Eating Well with Blood Cancer - Ask the Nurses

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Eating Well with Blood Cancer - Ask the Nurses

Hi all,

Time for a new topic in our Ask the Nurse series. This time we’re covering Eating Well with Blood Cancer. We get lots of questions and comments about appetite and food. So, we decided to start our next thread on this topic. :green_salad: :carrot: :cucumber: :avocado:

We’d like to invite you to ask our @BloodCancerUK_Nurses any questions you have around nutrition, how your treatment may affect your eating or anything at all food-related.

If you don’t have a question, but you do have an experience you’d like to share with the community, please do also comment. Your experiences may just help someone else going through something similar. This could be ideas for foods that you enjoyed more if you were finding it hard to eat, eating well on a budget or simply your favourite treat when you are in need of one.

Please note that if you are currently very concerned about your eating or appetite, we would recommend you also speak with your GP or hospital team for advice.

Our previous Ask the Nurse topics have included Fatigue and Infection.

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Thank you for offering this space @Ali_BloodCancerUK!

I’ve been mostly vegan since childhood and try to eat healthily by default but now live with Polycythaemia vera (PV). Thankfully I had no symptoms at diagnosis but have gone on to develop irritating dry skin since taking daily hydroxyurea, which I’ve learnt to moisturise.

I’m wondering, aside from staying hydrated, what else can I do to improve my skin or reduce the dryness via my diet? I already take an iron-free multivitamin but would love any suggestions for ways to keep my skin healthier. Are there any vitamins/nutrients I could safely take more of to boost my skin health?

Thanks in advance!

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Good evening all, hope everyone is as well as can be.

Just thought I’d put my experiences, pen to paper, well digit to screen at least, regarding eating well with Blood Cancer.

I “celebrated” my new start yesterday, the 11th September, 7 years since my first (to date!) heart attack which, looking back, was very much a new, if unwanted, start at the tender age of 52. During the recovery process, which seemed to last for ages, I was diagnosed with Essential Thrombocythemia, with the CALR Positive Type 1 Mutation. This was in March of 2018.

Since the heart attack, and the diagnosis, I’ve had a very poor appetite but make sure that I eat, mostly because I know that I have to eat, and that much of my non-cancer related medicines are to be taken “with food”, and finally because if I don’t eat then various of my daughters will be cross/angry with me! :rofl:

I readily accept that my diet choices are and will be frowned upon by the dietitians but, if you have to eat when you don’t feel hungry, then you may as well try and eat something that you might fancy! So I don’t eat enough fruit or vegetables, probably eat too much meat and potato, especially home made roasties with my Sunday lunch, and I have a special place in my stomach for fresh bread!

I’m not sure if any of the above makes sense, or helps anyone, or has just made you smile, but that is the “Eating Well with Blood Cancer” philosophy according to Jimbo165!

Take care all, stay safe, be kind to yourselves and carry on smiling.

Best wishes,
Jimbo165

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Hope you don’t mind me wishing you a happy anniversary of surviving, dear @Jimbo165!! My heart attack anniversary is coming up too so I can empathise with how yours might feel for you. Long may our hearts keep pumping away! So glad you’re here to celebrate, I hope you treated yourself :cake::mending_heart::partying_face:

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Thank you @Duncan.

I had a WhatsApp message from Daughter No4, currently enjoying the heat in Sharm-El-Sheik with her significant other, wishing me a “Happy you didn’t die day” greeting! Bless her.

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Hi @Jimbo165 I love daughter no.4’s message to you, I second it!!!

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Dear @Duncan

Thank you for posting and I am sorry to hear that you have dry skin which can be irritating. May I ask whether you have discussed this with you Haematology team Doctor or Clinical Nurse Specialist? I would recommend you do this if you have not already. We do have some information around Itching | Blood Cancer UK which can be related to your diagnosis or the medication you are taking. It may well be worth asking to be referred to a Dermatologist as it is persistent.

