As Emma mentions, it is individual to the person but some of the ideas I’ve picked out from here is - follow your cravings (someone really wanted raspberries for example), fish in parsley sauce as a good ‘bland’ food and one person really liked lemon sherbets. There are others as you read through the thread.
There is also a mention of ‘clean diet’ which is introduced in our booklet about stem cell transplants, which you can download or order here: Blood-stem-cell-bone-marrow-transplants-seven-steps-seven-0617.4.pdf (shopify.com) It says that guidelines and restrictions vary from unit to unit, so you could also ask your clinical nurse specialist (CNS) about this when you speak to them too.
Hope this helps and take good care of yourself.
Kind regards,
Ali
Thank you for posting & we hope you are doing well.
As Erica has mentioned, it may be worth talking to your specialist nurse for haematology and/ or your diabetes nurse specialist to see what they suggest. Having lots of information can be overwhelming sometimes, especially if some of this is conflicting, but the main aim would be to include a wide range of foods as overall a balanced approach is best. Understandably you may have to monitor/ aim to have less refined sugars and carbohydrates with having type 2 diabetes, but there are no restrictions when it comes to diet with Chronic lymphocytic leukaemia (CLL) itself, it is mainly about having a good amount of nutrition and balance within your diet.
@Jimbo165 - happy belated birthday!! Glad we’re all still alive! . I liked your nutrition advice- and I think if one has a poor appetite you’ve just got to eat what you fancy! I’ve been meaning to ask you how you’re doing on the high dose and whether they’ve reduced it again? I know you were feeling rubbish got a while
Good evening @Gillyj and everyone else, I hope you are all as well as can be. Well now, I had the second enlarged dose (135mcg) of Pegasys last week, on Friday the 13th of all days. What could possibly go wrong I hear you all cry. Fortunately I don’t believe any of these superstitious sayings, touch wood!
The effects followed the same pattern as the first one, three weeks earlier. The Saturday and Sunday I felt achy and very snuffily and could have probably made a fortune hunting for truffles, Monday I started going downhill, Tuesday I got further down the hill, Wednesday I’d rather forget about and Thursday (today) I made it back up the hill to the broad sunlit uplands of the Midlands. The only real difference this time was that, following yet another support plan discussion at work, I was given Wednesday off of work (paid) so that I could rest/relax and hopefully feel better. It felt very wrong not going in to work when I should have been there. Having said that, my “insides” hurt such a lot this morning, but eased off as the afternoon rolled along, and I have suffered from mild headaches every day now, since the first bigger dose. Methinks this may possibly be connected!
The next step is for more bloods to be taken next Wednesday then a telephone consultation with my CNS at LRI on Monday the 30th of September. The blood results will dictate what the treatment options will be. I suspect that my platelet count will have decreased slightly but that my liver function will have deteriorated some, just to add to the confusion.
I will update after the 30th.
As always, take care, stay safe, be kind to yourselves and keep on smiling.
Hi @Jimbo165 thanks for the update.
As you say it is a waiting game till the 30th Sept phone call with your CNS.
Perhaps your clear diary of events will prove useful during that call.
That will be another month gone somewhere I know not where.
Keep smiling through it all and we look forward to hearing from you soon,
Good evening @Erica and thank you for your kind response. I hope that the CNS will read my notes, stating that she may not be able to get hold of me at the first attempt as I’ll be working on the day, and will be either driving my truck or operating my crane.
Indeed, where is the time going? It’s only 7:30pm and almost totally dark here in Hinckley!
Good evening to you too @Jimbo165 and anyone else interested in interferon ! I do love your humerous emails - they really perk me up! It sounds to me that your headaches aren’t quite as bad as last time but that your insides are worse/ so pleased to hear that you were given Wednesday off/ what a relief for you!
Let’s hope it’s done the trick and not hammered your liver too badly.
My platelets are down to normal levels so I can now space out the injections a little which I’m pleased at. It’s such a fine balance isn’t it- juggling with the dose against the blood results. I felt so well that I overdid things on Monday and Tuesday - I forgot about that little word “ pace yourself” and I paid the penalty Wednesday and today, back to jelly legs again!!
