I'm new and would like help

[Imogen82]

I'm new to posting on any boards, I'm on hydroxycarbamide, nearly 2 months now and and feeling nausea every day - I am very anxious. What can I do to help myself?

[Mazcd Partner MPNVoice]

Hi Imogen, sorry to hear that you are feeling like this, though it is understandable. Have a look at this information on our website, it might help you

mpnvoice.org.uk/living-with...

it might also be worth speaking to your GP about this as he/she will be able to offer you lots of advice on how to cope with anxiety. Best wishes, Maz

[Imogen82 in reply to Mazcd]

Thank you Maz, I'll have a good look at the website now. I made a mistake when signing up to HealthUnlocked - thinking I needed a username, not my own, (I was panicky) and my name is Kate - I will try to find out how to change it so it is right. I am so glad I found this lovely community. I am determined to beat the anxiety as it is much worse than the condition, for me, at the moment.

Thank you so much for your reply.

Kate

[Mazcd Partner MPNVoice in reply to Imogen82]

Hi Kate, you are welcome, and you don't need to change your user name if you don't want to, you can have any user name you want, a lot of people don't use their own names. Have you just emailed me about having a buddy? Maz

[Imogen82 in reply to Mazcd]

Yes, I have. Will it help me to have a buddy? I feel isolated right now, with it all. Please will you tell me how to remove the imogen name...I'd rather be Kate

[Mazcd Partner MPNVoice]

Ok, I will send you the details, I am sure it will help you having a buddy to talk to as you will be getting advice and support from someone who really does understand what you are going through. to change your user name you need to go to the drop down v at the top of the page next to your name, click account settings and scroll down to username. Maz

[mhos61]

Hello Kate,

Welcome to the forum. Just joining this forum will help with your anxiety. I also see that you have asked for a ‘buddy’ which will equally help.

I know how debilitating anxiety can be, as I have suffered from anxiety in the past. I would imagine the anxiety is contributing to the nausea too. Determining whether it is the hydrea or anxiety causing the nausea should be discussed with a medical professional.

I have ET and have been on hydrea for nearly two years. It does the job for me, and in its defence is tolerated quite well in most people. I have had no side effects. However, it’s not for everyone, so see how you go and discuss with your GP/ haematologist at your next appointment.

Mary xx

[Aime]

Hi Kate, just a big welcome to this forum. You’ve helped yourself by joining all these lovely people on this forum who really do understand what you are going through and will support you.

I have PV but not on meds yet so can’t help you there but just sending you E hugs and kindest regards Aime xx😺😺

[Imogen82 in reply to Aime]

Thank you Aime, I really appreciate your kind words and the hugs!

Kate x

[Kelly2 in reply to Aime]

Hi Aime! What are your counts? Mine are 650 platelets and 50 haematocrit. I am prescribed Hydroxyurea 1 pill

[Aime in reply to Kelly2]

Hi Kelly, my hematocrit is .44 and platelets 450 at the moment. I usually have a venesection at .45 so next blood test will probably have a higher hematocrit reading.xx kind regards Aime

[Kelly2 in reply to Aime]

With these counts you are fine! At 45 haematocrit my doctor did not take any action on me. Nor 450 platelets. I wish I still had these counts!!

[Scottishterrier]

HI Imogen

I am in the same drug for many years now I was feeling the same so either mention this to you Consultant or GP and they will prescribe you an anti emtic drug which is an anti sickness drug it might be a juggling act to get the one that works I was tried on one did not work then tried me on Domperidone and now no nausea good luck

best wishes

StevenGeorge

[Imogen82 in reply to Scottishterrier]

Hi Steven, Inspired yesterday by the lovely people here on the board and a call to a MacMillan Nurse, I went to a (different) GP who has altered my meds for anxiety to Lorazepam and given Haloperidol for the sickness that has caused me to lose so much weight. Today I have felt no sickness, and have eaten food, even though I've slept a lot too. It is so good to have a source of advice from people who have ben thought it all before.

