P V diagnosed January 2022

[Mandz12]

Hi all

Update positive for Jax 2 first blood test platelets over a 1000 and red and white blood cells raised . So started me on Hydroxycarbamide 500mg per day.

Suffered headaches and nausea.

2 nd blood test platelets dropped to 560 but red and white still raised. So upped my medication to 2 x 500mg per day then 1x 500mg next day. Same headaches and nausea. 4 weeks blood tests.

3rd Blood Tests

Platelets dropped to 170 and both bloods dropped aswell so consultant happy with that still same nausea and headaches sometime a heavy feeling in my legs .same meds. Blood test every 8 weeks.

Stopped itchy after the shower which is great not as many night sweats either so think I am one of the lucky ones.xx

[mhos61]

Glad to hear all your counts seem to be in order.

Hopefully, the side effects will get better as time goes on. It might help if you take your meds before bedtime in the hope that you’ll sleep through any adverse side effects. Also make sure you drink plenty of water.

Hope everything continues to go well for you.

[Mandz12 in reply to mhos61]

Thank you I might take them at night xx

[EPguy]

Your PLT are heading low. You should discuss with your Dr about adjusting your dose before risk of overshooting your goals. I was on 1000 HU and my counts did decline well. At the low point here I was miserable, and Dr agreed to reduce to ~500/day. Your details likely will differ but the idea is to watch the dose carefully as it starts to kick in.

Also, if the HU continues to make you miserable you should ask about other options including interferon (Pegasys, Besremi) Many members are doing well on it.

PLT

[Mandz12 in reply to EPguy]

Will look into it x

[Meatloaf9]

I agree with mhos61. I am also on HU. It took about 6 months to determine the optimal dose of HU for me. My counts still vary from month to month just not as much. I have not had any side effects from the HU that I am aware of but my mpn specialist did tell me to take them at night if needed, I take them every morning. At your age (46) I think I would talk to my hematologist about one of the interferons and make sure that you see a mpn specialist at least occasionally. Best to you on your journey..

[Mandz12 in reply to Meatloaf9]

Not been told about a mpn specialist.

[ritaandscooter1]

Hi Mandz, You situation is very similar to mine when I was diagnosed. I was 43 when they found raised platelets and then my white's went up as well. I was considered low risk and since I was young my MPN specialist recommended low dose aspirin and phlebotomy's. I've tried Pegasy's (22.5mcg....very low dose) but still effected my quality of life as I had dizziness, brain fog and just overall didn't feel well. I refused the HU as my family and self have a history of skin cancers and I spend half the year in Arizona.....land of the sun. I am now 61 years old and take 2 small low dose aspirin a day and get phlebotomy's when needed. I feel great now and workout daily. I don't know your specific situation or risk factor but you are very young......are you seeing a MPN specialist? Seems your platelets are getting too low?? Good luck with everything and please look at all your treatment options.

[Mandz12 in reply to ritaandscooter1]

Nobody mentioned a man specialist to me

[ritaandscooter1 in reply to Mandz12]

Definitely find a MPN specialist. Your going to have to advocate for yourself. Many Hematologists are not fully versed on how to treat these rare blood disorders. I've been through 2 now in the Arizona area while I winter here and it is SHOCKING what they recommended. One Yale medicine trained doc I saw wanted to give me a iron transfusion for low iron before my phlebotomy. He would not listen to me when I said that you don't give a PV patient an Iron infusion because it makes more blood which I don't want.....I'd need a phlebotomy every month! He continued to argue with me and would not listen. I've had PV for over 20 years........I think I know a few things about PV and my body! Needless to say I'm looking for a Hematologist in the area who will monitor my numbers and won't try to treat me. (My MPN specialist treats me via teleconference- I also have an excellent doc in Alaska) The first doc wanted to put me on HU and once again would not listen to me. Best of luck to you........and get an MPN specialist ASAP. Kerry

[Kekoa in reply to ritaandscooter1]

I see Amber Flaherty locally at Cancer and Blood Specialists of Arizona at 11209 N Tatum Blvd, Suite B200Phoenix, AZ 85028.

She follows my blood numbers and treats under the direction of my specialist in Michigan. She is wonderful!

[ritaandscooter1 in reply to Kekoa]

Thank you so much for the contact!!! Do you know if this facility has an infusion center for phlebtomys and more importantly do they use a smaller needle (20 gauge upon request?) Thanks again. Kerry

[Kekoa in reply to ritaandscooter1]

Their website says they have indie infusion therapy. I will check about the needle size.

