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Anyone tried any holistic or alternative remedies for chemo side effects?

30 replies

Catchingbentcoppers · 07/05/2019 13:40

Obviously with the approval of chemo team etc. I just wondered if anyone had had any success in this respect and what did you try?

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SnowsInWater · 08/05/2019 08:23

Hope you do don't mind if I lurk* @catching* to see if anyone has any tips. I had round 4 yesterday and have only moved from bed to sofa today. DS2 is bringing me regular tea and biscuits and DH has just lit the fire so I can stay cozy (Autumn in Sydney) Smile

Catchingbentcoppers · 08/05/2019 09:00

Not at all @SnowsInWater, I'm glad of the company! Smile Hope you start to feel more human soon. I started to feel so much better yesterday - just in time for another session today! I keep thinking, another week down, another week closer to the last session.

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JayneyD · 08/05/2019 13:17

This isn't from personal experience as I have never had to go through what you are. However I have read plenty of anecdotal evidence about medical cannabis / CBD helping with nausea and appetite.
There is a study being carried out in Australia - www.ncbi.nlm.nih.gov/pmc/articles/PMC6144412/ and this makes for an interesting read too www.projectcbd.org/medicine/managing-nausea-cannabis

Catchingbentcoppers · 08/05/2019 14:37

Interesting info Janey, thank you.

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TheQueef · 08/05/2019 14:40

I went old school and smoked joints (still do) if you are lucky enough to live legal or don't care

JayneyD · 08/05/2019 15:30

No problem @Catchingbentcoppers

@TheQueef if that's what works for you sometimes you have to break rules!

TheQueef · 08/05/2019 16:45

It was the nausea. I could cope with the rest of I wasn't so sick. I've always had a dicky tummy but I just couldn't eat, which delayed everything and had a health knock on.
Now I wonder why I dithered about doing it Grin

Catchingbentcoppers · 08/05/2019 17:11

A bit TMI probably but it's the constipation that is my biggest issue. Followed by the opposite that just wipes me out. I knew it could be a side effect but I wasn't expecting it to be as bad.

Tried prune juice in desperation and it was the fucking devils brews, I swear I thought I was going to turn myself inside out. (sorry ...)

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TheQueef · 08/05/2019 17:16

I feel your pain it's like a merry go round. Sad

SnowsInWater · 08/05/2019 18:21

I find coloxyl with senna works for constipation but it sounds like you might be way beyond that catching. Generally I am the other extreme too, Imodium is my friend!

Interesting articles about cannibas. Even the thought of smoking a joint makes me retch which is probably not such a bad thing as I don't have that option. I haven't actually thrown up but am constantly nauseous. After my three days of strong anti-nausea tablets post Chemo which are on my treatment plan it is a constant toss up between the side effects of the prescription ones (feeling spaced out, dizzy and generally crap) and eating carbs at regular intervals. I had Maccas for breakfast three days in a row last week 😏

Heartburn is my bugbear at the moment. I am typing this at 3am as I need to sit/stand to try and relieve it even though I really want to be asleep.

Catchingbentcoppers · 09/05/2019 06:08

@SnowsInWater yep I was the same last week - felt hungry but couldn't really face much and anything I did have gave me indigestion. I forgot to ask the nurse if I can take anything for that too. I've definitely had the spaced out feeling too, like I wasn't really there, I wasn't expecting that.

I had second dose of Paclitaxel yesterday as they're giving me that every week with a combo of that and Carbo every third week. So I only have Cyclizine for nausea for until I have the combo again in a.couple of weeks, so I'm hoping its enough.

They gave me some sachets for constipation and I've taken lactulose too so I'm hoping for some, ahem, movement after breakfast. Though not too much! You can't bloody win can you?! 🙄

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OneTitWonder · 09/05/2019 06:10

Hi OP, I had dose dense chemo for breast cancer in 2012/2013. Sorry you are going through chemo too, it's shit.

What sort of side effects are you looking for relief from?

Catchingbentcoppers · 09/05/2019 06:21

Hi @OneTitWonder, mainly constipation at the moment really, though I'm hoping the sachets the nurse gave me yesterday will help.

I think that made me feel so much worse than I perhaps would have? It makes you feel awful at the best of times never mind now! And the nausea - just that constant feeling.

I feel I'm kind of living on a knife edge waiting to see what other side effects happen if that doesn't sound too daft. In trying really hard to keep my mouth from getting dry and making sure I'm using a decent alcohol free mouthwash a few times a day but I expect mouth ulcers are the next thing. I'm drinking so much water I pee constantly but I believe that's not a bad thing.