Thanks You! Kate

[Inca]

Hi Imogen,Kate,When I started on Hydroxy 8years ago,I too suffered nausea,anxiety,depression etc. You do get used to the medication and the nausea lessens.It is awful, I had help for depression,a mild anti depressant,my G P and consultant are very caring ...still have bad days ,we all do,but mostly get on with life,it's also a question of managing the tiredness etc,you will soon So keep your chin up ,you will find much help on this site,honestly things get better.Best Wishes Sally

[Imogen82 in reply to Inca]

Thank you Sally, I am feeling much more positive today, and so well supported by you kind people on the board. I'm so glad you have good medical help around you, what a difference it makes. My GP gave me a big hug yesterday! Kate x

[Superwoman]

Hi Kate, welcome to this great forum of some very rare peps. Sorry to hear that you are suffering with anxiety, think this could be the problem that is making you feel nausious as I take Hydroxy for my ET and Asprin for the last 4 and 3/4 years with no problems, although like you at the beginning I did keep feeling sick thinking it was the drug, but my doc said that where I had got myself in such a state over my diagnoses that the worry had triggered my IBS and nausea is a part of that, so I took myself to task changed my diet too plenty of fresh fruit and veg, cutting out any fatty foods, got fit, and drink 2Ltrs of water a day which helps flush the the drug through your kidneys and liver very important is this, and now I can truthfully say that there are days when I forget that I have ET.

Also I started to read a book about mindfulness for dummies also has a cd with it this has helped me so much. Hopefully the nausea will pass, but if it continues speak with your Haematologist, and maybe they can change you to another drug, but saying all that do not suffer in silence we are all here for one another, and that in its self makes you feel so much better knowing you are not alone.

Jean 🙂

Ps I still enjoy a glass of wine now and then.

[Imogen82 in reply to Superwoman]

Dear Superwoman, you are so right about good support and information from this group. I have new meds today for anxiety/sickness and already the sickness is fading, so I have been able to eat both breakfast and lunch, with lots of liquids too. I will go back to Pilates and Yoga soon, which I had sort of dropped, and go back to daily walks, as I see has been advised by so many here. I might even try the gym! I didn't know it was important to drink lots till I read it on here, although I was so thirsty I did so anyway, but not enough probably. Thank you for your help, Kate x

[Superwoman in reply to Imogen82]

Good to hear Kate, now it is onwards and upwards, and soon you will put all of this to the back of your mind.

Jean x

[amhann]

Hi Kate

I’m ET JAK2+ and scared myself witless when I started on hydroxy 8 months ago(not least because symptoms under control on aspirin came crashing back at me)!

I space out my tablets with aspirin after breakfast, the hydroxy an hour after my evening meal, and statins + amitriptyline (not ET related) last thing - I’ve found that doesn’t overload my tummy.

This is a great forum and you will find loads of info and help. It takes time to get your head round things and find what works for you, but you will get to grips with it and will find things improve.

Very best wishes

Anne-Marie.

[Imogen82 in reply to amhann]

Thank you Anne-Marie, that is good advice about spacing out the meds. I am beginning to see some hope round the corner...especially with this forum

Kate x

[MCW22 in reply to amhann]

That's exactly how I space mine out too. Wasn't told to do it like that, just used my common sense.

[katiewalsh]

Hi Kate, Welcome! First I want to say how sorry I am about your nausea. You’ve already received some good suggestions. I know some folks with “typical” cancers who get nauseous from IV chemo have success with the sea sickness wrist bands. They work by pressing on a trigger point on your wrist. In the US you can get them on Amazon for very little money. Don’t know if it would help you but thought I’d mention it. Also, some folks find that their bodies adjust after a short time and side effects disappear. But drinking 2-3 liters of caffeine free liquids daily is very important for all of us. Hang in there and remember that if you ever feel down or in need of some support we’re here to provide that as well. Good Luck! Katie

[Imogen82 in reply to katiewalsh]

Dear Katie, I will definitely drink much more water but 2 to 3 litres sounds very daunting to a very small sized person like me...I'll do my best! Thank you for your commitments to support, on this board, Katie and everyone!