Screen shot from their website.

[Kekoa in reply to Kekoa]

Don't know where indie came from...

[ritaandscooter1 in reply to Kekoa]

I'm not sure what indie infusion is but will give these people a call and inquire about the flexibility of phlebotomy needle size. Doesn't sound like you have needed a phlebotomy? Thank you so much for the information. Take care. Kerry

[EPguy in reply to ritaandscooter1]

I just saw again this post. I recall you reduced PEG to 22.5 a while ago. Even at that very low dose, still you could not tolerate it. Shows how variable our responses are.

It seems all your bloods are good with just occasional HCT fix needed. Glad you're feeling well with current treatments.

[ritaandscooter1 in reply to EPguy]

Yes, I started out with PEG with the standard dose of 45mcg and my liver enzymes (ALT) shot through the roof within 2 months. My hematologist then reduced this to 22.5 which solved the ALT problems but I still was having occasional brain fog, slight depression or emotional problems (never had this problem before) and just not feeling that great. My Platelets and white blood cells came down slightly and very slowly and needed a phlebotomy after 4 months. After talking to my MPN specialist at the Rochester Mayo, he recommended 2 baby aspirin a day with phlebotomy as needed. Each one of us has completely different responses to these drugs and varying levels of health risks or accompanying health problems. I've had PV for 17 years (61 now), am low risk for clotting/no family history, have no other health problems, workout intensely daily for years, and have CBC numbers that have been stable or stably high for years (haven't changed). The only symptoms I have from this disease is iron deficiency which has not been debilitating. We are all different. The low PEG dose was not worth the accompanying symptoms and was affecting my quality of life. This disease does not have a known cure unfortunately (a few go into remission) and the disease started to manage me not me managing the disease while on PEG. Quality of life suffered and everyday was impacted.....not worth it for me at this time in my life. I wish you well on your journey with figuring out what works for you. Kerry

[hunter5582]

Hello and welcome to the forum. Glad you found your way here. This is a good place to be.

Glad to hear that you are tolerating hydroxycarbamide (hydroxyurea - HU) without too much trouble. You are a bit on the young side to be on HU due to the potential risks of long-term use. I am wondering if your hematologist discussed using HU in the short term to get a rapid response and then later switching to another medication. In addition, has your hematologist discussed the use of venesections to reduce the erythrocytosis? Keeping HCT<42/43% is the key treatment goal in treating PV. It is the most important measure in reducing risk of thrombosis and other PV symptoms. Controlling erythrocytosis is more important than controlling thrombocytosis or leukocytosis in managing PV.

The good news is that there are other options in treating PV if HU proves not to be suitable in the long-term. The interferons (Pegasys and more recently approved Besremi) can be more effective for some of us with PV. There is also Jakavi (ruxolitinib) as an option. I was unable to tolerate HU and it was not effective, requiring venesections every three weeks to control HCT. The venesections eventually made me so iron deficient that the iron deficiency symptoms became more bothersome than the PV symptoms.

We are each different in how our MPNs present and in how we respond to treatment. It is very important to consult with a MPN specialist as most hematologists do not have the KSAs to provide optmnal care for MPNs. If you have not already consulted a MPN Specialist, here is a list.

mpnforum.com/list-hem./

Here are a few resources you may find useful.

mpninfo.org/conferences/202...

legeforeningen.no/contentas...

drugs.com/monograph/hydroxy...

drugs.com/pro/pegasys.html

All the best.

[Mandz12]

Will their be a man specialist in my area were I live. X

[Mandz12]

Mpn specialises near Rotherham

[mhos61 in reply to Mandz12]

I think your nearest MPN Specialist is probably Manchester, Professor Tim Somervaille at The Christie.

You could always consider ‘shared care’ where you share your care between your local haematologist and an MPN Specialist, or just ask for a referral to an MPN Specialist for a ‘second opinion.’

As you’re young and have been placed on hydrea, it would really be beneficial to get the input of an expert on the treatment decision alone. Do you have any autoimmune issues that may have influenced the decision to not offer you Pegasys?

I have recently had a consultation with an MPN Specialist at Guys in London, which is roughly 150 miles away from where I live, and I have now opted for ‘shared care.’

[Mandz12]

I also have Lupus and Raynaulds.x

[mhos61 in reply to Mandz12]

This is possibly the reason your haematologist has been cautious in offering you interferon therapy.

I think this gives you more reason however to have a consultation with an MPN Specialist. You can ask for a referral through your haematologist or GP.

[Mandz12]

Thank you will look into this x