any advice re chemo / radiotherapy preparation

[mishamilo53]

hi it’s me again ! Sorry I’ll stop posting soon no doubt once into my treatment but I wondered what tips and advice you all may have for surviving chemoradiation …. What foods to prepare , skin care, anything to help with side effects etc …hair loss advice ….anything really that would help prepare …. What about admin too ? My goodness I’ve never seen so much paperwork , appointment cards , tel numbers I need a PA …. I need a good thermometer by the sounds of it too ….. crikey …. Many thanks for listening again much love Elly x

[Draigo]

Hi Elly, don’t apologise! I can tell you what helps for me I’m on carboplatin, pemetrexed and bevacizumab on a 3 week cycle so a bit less vigorous than your regime. I have dexamethasone and anti sickness meds for the first week of the cycle which helps with the immediate side effects. But I suffer from a sore mouth and lips so use a mild mouth wash and lip balm which helps I also just bought a ice crushing machine and add a little juice or squash and this really soothes my mouth. My skin gets very dry so moisturising shower gel and moisturising cream particularly on my legs (non perfumed). I have had some hair loss which is patchy areas not the whole lot, quite difficult to manage but use caps, hats hair bands etc and a wig when needed although I have to say it drives me crazy! Food wise I try and eat fruit, veg and healthy stuff but there are days when I only want very plain food crackers, biscuits etc and some strong flavours I can’t tolerate. Admin wise I have bought a big wall calendar and write all appointments and the ton of related information on it this also helps my family know what’s happening. In addition I print off all appointments and letters etc and keep in folders I agree a PA would be very handy!

I hope this helps xx

[mishamilo53 in reply to Draigo]

thank you so much for sharing that Draigo , so helpful …. Wall calendar is such a good idea I’ll get one today ……I’m dreading the hair loss but I’ll start looking for some headwear although I look a b*gger in a hat …. Someone else mentioned moisturisers etc too , I will ask what is suitable to use …..thanks again , I love getting ideas from those going through it too …. Elly x

[Bow-19]

I found it good to keep hydrated when having chemotherapy, good to drink enough fluids. I find aveeno great as a skin moisturiser. Important not to suffer in silence if anti sickness meds not working or diarrhoea/constipation feedback to your Lung Nurse or MacMillan Nurse as if one thing doesn’t work they usually have other meds or ideas to try x

[mishamilo53]

thank you for your reply and sharing your tips …. Someone else suggested Aveeno too … I’ll check that out so thank you …. I guessed keeping hydrated always helps doesn’t especially with nausea etc … I’m not good at being sick but guess I might have to get used to it but hope they can control that as you say …. I won’t be being stoic in that respect ….. a friend just says she used to get the large grapes , peel them and freeze them , they were like mini sorbets and were great for mouth sores etc and hydration too … on the hunt for huge grapes now too ! Thanks again for sharing , Elly x

[Ellejayb]

Hi there. It depends on the extent of the hair loss, but I got by with hair extensions put in by my hairdresser. And my post-chemo hair is so thick, it’s even been described (for the first time in my life) as a ‘mane’!! So there can be some good to come out of all this!!! Wishing you the very best.

[mishamilo53 in reply to Ellejayb]

aw thank you so much for that … my friend says hers grew back straight , she was always complaining about her curly hair pre treatment … 😂

[Cosmic54]

morning pet my dentist gave me a script for Duraphat toothpaste she said any type of cancer treatment will have an effect on your teeth I’ve used it for over a year now 👍 I had radiotherapy and I’m still having immunotherapy no where near your regime. Just make sure you build yourself up weight wise. Odensatron anti sickness helped me still does 👍 I lost 3 stone in as many weeks so the dietitian advised I eat full fat milk cheese etc to help gain weight. McDonalds vanilla milk shake always went down well 👍

[mishamilo53]

hi there thank you so much , I know it’s a brutal plan isn’t it I’m very daunted … I’ve booked a dental checkup for Tuesday next week so will ask him about the toothpaste.. these are the things you don’t think of aren’t they …. As for the weight , I can afford a couple of stone loss after the comfort eating of the last few weeks !!! Thanks again helpful to hear from others experiences ….

[RoyCastleHelpline Partner Ask the Nurse Roy Castle]

HI Elly

These two links are to our information booklets on chemotherapy and radiotherapy, which you may find helpful.

roycastle.org/app/uploads/2...

and

roycastle.org/app/uploads/2...

