Hi I was diagnosed with Myleofibrosis in March last year, having had Thrombocythemis Jak2 positive for 11 years. I am currently awaiting a possible Bone Marrow Transplant. I am currently on Hydroxycarbamide and weekly injections of Interferon. I am having issues with feeling nauseous. Can anyone offer any advice as to how to cope with this?
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Hello @SCcoop
Welcome to the forum - and thank you for taking time to send in your post
I am sorry to learn of your circumstance.
I cannot relate directly to your situation (I am a Chronic lymphocytic leukaemia ('CLL') patient on active monitoring).
Given your query I felt it best to copy in our @BloodCancerUK_Nurses who will I am confident will be able to provide advice and guidance.
Take good care of yourself
Mike
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Hi Mike thank you so much for your reply. I am fairly new to all this and a bit of a technophobe too! Any advice or guidance will be greatly received. I wish you well in your journey too.
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Hi @SCcoop and welcome to the forum.
My original diagnosis back in 2023 was Myelofibrosis.
I am sorry you are having issues with nausea.
Can’t offer any specific advice as I was on different medications.
What I would say is speak to your clinical team as they are likely to be able to offer something to help.
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Hello there @SCcoop, welcome to the forum. I’m sorry to read of your newer diagnosis of Myelofibrosis ("MF’) and that nausea. You’re not alone in living with those and I’m sure that the forum and its amazing specialist nurses can offer some great tips.
Although I bet your lived experiences have taught you well already, perhaps you’d like to read more about MF? Here’s the great Blood Cancer UK information, just tap on the red link: What is myelofibrosis? | Blood Cancer UK
While I live with Polycythaemia vera ('PV') rather than Essential thrombocythemia ('ET'), I’m sure you know that they and MF are types of Myeloproliferative neoplasms ('MPN'), often with similar and overlapping symptoms and treatments. Here’s more information about Myeloproliferative neoplasms ('MPN'): What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Feeling nauseous is sadly not uncommon with the sorts of treatments we take and blood cancers we live with. I’ve read that ginger sweets (like the kind for seasickness) can help settle nauseousness, and personally I find peppermint tea, or even very minty chewing gum when out and about, helps with my own upset stomach. Let me see if there’s a thread or 2 around the forum about Myeloproliferative neoplasms ('MPN') and helping nausea, maybe these; Nauseous with ET and ET diagnosis finally sinking in
May I ask, as you lived with Essential thrombocythemia ('ET') for so long, if you have your own tips to share I’d love to hear. I’m sure others around the forum would too. I know there are others here who share (or have shared, like dear @DuncanB) your diagnosis of MF and transplants who will no doubt offer their wisdom.
If it would help to speak to one of the specialist nurses do give them a free call on 0808 2080 888.
Do please let us know how you get on @SCcoop and what you find helps.
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Hi Duncan, yes I thought about that too. I have an appt next Friday, so its top of my list. Just wondered if anyone on here had had the same symptons.
Thank you for your reply.
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Hello @SCcoop and welcome to this forum. Just to say initially that if you put an @ before the person’s name you want to reply to that will make sure they find your post.
I was diagnosed with Myeloproliferative neoplasms ('MPN') that had features of Essential thrombocythemia ('ET') and myelofibrosis over thirty years ago when I was in my mid thirties. I was told from the beginning that my disease was hard to classify. So much more is known about Myeloproliferative neoplasms ('MPN')’s these days and a few years ago I was found to have the CALR mutation. Around this time my disease transformed so that it is now 100% myelofibrosis with no features of Essential thrombocythemia ('ET'). I don’t want to bombard you with too much information but I really sympathise with the nausea. It is horrid. My GP was very helpful and I tried various anti nausea medications until I found one that worked so be reassured that there are several different medications to help with the problem. As others have said, I also find ginger biscuits and peppermint tea or peppermint sweets can help. Thinking of you. Warm wishes Willow x
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Just to add to my earlier reply @SCcoop I think nausea and sickness is something we all have had to deal with.
It might be helpful to record those times when you have nausea and sickness.
When I was on Azacitidine injections I found that if I had my day 1 injection later in the day because I was having a blood transfusion I sometimes was sick after dinner.
