Top tips to help get you through Chemotherapy

[bazza7676]

India, very nice. Did you have any nodes removed? Just thinking of long flights x

[hopefulholly]

Hi Bazza, I've booked a holiday to India in Feb for 2 wks and got a fully comp quote for £274 from Staysure (other insurance companies are available!) and was told the quote will be reduced to about £230 if I wait until chemo finishes and to £159 after being cancer free for 2 years. This is a lot more than I usually pay but I desperately need a holiday and I'm just looking at it as part of the overall holiday cost. Unfortunately for me, my last 3 chemos had to be cancelled due to complications but it does mean that my radiotherapy has been brought forward so end of treatment (excluding Letroxole and blood thinning injections to treat blood clot) will be mid October for me.

It's worth shopping around but I think most insurance companies whack a premium on policies for travellers who have had cancer regardless of the prognosis. Good luck with your search and let me know if you or other readers manage to find more reasonable cover.

[bazza7676]

How many of you are planning a holiday after your treatment? I've seen that insurance can  cause a few problems. 

[Val235]

I wanted to try the Cole cap but my oncologist said if you are having EC you will loose almost all your hair. She advised me against it because of my COPD. Do not think I could sit for 4 hours on my head but as a lot of ladies say small price to pay if you keep your hair.

[SARN66]

Hi Sarahd,

Yes I will check but just wanted an idea, thank you

Best wishes

Sandra 

[Sarahd-1]

Hi Sandra
I've been told that once I've had chemo I would have a 3 week break and then start radiotherapy I would check though xxxx

[SARN66]

Looking ahead, due to have 2nd chemo next Thurs.  How soon after finishing chemo do you start Radiology?  Just wondering about booking a winter holiday once I finish chemo at beginning of December but wont bother if i start Rads straight away.  Should be having Rads for 4 weeks so will take me into January.

Thanks for advice.

Sandra

[ptbo15]

After my third chemo I came home and two days later I was brushing my hair which was long and healthy and it completely all came out.  I had a big garbage bag full of hair.  At the hospital there is a group that make caps for cancer.  Really nice ones for summer and winter.  Never had to worry just put it on and go.  Now 2 yrs.  later my hair grew back thin in some spots, curly when it was straight before and I think the worse gray!  I was told not to shave my head just left it fall out on its own.  Apparantly when you shave it your scalp gets really itchy.

[sugar8]

hi Maisie
Hope you are doing well. I have also heard that Clarityn works. On the USA website a lot of the women recommend using clarityn. I wish I had been advised better re pain management. They concentrated so much on the sickness (which I never got BTW) that I was never really informed re how bad the bone pains could be so was unprepared. I wonder if Clarityn will work for long term pains?

[maisie7]

Hi, just completed my first chemo/herceptin cycle.  I had severe leg muscle and back pain after the first session. My oncologist prescribed one Clarityn tablet a day to alleviate the problem.  It worked, not sure why or how, but I can now get by on a couple of paracetamol a day. 

[chachacha]

Maggie,I think it's hard to know unless you keep going and see what happens. Everyone is different, and I think the shape of your head has a big impact as to how the cap fits.

I am on FEC T and just had chemo 5 out of 6. My worse hair loss was just before and after FEC 2. Then it slowed down and got worse after first T. I have been considering giving up on the cold cap on many occasions, but I've managed to quite effectively disguise my bald patch with head band and hair thickening fibres ( which work surprising well but are costly) . Most people can't tell, but I know that my hair is a lot thinner now. The ladies with wigs do look smarter!

Good luck with your treatment.

[sugar8]

Maggie
The cold cap never made me sick but it didn't really work as it left me with a large friars bald patch after the 2nd chemo tax and Cyclophosphamide. On hindsight I wouldn't have bothered with the cold cap as it made the treatment times longer and i still had to resort to wearing a wig.

I know some people have posted here that the cap worked for them so then choice is really yours.