If you find you are getting too much information, just put it aside until you want to refer to it for anything, it can also be a great preparation before your treatment starts. It is great getting tips and advice from those that have been through it on the forum.

It is understandably daunting and good to have the support from those who have experienced it on the forum, hope it all goes well for you.

Please do not hesitate to contact us, either if you would like postal copies of the information booklets, or just for a chat, you can email ask the nurse at [e-mail] or call our free phone nurse led helpline number on 0800 358 7200 Monday to Thursday 0900-1700 and Friday 0900-1600

Kind regards

The Roy Castle Support Team

[mishamilo53 in reply to RoyCastleHelpline]

thank you so much x

[Keepingstrong]

Hi Elly,

My husband did well with his treatments and had no hair loss or bad side effects. He did drink lots of filtered water. When he was receiving treatments he took in with him water with lemon or watermelon and ice chips to suck on. He would rinse his mouth with water and baking soda to avoid mouth sores. He took baths in epsom salts (Alkabath) to help detox and keep his skin soft.

As far as food he stayed away from processed sugar, ate mostly a vegan diet, took extra supplements and raw greens and protein smoothies (Whole Earth & Sea) with a banana for potassium, walnuts, yogurt, ground flax. You may have low potassium and magnesium. Ask your doctor to keep an eye on it. He also did high dose vitamin C IV therapy between treatments. He also took digestive enzymes, THC and CBD oil as well. We did lots and he did very well for 3 years. After his second covid vaccine the cancer came back. That's a whole story in itself.

Take care! All the best...sounds like you have a great positive attitude going in to this.

Hope this helps.

[mishamilo53 in reply to Keepingstrong]

thank you so much for sharing all that information …. Great ideas for me …. Did you have to check with his medical team about supplements…. They seem very keen on that you tell them If you choose alternatives or supplements etc …. I love the idea of watermelon and ice chips to pack in my bag for treatment too so thank you again … I’m so sorry to hear his cancer has returned , I hope you have a plan for his recurrence x

[Keepingstrong]

Yes, we did check with his team and they were very strict especially with antioxidants. We stopped the supplements a couple of days before and started them again a couple of days after. He is taking Turkey Tail right now and Chaga (these are mushrooms in a powder ) He also takes a supplement called Immune9, a high dose of D3, colloidal silver and we bought a Rife (Spooky2) generator system. It seems to be helping fight the cancer and the turkey tail is also good for cognitive.

They are monitoring him only. He has also developed a heart issue last December was diagnosed in February stage IV. They can't do chemo because of the heart and they won't do immunotherapy because they are only allowed to if he has at least one chemo treatment. So we are doing everything naturally in the meantime and he has been doing very well. They gave him 4 - 6 months without treatment and it's been 8 months.

[mishamilo53 in reply to Keepingstrong]

wow it sounds like you know what you want to do and I wish him the very best with it all …. Nobody can say you didn’t give it all your very best shot ! Xx

[Keepingstrong in reply to mishamilo53]

Thank you so much! We are trying everything natural available to us.

[mishamilo53 in reply to Keepingstrong]

I so hope it all helps him , sending good wishes x

[IanM1957]

Hi Elly,

Wow - things have really started moving fast for you, I'm pleased that the doctors are talking in terms of curative treatment.

The treatment plan sounds quite daunting but if it results in a cure it will have been worth it.

I can't offer any advice on the radiotherapy as I've never had it. You might find it more comfortable to wear loose fitting clothes for the chemo sessions as you'll probably be sitting in one position in an armchair or on a bed for anything up to 6 hours.

I expect they'll provide tea or coffee and maybe a sandwich but I found it useful to take bottles of water in with me.

The Carboplatin will probably affect your bone marrow and, in turn, reduce your white blood cell count making you more susceptible to infections so do your best to avoid people/situations where you could be infected by the common cold/flu/covid.

I wish you all the best in this "journey" - please do keep us all updated with your progress.

[mishamilo53 in reply to IanM1957]

aw thanks Ian , I’ve already had the scary list of side effects and the warning about infections 😱 …. I’m very daunted by my plan but at the same time determined to give it my best shot …. Was fitted for my radiotherapy mask today ? That was an interesting experience and I have my very first body tattoo !!! Loose clothing sounds perfect I’m told to expect to be there 6hrs for the chemo every Tuesday …. Thanks as always for the advice and reply ..Elly x