It sounds like you are already maintaining a very healthy diet but worth looking at our Blood cancer and eating well | Blood Cancer UK information as there is sometimes some tips and recommendations here that could help.

I would be reluctant to suggest any further supplements as it is best to discuss these with your Haematology team. Vitamins and supplements are recommended if you are deficient in something which again, can be checked by your Haematology team.

I do hope this helps Duncan and if you would like to talk this through please do get in touch Blood cancer information and support by phone and email | Blood Cancer UK

Kind regards
Gemma

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Dear @Jimbo165

Thank you for posting your philosophy according to Jimbo :grinning:. It is very important to do what is right for you when it comes to diet, in particular when you have a reduced appetite. I am sure your daughters try to give you their best advice (that is our job :wink:) and if you can eat small amounts, regularly and keep well hydrated that is a good start. If you can a couple of portions of fruit or veg you enjoy each day even better.

Do take care and know we are here on the Support Line if you should need us Blood cancer information and support by phone and email | Blood Cancer UK

Best wishes
Gemma

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Aw thanks so much @GemmaBloodCancerUK, you’re so thorough and it’s reassuring that I’m doing much of what you suggest.

I did speak to my haematologist and funnily enough it was he who taught me how to moisturise properly… finally :rofl: So that helps a lot and has stopped my skin from looking a bit like crepe paper and ashy and isn’t so prone to cracking now. I’ve managed to avoid any kind of sunburn or prickly skin from too much sun all summer, so my slightly laborious morning SPF regime must be working!

Thanks for the suggestion of seeing a dermatologist. To be honest I’ve been putting it off while I acclimatised to my Polycythaemia vera (PV) treatments since diagnosis, but feel like I could deal with additional healthcare stuff now. My other half just saw a lovely dermatologist so I might try to get referred to her—nothing like a first-hand healthcare professional recommendation!

As for the additional supplements, I was wondering about nutrients that benefit skin health. Am I right in thinking that it’s vitamin E that improves skin elasticity?

Thanks again @GemmaBloodCancerUK!

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Hi @Duncan ,

Thanks so much for your comments.

Sorry to hear about the issues you’re having with your skin though - itching can be so irritating.

You are right that Vitamin E can be good for the skin, and here is some more information about it Vitamins and minerals - Vitamin E - NHS (www.nhs.uk)

However, I spoke to Gemma again before posting this and you must have that chat with your haematologist before taking any supplements or using a vitamin E cream for example (this is the same for any supplements you are considering taking). There are some suggestions in the link for natural ways to get more vitamin E in your diet - all good vegan ingredients, I think, so perhaps you are already having these.

It sounds like seeing a dermatologist would be a great idea too and hope they are able to find something that helps.

All the best,
Ali

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Oh lovely, thank you too @Ali_BloodCancerUK! Sometimes it feels like any biological knowledge I had pre-diagnosis has become filtered through fog so I’m glad to have checked.

I promise I won’t start any bonus supplements without checking with my haematologist first. And you’re totally right, I already eat a lot of those recommended foods high in vitamin E. In fact, weirdly I kind of crave nuts and berries (and chocolate?!) these days so I’ll keep following what my body’s telling me :face_with_monocle:

Thank you again for these Ask The Nurses threads, such an excellent idea and always so helpful.

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Good evening @GemmaBloodCancerUK, and everyone else, especially @Duncan, one of our overseas correspondents, I hope you are all as well as can be.

Gemma, imagine my surprise when I discovered that the 5 portions of fruit or veg was a daily target, and not a weekly one as I thought! :rofl:

I even added some apples into my shopping basket this morning, so we shall see how well that goes.

I was very much hoping that hops might be classed as either a fruit or a vegetable as last night was my fortnightly social outing where a “hop based beverage” may have been consumed whilst I was amongst friends, but sadly I can’t use that as one of my 5 a day!

Stay safe, take care and be kind to yourselves.

