Starting Hydroxy.

[Baimead]

hello, I’m a 50 year old female with ET diagnosed in 2021. Platelets were high at 1500 so was prescribed interferon 135mg. I could only tolerate 9 months after suffering every side effect it could offer! This brought me down to manageable levels, just on aspirin until now. Platelets are at 2000+ so have to take Hydroxy. Is the dosage negotiable? I’d like to get away with as low and slow as I can. What is the lowest dosage please? I’m absolutely terrified of side effects…

[Cat1001954]

well I’m on hydroxy my bone pain itchiness. And fatigue started before I started taking it when I first started nausea was a problem but nothing a ginger biscuit couldn’t help

So good luck

[Mostew]

I was recommended to take hydroxicarbamide 500 every day. Platelets were 1000. I said I would prefer to start every other day , which they agreed to. Platelets decreased quickly but now remain at 500.. I have increased dose to 4 times a week so 16 tablets a month... not made a difference but I'm choosing not to take every day.Does consulta nt feel you are at high risk? Sounds like Platelets are very high . I would discuss with consultant and decide . It is your choice what to do.

I hope you have a team you can trust

[Mostew]

Hopefully hydroxy will agree with you. Drink lots of water I try to replace a negative thought about taking it with one that's positive, like how lucky I am to live in a time when drugs are available if natural alternatives dont work.

[hunter5582]

Sorry to hear about the Pegasys adverse effects. It certainly seems reasonable to try HU at this point given how high your PLTs are. At that level, you are also at significant risk for hemorrhage. You may find that you tolerate HU without issue. The only way to know is to try.

I do not see where you mention the HU dose. Adverse effects are dose-dependant. It may make sense to do as Mostew suggests and start at a lower level to see how you react. You can gradually build to a maximum tolerable level. However, you will not want to tarry too much, particularly if you have experienced symptoms of thrombosis or hemorrhage.

Wishing you success moving forward.

[Baimead in reply to hunter5582]

Thank you. I’m not considered high risk, so have been given some leeway into higher levels but have exceeded those now. I’m under a local consultant and Prof. Harrison. Dosage hasn’t been mentioned yet. I’m very interested to know from Mostew that I have input into the decision. I just want to go to the appointment prepared. Thanks again.

[hunter5582]

You are fortunate to have Dr. Harrison's expertise to guide your case. She is a world-class MPN expert and demonstrates respect and compassion for patients.

You always have input into your dosing regimen. You are the only person who can consent to treatment. The NHS has a commitment to shared decision making that puts the patient in control of their own treatment. We should always be equal partners in making treatment decisions.

Good doctors want to help their patients make good decisions and care about their desired treatment goals and risk tolerance. It helps to go to your appointment prepared and organized. This will help your doctor help you. I go to all appointments with a written agenda. It includes my treatment goals, treatment preferences, issues/questions, and treatment decisions/questions. This is the format.

Treatment goals:

Define for your doctor what your priorities are. Can be very specific at times.

Treatment Approach

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers about all the interventions you use.

Updates/Issues/Questions

Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what is going on, particularly with specialists. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment.

Treatment

Review all treatment options – let the doc know what you are doing now and seek input about what to do next. Ask about ALL options, not just the one the doc recommends. Ask the doctor why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your risk tolerance and what risks you prefer to take to achieve your treatment goals.

[Anag]

dear Baimead!

I am very sorry about the side effects and I know how they can be within interferon! But, the most important thing with illness, especially with is to let go of the fear. Fear and stress raises our platelets quickly! It is understandable “easier said than done”!

There are three main treatments for ET and all three of them caused me terrible side effects. Nevertheless, I have a couple of very good doctors who assist me on keeping my body as free from inflammation as possible and I now have a new lease on life. This will be long, but please take time to read and understand it.

In the seven years since my diagnosis which was 10 years late, I have been studying everything possible to get my body back on track. I am on the Autoimmune Paleo diet since then. I have rid my home and body of every chemical possible. The transition took about a few months.

Clean foods, organic shampoo, which I use as hand soap and cleaning my marble floor,pure olive oil as a skin moisturizer, organic everything possible, I clean my house and everything with vinegar and bicarbonate of soda. I wash my clothes with Wild chestnuts that fall on the street. I chopped them up and dry them and then put them in water overnight and I have soap. Within 6 to 7 months, my depression, 33 years of eczema, sleeplessness, acne on my back, chronic colds and nasal infections, body odor, bad constipation, and diarrhea, were gone for good. After three years, I was down 25 kg.

