Hydrea over age 65 ET

[Meatloaf9]

Hi All,

Wondering if anyone over age 65 with ET is not being treated with meds for their condition. I am 68 with Jak2+ ET and my platelets bounce between 450-550. I have had this for at least 6 yrs when looking back at previous blood tests but was always told not to worry about it unless it went over 600k.

Now my hematologist says only aspirin until the platelets go over 500k again, 487 currently.

I guess my question is whether anyone else this age is not being treated with meds and if so how old are you and how are you doing.

Thanks in advance for any advice.

Also wondering if anyone has been told that meds such as hydrea (HU) will actually/definitively slow progression of mpn's.

Thanks

[Mwalimu]

I was 69 when diagnosed and, when I questioned going on HU, I was told it was advisable to prevent/inhibit swelling of the spleen. Sallie

[Jan-5931]

Hi. I have ET Jak2 positive but only for a couple of years. I am 68, platelets around 560 and just on clopidogrel. Hemo says no other meds until platelets hit 600. So far I have felt ok , hope it continues . Best wishes Jan

[Meatloaf9 in reply to Jan-5931]

Thanks for your reply Jan, hope you never need meds. Did your hemo ever mention that meds might slow the progression of ET?

[Jan-5931 in reply to Meatloaf9]

Hi Meatloaf, due to see my hemo the end of April, I will ask the question about progression and let you know.

[Meatloaf9 in reply to Jan-5931]

Thanks Jan, that would be great, have a great weekend.

[Hidden]

Hi

Yay someone else not on meds apart from aspirin! I have ET with CALR, my platelets are 620. Another blood test in May. Very impressed with your counts I would not be going on HU with those results. My haem DR is happy with that. As I pointed out to him. Age is only a number!! I feel great. I was diagnosed at 63years now 66.

[Meatloaf9 in reply to Hidden]

Thanks for the reply Lindiloo, glad to see that you are not on meds, may you never have to take meds. I hope to stay off meds as long as possible. Best of luck to you.

[Hidden]

This might help in understanding MPN treatment in the UK: londoncanceralliance.nhs.uk...

[SueYoung in reply to Hidden]

This is a great clinical guideline so clear. I wish it was a Nice guideline being used nationally I suspect many haematologists would wish this too. Thanks for putting it up.

[Meatloaf9 in reply to Hidden]

Thanks for posting this Osidge. I wonder if it has been updated any since April 15? Long read but I am working thru it. Thanks again.

[Hidden in reply to Meatloaf9]

Hi. I am not sure about a later version. Perhaps Mazcd could make enquiries of Prof Harrison at Guy’s Hospital.

[TerriR]

I'm age 61 and very recently diagnosed and an JAK2+. My platelets have been slowly rising over the last couple of years, and hit 558 high. I was started on HU and aspirin because of age as well as other things contributing to higher risk such as a history of high blood pressure and cholesterol. I also have an autoimmune disease (psoriatic arthritis). My doctor said it's not just age, but the other factors that contribute to the decision to start HU. I otherwise outwardly seem healthy (good weight, good diet, exercise regularly) ad he might have held off.

[Meatloaf9 in reply to TerriR]

Thank you Terri, its good to hear that age alone is not an automatic for drug prescription. I assume I will probably soon be placed on meds as I have HBP, high cholesterol - though both are adequately controlled and I am borderline DM although my GP says that there is no such borderline when it comes to DM.

Thanks again and I hope you continue to do well on your meds.

[Indigo42916]

Hey there just turned 60 with ET, and am now considered high-risk but have never had a clot. Highest platelets have been 771, recently dropped to 583 with nothing other than aspirin, can't explain that drop. I am declining hydroxy at this time, as I have a low disease burden, and my mutation is MPL, and the thrombosis risk can't be quantified, too few of us.

So it is of course an individual decision. I don't believe age alone should automatically make one high-risk, and my understanding is higher platelets counts do not automatically correlate with an increased risk of thrombosis.

So perhaps, a history of a clot, is more likely high-risk for future clots than age alone.

Take good care.

[Meatloaf9 in reply to Indigo42916]

Thanks Indigo, good to hear from people who's treatment is individualized. It's funny how the platelets count just jump around. Hoping we all make the right decisions when it comes to treatments. Best of luck to you.

[Hidden in reply to Indigo42916]

Clots are not the only problem with ET as it can sometimes produce bleeding because of deformed platelets.

[Indigo42916 in reply to Hidden]

Yes it is my understanding that this is usually the case when counts get very high I believe one million +. My MPN specialist checked my clotting, and thankfully it is normal.

But indeed, it is something to be mindful of. I think as the medical knowledge of these diseases continues to grow, we will see much more of an individualized approach.

Take good care.

[WileyFrench in reply to Indigo42916]

I’m interested in what test it was that your MPN specialist (haematologist?) used to test your clotting.

[mickey64]

Well your very lucky, I am 66 and only take aspirin but are way higher then yours. I do see a very conservative expert who looks at everything. I am Jak2+ also. He does not have me on meds yet, I did take HU in the beginning but got off of it after 4 months. My local wants me to try Pegasy which I'm going to try. Scared but I'm going to try. LOL If I was at your platelet level I would not worry.

[Meatloaf9 in reply to mickey64]

Thanks Mickey, hope all goes well for you and Pegasy, I have read posts from people who have very good results and some go into remission on Pegasys, here's wishing you the same results. Good luck and keep us informed.

[Noventa1]

Hi Meatloaf,

I have decided to wait and see....min is 810K....so far not noticing anything unusual??

wavynavy....p.s I am vet of WW2

[Meatloaf9 in reply to Noventa1]

Best of luck to you, and thank you for your service, hoping you never have any symptoms.

