Hi, I'm new here and am hoping I might receive some feedback on my experience. I was diagnosed with ET about two months ago and felt scared and alone, as I wasn't able to see my haematologist in person due to the lockdown. Medication for that (Hydrea) has been going OK after the first week, in which I felt nauseous, dizzy and had a stomach ache. My platelet level is going down and I'm now feeling OK with the ET situation.
I have also been seeing a dermatologist regarding another health issue and she noticed an irregular mole, which was duly removed. I was called back into her office last week to be told I have a Stage 1 melanoma. I had surgery to have a larger piece of skin and flesh removed the day before yesterday (ouch!).
I'm wondering whether the two (ET and melanoma) could somehow be connected. Has anyone else had a similar experience? It's very difficult to communicate with my specialists at a medical level, as my French is limited to general conversation and I become a bit panicky and out of my depth when they start with the medical jargon. I asked the question of the dermatologist, but I was wearing a mask and I don't think she understood my muffled question and English pronunciation of ET. I'm almost certain that she is not aware that I have ET, so I'm sure she found the question confusing.
Thank you for any information you can offer.
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Fernsong
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I have P V,11 yrs now..Hydrea first,within a short time I had acarcinoma on my left cheek.I saw a Dermatologiste who said it needed surgery...fast forward to a superb surgeon who removed it,it was major surgery with dressings for weeks every day,tiny little red scaly patch. Got over that ,then two on my chest ,1 on my leg...this time burned off by dermo Dr .Now I am on Rux ,since then l have carcinoma on my left lower eyelid,had R V for a specialist eye surgeon....then came Lockdown! Now it is bigger,very uncomfortable,but hooray I get it removed in two weeks time.I am not a sun worshipper,tho spend a lot of time outside with my horses.I am totally convinced that these Chemo drugs we take are the culprit.I live in France,
I guess you do too,yes it's difficult with serious medical matters......I am fortunate that my consultant ,my G P and infirmier all speak some English!
The Dermo lady Dr I see also thinks the same esp Hydrea causing skin cancers .Hate to worry you ,but take great care ,there are others on here who have had similar problems.Now I cover up completely and a big sun hat,try to go out very early,or not at all on hot days.Hope you find really good Drs to advise. Wishing you the very best,the M P N is enough to cope with,we don't need skin cancers as well. Take good care.Sally,Aquitaine.
Lovely to hear from you and sorry to read you're having a bit of a rough time of it. How long have you been in France? The medical system over here is second to none, isn't it?!
In my case it can't be the chemo drug that has contributed to the melanoma I had, as I've been taking Hydrea for only about a month. (Now that I've written that down and read it though, I'm not so sure, as melanomas are supposedly very aggressive!)
My Drs. also speak reasonable English, but I tend to become quite flustered with the medical side of things. I'm pretty ignorant when it comes to anything medical!
Anyway, it's good to hear that I'm not alone with these concerns. Yes, I live in France too - in the Haute-Vienne.
Yes I think the medical system here is superb. Had several hospital stays and the care there is really good,staff are all caring and kind,everything is squeaky clean,of course your own room and bathroom,or share with one other female patient. Yes I understand your confusion medically,I still am anxious over it....I have had the same consultant since diagnosis,over the years we have taught each other Fr or English words!
When we go back to UK to stay at our daughters farm( horses) I am always nervous I need medical help!!I was once knocked over by a loose dog that tried to attack my two Grman Shepherds on leaders,in t he melee I ended up with a head injury....paramedics were excellent,but once at the hospital there was not a Dr or nurse that knew what P V was! Fortunately we take all my medical records with us,so my husband had to translate the French ......The scan was on my head was quick,but after that We were left in a screened off square for hours.Then they sent me out.....!In France I would have been kept in and observed .
So we are lucky to be here,except for my daughter her husband and our horses and stallion we love,We have no desire to go back to U K to live.
Keep safe and well,interesting to know another M P Ner in France!There is another lady on the site in the Ariege.
Must say the Forums in U K are excellent,Maz and her team and experts. In the disease from different countries.I have not found anything similar in our area,tho Toulouse is within an hours drive and Bordeaux too.Portez vous Bien!
Hi Fernsong , I have had Et for 30, years but had two bouts of basel cell carcinoma on my ears which were removed . somewhat look like van Goph but only good at house painting.
Hee-hee, love your description of yourself! Have you felt well for all those years? It looks as if I'm going to be able to tolerate the chemo medication. That was my main concern - wondering what sort of QUALITY of life I would have. Thank you for your feedback and stay well.