I took a tablespoon of Norsan omega-3 fish, oil a.m. and p.m. to reduce inflammation, only natural vitamins and minerals! A very good magnesium with seven magnesiums in it. Zinc, digestive enzymes, a natural supplement, which has the three B12‘s in it. 10,000 IUs vitamin D daily. Or three tablets of with 20,000 per tablet on Sundays.

Switching to bioidentical thyroid hormone slowly after five years I was able to reduce the intake of thyroid hormone by 65% and my thyroid became better. All 35 amalgam fillings were taken out and replaced with ceramic inlays over a period of two years. I slowly started removing heavy metals from my body and also parasites which we all have in the industrial world. Produced food does not come into my home. I did regular blood tests to make sure that my levels were good. For example, don’t always look into the norm range most laboratory say the norm range for vitamin D is 20 to 100 but anything under 50 is deficient. Especially we as cancer patients should have between 50 and 80.

another very important point is liver cleansing!!!!! There are so many ways to do this! Taking bitters, liver supporting enzymes, what me the best and quick is a coffee enema. Twice a week. You can find directions for this in Internet.

my ET started at 42 perhaps it was visible earlier. I am now and I’m happier, strong stronger and healthier than at 42. I just started a woman’s sisterhood, organization, which does charity and we are flying high.

another important point is trying to go against the damage that medication is causing. Look into drugs.com and read up on the nutritional deficiencies caused by whatever medication you’re taking. Or just type in the name of your drug and “nutritional deficiencies caused”. Then you take the supplements to counteract that. simple.

I had to stop HU because it caused me severe neurological problems. Even at the lowest dosage. I stopped the anagrelide because it causes me heart problems. The interfering worked amazingly, but I was suffering from inflammation in my hands, neck, and feet where I could hardly use my extremities or lift my head, although it worked wonderfully. Right now a tiny bit of anagrelide has been keeping my thrombocytes down while they have slowly risen over the past nine months. My plan is to start the interferon in March on Lowest dosage and stay there until the platelets slowly go down. My plan is to stay on one single capsule of anagrelide if necessary. And it is OK if my platelets remain at 400-500? The key is finding a balance fine-tuning is so important for some of us who are sensitives!

therefore, please do not beat yourself and don’t be afraid of anything. 🙂😃👍 Breath fresh air, drink clean water 3liters per day. No no alcohol no , try to take walks in nature. Living in a clean, uncluttered environment brings good energy. Getting rid of clutter was a huge one for me. I don’t think I ever ever read a post about clutter. Oh well. It’s also important to have good positive people in our lives and to stay away from people who don’t make us feel good or drag us down in any way.

Rome was not built a day and it took a lot in a long time to get us sick. All these methods for strengthening us work over months and eventually years. Important is to start with what you eat and drinkand usually within a month or two you should be feeling better and stronger

it is also necessary when you take supplements. For example, supplements that clean the liver.Should not be taken with her right after your medication. Therefore check on the half-life of your medication. anagrelide has a half-life of 1.3 hours. So I cleansing hours after I took my medication so as not to interfere with its effectiveness!!! 😉

Hope to have helped! Anag 🙏

[Wyebird in reply to Anag]

Many many thanks for your post. I have a friend who can’t tolerate medication so follows a similar eating strategy. I truly think what you have done is inspiring and should be highlighted on social media. Meanwhile I’m battling to eat Kefir every morning to aid suppressing my reflux lol.

[Hopetohelp in reply to Anag]

What a wonderful informative post. Thanks for helping all of us. Also very thought provoking post about the clutter

[MotanulLink in reply to Anag]

Amazing post and you are so encouraging and everything you said makes sense 🙏🏻

Nature has everything out there for us we just need a nudge to remember it. Are you guided by a naturopath doctor or just did your own research?

My wife did all the research and is trying really hard to keep me on this path.

I wish you good luck and please spread the word out there as everyone should be aware of all the things that can be done apart from medication.

