When To Treat With Meds

[Griffey]

Hi! I am a 55 year old woman. I was diagnosed with ET after a routine blood test resulted in high platelets. Started out 615. After two months, it's now 750. I have no symptoms yet! I have only been taking baby aspirin so far. It seems there is quite a difference in opinion of when to treat patients with a count similar to mine. Do you treat before they get higher than my number or wait? Any thoughts?

[Ebot]

Hi

Sounds a very similar story to mine. I was a bit younger and my platelets were a bit higher (they climbed slowly but steadily over a few months until the GP gently but firmly suggested that I really did need to see a haematologist!). I was put on to aspirin and regularly monitored.

A couple of years down the line and the platelets had climbed to around 1300 but haematocrit levels were high. A second BMB and nuclear scan confirmed PV. Still remain just on aspirin with regular venesections.

Rule of thumb seems to be no drug interventions until platelets 1500 and / or over 60 years. Even then negotiable. However, really depends on individual - other health issues, obviously any thrombotic episodes and how well you are coping with any symptoms. My platelets are currently around the 1200 / 1400 mark and haematocrit appears to be managed by venesections. The Prof doesn't think I 'progressed' to PV - just went a roundabout way to developing / diagnosis! Anyhow, as most others will probably tell you, it's an odd, unpredictable disease.

My personal view is to keep off the drug interventions (other than aspirin) for as long as you can. And when you do have the conversation - as inevitably you will - be as questioning and probing as you can. Meanwhile, enjoy life!

[Griffey in reply to Ebot]

Thank you for your helpful comments.

[MariaB27 in reply to Ebot]

Hi Ebot

I am interested in your reply as am being advised to start taking Hydroxy and was hoping to delay this. My platelets are about 700 so think the reason is I am 73 cannot decide what is the best to do. I dont have any symptoms, I have PV Jak 2.

Really interested in all replies thank you

[Ebot in reply to MariaB27]

Hi

The other magic number is 60 years. I would have been surprised if your Doc hadn’t proposed a drug intervention. Certainly I have been told 1500 or 60. Not written in stone obviously but definitely points at which to have a serious conversation. I would have thought that there wouldn’t be much of a debate at 73 (sorry!). You might want to talk about which drug though. Good luck!

[MariaB27 in reply to Ebot]

Thanks for your reply Ebot

[Lainy1]

Hi, my consultant says she starts people on HU with platelets over 1 million. Hope this helps.

Best wishes lainy 🤗

[Griffey in reply to Lainy1]

Thanks!

[Hidden in reply to Lainy1]

I agree Lainy, don't rush into meds if you don't need them!!

[jamieisabella]

I wAs diagnosed at 64, no symptoms at all and went on 75mg aspirin daily. Platelets continued to hover around 800-900 and I was not anxious to go the Hydroxicarbamide route but then had to have knee surgery! I decided to take my haems advice and was put on a larger dose to drop the platelets count in prep for surgery. Have now been on Hydroxy for 2 years, platelets stable and while I don't like taking chemo meds I don't like the alternatives either!

Good luck with whatever you decide. J

[Griffey in reply to jamieisabella]

Thank you so much!

[MariaB27 in reply to jamieisabella]

Hi jamieisabella

just wondering if after 2 years what side effects from the hydroxy are you having and if you are happy with the choice you made? II have PV Jak 2 no symptoms and think my age 73 is the reason to start hydroxy, still not sure I would appreciate your comments, thank you

[jamieisabella in reply to MariaB27]

Hi Maria, I haven't had any side effects other than I have noticed recently a slight thinning of my hair. It can affect your teeth though so regular check-ups and the hygienist is very important.