I have very long hair but I'm getting it cut short today. I know it's perhaps early days but I could certainly see a lot going down the plughole yesterday and I think it'll be less traumatic for me if I have it short. All such fun! I'm trying to be positive and cross off each session as I have it but I just wish it was over with.

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OneTitWonder · 09/05/2019 06:43

OK, if anecdata helps, then I never got mouth ulcers at all, hopefully you'll get lucky too!

I also never had much in the way of constipation, and no nausea. Honestly, I was incredibly fortunate given I was having massive doses and infused fortnightly instead of three-weekly because my tumour was so large. There really is no rhyme nor reasons as to how the side effects occur - another woman going through the exact same treatment as me had to be hospitalised with the vomitting, whereas I literally had not even the slightest nausea.

The side effects I did get, especially from the halfway mark onwards, were bone pain and exhaustion but not being able to sleep. The bone pain was just awful, and there is essentially nothing that you can do it alleviate it, except sleep which I had trouble doing. I ended up taking sleeping pills, prescribed by my oncologist, and they were a god send. I did though start taking tumeric - I would actually buy fresh tumeric and grate it into food or make hot drinks with it - and it did help somewhat, but to be honest sleeping through it whenever possible was the best relief.

I also had indigestion and reflux, for which I was also prescribed medication, but it was not that effective. I ended up sleeping in an armchair with built-in footstool that my husband bought and put into our bedroom so that we could still be close (bless). I also drank lots of milk and worked out what my food triggers for indigestion were so I could avoid them (weirdly bread and broccoli were the worst).

My hair fell out after my second round of chemo, just basically dropped out in the shower one morning so I had to have my head shaved. It was quite a shock, even though I knew it was coming. On the upside, I can tell you that there is nothing like the feeling of a hot shower pounding down on your bald head, I used to stand under the shower until the hot water ran out, it was so blissful!

It is great to try to be positive, but please PLEASE don't think it's a requirement. You have every right to feel shit - physically and mentally - and you really need to give yourself permission to be angry, sad, upset, worried etc. My son was only 4 when I was diagnosed and I used to keep it together for him - wanted everything to be 'normal' - and then fall apart after he went to bed. It's such a shitty time.

It will soon be over with, and I know it's hard to believe when you're in the midst of it, but you will get your life back. It might not be the old normal, but as I often say in many ways, for me, the new normal is actually better. I am focussed on things that make me happy, I don't put up with shit from anyone, and I spend as much money as I can on holidays as I know how bloody short life can be.

All the very best to you, and others in this thread going through chemo too. It is bloody cruel and hideous, but you can - and will - get through it.

JuliaAndJulia · 09/05/2019 06:58

These may or may not work for everyone but when my DM was going through chemo 8 years ago, for 6 long months I read up about this..

  1. We cut out sugar completely as it feeds the tumors
  2. Daily aloe Vera juice to heal the insides
  3. Wheat grass juice/powder to build immunity which is crashing
  4. Organic stuff as much as possible

Sorry you are going through this, hope your scans reveal good news soon. That's the best fix to all problems chemo.

Catchingbentcoppers · 09/05/2019 07:01

@OneTitWonder thank you so much for your post, it's real and encouraging at the same time.

I'm only at the very start of this journey (hate that term but it seems kind of appropriate) so I know there's a long road ahead. I'm struggling with lack of sleep on the day of chemo and the one after and only had about 4 hours last night. Bone pain is something that I'm really concerned about but I suppose I just need to look at it as one more thing to just get through. What type of chemo/s did you have if you don't mind me asking?

I can't imagine what it would be like looking after a 4 year old right now it must have been so hard; mine are both early/mid teens so pretty capable most of the time though I'm determined that none of this will affect DS's GCSEs over the coming weeks - cue fixed smile and 'everything's fine' from me when he's around.

My friends keep saying 'oh you're so brave' and it's pissing me off (I don't mean to be horrible!) because I'm absolutely not brave in any way. I'm scared of the next few months. But as you say, it'll be over and I can have my life back. Thank god.

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OneTitWonder · 09/05/2019 07:14

@JuliaAndJulia please don't spread misinformation to vulnerable people. Sugar does not 'feed tumours' and cancer patients are strongly encouraged to eat a balanced, nutritious diet covering all of the food groups. Sugar occurs naturally in many fruits and vegetables so I'm not sure how you could eat well and not eat any sugar??

@Catchingbentcoppers - I had oestrogen positive breast cancer so had the standard regimen for that type of breast cancer - docetaxel, doxorubicin, and cyclophosphamide. I had 8 infusions over 16 weeks (followed by 25 days of radiation therapy, just to keep me on my toes).

