and more carcinoma on faces,so it cannot be just strong sunlight the culprit.Very Best Maz to you and your team,life savers for us all.Love to you and all ,Sally
Pleased you're feeling better, and thank you for the warning, I've never been a sun worshipper but being outside a lot I realise i need to cover up and use sun screen all year round. So sorry to hear about your dog too, it's horrendous losing a furry member of the family. Sending virtual hugs.
As I have previously had a malignant melanoma thanks for the advice. mine was on my back which is badly scarred but that doesn't matter as long as they got it all and I suppose no one really sees your back anyway .
Oh Inca you poor thing. Well done for being so brave and for advising the rest of us with such important information. I hope your scars, physical and emotional heal very soon. lots of love. Mel x
Sorry Inca for all you have been through and thank you for sharing it all with us and hence giving a realistic warning on what we should be aware of - so easy when on HU to know risks but not quite take it seriously. I use sunscreens all thro summer but just noted Maz's comments to continue in Winter which I have neglected so it has helped us all. For you I am sure each month that goes by you will recoup not just from the surgery but the trauma of it too so all the best for your trip back to France - and much thoughts for your loss of your furry friend - Jill
Inca, so sorry to hear you have had a bad time but so good that you have written a post on this forum so we can all support you. I always think with scars, imperfections, etc that they are on the surface - it's the person underneath who matters. Lots of E hugs Aime xx😺😺
Inca, thank you for posting. I was so sorry to read of your experience, but I really admire you for posting. It must have been a scary road. I'm glad you are on the road to recovery. I am on hydroxy also, and I am so glad I read your post - although it is winter here (Canada) I have just started walking to and from nursery school to pick up my grandson and I realise I need to protect my skin - although it is bitterly cold in winter the sun can be bright. I am often a little behind in responding to posts because of the time difference, but I was so delighted to read people's mess
ages, what a kind, supportive bunch are on this forum a group of friends a keystroke away. All good wishes Inca, we all needed to hear your story. Thank you.
So sorry to hear that you went through this horrific experience. I am praying for you, may God our Lord be with you and send you healing blessings, love, peace. Amen
Wishing you well.
Hi my sweet friend ,
I'm so pleased you've started to gain strength, & are getting stronger
this has been a very stressful time for you & your family ,
I appreciate it hasn't been easy for you to post this ,
we all need to take extra care & protect our skin No more lying in sun for me that's for sure even with a high protection cream on ,
Sally im sending you massive get well wishes , 😘❤️️🙏
Thanks for the update , I know just how difficult it's been for you xxxx
Love Pam ❤️️
I think forcing myself to do the exhibitions was a good decision,talking to people and realising they were more interested in my work than my scarred face ,just an odd blip when I caught sight of myself!!!! Healing fast ,I have to say,Thanks Pam.
Tried to shop in Bath yesterday........Oh Goodness!!!!!The crowds of people ,the traffic,so unused now to U K Xmas and the madness....I did not stay the pace !!!!!Best Love to you and family ,and to all who have been glad I posted,was afraid I would scare every one.sure tho we need to take care all the time,especially those of us spending a lot of time in warmer climates.Sally
Hi Inca , I am so sorry to hear all you have been through and I think I understand how traumatised you feel inside as I had to have MOH(?) treatment for cancer on my nose some years ago followed by a skin graft but I didn't link it to hydroxy as I have Celtic colouring and the surgeon said it could have gone back 50 years! Also I now have more problems as I made a point of spending a daily 10 mins in the sun this summer as I have a Vit D deficiency . Now waiting to see consultant . Thank you so much for highlighting Hydroxea as I Can't remember anyone warning me but I did read the leaflet at some point so I must accept responsibility for it . I wish you well and thank you for sharing and highliting hydroxy . Kind thoughts and hugs .
Thank you Ladymoi...I am of Irish family descent,fair and blonde,tho grandmother a redhead and others too. Sure ,it is more risky for us blessed thus!!
Like you ,was told to get 20 mins sun,daily ,as my vit D is low,Dr gives me a booster dose every 3 months or so.We are between a rock and a hard place,so is there an answer?
Sorry,disappeared before finished,All best wishes to you ,I return the hugs,we really need them sometimes.Just travelled back to lovely warm sunshine in Lot et Garonne,from a freezing cold Wiltshire,where I also picked up a chest infection and my new surgery was so stiff could not move face or talk properly!!!!!!!Absolutely exhausted,in bed,trying to recover....very long drive....Sally
Had no idea this could happen. How awful for you. Of course I didn't read about side effects. Must protect myself more . Plenty of sun in Australia.