Very broadly speaking, if you have ET (or another MPN) you are at increased risk for other types of cancers (AKA - Neoplasms). Neoplasms = abnormal growths. Myeloproliferative Neoplasms = Abnormal growth in blood cells. Dysregulation of the JAK-STAT pathway increases the risk of tumorigenesis and interferes with apoptosis. Thus, we are more prone to neoplasms of various types.
I think you correctly discerned that while hydroxyurea is a carcinogen and skin cancer is one of the risks - it is not the cause of what you experienced. Given your history, now that you are on HU it will be more important than ever to minimize risks. Sun-screen is your friend!
I just had the discussion about secondary cancers with the MPN Specialist I consult with. What he recommends is really just standard monitoring and awareness. It is really important to involve a MPN SPecialist as most docs, even hematologists, do not have much knowledge/ experience with MPNs. Here is a link to patient-recommended MPN experts mpnforum.com/list-hem./ . The only one listed in France is in Paris. the MPN specialist I see is two hours away, so I have a local hematologist who handles on-going care and the MPN Specialist who consults as needed.
Hope you have a chance to get more detailed information on your questions. ALl the best to you.
Thank you very much for your honest and informative response, hunter5582. I will certainly explore the link you kindly provided me with. It's a minefield, this MPN business! Stay well.
I was informed that Hydrea makes us highly susceptible to skin cancers. In four years I’ve had seven skin cancers removed through MOH’s surgery and cryotherapy. I cover up, wear sunscreen, a large hat, and avoid the sun between 10-2
Hi, I was diagnosed almost 2 months ago with ET . Not doing as well as finding it difficult to get my head around situation. Not yet started hydrea yet as head still very confused coming to terms with it all. I'm 65 had a heart rhythm problem. Hence bt's found ET Jak2.
So only starting on the journey, so learning myself. Finding alot of information so varied.
Welcome to the club no one wants to join. Glad you found this forum. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Still alive and kicking an having a good life at age 65. A couple of years ago, I had a cardiac catheter ablation to cure paroxysmal atrial tachycardia. It was successful and well tolerated. Only side effect was mild reactive thrombocytosis.
There is a lot to wrap your head around learning about having a MPN. This forum and the related Voices of MPN website are really good places to start. You can also find some excellent resources oniline fro the leading MPN experts like Angela Fleischman, Ruben Mesa, Robert Silvers, and Jerry Spivak. Dr. SPivak used to be my MPN consultant prior to his retirement from active proactive. Here is a very good presentation by Dr. Spivak about ET.
Hope this helps you get a start on understanding ET and some information to start making treatment decisions. Hydroxyurea is only one of your options if you choose to engage in cytoreduction as a component of your treatment. There are other choices that you can explore.
Hi thanks for your response and the info therein. I was not informed of options just hydrea and injection s. Really interested in looking into working with a MPN specialist - not sure how to go about it though. Did ask if a second opinion would be helpful. But was informed treatment would be the same.
Here is a list of MPN expert docs mpnforum.com/list-hem./ . You definitely should get a second opinion. Many hematologists lack the KSAs to effectively treat MPNs. They will read a standard protocol and follow it regardless of whether it is the correct individual approach for you. it is NOT true that all docs treat ET the same. You deserve and need to get input from a MPN expert who can individualize your care.
You may well need some form of medication to help manage the ET; however, there are options other than hydroxyurea. PEGylated interferon (injections), Ruxolitinib, and third tier options like busulfan and anagrelide. ALL of these meds have their own risk/benefit profile. No one responds the same to any of them. You have to work with a knowledgeable doc to identify your options and make an educated decision based on which medication has the most favorable risk/benefit profile for you. It is not a purely objective decision - patient preferences regarding risks matter.
Note: many people use and benefit from HU and tolerate it OK: however, not everyone does. I, for one, am HU-intolerant. While HU is in common use for ET, it is not FDA approved for this purpose. HU was rated by NIH ToxNet as "a highly toxic medication with a low therapeutic index." it is a known teratogen, mutagen, carcinogen and possible leukemogenic. That does NOT mean you should not consider it, just make an educated decision about it. Remember, untreated ET can also have very serious consequences. If you decide to try HU, then there are some things to know and precautions to take if you have a significant other in your life.
Here is a monograph about hydroxyurewa you may find helpful.
Please do follow up with a MPN-expert doc. I did, and it was one the best decision I ever made. It is worth travelling of you must to find a doc with the KSAs that you need.
Here in Germany everyone gets an annual skin examination. The skin doctors often use a machine that gives a numerical reading against the mole. I have had two removed both pre ET. Mine were fortunately benign My partner who is very light skinned has had 8 removed one was early stage. I am going to get regular skin examinations since also starting HU but l would be surprised if in a month yours was down to this. I would suggest seeing a skin specialist as well as an MPN doctor.
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