Good luck with your chemo x x. you must ask the nurses to give you something for the sickness which might make life easier. Take Care

[magsnags]

This is my first post. I don't really have ant tips as such (sorry) but I do have a question re the cold cap. I had my first chemo FEC-T (I have stage 3 HER2 positive and 3 of 15 lymphs were affected) 4 weeks ago tomorrow. I should have had the second dose last week but after travelling all the way there (they have suddenly closed the local unit and I now have an hours journey) they said they would have to defer for a week as I had a tooth abcess and had phoned the dentist earlier to get anti B's left out.

Anyway I had a terrible headache the first time, which I'm not sure was the cold cap or the chemo but within 40 minutes after the drip came out I had to use the loo and was violently sick, they had taken the cap off so I could use the loo and when I came out I could not bear it to go back on. I carried on being sick for an hour 

Just before I was due to have my second chemo, my hair started coming out - it's not thick anyway (as I have an under active thyroid) but every day I have maybe 3 handfuls of hair on my pillow and I can see a few bald patches on the top - though the back is less affected.

My question is am I likely to have wasted my time because I took it off early last time? 

Is it worth proceeding?  I had my longish hair cut short to make the capping easier but I read that the capping is more painful the thinner the hair is? 

Hard to know what to do for the best really!

Thankyou in advance

Maggie

[KarenOasis]

Thank you Jo for this, I have added the link to a FB page I have started to keep notes of things that help me in order that I might help others too

[Butterfly318]

Afternoon Gemma

Sorry but i'm afraid the Tax does seem to cause aching.  Mine was muscles joints etc. I took Codeine Phosphate 30mg at night which was great for getting a better sleep.  Of course the steroids given with Chemo will also be preventing you from sleeping.  Only two more to go then you're done....I would definately ask for some stronger painkillers.

Good luck with the rest of your treatment.  Gilly x   

[sod6162]

Gemma, I only just started treatment a week ago, Tax plus herceptin plus pertumusab. Also suffering with aching muscles, joints. I spoke with a GP on Tuesday and he confirmed I could take stronger painkillers (had cocodomel anyway) without worrying about overdosing. It worked. Get in touch with whomever can give you more effective painkillers. x Sheila

[faylouise91]

Thank you to all u ladies very proud of u all u really keep me positive good luck to all through ur chemo n I will seriously think about the cold cap thank you so much for posting xx

[Shinde]

Hi ladies. I have just finished my chemo I had 6 fec. I used the cold cap throughout and kept my hair just some thinning on top but I've even been to the hairdressers during my treatment. The key is lots of layers, pain relief, hit water bottle and something good on tv. It's horrible but I got through it. I had no sickness but was given lots of sickness drugs to help. I start my radiotherapy next Tuesday which I have been told is easy in comparison. I wish you all the best of luck lovely brave ladies xxx

[sugar8]

I tried the cold cap which was fine. Had a hot drink to start with which I kept in my mouth to warm me up. After the first 5 mins I didn't feel the coldness :-).
The cold cap wasn't so successful for me as I developed a large friar's patch but I was glad I tried it as it gave me the chance to come to terms with my gradual hair loss.

[Gemma-2015]

Hi, looking for some advice to deal with pain. I'm having Fec-t. Had my 4th out of 6 chemo sessions last Friday and my first herceptin last Thursday. No sickness this time unlike my first 3 but my whole body is aching and in pain, I've been taking paracetamol and ibuprofen as suggested by the chemo unit but it doesn't seem to touch the sides. I can't get comfortable anywhere so not getting any sleep which I think is making me feel worse. Is this normal? Also any tips gratefully received.x Gemma

[marli]

Hi everyone - I finished chemo 6 weeks ago, although still have herceptin/pertuzamab every 3 weeks. I used the cold cap throughout (6 x Taxotere) and have kept the majority of hair although it is a lot thinner than before. It is really worth persevering , I felt 6 weeks of discomfort were worth it instead of 6 months without hair.