Keep up with your good work 👍🌸

[Anag in reply to MotanulLink]

Yes! I am actually with two functional doctors. I was studying all kinds of medicine that have to do with me for about two years between 20 and 40 hours a week. At the same time, trying everything out on my body also and my husband and my daughter we all benefited and so did many of my friends.

it’s a state of mind. It’s not enough if one person tells you. you have to read and understand; be prepared to take the step and stick with it. The Dietician told me to go cold turkey for five weeks off greens, milk, products, sheets, sugar: on the AIP diet. The first 3 weeks were the toughest until my body forgot sugar and went into ketosis burning fats instead for energy. We’ve been told for decades that fats are bad for us and that’s not true!! But we are only talking about eating good fats with lots of omega-3 and a very low omega , that is no cheap oils. Period!! Sunflower oil and its brothers and sisters all fire up the immune system which is really bad for someone who has inflammation. That would mean no fish and chips. 😣 no crisps. Flax oil is also a great source of omega-3.

We now go through one bottle of best Greek olive oil five generations organic per week for three people. For Greeks, it’s actually below the norm which is about 23 L per person per year. We also eat grass fed organic butter.

I wish you good luck!

[SpendyWendy in reply to Anag]

brilliant post! I’m so with you especially with the supplements, I take Vit B12, ( monthly injection) Magnesium and Vit D daily. Never felt better. I’m an ET patient Jak2. Only on aspirin off treatment HU since Aug 24. Platelets 520. Hoping to stay off treatment until my platelets elevate more.

[Anag in reply to SpendyWendy]

if you are only on aspirin with 520 then you’re far away from having to need medication. This is the case for most people. I kept increasing my medication and the goal was to stay below 750 because I couldn’t handle the side effects. At that point I was taking between four and five Anagrelides daily. Besremi was the first thing that brought me in normal range and as soon as I was in normal range, all the side effects started. Now that I’m on an hour light again I went from one capsule/ day very slowly up to 2 to 3 daily. My thrombocytes are now stable around 650. I have made an appointment to start on. Besremi again at the end of March and I will stay on 50 µg a day, which is the lowest dose over a long period of time with the goal of reducing the anagrelide, which is truly causing heart problems again. We have to be proactive clever trying things out. It needs also a lot of courage and patience to try different things over time.

[SpendyWendy in reply to Anag]

thank you Anag for your encouragement. I hope you respond well to your future treatment regime with the minimum of issues. Take good care

[dnaleor]

I think your hematologist will calculate your dosage. I have been using Hydroxy for several years. Never had side effects. You know only after taking. Keep well ❤️

[DoubleF79]

Hi. I tried interferon with no results so swapped to Hydroxy after 6 months. Tolerating it absolutely fine. I’m 45. Only side effect is more noticeable hair loss but it’s not falling out in clumps so that’s good. I’m on 20 tablets a week but that’s been increased over 4 years & everything perfectly stable. Please try not to worry. Talk it over with your consultant. All the best.

[Anag in reply to DoubleF79]

Besremi started working/really kicked in at the 8 month point and my thrombocytes plummeted. I thought of stopping but myMPN specialist said it could take up to a year till the body fully responds and that I needed patience. She was right. 🙂 the interferons are the only way to really get the cancer down not just the platelets. I stopped the Besremi beginning last June and the interferon is still working, platelets climbing very slowly. I am on 1/2 the anagrelide with less platelets still. I’m restarting end of March.

[RazB]

Hi Baimead, sorry to hear about your experience with Interferon, I can empathise as I had the same. I ticked every box on the “side effects” list, horrendous. I tried it after many years on Hydroxy but was so ill I was told to stop after 2 months so I went back to Hydroxy! I also have ET and have been under Prof Harrison for 18 years. At the beginning I started on Hydroxy slowly and did experience side effects for a while but stuck with it and soon felt much better. I now take 18 per week which is the highest dose I can tolerate. My platelets sit at about 550. Prof Harrison and her team will lead you through starting your treatment and will support you all the way. As Mostew says lots of water and positivity are both essential. And while you are starting your new regime be kind to yourself, rest and eat well. Xx

[Anag in reply to RazB]

Excellent reply. 🙂

[Baimead in reply to RazB]

Thank you.

[Wyebird]

hi, I’m struggling to understand why you were put on such a high dose of interferon.

The normal starting dose I believe is 45mg!

