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Member
Posts: 20
Registered: ‎13-07-2015

Re: Top tips to help get you through Chemotherapy

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.

Member
Posts: 73
Registered: ‎30-04-2015

Re: Top tips to help get you through Chemotherapy

Hi Sarahd,

 

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

 

Best wishes

 

Sandra 

Member
Posts: 288
Registered: ‎16-06-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 73
Registered: ‎30-04-2015

Re: Top tips to help get you through Chemotherapy

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

Member
Posts: 13
Registered: ‎17-07-2015

Re: Top tips to help get you through Chemotherapy

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.

Member
Posts: 234
Registered: ‎22-05-2014

Re: Top tips to help get you through Chemotherapy

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?
Member
Posts: 3
Registered: ‎14-07-2015

Re: Top tips to help get you through Chemotherapy

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. 

Member
Posts: 8
Registered: ‎07-04-2015

Re: Top tips to help get you through Chemotherapy

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.
Member
Posts: 234
Registered: ‎22-05-2014

Re: Top tips to help get you through Chemotherapy

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

Member
Posts: 1
Registered: ‎12-07-2015

Re: Top tips to help get you through Chemotherapy

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

Member
Posts: 2
Registered: ‎15-06-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 423
Registered: ‎04-10-2013

Re: Top tips to help get you through Chemotherapy

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   

Member
Posts: 68
Registered: ‎27-03-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 6
Registered: ‎02-05-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 11
Registered: ‎11-01-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 234
Registered: ‎22-05-2014

Re: Top tips to help get you through Chemotherapy

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.
Member
Posts: 5
Registered: ‎17-01-2015

Re: Top tips to help get you through Chemotherapy

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
Member
Posts: 569
Registered: ‎01-05-2012

Re: Top tips to help get you through Chemotherapy

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

Member
Posts: 68
Registered: ‎27-03-2015

Re: Top tips to help get you through Chemotherapy

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

Member
Posts: 1
Registered: ‎05-02-2015

Re: Top tips to help get you through Chemotherapy

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