Kate x

[francesb]

Hi, I think maybe tell your consultant about the nausea and ask them to prescribe an anti sickness/nausea medication. Mine did this no problem and it definitely helps. Best wishes Frances

[Imogen82 in reply to francesb]

Frances - I grabbed an emergency Dr. appointment yesterday afternoon, was so lucky to get one, met an angel of a GP, and have new meds after a dash to several pharmacies, fourth time lucky, at ten to 5 pm. The new meds have definitely helped today Such good advice from all here.

Thank you - Kate

[francesb in reply to Imogen82]

That's great, so glad for you. Good luck, Frances.

[Ramy22]

Hi Kate.... all of this will get better I can almost promise you! Feeling isolated is really horrid but this site, the MPN site and the buddy system will help with that. I have had ET for decades and have been taking hydrea for years. Just communicating and meeting people who are in the same position helped enormously ... and hopefully this will help you too. Keep sharing!

Mary

[Imogen82 in reply to Ramy22]

Thank you Mary, I appreciate your kind and knowledgeable support and look forward to my Buddy!

Kate x

[Ramy22 in reply to Imogen82]

Anytime! Xx

[Wyebird]

If you have been newly diagnosed give yourself time. If this is the case and you live in Uk your anxiety could be relieved by having a buddy. Follow Maz’s advice.

It took me two years to accept things and to learn how to cope. Hope things improve.

[Imogen82 in reply to Wyebird]

I will apply for my buddy in the next day or so, and hope to begin to adjust not just for my sake but for my poor long suffering and wonderful husband too.

Kate x

[Bridie123]

Hi Kate, my name is Carole and I am on hydroxy and I find that it's best for me to take it after breakfast ( porridge) with at least a pint of water and then more water throughout the day. I must say it has taken a good year to settle down with this, I still get bouts of various side effects but I am not stressed about it anymore and that seems to help. Hope you find your level sooner. 😊X

[Imogen82 in reply to Bridie123]

Thank you Carol, I haven't tried hydroxy after breakfast, Perhaps I should, once I get back to eating again properly. I imagine it is trial and error till we all find out what is right for us, but it is so incredibly helpful to have all the ideas and suggestions to play around with. Thank you for your good wishes for me,

Kate x

[Raphael_UK]

Hi Kate, welcome to this group, I have found the good folk on here really do have a wealth of personal experience. I am on Hydroxycarbamide, also felt nauseous, but now realise it wasn't the Hydroxycarbamide, more the anxiety causing the nausea. I did a course on mindfulness relaxation and feel a lot better, no nausea, even though my Hydroxycarbamide meds have been double in the last few months. Hope you feel better soon, love & hugs - Raff

[Imogen82 in reply to Raphael_UK]

Dear Raffles, I have been booked onto a stress and a mindfulness course - over the next couple of months. Good ting I'm retired, I feel for those struggling with this while in work and with young families. I hope I benefit from the coures like you did,

Kate x

[Raphael_UK in reply to Imogen82]

The course I did in mindfulness, I went thinking this was really weird and I didn’t really get it, it takes a while to get into it, once you do it will really help. You WILL feel better. Raff

[lizzziep]

Hi Katy, it is scary when you're first diagnosed and when you first go on the drugs. Both those things make you anxious. It would be odd if it didn't bother you! I have been prescribed Lansoprazole, which I take as soon as I get up, to protect my stomach and help prevent nausea. I take it at least 30 minutes before eating, usually an hour. Your body will gradually get used to the drugs, but everyone is different. I was on hydroxy for a few years, then developed side effects, so I'm on Anagrelide now. Hope you're soon feeling better.

Best wishes

Lizzie

[MaryGoretti]

Hi Kate sorry to hear about your nausea and anxiety. Knowledge is power so learn as much as you can about your MPN.