On the subject of specs I bought some cheap folding ones from Wilko, about £5 I think, and only opened half of arms and this worked for me. Good luck with the cold cap ladies. Marli xx

[sod6162]

Hi Lulu, I had my first chemo treatment yesterday and used cold cap. Tips: take paracetamol beforehand (and during if the 4hrs runs out).  Nurse should spray hair lightly with water+conditioner, makes it easier to take it off.  Take a cotton Alice band got protect your ears and your forehead at the touching point.  It takes a couple of attempts to get a tight fit, it's really important as any gaps or bubbles will encourage hair loss.  I didnt wear my glasses, but nurse suggested bringing an old, bashed pair so I guess it's possible.  Might try ear buds and music next time too.  Keep warm, extra blanket was avail, and drink warm drinks.  Keep the injection arm warm, I forgot and wondered why my hand was hurting! It was cold...I did get a headache during first 10 mins but paracetamol was effective.  It extended the time by 1.5hrs. And I looked like I was about to be shot from a cannon according to my 19yr old son beside me.  When I got home I washed my hair with Simple shampoo and conditioner, gently towelled dry and left it to dry naturally. Put a silky nightdress over my pillow last night, and woke up 8 hrs later.  So far, so good.  Hope this helps xx

[Jojo1313]

hi i have just got through my 4th chemo session and have 2 to go, i have had the cold cap all the way through 1st 2 were ok 3&4th were very very unpleasant due to the thinning of my hair, i have lost alot but only in place mainly top and back but disguise this by just tying it back loosely, i am persevering with it but it does get colder, good luck with your chemo xxx

[faylouise91]

Hi all I have been told that I can have the cold cap but my macmillian told me I will lose my hair so I'm unsure of whether to try it or not also wot will I need to take for my 1st chemo session did the metallic taste happen on ur 1st chemo as I'm not to sure thank you all x

[Topknot]

Hi everyone, I've finished my chemo ( sorry to sound smug). The first seemed like a nightmare but lots can be done to help and to be honest the rest weren't so bad. I wanted to say try not to think too far ahead, enjoy your well weeks and there is life after chemo. I could use some tips on radiotherapy though?

[Elaine56]

Hello Lulubell1. I decided that I would at least give the cold cap a go, if it turned out to be too uncomfortable then I would ask the nurse if it could be taken off.
I was pleasantly surprised by both the cold cap and the chemotherapy. It was a warm day and the ward was quite hot so the cold of the cap, the initial 15 minutes it is really quite cold, was not unpleasant and was generally nicely cooling. The chemo was also much less traumatic than I had expected and the drug introduction only lasted about 45 mins for the FEC regime. To be effective the cold cap is on for 30 mins before the chemo then 2 hours after. The only downside was the time and the fact that I could not wear my glasses so couldn't read. Next time (2 weeks from now) I will ask if there is any way that I can keep my glasses on. I hope this helps. The very best of wishes to you for your treatment and recovery. Stay well, don't overdo it, rest and drink aplenty and watch your temperature carefully. Elaine56 xx

[Lucy_BCC]

Hi Lulubell1 and welcome to the BCC forums

In addition to the shared experiences and support here, please feel free to call our helpliners to talk any concerns or queries through, lines open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

I am posting a link to further information about treatments and further support ideas from BCC which I hope you will find helpful:

https://www.breastcancercare.org.uk/treatment

Take care
Lucy BCC

[Lulubell1]

I've got stage 3, 6 cm lump and five nodes infected.  I seem to be having the same treatment as yourself and start my first chemo in two weeks time.  Good luck with all your treatment and stay in touch x

[Lulubell1]

Please let me know how the cold cap was as I am thinking of having one as start chemo in two weeks time.

Thank you everyone for the tips I've picked up by reading this.  I am terrified but knowing you are all out there undergoing the same does give me strength xx

[Lulubell1]

Ive read to just keep eating plenty of fresh fruit and veg and wheatgrass is good for white blood count and Aloe vera to settle the stomach.  Best wishes x

[Lulubell1]

Hi there.  I start my chemo in two weeks time and I would love any help or advice.  Thank you x

[Lulubell1]

Hi I also start my chemo in a few weeks time and other's have suggested lemon and honey for the metallic taste, also pineapple lollies to help with sickness.