Unfortunately as I discovered ,it does Mardi. I had the red mark on my face for some time,but as you know we get so many blotches and itches I did not worry ,and no-one noticed it ,.Then suddenly It blistered .Saw my G P. Who sent me to a dermatologist.She was a dragon lady.....unusual in France I have had nothing but kindness from all medics here....she really tore into me,about being blonde ,fair skinned and English,obviously not protected myself taking Hydrea,and now had carcinoma on my face ,serious and needing immediate surgery. Luckily for me,thru a friend here,suffering the same,tho not taking Hydrea,she spent many years in Oz !!!!Fair skinned. German,now here married to a Frenchman.....had just had an op with top surgeon,and so I saw him and had op swiftly, was a mess for weeks of care and bandages,nurses every day to the house....just had follow up scan ,all is well and all scars healed.But the stress has hit me hard ,I am not a sunbather,tho my life has been outside with horses ,Dragon Lady said ,we do not need sun,the ultra violet rays are always there....if we take Hydrea we must cover all the time or stay in!!!! So take care Mardi,isn't that scary, I am covering face all the time now ,must avoid wind ,rain etc until healing is complete,get some pain still which I am assured will go,So large sun hat coming up.....that should scare my old mares 1/2to death !!!!!Very Best to you,take care,Sally
Oh Sally, how awful for you. Well done on raising awareness, I have always been a sun lover but was stressed the importance of covering up now I am waiting for my Liver transplant once I've had that it will be even more important for me to stay out of the sun - I am thinking of getting one of those bee keeper costumes, what do you think? buy one get one free?
I hope you are focusing on the good and less on the bad, although it's probably tough right now.
Lots of luck Sally; stay positive xx
Not so tough as it is for you Chelle....how you keep your positivity is quite amazing.I remember when first coming on this site,you were running and so fit.I have had the most of my life,successful career,great husband and daughter...you are so young ,with life stretching ahead,yet facing transplant and recovery from it.Really feel that a critical illness for a young person is so unfair,I cannot say enough to wish you well.Yes if you find a good deal on a bee keeper kit ,get one buy one free ,I'm with you! We really do need to have more warnings of skin cancer,I had many people mail who had no idea of the danger....it is on the leaflet with the HYDREA,but we don't really take it in,there are so many warnings on every medication. Will watch on your progress with X fingers,and love ,best of care and most important speedy recovery. Sally
Inca,thankyou so much for sharing your experience,it must be very traumatic going through this. Your warnings will help many people.
Just had another one taken off my lower eyelid!!!!That has been awful as the Lockdown stopped surgery & it became major surgery,still scarred ,I have had several small ones in odd places,I am now on Jakavi,my consultant tells me that the skin cancer risk is less with this drug. We must take great care all the time esp if fair skinned & blonde .Now we have Covid ......life gets worse !
Keep safe and well.
Hello Inca ... so sorry to hear what you’ve been through ... recently my sister in law told me she felt I was over reacting by always wearing a hat and sunglasses when out ..
I explained to her that hydroxycarbomide thins the skin and to always do all I could to protect my skin ...whatever the weather ... I have ET & Jak 2 ...my friend always plays down Mpn ...think she is scared or just ignorant ... anyway all the information I have acquired is via people on this site or my own research ... these Drs etc are only people after all ...people make mistakes... Rely on others with your /our condition for support &guidance...most of the Drs I have met have very limited information re Mpn ...some have none ...Look after yourself and keep safe ..Lainie x
Hi Melanie,I find too that even close friends cannot quite understand the fatigue ,the need to cover up etc.....my G P & consultant tho are very aware of the problems we face with an M P N.I live full time now in France,the care here is excellent,I have P V that was hovering on M F ,stabilised now with Jakavi for over 2 yrs.Was on Hydrea for nearly 10 yrs,thank goodness Jakavi came along ....when I was first diagnosed here it was not available anywhere ,I heard of it thru Dr Mesa at the M P N Voice forum some years ago,never thinking then that I would need it.It is such an expensive drug too,thank goodness we are on Fr Health ,residency ,this Brexit has caused mayhem for English living here,any way that's another story.Take care of your skin that is exposed any weather ,not just sun.Keep safe ,Sally x
We love living here,but at the moment Brexit is making everything so difficult,many English friends have fled back to U K. My French friends are good friends,my health care is excellent ,it's just all unsettling.Our 'Departement'is S W,quiet and beautiful,when we come back to Uk to our daughter ,the traffic and noise overwhelms us! Keep safe Lainie
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