New to HU

[Charlieapple2018]

Hi I’m starting HU tomorrow. I’ve been taking Pegasys for 9 months with limited results. I’ve got a platelet count of 1900 and amongst other symptoms erythromylalgia in my fingers and toes. How long will HU take to kick in and stop all this nerve pain? And will resting instead of going into work help it work quicker. I’m in pain, but feel guilty not going in as I’ve been told HU is just a light chemotherapy. Your thoughts and opinions would be greatly appreciated.

[ggrana]

Hi charlieapple, are you on a baby aspirin?? My counts were like yours and as you did , I was on Pegasus for 6 months and my numbers didn’t budge. As soon as I went on hydrox they lowered . I’m on 3 pills a day and my counts are in the 600-800 range.(I have them checked every month ). It works pretty quick . But the aspirin helped me with my fingers and itching symptoms .

[Charlieapple2018 in reply to ggrana]

Thanks for your reply, my counts are 1300-1900 so I’ve developed aVon Willebrands and can’t take aspirin until my counts are under 1000. I’m glad to know it worked quickly for you, fingers crossed it does for me.

[ggrana in reply to Charlieapple2018]

You’ll be in my prayers. Good luck , keep me posted I’d love to know how you do.

[Charlieapple2018 in reply to ggrana]

Thank you, hope you’re well. X

[Bippytat in reply to ggrana]

Bear in mind HU will lead to secondary cancer

This reply has been edited by Maz. Please note: the advice stated in the information leaflet is that: skin cancer has also been reported in patients receiving long term Hydroxycarbamide. And: if you receive long-term treatment with Hydroxycarbamide leukaemia may develop, to what extent this is due to your underlying disease or to the treatment with Hydroxycarbamide is presently unknown.

[AndyT in reply to Bippytat]

What do you mean by that Bippytat? Loads of people are on HU and it has worked well and safely for them for many years. On what grounds do you say it will lead to secondary cancer..!?

[ggrana in reply to AndyT]

Ive never heard of it doing that either.

[Bippytat in reply to AndyT]

I was on HU for 6 years which commenced to cause problems. After much research and having met two MPN patients who had been on HU for 8 years both had developed skin cancers.

If you research the appropriate sites you'll note it is mentioned that a secondary cancer will develop. Edited by Maz: it may not will.

Does hydroxyurea cause skin cancer?

Hydroxyurea can cause a severe decrease in the number of blood cells in your bone marrow. ... Hydroxyurea may increase the risk that you will develop other cancers, including skin cancer.Apr 15, 2018

medlineplus.gov/medlineplus... › druginfo › meds

Hydroxyurea: MedlinePlus Drug Information

Hydroxyurea Toxicity - StatPearls - NCBI Bookshelf

by S Jinna - ‎2019 - ‎Related articles

Apr 4, 2019 - Hematology-Oncology Long-term use of hydroxyurea can cause skin cancer; cutaneous carcinomas are a severe side effect of hydroxyurea. [14] This can occur after several years of treatment with hydroxyurea. Patients on HU treatment need to be monitored and follow up for the long term.

The list goes on and on and if you read up more on Hydrea there are patients who have had severe problems with the esophagus.

I note very few MPN patients are avid researchers and rely on feed back from other MPN patients.

Every individual has different reactions to chemicals we inject or swallow.

My best advice is to study your own blood count and get to understand each one of them, then go armed to your Hematologist and ask lots of questions! Your the one taking the medication not the specialist. HU is the choice most use cause it is cheap!!

Politics. Why would you ingest a chemo based drug when the following non chemo drug is available?

Is jakafi a chemo drug?

Jakafi is the first and only medicine approved by the Food and Drug Administration (FDA) for the treatment of these patients. Jakafi is not chemotherapy. It is a targeted treatment that works to help keep the production of blood cells under control.

Ruxolitinib for the Treatment of Essential Thrombocythemia

Gunawan, Arief1; Harrington, Patrick1; Garcia-Curto, Natalia1; McLornan, Donal1,2; Radia, Deepti1; Harrison, Claire1

HemaSphere: August 2018 - Volume 2 - Issue 4 - p e56

doi: 10.1097/HS9.0000000000000056

Review Article

I suggest you study what you ingest and not accept the fact that it is doing you good. What happens down the road when you have progressed to the next stage of PV or MF?

My intention is not to scare you, however the brutal facts are what one needs to investigate!

All the best like you said your new at it.

[AndyT in reply to Bippytat]

There’s a big difference between ‘can’ and ‘may’ in these articles and your use of ‘will’.

I accept that the risk is there but the fact you met two people with skin cancer doesn’t prove anything - I know several people with skin cancer who’ve never been anywhere near HU..!

[Bippytat in reply to AndyT]

Why the tangent Andy? This is an MPN forum not one for healthy people who don’t suffer from MPNI. The findings stated the MPN patients were on Hydrea for years and developed a secondary cancer called (Skin cancer). If it doesn’t prove anything why were the research papers written???