Best wishes,
Jimbo165

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Oh @Jimbo165 I think time spent (with or without hop based beverages) with family and friends is priceless and the best medicine, yes, be kind to yourself too.

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Ha you may be horrified to know @Jimbo165 that over here, maybe it’s a progressive California thing, but public health folks recommend we try to eat 30 different fruits and vegetables per week! It’s honestly easier than it sounds :seedling::avocado::green_salad:

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Hi @Duncan, if a packet of dry roasted peanuts is classed as a fruit or a vegetable then I’m covered! :innocent:

I wonder if a punnet of grapes count? Or a by-product of the raw grapes? :wine_glass:

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Hi @Erica, yes it was really good to have two of “my group” back after an absence of nearly 3 months following a car breakdown (him) and a broken hip (her)! Not good at any age, but especially so when my friends wife is mid 70’s! They bring another mutual friend along with them, and he turned 80 last November. I’m almost the baby of the group at 59!

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I would like advice and ideas on what to eat when going through stem cell transplant, for when I’m feeling my worst and without appetite.

In the past during inpatient chemo, my go-to has been scrambled egg and toasted English muffin with cream cheese and jam. I’d like to expand my diet or have more up my sleeve when these don’t appeal.

Also, what are some good ideas for putting sachets of protein powder into? I tried cranberry juice but it was too detectable. The hospital provides icecream milkshakes ready mixed with protein powder, but I found them far too rich.

Thank you for ideas!

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Hi, I know I should probably search the site for answers first, but as a newbie here - is there any specialist advice on healthy eating for people with Chronic lymphocytic leukaemia (CLL) and Type 2 diabetes? The booklet I received with my diagnosis letter seems to suggest eating Carbs to maintain energy and combat fatigue which is a no-no from a diabetic perspective as far as I’m aware.

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Hi @Dave_Hazell and @AMLucy .
@Dave_Hazell I have just read that you have a specialist nurse contact.
Because of having 2 conditions personally I would work with your specialist nurse to find a diet plan for you with your diabetes as well.
Perhaps @AMLucy if you have a specialist nurse then they are your go to contact as well, I say this so you get the right balance of protein in a form you can take.
Look after yourselves

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Hi @AMLucy,

Lovely to hear from you & thanks for posting.

As Erica has mentioned we would advise speaking to your clinical nurse specialist about this as they may be able to refer you to a dietician for some input. Eating throughout a transplant can vary from patient to patient, some people may want to eat their favourite foods as a comfort and others may want to stay away from them, so that they are not reminded of their transplant when they go to eat them again. It’s important to try to maintain a good calorie and nutritional intake, but often people just eat whatever they feel they could eat. Some people prefer blander foods when they don’t feel like eating such as toast or chips. It’s good you have an idea of a go-to meal! But can understand you may want other options. Eating something is better than nothing, so if you only wanted to eat sweeter things on certain days then having this intake is good. You may find softer foods easier if you have a sore mouth during any of your treatment such as ice cream, jelly, mash potato, soup, milkshakes etc. Trying to maintain a balanced diet can be helpful for recovery so your body is getting the nutrition it needs, if you like fruit, having things like cool (but not freezing) watermelon may be an option or smoothies.

In terms of your protein powder, you could put it in milk, or flavoured milk, if this is too creamy sometimes people do a mixture of water and milk with the protein powder. You could ask for a flavoured protein too to mix with milk, so this would then taste like a milkshake. It might depend on the powder you have as some can go in dilute drinks such as juice and others are better with dairy based products. Some people add protein powder to their cereal or things like overnight oats/ porridge, but again asking your specialist nurse may be helpful for this as this can liaise with the dieticians to see what they would recommend for certain types of protein powders.

In case you haven’t seen the link to this previously, we also have a page that may be helpful Blood cancer and eating well | Blood Cancer UK as this includes information about the different food groups too.

Take care & best wishes,
Emma (Support Services Nurse)

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