Hi everyone! I am in the USA. I was diagnosed with JAK2+ ET a little over 2 years ago. I saw my new oncologist today and when I mentioned the word “cancer” he became very adamant that ET is not a blood cancer, but a “blood disorder”. He also said that I would be on Hydroxyurea and baby aspirin for the rest of my life.
Aside from that, I was wondering—has anyone here experienced any dental issues while on Hydroxyurea? I used to have beautiful teeth, but now It seems my teeth are weak, they crack and chip quite easily. I lost a piece of tooth while eating ice cream last week!
Hugs to all,
BonnieJ
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BonnieJ
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Hi there, I have been on Hydrea for about 10 years now but no teeth-problems as yet.As I work in the dental world...and my husband does too, I have kept a close eye on my teeth (interesting picture) but nothing .... Yes, it is a type of cronic cancer but I have read that some doctors disagree with that.
I’m feeling that this oncologist is not quite in step with the MPN world. According to the WHO MPNS including ET are classified cancers. And secondly, I would baulk at the ‘hydroxy for life’ Statement. First, the research on treatments is constantly developing so who knows what is around the corner - Well we know quite a lot is around the corner. Second, the drugs do seem to run their course and what suits today may not suit next year or in a few years. And third, the very nature of the condition is it’s unpredictability which I’m sure others here will testify to. Do you have the chance to get an opinion from a haematologist specialising in MPNs? I can respond to the teeth question - though I recall others commenting about their poor teeth in the past.
Hi. I have myelofibrosis and started on other drugs but now on Ruxolitinib. I am in the UK & diagnosed when I was 49 years, regarded young for this. Here too some doctors do not regard ET and myelofibrosis as cancer!! Totally wrong as it is a cancer. Secondly my teeth are definitely weaker than they used to be and my gums not as good. I have been told that any long term drug therapies will cause such problems over time. I have also been told not to use baytery toothbrushes and only use medium bristle brushes. Keep battling as eventually the health professionals will start to take notice of what we have to say.
I am reading the comments about whether MPNs are classed 'Cancer' or not. Yes the are because of the clonal nature of the disease they were reclassified in 2008 from MPN disease to Cancer hence older Doctors reference to it not being a cancer. However whether it is or isn't is insignificant. For example, Amyloidosis is a bone marrow disorder also clonal in nature and long term prospects of those affected is not promising. I think our attitude as those afflicted by an MPN is too research our condition and take ownership of it.
Take a look at the definition of cancer!!!!! Do you need all those extra platelets that your bone marrow is telling you to produce? No! I refer to my ET JAK2 as a 'condition' but that just makes me feel more positive. ATB. Penelope
I have ET, Jak2+. I have been on HU for 2 1/2years. Definately seems to weaken teeth, I keep losing bits when eating and have had to have 2 crowns recently.
I was diagnosed ET Jak2+ in March & so far I have noticed occasional bleeding when brushing my teeth. Also sometimes I feel fragments of crumbly bits in my mouth which has me a little worried. Last year, I had tons of work done in my mouth along with full upper dental implants and I would hate to have them fail.
I’m in the states too & my haem told me ET is considered a cancer. He never brought up how long I would be on HU, but I just assumed it would be forever.
Hi bjay22 perhaps you should have your platelets checked. It could be they are elevated hence gum bleed. This happened to me. What I found fascinating was how quickly my mouth and gum returned to normal.
Thanks Annastauton. I will be seeing my haem in 2 weeks for checkup & they check my platelets at each visit. When first diagnosed I was getting them checked every 2 weeks, but that appt changed to every 2 months after last visit. I sure hope the platelets are ok because I don’t want to take a higher dosage of HU.
My oncologist is also a hematologist and works for one of the largest specialty groups that practices throughout Florida.
I was thinking, after I left his office, that here in the US perhaps calling ET a blood disorder instead of a type of cancer is actually a blessing in disguise. Because here in the US our healthcare system is so screwed up. Healthcare is practically free for the very poor and disabled, affordable for the rich. For the middle class, which is most of us, it is expensive. High monthly premiums and copays, certain amount of money that you have to pay before your insurance even kicks in.
And when insurance companies hear the word “cancer” in any form, they see you as a liability for them—-someone who may need more tests, lab work, radiation, chemo, surgery, or hospice care down the road. Some insurance companies won’t accept you if they find you had a pre-existing condition of any type of cancer. Others will give you insurance coverage but the costs are so high! One shouldn’t have to decide between either paying for a decent apartment OR paying for decent healthcare.
So perhaps my Dr. is of a mind that if certain conditions aren’t classified as cancer (here in the US), then it will help some of us ( like those with ET or PV) to be able to find attainable, affordable healthcare services.