[Eadaoin]

Hi I’m 75 and have had ET and MDS for 20 years. Only on blood thinner. Highest platelets 700 but generally 580-650. Monitored every three months on “bleed and go” basis. See Consultant once a year but I am always able to make contact if needed. Used to have bone marrow biopsy every two years But docs know more about the conditions now and it is no longer necessary .

[Meatloaf9 in reply to Eadaoin]

Hi Eadaoin, thanks for your response. It is encouraging to see that many of us have done well while in the high risk group (age). Also great to hear that the frequent BMB's may not be necessary. Best of luck going forward.

[Eadaoin in reply to Meatloaf9]

Thanks. On another note I am just preparing to have an atrioventricular procedure on my heart where they destroy the node and I am left totally dependent on my pacemaker. Going in to St Thomas’. Haematology Consultant at Guy’s had to be involved due to the way platelets behave plus anticoagulant issue. Am very lucky to have her on my case too. I will be a Bionic Woman dependent on a machine afterwards😃The heart problem is not as a result of ET just my bad luck to have that as well. But shows how important it is to keep all parts of the system fully informed by us the patients. Good luck to you.Stay positive !

[Meatloaf9 in reply to Eadaoin]

Important to keep that ticker in good shape, so best of luck with the procedure. You are obviously a strong lady so I am sure you will do well. Best wishes.

[Chil67]

Hi am 67 and was diagnosed with Myelofibrosis been taking hydroxurea and my blood counts are all over the place

[Meatloaf9 in reply to Chil67]

I think there are better meds for myelofibrosis than HU. Please check with your doctor.

[bigberta17]

Hi I am 71 and was just diagnosed with ET/JAK2--my platelets are at 487 and my hematologist said when they hit 500 I have to start taking hydrea. I really don't want to and want to find alternative methods to keep platelets under 500--possibly juicing, or pomegranate juice/pills, supplements or diet. Many people said they don't have to start the chemo pill until they pass 600 or 700 which is

encouraging to me but sure would like to continue staying under 500. I am currently taking a baby aspirin like they suggested. Sounds like you are being

successful doing this--any advice you have would be greatly appreciated. Thank you and best of luck to you. Judi

[Meatloaf9 in reply to bigberta17]

Hi Judi, not sure what to say, I think your best advice would be from your hematologist. I am now 70 y.o. and so far just taking aspirin. Have a cbc coming up soon. I am ET Jak2+ and have one other mutation. My mpn specialist I saw at the Cleveland Clinic last may did not recommend any meds, I think my platelets were 486 at that visit, they were 479 in December, and 519 last September. They have been between 450 and 550 for the last 3 years. My platelets started going up in 2004 and went up slightly every year until the last couple of years when they have been bouncing around. I don't want to take meds either, especially Hydrea at this level but will probably do whatever my specialist recommends. If I had my choice I would ask to be started on Pegasys if I could afford it. It retails for around 6000 per month in the US and is not approved for mpn's by the FDA so insurance will not cover it so I will probably not be able to ever try it, If you are in the UK you might want to look into it. I hear there is no charge in your NHS. I do take tumeric, garlic oil capsules, ester C, fish oil and flaxseed oil, I'm not recommending anyone do that, its just what I take. Everyone should consult with their hematologist.

Please keep us informed of your progress and if you decide to medicate and what the results are. I did read a study recently, somewhere on this site that recommended that ET, and PV patients should start treatment early in their disease and with Pegasys or Ropeg as they have been shown to cause hematological and molecular remissions.

Good luck to you on your journey and let me know what you decide to do. I don't see a lot of posts by people our age.

[bigberta17]

Don't know if you just got my reply--I hit a button my mistake and now cant find it. I'm technically challenged--lol.

[bigberta17]

Thank you so much for the info. I am glad to see that your platelets have not gone up high over the years--maybe since we got it later in life, it will stay low--positive thinking. I have read that garlic is good too and I do take turmeric for arthritis and very bad back pain and it certainly helps--don't know if it has any

affect on the platelets. I'll be seeing my dr. at Cleveland Clinic February 17 and will let you know what she says, as she has experience with MPN's. I live in

south Florida and am on Medicare so was sorry to hear they do not cover Pegasys. If people have been helped by it, I just don't understand why they won't pay. I still haven't had the BMB but probably will end up having to have it to rule out Myelofibrosis. Whoops just found the post. I'm glad to see there are people with numbers in the 500's, 600's and 700's who haven't had to go on meds. Maybe there are alternative ways that we can find. Best of luck to you.

[Meatloaf9 in reply to bigberta17]

Good luck on you upcoming visit to the Doc. Do you go to Cleveland Clinic in Florida or in Cleveland, I go to the one in Cleveland.

I have read a post on the mpn research foundation website by a person who got their medicare part D insurance to cover most of the cost of Pegasys with the help of their hematologist (letters). The Dr I see yearly in Cleveland told me that he had not been able to get coverage for Pegasys for his patients.

I don't understand why hematologists don't take the lead in getting coverage for their patients who need Pegasys when they are the one's who prescribe and their annual meeting consensus is that it is the one drug that may cause remissions. Maybe you could ask the Dr that you are seeing this month why they won't do that. I plan to ask my guy at Cleveland in June.

I just try to live as if I didn't have this disease, what else can we do?

Anyway, good luck at your next visit. I'm sure all will go well for you.

[bigberta17]

Thank you so much for your reply. I agree, the Hematologists should step up to the plate and get this approved. I live in Florida where I will be seeing my doctor at Cleveland Clinic and I definitely will put this on my list of questions and concerns. I'm living like I don't have this disease too--I just want to do natural

things to help platelets stay low. I just read where we should keep our iron intake low as iron helps to make platelets. I just don't know how to find out

all the pertinent information but I sure am going to try and share with everyone.

Have a blessed day.