Hope you feel better and can enjoy your weekend
Hi @Gillyj yes, medication really is a fine balance.
Oh I am useless at pacing myself sometimes and I always pay the price too.
Enjoy your weekend too.
Good evening @Gillyj and everyone else, I hope you are all well and have successfully navigated your way through another week on Planet Earth. I too have survived and feel “okay-ish” following last weeks enhanced dose of Interferon.
You may have noticed that humour “looms large” in many, if not all, of my posts and I find that this keeps me relatively sane, although others may disagree!
My insides seem to be settling down now and are just an annoying background annoyance, rather than anything more, and I’ve even been able to avoid taking any painkillers today - bonus!
Take care all, stay safe, be kind to yourselves and keep on smiling.
Jimbo165 Sorry to hear you are having nasty side effects but glad you got a day off to rest. Hopefully the doctors can get the right balance for you.
Best wishes Liz59
Erica and Gillyj I also need to learn to pace myself. Because I am feeling so much better on the Jakavi I totally overdid it, ended up with a stupid cold and feeling wiped. Best wishes. Liz59
Good afternoon @Liz59 , and everyone else, thank you for your kind words. Today has seen the arrival of painful legs and very achy hands to add to the experience! As usual, I don’t know if this is down to the Essential thrombocythemia (ET), the treatment for the Essential thrombocythemia (ET), my comorbiditites or simply my ever advancing age, the latter of which feels to be advancing a greater rate than the standard 24 hours per day!
I also have the selfsame and very annoying habit of overdoing things if/when I feel okay-ish, so it isn’t just the fairer sex that keep themselves busy, or overly busy!
As always, please take care, stay safe and (hypocrite alert!) don’t overdo things!
Jimbo165 sorry to hear you are having pain in your legs and hands. It’s very difficult to know when you have new symptoms what’s the cause especially when you have several diagnosis. I know I tend to dismiss things as just part of getting older which my daughters remind me is not always the case. Take care and get medical advice on your new symptoms. I know hypocrite alert I know that personally sometimes I just get so fed up with appointments that the idea of adding more is just something I want to avoid. Hope it settles down and you get relief. Best wishes Liz59
Nurses just a quick question. we all know you can eat too much fat. Just wondering can you eat too little. what is the most and least amounts you should have. Thanks. Liz59
A small amount of fat is importance to ensure a healthy and balanced diet. Unsaturated fats like vegetables oils, nuts and oily fish are best for health.
I have enclosed a link here to the NHS guidance on fat. It provides further information and advice on the amounts that are recommended to eat which I hope you find useful Information about Fat
I was Dx with Essential thrombocythemia (ET) JK2 this year, I am only on aspirin. My main focus right now is helping my spleen filter out the extra platelets more efficiently. It seems like the only thing I can do at this point.
I am trying to eat a low-fat and low-sugar diet with small frequent meals, lots of water, no liquids with meals, no ice-cold foods, etc. So far, this seems to be helping my bloating and reflux at least.
Any help is appreciated.
Hi @CallyS a great big welcome to our forum and it is interesting to hear about your diet although I have recently been told by a consultant to drink less water/fluids.
So perhaps it is important to say to check out any dietary changes with our medical teams, especially if we are on any form of treatment.
I look forward to hearing more about you so please do keep posting.
Look after yourself
Erica, thanks for the welcome. Sorry if it sounded like I was giving advice.
I’m trying to find out if there is a way to keep the Spleen healthier through diet. The Oncologist explained that the Speen is in overdrive trying to remove the excess cells.
Interesting that they tell you why to drink less fluids. Thanks
I just wanted to also share a link also to this older thread that I found on the forum where people are discussing what they have eaten, after a stem cell transplant in case it helps with ideas for things you might like too: Awaiting or considering or had a stem cell transplant, a place to share here - Going through treatment - Blood Cancer UK Online Community Forum
. I liked your nutrition advice- and I think if one has a poor appetite you’ve just got to eat what you fancy! I’ve been meaning to ask you how you’re doing on the high dose and whether they’ve reduced it again? I know you were feeling rubbish got a while