Hello! Try to find my post about insurance. I left details on a program I was informed about when I started shots for AMD, but the organization may offer assistance for other diseases. Called a Chronic Disease Foundation, of something like that! You'l find my post under the Macular Society section of Healthunlocked. If you can't find it, let me know and I'll copy/paste it to you.
Hi Bonnie, I’m also in USA but all my oncology docs consider my ET a cancer as do all the MPN groups like Patient Power & the MPN Foundation. Have you registered for insurance under the AFFORDABLE CARE ACT (what has also been called Obamacare)? If not, I believe it’s still available. Best of luck to you. Katie
Katie, I had Obamacare but my monthly premiums went from $156/mo to suddenly $1600/mo. I called the Healthcare Marketplace phone number that they give you, the people there can give you no information that is pertinent to your case. I am retired now, I receive too much money to qualify for Medicaid, I am not old enough yet for Medicare. Needless to say, I had to drop the Obamacare, cannot afford private health insurance due to my history of breast cancer, so now I have no insurance.
I have spent most of my life as a nurse, taking care of others, and now I can’t afford my own care.
Found it! here's what I found, and I just checked the website - your condition can be covered. GOOD LUCK!!
Hello!
I'm in the USA. When I started injections in 2013, I was provided with information on a program from Chronic Disease Fund, a Copay Assistance Program. (Fortunately, I didn't need it as my Blue Cross/Blue Shield insurance covers my copay costs, which amount to almost $5000 for shot/visit/tests each month!!) The fund phone # (in 2013, assuming it's the same now) is 877-968-7233. Address 6900 N. Dallas Parkway, Ste 200, Plano, Tx 75024, Website: cdfund.org . GOOD LUCK! Includes: Hypereosinophilic Syndrome, Myelofibrosis, Essential Thrombocytosis, Polycythemia vera
Bonnie, do you know if you’d qualify for Social Security Disability? If you do, you will get Medicare I believe 6-12 months after unless this administration has changed those rules. Katie
I was diagnosed with P.V. 13 years ago and only found out last weekend that it was now classified as a Blood Cancer while attending an M.P.N. Forum in Dublin (Ireland) I am presently trying to get my head around this fact.
I have read a lot about this in the last few days and the fact is that Myeloproliferative Disorders (M.P.D's) were in 2008 reclassified as Myeioproliferative Neoplasms (M.P.N's) by the World Health Organisation ,thus elevating them from a Disorder to a Cancer.
Clearly there are some Doctors whom do not accept this and as in my opinion it is essential that one must fave faith faith in a Doctor it might be in your interest to change your Oncologist and as was previously suggested find a Haemotologist who might be more in tune.
I have post ET myelofibrosis and to me the question is ‘what’s in a name?’
Call it what you will the end result is the same, in fact most cancers are treatable ours isn’t - you choose, if it’s more comforting to call it a ‘disorder’ or a ‘disease’ then do - me I try not to think about it at all, but have to agree with the WHO - it’s a cancer.
My haematologist didn’t tell me and it came as a terrible shock as I’d had et for13 yrs (I knew about this) but mf for 3 yrs and not been told? I’ve now changed my haematologist and I will now be told exactly what is happening and when!
My heart is with you all out there, chin up and keep smiling 👍🏻
I was on hydroxy for about 7/8 years but didn’t have any side effects. For the last 8+ years I have been on anagralide, now added folic acid and a weekly injection of Epoetin Alfa ( Eprex) into the mix! But I’m stable!
Please don’t stop or refuse any medication just because you may loose some hair ( or even all of it)
I was told very early on in et that basically take the medicine or risk death or disablement - if you don’t trust you haematologist or want a second opinion - get one. I was also told that et will not kill you your life span will be about the same as anyone without it - hope someone gets comfort from this!😉
Hi 111xxx888, normal platelet count is 150-450, so maybe you will only need a low dose of Hydrea. My hair has thinned out considerably since being on it, but I’d rather put up with that than risk a stroke or heart attack if I didn’t take it.
Not everyone who takes Hydrea has hair thinning. Try not to let anxiety over possible side effects get in the way of knowing that you’re taking medication that might save your life.
I have just found this website but wanted to reply to you about the teeth & hydroxy. When my dentist found out I was going to be taking chemo drugs (hydroxy) he made me silicone trays and has me put fluoride gel in them. Both he and his father are dentists and in their practice they have found that many of their patients on chemotherapy have tooth issues and this helps. I was not too happy with the fluoride bit, but really like having teeth and can't find any conclusive evidence that it is bad for you.
I was also told I would have to take hydroxy forever, but maybe in lower doses later on?
Same I have a strong teeth before but now its weak easily gets cracked. I notice having this hydroxyrea I think makes it weak...Idk if this is really the side effect or one of the side effects.
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