Likewise don’t waste my time, you wanted hard core facts. I backed them up with factual findings. You asked me to back the information up with factual evidence.

End of discussion.

[mhos61 in reply to Bippytat]

You say with reference to hydrea;

‘Will lead to secondary cancer.’ ‘ A secondary cancer will develop.’

The use of WILL is misleading. You should choose your words very carefully. There are people on this drug who may have nervous dispositions, and potentially stop treatment.

[Bippytat in reply to mhos61]

Please spare me the trauma the findings are factual not mine.

[mhos61 in reply to Bippytat]

It’s the word ‘will’ that disturbs me. That’s all!

Can you point me to the sentence in any article that uses ‘will.’

[vectorspace in reply to Bippytat]

I have a problem with the use of wil. Nothing is 100% . No researcher would claim that smoking will cause cancer. It increases your chance of getting cancer but as we know there are smokers who live to 105.

[Bippytat in reply to ggrana]

May I ask what dose pegasys were you on?

[Bippytat in reply to ggrana]

Are you on qty 3 (500mg a day?)

[Charlieapple2018 in reply to Bippytat]

I am on 135mg of Pegasys weekly, moving to 180mg in the hope that it will kick in and do the job I need it too. From what I’ve read it can take over a year to kick in and I live in hope I can get too remission. However I am very symptomatic with bleeding ocular migraines and a lot of nerve pain.

[Charlieapple2018 in reply to Charlieapple2018]

My MPN Specialist and a second ET Specialist have consulted and suggest a combination to bring down my counts before I die of haemorrhage or stroke, so yes the is a risk on HU, but then short term benefits are worth it .

[Charlieapple2018 in reply to Charlieapple2018]

Your replies would be very upsetting if I wasn’t well read and my own advocate for this condition. And nor did you answer the question I asked which wasn’t should I take this, it’s more about how quickly will I get rid of the nerve pain because that’s really the most debilitating at this point.

[Charlieapple2018 in reply to Charlieapple2018]

Thank you for the suggestion of Jakifi, but I have ET and I’m Calr+ so it won’t be prescribed for me.

[Bippytat in reply to Charlieapple2018]

Even a specialist could not answer the question you are seeking. Everyone reacts differently to a drug prescribed! If you have the nerve pain why have you not been prescribed Targin 10/5mg or Targin 5/2,5mg?I wish you the best.

[Bippytat in reply to Charlieapple2018]

Only you will know as you will be taking the drug.

[Bippytat in reply to Charlieapple2018]

When I commenced pegasys 3 weeks later platelets went from 750 to 250.

Unfortunately a severely sprained ankle lead to taking prednisone which in turn throws the entire blood count in disarray and now about to start again on 135mg Pegasys.

[Charlieapple2018 in reply to Bippytat]

I’m going to give you the benefit of the doubt and assume English is not your first language rather than you have deliberately set out to upset and worry someone looking for support and other people’s shared experience before starting a much needed treatment .

[Charlieapple2018 in reply to Charlieapple2018]

The whole point it Pegasys isn’t currently working for me so I need to try something new. I don’t know the pain killers you suggested, I’m from the uk and we tend to use generic names for pain killers.

[Bippytat in reply to Charlieapple2018]

Forget the discussion Charlie if your so easily offended. There was none meant neither am I looking for a sympathy vote which you appear to be.

Targin is generic for oxycodone hydrochloride and naloxone hydrochloride .

Never mind I can see your not on the same wave length. Chose your words carefully ,I assume your not a scholar as you won’t die from ET.

Again I wish you all the best.

Kindly don’t waste my time. I gave you hard core facts from medical findings.

End of discussion.

[Charlieapple2018 in reply to Bippytat]

So you’re the reason this support group is now empty? Your kind lovely, supportive, empathetic approach? As previously stated, I’m not looking for your judgment on my medical regime. I’m looking for other people’s experiences in my shoes.

[Hidden in reply to Charlieapple2018]

Please don’t let people like this get to you, there seem to be some posters on here think that they know more than MPN specialists!

[Hidden in reply to Bippytat]

I don’t think you are a scholar either, since you wrote ‘your not a scholar’ instead of you’re!

[Bippytat in reply to Hidden]

I

[Hidden in reply to Bippytat]

!!

[Hidden in reply to Hidden]

You’re command of English isn’t even basic.......note you’re

[Bippytat in reply to Hidden]

Try trolling on facebook its full of it. Don’t you understand what End of discussion means.

[Chemo01 in reply to Bippytat]

What a lovely individual you are!!!

[ggrana in reply to Bippytat]

Yes Bippytat i’m on three a day. I was up to the strongest dose possible of Pegasus and still no change in counts. I think I should’ve stayed on a bit longer like many people say it can take up to a year to work for whatever reason but my mpn specialist in NY didn’t want me to.

[mhos61]

For me, hydrea brought my platelets down very quickly. Everyone is different of course. I have had no problems with this drug. It certainly didn’t affect my work.