I only joined this forum a few months ago and this is my first post, I was diagnosed with ET JAC2 + almost 9yrs ago and started on Asprin and Hydroxy from the beginning. I felt very sick at first and was started on an antiemetic drug which became my best friend for many weeks then gradually I was able to reduce and now I take the occasional one if I need to.

Hopefully you will soon begin to feel better and cope with what’s happening and Maz and this forum will help greatly.

Best of luck Kate x

[Imogen82 in reply to MaryGoretti]

Thank you for your good wishes Mary. It has been so very helpful to learn so much from the lovely people on this forum. I hope gradually to get back to some of the things I used to enjoy doing, which I think will take my mind off things.

Kate x

[Ann16]

Hi Imogen82, I take low dose aspirin and Hydroxyurea and have nausea occasionally. You probably should let your doctor know, maybe there is something else he/she can give you. Sorry that has to be miserable.

[Roger41]

In this instance.May ask do you keep hydrated?

I have also purchased a salt lamp to help my stress levels.

I feel that as you learn to try to keep yourself in focus your worries may be less and eventually you will feel less stressed.

[tracey13]

What time do you take your hydroxy?

My husand takes his hydroxy at 6pm

[Hughesf]

im now 3 years on same medication and i sometimes still feel nausea mostly in the morning not long after waking. this ususally wears off.

its one side effect i live with

Frank

[Juliet46]

Hello I’ve just been diagnosed with ET and JAK2, I’ve taken my first tablets today and am anxiously waiting for side effects! I feel that my world has changed forever. I’ve been kidding myself that the platelets would stop rising, but they haven’t. I haven’t had a single symptom from the disease so have been in denial. Feeling sorry for myself!

[Kelly2 in reply to Juliet46]

Hi, don’t the doctors say that till the platelets rise up to 1000000 one shouldn’t worry?

[Juliet46 in reply to Kelly2]

Yes well mine are now 1100. However I’ve been taking the medication for 12 days now and so far so good. I’m feeling more positive now . Thanks for replying! 😊

[Kelly2 in reply to Juliet46]

Juliet let’s keep in touch. I will start Hydroxyurea too and scared to death with the nausea thing. The doctor told me to take it in the morning but here I see others taking it in the afternoon. Do you know anything about that?

[Juliet46 in reply to Kelly2]

Hello Kelly2 Yes Id like to keep in touch. I take my blood pressure pills first thing in the morning then clopidogrel after breakfast then the hydroxycarbamide n allopurinol after lunch and so far it seems to be working for me . I have my first check up today since starting hydroxycarbamide so I am anxious to see how I am getting on.🙂

[Kelly2 in reply to Juliet46]

Hi, it seems that I will start them too. I’ve spent 14 years since diagnosed without symptoms only itching after shower and only with a low dose aspirin which was great but now my haem suggested Hydroxyurea! Platelets 650, haematocrit 50. Tomorrow I will see him and I too think that my life will change. I dread the side effects and what the drug will do to me in the long run. Be well

[Lainy1]

Hello and a warm welcome. I can see you Have had some very good advice from everyone... wishing u all the best and feel better soon.

Lainy

[Juliet46]

Thankyou for replying! I’ve had some excellent advice and have come to terms with it more now . I realise there are people a lot worse off than I am at the moment.

[Roger41]

First welcome to this unique club.

If your symptoms are not settling contact your team, who will help you and perhaps prescribe you an antisemitic.

Failing that your local herbalist may advise you to try a ginger supplement this will help.

Anxiety is a kicker in this journey.

It's a must that you try to remain focused and calm.

I use a salt lamp and it works to help with the mood swings.

Having the right information to support you while you get your head round this condition is a must too. This is why this group are so helpful.

I take my meds after lunch around 2pm.

I decided that after a meal seemed to suit me best.

Of course making sure you are well hydrated is also a must.

Drinking a glass of water after every meal helps with the eight glasses a day routine.

Some people have tried sea bands that also may help.

Hope you find this helpful.

Regards .

[Frankydafish]

Iv been told almonds help with nausea. Your doc shld have prescribed sum anti nausea meds for u as well .sorry you're feeling so crook hope all gets better for you