Insight into chemo - what's it like?

[Pulledbluecurtain]

Hello!

My 1 year old was diagnosed with a malignant brain tumour - medulloblastoma. His prognosis is about 50%. He's finished his first round of treatment and has done brilliantly. The treatment has been brutal with vincristine, Cyclophosphamide, Cisplatin and Methotrexate in 28 day cycles.

No 1 year old can really speak but regression before we got the diagnosis means my LO is completely non verbal. He can laugh and smile when things are good but when things are bad he can only cry.

Not if it is difficult or painful to relive but I was wondering if any of you who have been through chemo, would be willing to share your experience? What did it feel like? What helped? Were there any side effects that surprised you e.g. everyone has felt nauseous at some point in their life but was this different or were many of the side effects comparable to other illnesses? Is there anything that isn't covered by the literature that isn't necessarily good or bad just interesting, for example someone said medicine was cold when it went into the central line which I had never thought of.

I suppose I'm hoping for a window into his world and his experiences. Good, bad, ugly - all so gratefully appreciated.

Thank you so much!

I am so sorry about your lovely little boy and hope he pulls through it.

I just did weekly chemo and it does vary person to person and by type of chemo. It did not cause any nausea for me but some days would really want or not want certain foods. Some days seemed to crave foods with iron in.

Chemo made me cold but other people report being hot. What helped, having at least a monthly day out to do nice things like watching puffins gave me strength to get through next month. Having a loving husband. Sometimes I just needed to sleep more . It was useful having people do cleaning etc. We had one off cleans once a month. Although that won't help him, it might make your life a little easier. Mentally it was close to the toughest thing I have been through, the only worse thing was my son is hospital but it helped counting them down. Having other people to chat to who are going through similar helps a lot.

It's so hard when they are non verbal, my son is too and you just want to know how to help and everything is a guessing game but with mine I try different things leave them and see what he takes. It's not always what you would expect, a 19 year old boy taking rose bath foam. Its hard to know what to suggest for a 1 year old. I found comforting fabrics like velvet or fleece could help as could stroke the velvet. Sometimes it's nice to forget about the treatment totally. I wish you all the luck in the world and hope it kicks the cancer and your little one makes it through fine.

It may be worth looking into benefits as it gets very expensive having a child in hospital and requiring a lot of care. Macmillan have a financial advice line.

@OneZanyCat You're so kind to post such a thoughtful message and very much hope you are ok. I have no experience with chemo in my immediate family so its been such a learning curve with, like you said, things tasting different or loss of appetite and difficulty controlling temperature. So useful to hear from people who can describe it.

Love your idea of focusing on gentle sensorial experiences. Something i'll experiment with.

One thing I did with my son when he was very ill was things based on the 5 senses so touch was things like velvet, fleece, hearing was music, vision was Christmas lights, smell was different scented things though don't know with chemo I still liked but some can't tolerate and taste, nice foods but again but tricky with chemo. My son loved lights at that age and plants / flowers.

Thanks very much. I am really fine now, it worked along with surgery, radio etc and I met such lovely people along the way. It made me appreciate life a lot more after, just things like listening to birds, travel etc. I hope he gets through it and look after yourself, it's very important. Take time to do things for you when you get them.

I'm so sorry to hear about your little boy, I hope he gets through treatment as gently as possible.

My son was 8 when he was diagnosed with non hodgkins lymphoma in 2024 which is a blood cancer. He had vincristine, methotrexate, cyclophosphamide, rituximab, cytarabine & doxorubicin. 4 rounds in total.

He did experience nausea but anti sickness meds worked really well for him so actual vomiting was incredibly rare. He did end up with several infections too when he was neutropenic between rounds but it was always obvious as he spiked a temp and hospital always takes that seriously and monitors them closely.

Has he had any red light therapy to prevent mucositis? It's harder with a baby but definitely worth a try if he can be distracted for it and your hospital does it. They did it every day when my son was on methotrexate and he only ended up with a mild case of it.

My son never felt any of the chemo going in. He didn't experience any difference in tastes either but did end up needing a feeding tube as he really went off his food which is pretty common.

If you have any specific questions, always happy to help xx

Hope your little one is doing OK OP.
I had several rounds of chemo, so did a lovely friend I made in the chemo unit.
We both used to feel really cold, even on warm days we’d both want a blanket.
I agree with the previous poster…a warm, soft, fleece blanket which you can stroke is so comforting.
Chemo made me really tired, afternoon naps on the sofa under a fleece blanket were a daily occurrence.
Lots of people encouraged me to get out and about but I didn’t have the energy at the start, once my body began more able to tolerate the treatment I was able to do a bit more.

Your little boy 💙 So unfair he has to go through this.

Physical effects were different depending on the type of chemo. The first type I had made me nauseous (though not sick if I took the anti-sickness meds before the nausea started). The second type of chemo, I didn't feel nausea or sick. But i had neuropathy in my hands and arms. The only way I can describe it is it felt like there were ants under my skin. Also, the fatigue gets tougher the more cycles you have. It's not easy but it's manageable as you get to learn on what day during the cycle you'll start to feel better. I ate very bland foods and could only stomach room-temperature water. My mouth felt claggy after a while and I couldn't eat anything sweet. I'm sending all my best wishes to you and your son 💙💙

Hi @Pulledbluecurtain

So sorry to hear about your little boy

my son was on the same treatment, initially starting on carboplatin which he was allergic to.

Side effects - hair thinning , vomiting/nausea, low blood counts, jaw pain, tiredness. I think that was it, it’s been 10 years so it’s a little hazy

We really struggled with eating, due to the nausea and jaw pain, so he lost a lot of weight. We just gave him whatever he fancied. We used jersey cream milk when he would tolerate it, mccoys crisps. Ice cream. Basically all bad things just to get the calories in. We thankfully avoided an NG tube, but it was touch and go a few times.

Best wishes to you all xx