I'm happy with the choice as there is the benefit of peace of mind that comes with it! I also have the best haematologist that I trust implicitly so that helps. J

[MariaB27 in reply to jamieisabella]

Thank you so much for your reply, I looked at your previous posts and replies and feel so much more confident. Thank you

[Boss1]

Hi Griffey, I am 55 and got diagnosed with PV at 51. My platelets have been 615 at the highest and they go up and down. On aspirin and the odd venesection (about 3 a year). I'm doing loads of diet things and taking Curcumin (very potent part of Turmeric). There has been quite a bit of research into this now with regard to these blood conditions but because there are no drugs for the companies to make money out of, unfortunately not enough. People are understandably cautious as their haematologists feel they can't recommend. I'm less cautious as I am under the help of a medical herbalist who is extremely well trained and aware of contraindications etc. Staying off the meds as long as I can but I know that day might come.

[Griffey]

Thanks! I too, do not want to go on meds yet!

[Cupcake5967]

Hi Griffey, I moved to Eastern NC in 2013 and originally from LI/Queens, NY. I too was diagnosed with ET in 2015 after a routine blood test from my ob/gyn. She referred me to a hematologist at our local cancer center. I was in denial so before actually going to the hematologist I brought my past blood test results to my internist for his opinion (my internist actually knows my hematologist from working beside him in his residency at Sloan Kettering in NYC so I feel I am in good hands and all my drs communicate often with each other, which is very comforting). My internist read and confirmed that I had ET for at least since 2012, and my previous dr from NY never mentioned a thing. My initial test from 2015 showed platelets to be in the mid 700's and my hematologist prescribed two (2) baby aspirin daily. I see him every 4 months, and currently my platelets are at 804, but there was one test prior and the count rose to 900. He was a little concerned and told me if I experince a clot, etc., he would have to put me on chemo pills. I don't have any of the JAK2 chromosomes or the C.AL.R. With a lowered platelet count I had end of June he said I can see him in December. I find that stress increases my platelets so I started an exercise regime to combat it and since turning 50, my primary dr prescribed phentermine 37.5 mg to help boost my metabolism. I've successfully lost, so far, 18 lbs in a month and a half.

Just another note: When you have any surgical procedure let your surgeon know of your ET condition so that your hematologist can get on board as well.

I hope this helped in your question and I wish you good health. Have a great day! Feel free to stay in touch.

[Griffey in reply to Cupcake5967]

Thank you so much! You have been very helpful!

[Mazcd Partner MPNVoice]

Hi Griffey, being started on medication, like Hydroxycarbamide, does depend on many factors, your blood counts, current and past medical history, family history, weight, BP, and symptoms, the guidelines about age and platelet counts are just that, guidelines, they are not definitive, so if and when you are started on any other medication is entirely individual to you. Best wishes, Maz

[Griffey in reply to Mazcd]

Thanks!

[Pkm52]

Like Lainy1's post 1,000,000 + platelet count moves you to the risk of hemorrhagic events vs. the threat of emboli per my Heme/Onc and what I have read.

I was diagnosed this summer, had a bone marrow biopsy and started Hydroxyurea when my platelets reached 720. After 2 months my platelet count is 460. I am a health care professional and worked post stroke for 5 years. I am highly motivated to do what I can do to keep my platelets from getting "sticky" and forming a clot.

Good luck,

Patty

[Griffey in reply to Pkm52]

Thank you!

[tuffetgal]

hi griffey

i am a seventy five years young female with et. i am also hypersensitive to "chemical based drugs". my platelet count has been a steady 930 for about two years now.

i am a non smoker/drinker and dedicated vegetarian. i take many supplements for my platelets which is my only problem thus far. i take l-arginine, policosonal. vitamins a, c, d, e

turmeric and ginger. i also drink eight to ten glasses of water per day and 81 mg aspirin right before bed. i have not had any other treatments thus far. i was having moderate fatique and then my third hemotologist said i could take iron ( plant based which is not constipating) and my fatique is greatly reduced. this is after many months of research and three specialists. i hope this information helps you. this is the best support group i have found so far. so kudos to all of us !

[Griffey in reply to tuffetgal]

Thanks! I agree This group has been so helpful!