Not sure about the nerve pain, as aspirin is of great benefit for erythromyalgia. And of course presently, you can’t take that. Once your platelet count has been significantly addressed, you should hopefully be able to commence aspirin again.

Wishing you well.

Mary x

[lindyloulou]

Hi there, I am ET CALR positive.

I took Pegasys for well over a year before it kicked in to normal platelet ranges. The only thing that helps my erythromyalgia is aspirin.

My Pegasys dose has gone from 180 to 90 at this point after almost 2 years.

I wish you well and hope your symptoms are relieved very soon.

Not sure about the not working making things work any quicker, that’s perhaps a question for your haem,

Good luck and keep us posted about how things are going. Lynn.

[amhann]

Hello charlieapple - I have no experience of pegasys having been on hydroxy from the start + it does seem to be quick at reducing platelets for many people (am guessing with your levels your haem team will be wanting them down sooner rather than later) - in my case the baby aspirin relieved most of my symptoms but I also take a low dose amitriptyline for nerve pain (not ET related) - I hope your symptoms ease up and stabilise soon. (have to say I was pretty ‘gob smacked’ by certain replies to you!! I have found MPNvoice + this forum to be uplifting and supportive - we would all rather not be on these medications, it is a question of risk management + I am sure many on here would agree)

All the best Anne-Marie.

[Phelpsy]

Hi I’ve been on HU 7 years now

2x 500mg for 6 days , & 1 x 500

1 day , platelets were 1,000

I seen results in a few weeks

Now Ive been in the 350 range for over 5 years , with very little side affect ‘s , just eat healthy & drink lots of water ( stay hydrated)

Good luck you will be fine x

[Charlieapple2018]

Thanks for all the constructive comments, it’s useful to hear about other people’s experiences when you start something new.

[Wyebird]

Oh dear Charlieapple1018.

Lots of replies and discussions.

I have Calr ET . Having suffered a stroke 10 years prior to ET diagnosis I couldn’t wait to start HU.

They will start you off on HU slowly and monitor you carefully.

My first week didn’t alter my platelets so the dose was increased 2 a day. After a week I felt slightly better. I continued to improve until I stabilised at about 400.

Yes there are unwanted side affects but I’m afraid you like lots of us have very little choice.

I’m presently on anagrelide and HU.

Your doctors will talk you through every thing.

I think your immediate attention should be bringing down those pesky platelets.

Good luck and keep me posted .

[hunter5582]

It is important to take a calm objective approach to any chemotherapy. They all come with potential risks and benefits. HU is a cytostatic medication that interferes with DNA activity, amongst other things- reducing hematapoeisis. It does so at a cost as it is a toxic substance and due to its low therapeutic index some signs of toxicity (adverse effects) are common at a therapeutic dose (per the NIH).

What you have to do is to compare the benefits of HU (or any medication) to the adverse effects you actually experience. Certainly you have to consider the potential risks as well. HU is teratogenic, mutagenic and carcinogenic and carries those risks. Having said that, compare those risks to the certainty of the symptoms you are already experiencing. Given what you are facing, doing nothing does not sound like a viable option.

There are other options you can discuss with your doc. Then you can compare the risk-benefit profile of each of your choices.

FYI - I am one of the people who is HU-intolerant. Toxic effects even at very low doses. That is how my body reacted. For me the putative benefits are not worth the adverse effects. That does not predict how you will respond to HU. We are each different in how our MPN presents and how we respond to meds. I would never presume to tell another MPNer what they "should" take or not take. My best advice is to make a truly informed decision about what is in your own best interest.

[Charlieapple2018 in reply to hunter5582]

Thank you for you considered response, a very useful perspective.

[Lifam]

upmc.com/patients-visitors/...

Please refer above link about side effects of HU. PLEASE!

Very reliable link

[Shmb]

Hi, I started on 500mg Hydrea daily november 2018 (PV) and now on 1g 4 days 500mg 3 days. Initially was terrified at the thought of taking it but thankfully minimal side effects and it has reduced my fatigue levels massively. I want to wish you well and say I hope taking hydrea will be of benefit to you.

Like Hunter suggested above I weighed up the risk of not being on HU versus side effects before agreeing to start - but in my case I'm glad I did.

[Charlieapple2018 in reply to Shmb]

Thanks for sharing , positive stories are really reassuring.

[Mazcd Partner MPNVoice]

Just to let you all know that I have removed Bippytat from our forum, for I think obvious reasons, and I apologize to you all, especially Charlieapple, for any distress caused by the comments made by this person.

It is normal that we have differences of opinions now and again, and that we don't always agree with what someone else says, but that does not mean that anyone has to be aggressive and rude, that is not the ethos of our forum, and I will always remove people from our forum if they behave in this manner, and thankfully it is not very often that this kind of thing happens. Maz

[Wyebird in reply to Mazcd]

Thanks Maz

[piggie50]

Thanks Maz,

I wasn’t involved in the thread but really felt for our members that were. xx