Maybe if you had been started with that you could have tolerated the side effects then it could have slowly been increased. I took 90mg approximately every 10 days and it was months before the side effects went. Hopefully hydroxi will suit you but please if in the future you have to think about Interferon again don’t dismiss it if it can be introduced slowly. After 4 yrs I’m still stretching the distance between each jab. Just stretched it to 90mg every 6 weeks

[Baimead in reply to Wyebird]

I think my consultant panicked and put me on a high dose. It was no wonder I reacted… It was only after referral to Prof Harrison & her team that I was taken off interferon & just 2x aspirin. 3 years of normality after that.

[Wyebird in reply to Baimead]

You are in safe hands. I’m under her also.

[Anag in reply to Baimead]

I’ve had several panicking or panic causing hematologists. I run away from them. We need kindness and know-how. I was speaking to one trying to rationalize how to have better outcomes and life quality. She stared me in the face, lowered her head saying, “You have a VERY HEAVY ILLNESS, Mrs. ____ “. I was shaken! needed 3 months to get over those words (5 yrs ago). I’m doing beautifully without her. 😃

[RazB in reply to Anag]

That’s very interesting re what your old consultant said to you. My first consultant said completely the opposite to me! My platelets were on the rise and were at about 1100, I was trying to explain how I was feeling, he said “you are not ill, I have patients here who are much iller than you” it was such a strange thing to say! I had been asking for information on MPNs which he didn’t have. He literally knew nothing! After that appointment I sought a 2nd opinion and lucked out with Prof Harrison. X

[Luvlyhubby]

Hubby (now 74)diagnosed Sept 2023 with PV & Jak2 (NO symptoms, just a red face) Started on Hydroxyurea had to be adjusted a few times but now just takes 500mg daily for 7 days (takes b4 going to bed). Only side affect is his hair is thinning slightly,but otherwise exactly as he was 20yrs ago-sleeps well, great appetite, lots energy (fingers 🤞 it carries on🙏). As with any treatment things 'could' happen but not always! Really wish you well, as it is worrying (tho my hubby never does!)

[Ebot]

Hi there. I was on Hydroxy for about five years. It was a miracle worker for me especially in bringing my platelet count down. And it was transformative in terms of my quality of life. You have to be cautious about your relationship with the sun - but my skin looks so much better and I’m beginning to feel a little superior to my crows feet, sun worshipping friends :))) I had no side effects.

If you’re under the team at Guy’s they will go slow and cautious on the drug dosage. And they will expect to hear your voice in any treatment proposals. At the same time I’d really take their guidance. They know what they’re about and your platelets are dangerously high. Wishing you all the best.

[Lasbrisas1]

After 2 years of Hydroxyurea my beautiful was falling like crazy, ...

Specialist took me off it in Nov last, been taking nothing, Then last week she got the ok to put me on INTERFERON, I said I do not want to Inject everyday... now just waiting for the next step.

I sprinkle Cayenne Pepper on every food , this helps me with downing my PLATELETS ...

Good Luck...

[RoundTheWorld in reply to Lasbrisas1]

Lasbrisas - Interferon injections aren't every day - Pegasys is typically weekly and Besremi once every two weeks (with potential to make it less frequent once you're at target). You still may not want to have injections but thought I'd mention in case you thought the schedule was more onerous than it is.

[Lasbrisas1 in reply to RoundTheWorld]

Specialist never told me this, Many Thanks

[harev in reply to Lasbrisas1]

You do not inject every day. Every other week. After awhile once a month. I am on Besremi and working!!!!

[Lasbrisas1 in reply to harev]

Thank you...

[Lasbrisas1]

That was HAIR FALLING sorry.

[StigerP]

Hi Baimead. I started on 500mg (1 pill) Hydroxycarbamide per day, 7 Days a week, March 22, but after 3 months, with no side effects, platelets were still holding at approx 800. My Haematologist then put me on 500mg Monday to Thursday, 1000mg Friday to Sunday and platelets reduced to approx 400 and holding. Only side effects I have noticed are tiredness and on occasions aching limbs, especially my thighs. However, lately I have also been experiencing swelling, heat and discomfort in my toes. I am waiting for a call back from my Macmillan Nurse to advise. When I was first diagnosed with MPN ET, with 3 mutations by my local hospital Haematologist, I asked for a second opinion and was referred to one of the countrys' top specialist at Leicester Hospital. She advised that I should have been on Interferon from the start of treatment. However, having researched all I could find about Interferon, I made the decision to stay on Hydroxycarbamide. Since those early days, my Allelle Burden has risen and I am being offered to change to Interferon, but I am still resisting. My next blood tests are April. I will wait to see where I am then. I also understand there is a World shortage of Interferon, so, I might not have a choice. Will let you know.

