Krissy

[10061950]

I am a 71 year old woman and have been told that I will have to be on my chemotherapy tablets for life. At the moment they are trying different doses until they get the correct reading. My reading, originally was 1000+ but now it is 315 but my dosage is 4 days @ 2 tablets and 3 @ 3 tablets. Has anybody else been told to take similar dosage? Also I see specialist nurse every 4 week should I be seeing a haematologist?

[Otterfield]

Hello Krissy and welcome. From what you say I assume that your diagnosis is Essential Thrombocytosis and that your medication is Hydroxycarbamide. The dose you mention is normal in my experience, but do mention all side effects to your nurse - mouth ulcers in particular can be troublesome and I know that others here have had other side effects.

Please don't worry about being on it for life. If it suits you, it's a well established and effective treatment. There are alternatives though and perhaps you could request an appointment with your haematologist to discuss this and anything else. Having said that, my experience is that specialist nurses are worth their weight in gold and will always seek guidance from the consultant if something doesn't look right.

[10061950 in reply to Otterfield]

Thanks for your response. I’m so glad that I’m able to ask other people with the same diagnosis.I don’t feel so alone now thanks again

[Whitegate in reply to Otterfield]

My wife is on her third week of Hydroxycarbamide aimed at reducing the platelet level from 1180 to the norm. This correspondence is very useful - Thank you all. // Is there any info on the immunosuppressive effect of the treatment?

[Rem31]

When I first started on Hydroxycarbamide and whenever my dose is amended I’ve been monitored every few weeks by a CNS (clinical nurse specialist) who works within a team of specialist haematologists. It can take a little while for dose and target blood counts to settle and monitoring by a CNS during that time has worked well for me.

No two patients are the same so some may need to take more, or less, than others depending on their target levels.

It does take a while to get the measure and feel confident about those treating us. Your CNS should be able to tell you how often you’ll be scheduled to see your haematologist.

[10061950 in reply to Rem31]

Thanks for your response it helps to be reassured that I’m not on my own .

[Whitehair51]

Hi Krissy, my count started at. 1.1 million and I was on 3 capsules a day. I had some side effects and started losing my hair. When my count went down to 200,000, my hematologist said that's good, we'll keep you there. But I argued that my count could go higher, that I felt like I was taking poison. So he agreed and I got down to one capsule a day with my count at 315,000. I was diagnosed with ET 14 months ago and I'm70 years old.

[Bridie123]

Hi krissy, I have ET , for five years or so now and the dosage has been changed many times, currently three pills five days and two Saturday and Sunday. Side effects come and go. Take care and stay on this website, it is so helpful and comforting especially as some people here can explain jargon. ( not me though 😉 )

[Virginia91]

Hello, i live in Norway and there are no MPN spesialists here or spesialist nurses.

I am 68 yrs. old and was diagnosed with ET + Jak2 ca. 2 years ago. Months of extreme anxiety followed but that's more or less better now.

At present I am on 2 x 500 mg. Hydroxyura (HU) 4 days a week and on 1X 500 mg HU 3 days a week. My platelets fluctuate between 390 and 490. I suffer from fatigue some days, and sometimes pruritus but mainly live a normal life.

I see the haematologist about every 3 months. They do not like to be asked too many questions which is a bit frightening for me. My GP is forthcoming but says she is not an expert on this blood condition.

Exercise and less sugar makes me feel better. I'm not giving up chocolate! I do not drink alcohol at all.

I also take blood pressure meds. blood thinners (plavix) and a non-statin cholesterol med.

I find this forum incredibly helpful.If my situation gets worse I will consider looking further afield for a MPN spesialist for advice.

Most of us will live a near normal lifespan and die with it and not from it.

Hang in there and give yourself time to adjust.

💚

[piggie50]

Hi Krissy,I am 67 and have been on Hydroxicarbamide for 8 years. The dose has varied over that time but for the last 3 years, one per day and two at the weekend. It suits me very well at controlling platelets. I have no side effects at all.

Judy

[Hopetohelp]

I think the norm is to see a haematologist approx every 3 months so worth asking your nurse next time. Good luck

[Peter18]

Hello Krissy, Welcome and please accept my best wishes as you adjust to your new regime. I'm 68 and have been on Hydroxy for PV & ET for nearly 4 years (since March 2018). The dose has slightly increased from the initial one and now stands at 2 capsules for 4 days and 1 capsule for 3 days each week. I have a blood test every 3 months followed by a brief telephone consultation with the Haemotologist. Incidentally, I tend to agree with Otterfield's experience of the specialist nurses!

[Cja1956]

I was diagnosed with ET Jak2 at age 52 in 2008 and have taken chemo pills every day since. I’ve been on HU, anagrelide, Ruxo, and Fedratinib at different times and dosages over the years. Finding the right combination of pills is a difficult process because everyone’s disease is a little different and our reactions to the medications also vary. To borrow from Otterfield, I wouldn’t worry too much about taking pills for life. We all do it.

[hunter5582]

Hello and welcome to the forum.

You should definitely arrange to see a hematologist, but not just any hematologist. MPNs are rare disorders. Most hematologists and mid-tier providers do not have the KSAs to provide optimal MPN care. Anyone with a MPN needs to have a MPN Specialist as part of their care team. The MPN Specialist can either be your direct care provider if they are close enough to you or can be a consultant who advises you and your regular (local) hematology care team. Here is a list of MPN Specialists.

mpnforum.com/list-hem./

Regarding your dose of what sounds like hydroxycarbamide (hydroxyurea), your dose is fairly high, but not unusually so given your platelet levels. Your care team should have reviewed your cytoreduction target with you. Some docs use "normal" 450/400, Others use 600. silvermpncenter.weill.corne...

Some MPN experts note that there is no evidence that there is any improved benefit regarding risk of thrombosis whether your platelets are below 600 or 400. With HU or any other med you always have to weigh the benefits vs the risks/adverse effects. HU is a toxic medication that does have intrinsic risks, including specific risks associated with long-term use. Deciding whether the benefits are worth the risks depends on what symptoms you have experienced, what your treatment goals are, what risks you are willing to take, and what adverse effects you actually experience.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

There are other treatment options for ET and the other MPNs. HU and PEGylated Interferons are both considered first-line treatment options for ET and PV. Jakavi and anagrelide are second-line treatment options. Cytoreduction can be achieved with all of these meds. We each respond differently to each of them. You heave heard form others that some tolerate HU and benefit from it. Not everyone can. I experienced toxicity even at very low doses. I have responded very well to PEG without any adverse effects. Not everyone responds as well to PEG as I have. We are each different on how our MPN presents and in how we respond to treatment options. Here are a couple of resources on this topic.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Educated and assertive patients receive higher quality care. Passive patients do not. We each need individualized treatment informed by a MPN Specialist. We each need to educate ourselves to make good decisions about our treatment. We need to advocate for ourselves regarding what our treatment goals are, what risks we are willing to take, and what our treatment preferences are.

All the best to you.

[Tilly_Rose]

I am also 71 and take Hydroxycarbamide I take 10 a week platelets are at 360 and so far I have been okay I have ET JAK2 diagnosed in June 2019 I saw a consultant in the hospital last month but usually have phone calls every 3 months it works fine.

Hope all goes well with you x