Hopefully your clinical team will offer plenty of useful ideas
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Thank you @DuncanB for the added information. I will certainly look I to this as an option.
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@Willow thank you for your kind reply. I was going to mention it to both my haemotology team and the Transplant team at my next appts. But its good to know that their are options available to help with the nausea.
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Hi @Duncan thank you for replying to my post with so much info. I have to say whilst having Essential Thrombocythemia I had no real side effects. I was on Hydroxycarbamide tablets. It was only when I had a bone marrow biopsy that the Myelofibrosis was diagnosed. I am now on a reduced dose of the Hydroxy and weekly injections of Interferon. I am also lucky that a possible 3 x 9/10 donors have been identified. Just waiting to see if after bloods and health checks one of them will be a viable option. I have a fantastic medical team behind me so my faith and trust is totally behind any decision they make.
Kind regards SCcoop
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Hello @SCcoop
Welcome to our Forum, thank you for posting your question and a little about yourself.
I’m sorry to read that you’re having issues with nausea, it could be caused by several things, so discussing this with your Haematology team is the best thing to do.
Are you managing to eat at all, or is the nausea stopping you from eating? Is it all day or just certain times of the day?
There are several different medications for nausea that can be prescribed, and depending on the cause the Doctor/Nurse can suggest what would likely work for you.
As DuncanB has suggested, if you have times of the day when it is better or worse, note these down and let your team know - it may help them work out what may be a cause.
Duncan has linked some great threads and webpages for other tips and advice, so do take a look if you can. This list is on one of our pages:
- Try avoiding hot food. Many people find it smells stronger than food that’s room temperature or cold.
- Try to avoid cooking when you’re feeling sick. If possible, let someone help with cooking.
- Cook and freeze meals in advance if you can.
- Avoid fried, fatty, spicy and very sweet foods. Plain, bland foods may be easier to eat.
- Eat little and often.
- Chew your food well and sip drinks slowly.
- Avoid drinking a lot before you eat.
- Try to make sure you drink enough fluids. If you don’t feel like drinking, you might find it easier to suck on ice cubes.
Some people also find food or drinks containing ginger and peppermint can help. You could try peppermint tea, peppermints, ginger beer or ginger biscuits.
If you aren’t managing to eat or you think the nausea is getting worse, do let your team know sooner, rather than later. You certainly don’t need to wait until your appointment to mention this. They would rather you weren’t struggling with feeling sick, especially with a possible transplant on the horizon.
You’d be welcome to call our support line and speak to one of our nurses if you wish, it is free and confidential: 0808 2080 888.
Hopefully you can start to feel better soon.
Take care, Heidi.
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Thank you so much for your reply which I found both supportive and informative. Yes, I am eating, but a lot of the time I don’t too. I know how important it is to keep my strength up for hopefully the forthcoming transplant. I have found mint tea takes the edge of it, but on the really bad days, it doesn’t even touch it. I have emailed my CNS nurse to ask if she can speak with the Dr’s for some help, failing that I will speak with my GP.
I can cope with the tiredness/fatigue, but the constant nausea is getting me down.
Once again many thanks for your help, advice and support.
Kind regards
SCoop
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Hello SCoop,
Just wondering how you are. Did you manage to get on top of your nausea? How is your eating going? I hope that your doctor managed to help you.
Take care, Heidi.
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Hi Heidi_BloodCancer
Thank you for checking in with me. I am pleased to say that the nausea can be controlled now as my Consultant has prescribed Cyclizine. It has made such a difference. I have also learnt this week from my Bone Marrow Team that a donor has been identified. I know that there are still bridges to cross and hoops to jump through, but feeling positive. I have had all my pre transplant tests and I have come through them with flying colours. Still another bone marrow biopsy to have, but that now doesn’t fill me with dread.
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Aw this sounds positive @SCcoop, just wanted to say I’m really glad that the nausea is under control now. Thanks for letting us know. I’ll keep my fingers crossed that the next BMB goes well and your donor match and its arrangements work out smoothly too 
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@Duncan thank you. Yes, everything crossed for the donor coming through her medical okay 
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Great news @SCcoop that a donor has been found
It’s an amazing gift to have from someone and definitely a reason to be positive.
Good luck with the next steps
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