[Bluetop]

I PV and been on hydrxy for 9 years. My dose started at 500mg/day, went as high as 1000mg/day and now is tweaked as required but mostly between 5500mg-6000mg /week. The only obvious side effect has been brittle nails.

[Lambo1]

Greetings, Baimead. Sorry to hear that interferon did not work for you. Everybody is different, of course, but my experience on hydroxyurea has been very good. I am a 68 year old female and have been on it for eight years. I started on 500 mgs daily, but like you I wanted to get on the lowest dose possible. Over time I was able to cut back to every other day, and now only taking it three times a week. My reductions in dose were in consultation with my hematologist and my platelets have been well monitored throughout. I have been told this as low of a dose possible. I have had no side effects other than initially my hair got curlier - now it is thinning but age could be contributing to that. I hope your experience is as good as mine has been.

[BrightNorka in reply to Lambo1]

Hi Lambo,

I am fighting the dose reduction battle with my heamtologist.

So far my dose went down from 500mg daily to 500 for 6 days, then for five days per week.

I started the dose reduction by myself when my platelets went down to 232, and he was very reluctant to do the next step of reduction from 6 to 5 days .

My latest count is 262, after beenng on 5 days weekly for past three mounts.

How long did your reduction in dose from 5 to 3 days per week take?

What was your platelets number established at with 3 days per week dose?

My next appointment is in two days and I am wondering if I should insist for further reduction, and for more frequent testing.

Thank you in advance.

[Lambo1 in reply to BrightNorka]

My dose was reduced to 3 times a week in 2021 and my platelet count ranged from 270-380 at that time. They continue to fluctuate between 320-400. The literature says under 600 is fine; my hematologist says 400 is a good goal. Your count is nice and low. How often are you getting blood work? Ask your doc why the reluctance to reduce your dose and in his opinion, when can you if your count stays low. Are you having any side effects? If not, then on the other hand there is no rush to reduce.

[BrightNorka in reply to Lambo1]

My doctor says for CBC every three months should be enough, but that was before I started fighting for dose reduction.Besides the slight hair loss, I have no HU side effects.

My WBC and RBC counts were also quite reduced, and various RBC parameters were shifted. All the trends, which were not looked at by my doctor, were defenatly heading out and being for a whie out of the range.

Even without side effects, I would like to aim for the lowest HU dose with enough therapeutic effect. Alther all it is a chemotherapy drug with a low therapeutic index and it impacts all cells.

Thanks, stay positive and healthy!

[LeoTravels]

Hi from Sydney,

I could not tolerate Interferon either, however I tolerate Hydrea very well with no symptoms. I have been taking Hydrea for 3 years now and we vary the dose depending on how troublesome the platelets are. I started one tablet per day ((500 mg) and generally you will get an initial drop in the number ( 2000 is very high) and adjust it from there. I currently take 3x per day (1500 mg) with absolutely no symptoms. I was worried about losing hair and nausea.

Dont be scared, there are many of us out here to prove it is OK. You will only know once you start taking it of course.

All the best to you xx

[Codybear1499]

Don’t be I was prescribed this and quality of life is more important to me so you have a choice

[Andyls]

You will notice that each of us responds differently to hydrea, so your doctor will titrate your dose to your response. Many doctors start at one table per day and test blood at regular intervals. If you are responding well (platelets, moving in the right direction and other counts are in normal range) they will keep you at that dose. If your counts, especially your platelets, are stubborn, they will increase the dose. If indicated, they will decrease the dose. In most cases, they will find a dose where your counts are stable and any side effects are minimal. In my case, it took about 14 months to finalize my dose at 4 tablets per week. Today, my CBCs have been stable for seven years, and I am tested every six months. In the beginning, I was tested every two to four weeks, then every six weeks, then every three months. I felt some slight nausea at the start, but that may have been anxiety. At any rate, it was resolved by eating a ginger biscuit. Now I feel no side effects. I do watch my sun exposure and stay well-hydrated. Good luck