[Lulubell1]

I'm due my chemotherapy in two weeks time.  I didn't know whether to try the cold cap or not but I think I may try it now.  Was your body temperature cold or due to cold cap or did you wrap up?

[Lena2]

Hi, sorry to hear about the sickness. I had my first chemo on 23rd Feb and too bad. I have only had a little reflux but I am on 75% chemo only because of my age. I think u can get stronger anti sick pills, I seem to remember someone mentioning this in a post. I got a massive bottle of Gaviscon from my doctor for the reflux . Telephoned surgery just mentioned breast cancer and I was put through immediately and the prescription was done plus more anti sick pills in case I needed them. My God never had such good service normally have to wait at least 3/4 days for an appointment -- has some benefit being a cancer patient. My next session is 15th April so will look in again to see how you are perhaps by then I will be honking too. Love Eileen xx👍👇🙋

[JETS]

Hi I had first chemo on Monday and am very sick - will b asking for stronger anti sickness round too - but wanted to say that honey And lemon seem to have helped metallic taste and smell which I have also got - also helps to soothe my throat as the vomit burns ( sorry!)

[reeshe123]

I am due to have my second chemo session tomorrow, the tips really helped 1st time also had cold cap which was not as bad as I thought it was going to be. I also found that the need to feed was great, not every day, did try little and often which helped a bit. I'm trying to take one day at a time .

[sugar8]

Sorry Kpnuts can't help as I didn't get these nasal symptoms. My taste buds were affected and I ate lots of pineapple and sucks pineapple lollies through the chemo which help to reduce the side effects.

[sugar8]

Shinde. I finished my Chemo TCh in Sept'14. I was also very hungry during my chemo. I ate whatever tasted good. I felt like a pregnant woman. Ravenous and I needed to eat my meal on time or else my SEs were worse.

Good luck with your chemo. hope it goes smoothly
sugar

[Kpnuts]

Hi, I'm two cycles in to chemo and wondered if anyone has a tip for dealing with the unpleasant smell I keep getting in my nose? I think it relates to the congestion that EC causes but despite steaming and washing out I keep getting the smell alongside the metallic taste. Any ideas as at the moment it keeps bringing back my nausea feeling and puts me off food. Love Katy

[tamal]

Hi

friends

Are you read about treating that disease type with "a new molecular therapy that uses targeted peptides and proteins to restore cellular function".

Please do a Google search for the term "Peptide treatment", or the company named "Regenerative Cellular Therapy".

[Shinde]

Hi I'm new to this and sof far had one chemo session with cold cap. The hints and tips are fantastic! However, I can't stop eating! My taste buds seem to have gone so I am eating everything to see if it satisfied. Crisps and peanuts are the worst. Is anyone else really hungry? X

[Babtastic]

Thanks so much for these tips, lots of really useful info to help a newbie waiting for first chemo session next week. Stay well x

[Jo_BCC]

Hi Lynda

If you go to the first page of this thread ( I think there's about 34 pages!) people have put their hints and tips throughout the thread - it's been running for a few years now but users still find the information helpful.  If there's anything you need to ask and you can't find an answer then please don't be afraid to ask, there's always someone here to help.

Take care

Jo, Moderator

[LyndaMarie]

Hi Everyone

Please excuse me but I am new to the forum. I start my first chemo session next Wednesday 17th December and would be interested in the Top Tips for Chemo, but where do I find them?

Kind Regards

Lynda x

[Suzie68]

Hi Flossie my new site has gift packages containing natural products especially selected for each area of treatment. This idea came from my own experience. For more information please send me a private message

[flossie101]

What a fantastic list! Thank you to all the contributors 🙂

Something practical to share with family and friends who want to help - I'm going to ask them to help source items and put bag/packs/caddy together in readiness for when the time comes.

Thank you again xx