I am not going to sugar coat it, for me, the bone pain was horrendous and I would just lie in bed in the fetal position and quietly sob because there was nothing that would make it go away (except finishing chemo!). I remember one time when I just totally lost it, all my reserves were gone and I just sobbed and sobbed for hours and my poor DH, who was very used to me just getting on with things, did not know what to do. In the end he suggested cancelling chemo, which made me stop crying so I could tell him not to be ridiculous.

'Brave' and 'inspirational' are two of the most fucking annoying words in the English language. I was fucking terrified the entire time, there was no bravery about it, I just did exactly what my oncologist told me to. If he'd told me to run down the street naked, I would have gotten my gear off and done it, not because I was brave but because I wanted not to die. And as for inspirational - well I guess I was inspiring people not to get cancer [sceptical]

JuliaAndJulia · 09/05/2019 07:27

I meant 'sugar' not naturally occurring components in fruit/veg. I thought this was common knowledge by now!

Catchingbentcoppers · 09/05/2019 07:35

@OneTitWonder oh god that sounds so awful for you, did they not give you any pain relief?

Mine was triple negative breast cancer so I'm having adjuvant chemo. 12 weeks Carbo/Paclitaxel (every 3 weeks for the combo and every week for the Paclitaxel), then 9 weeks EC but thats only every three weeks. Then I guess they'll give me a few weeks break before the radiotherapy.

I did debate (briefly) wether to wait and hope for the next but my tumour was such that the oncologist suggested that I'd be in this exact position again in 2 or 3 years time. I honestly think, as ridiculous as it sounds, if I were 35 years older I would take my chances. But I'm only 52.

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OneTitWonder · 09/05/2019 07:45

@JuliaAndJulia, it isn't common knowledge, it's a myth. There are a multitude of reputable medical sources on the net which refute the claim that sugar feeds tumours, the Mayo Clinic being one of them: www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-causes/art-20044714

@Catchingbentcoppers unfortunately for me I can't take opiates as I have an adverse reaction, so my options for pain relief were limited. I think the issue with bone pain is also that it is caused by the chemo, so it is hard to control when they are pumping you full of the stuff that's causing it, if you know what I mean?

I was 43 when diagnosed, as I mentioned with a 4 year old, so absolutely no choice but to do everything I could. Radical mastectomy and axilla removal (8cm tumour and 12 of 16 lymph nodes), chemo and radiation, plus five years on aromatase inhibitors. It was a shit, shit, shit time but you get through it, you come out the other side, you pick yourself up, dust yourself off and get on with life. At this point so many years later it all seems like a bad dream in many ways (except for the missing breast bit, which makes it fairly real Wink).

Catchingbentcoppers · 09/05/2019 07:45

@JuliaandJulia Just eating a well balanced diet is recommended during treatment, just as normal really. I'm interested in your mention of Aloe Vera and will mention that to my oncologist.

This is a good article from Cancer Research UK on the subject of sugar.

www.google.com/amp/s/scienceblog.cancerresearchuk.org/2017/05/15/sugar-and-cancer-what-you-need-to-know/amp/

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Catchingbentcoppers · 09/05/2019 07:53

@OneTitWonder (I do love your user name, it shows you kept your sense of humour)

Wow, you really went through the mill 😢. I feel very lucky really, my tumour was tiny - picked up on routine mammogram they couldn't even feel it when they knew it was there and no spread to lymph nodes. Your surgery itself must have been bloody awful to recover from.

The only thing I believe I have to have as well as chemo and radio is some injections at the end of it (which name escapes me). But, like you, I'll do whatever they suggest. It's funny because when I saw my oncologist he said that the chemo and injections would give me an additional 8% chance of the cancer not reoccurring (on top of the surgery) and I was thinking 'is that all'? But when you think about it, any additional buffer is a good one.

Thank you for sharing your experiences with me, it must be quite hard for you to think back to that sometimes and I appreciate you taking the time to be so honest with me. Flowers

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ememem84 · 09/05/2019 07:58

I’d been told that milk thistle helps alleviate some side effects.

I haven’t ever had chemo but a family friend has and they swore by it.

I’ve only ever used it for hangovers. It (I think) helps the liver process toxins.

OneTitWonder · 09/05/2019 08:02

@Catchingbentcoppers, feel free to ask anything, anytime, I'm always happy to pass on info or just listen.

Catchingbentcoppers · 09/05/2019 08:07

Thanks @OneTitWonder, I really do appreciate that.

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