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AUGUST '17 Chemo Starters

Sue58
Member

Re: AUGUST '17 Chemo Starters

Hi guys, chemo number 2 done..... bloods were really good so no worries there. Phew..supposed to be in at 2 but finally had cold cap put on at 3.15 !!!! Very busy ward and short staffed. Those nurses work there socks off...so by the time chemo went through and head defrosting from cold cap was done I got out at 5.45.. a long afternoon sitting waiting... we dampened my hair down first then put conditioner on. Something we DIDNT do first time..(dampening hair first) my hair is still shedding and I have a large bald spot right in top of head but still have a decent covering everywhere its just so thin and fine and loose...lol. my hair was very thick and short and dark brown..but now is much greyer and lifeless... I'm going to persevere with the cold cap as long as I can. But because its a lot thinner on top it felt so much colder this afternoon... very painful for 12 minutes then it was ok... I'm not ready to shave it yet. Will wear a scarf over the bald bit for now...I just wish my hair would stop falling out at the slightest touch..I can cope with thinner fine hair..just !! ... I have the same tablets as Butterfly..the emend are good.. hope the other ladies due today were ok.. and thank you for messages of support it really helps..those that cold capped especially pacman. Apparently its very common to get bald patches on top of head so my nurse told me...its just how the hell do you cover them up. Can any shampoo help to thicken the hair ? Love and hugs to you all xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi Cathy. Definitely ask for more meds for nausea..think it's one of the easiest side effects to treat, and when they get them right they are a godsend. I've had Emend before the chemo and 2 days after, domperidone, dexamethasone, and ondanstron. Been very lucky getting them I know, and they've worked a treat. Don't suffer in silence. Xx

Cathysid
Member

Re: AUGUST '17 Chemo Starters

Gosh guys, the hair loss thing cannot be easy! I found some lovely hats on anna bandanna website with a little peak and pre tied scarves as well as beanies. I think I'm in denial at the moment that this is really happening. It seems so far fetched.

Any great tips for nausea? I'm on day 3 and on ondansetron twice daily but still feel very nauseous(not been sick yet but very close). Has anyone been given any other meds for nausea that have worked better for them? Don't know if I should just accept it or see if I can get anything else - the hospital just advised I go to the gp but I can't really find the energy to go!
Good luck telling your little one Claire. Try not to worry. Kids are so matter of fact and seem to take it all in their stride. My kids think it's so funny my hair will be falling off - so we've turned it into a bit of a joke and they enjoy trying all my hats and scarves and wig on!
Take care all, cx
Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi all hope everyone's had a good weekend. I seem to be waiting ages for my deferred 2nd chemo it will be over a week and a half late. Arh well guess they know best, just worry about everything at the minute.  I had an absolute mad moment at the weekend. I looked at my reflection with the patches, long bits and non-existent curls and I hacked it all with the kitchen scissors! 😫I've discovered I'm crap at tying scarves and I find it uncomfortable where my glasses sit. Getting wig tomorrow so I'll test that x disaster x

fairy
Member

Re: AUGUST '17 Chemo Starters

this forum is great for sharing tips isnt it.. i ordered the full and half weave to try.. ive got my 2nd chemo this afternoon and ur right about having young kids so hard to be patient with them at the mo, i have a 4 9 and 13 year old xx
Sib
Member

Re: AUGUST '17 Chemo Starters

Thanks fairy I have ordered a fringe to wear with my hats when walking dog or popping to shops. Brilliant idea. Thanks for sharing. Xxx
Sib
Member

Re: AUGUST '17 Chemo Starters

Your right Claire it is bloody hard going some days!! Trying to.put a brave face on for everyone. Losing your hair is hard and it really sucks. Mine was shaved 10 days ago now (number 2 they dont shave) and getting it off was easier than I expected an evil getting used to wearing my hats, scarfs and wigs. I so feel for you with your little ones. My boys are 27 and 22. My 27 hasnt seen me yet witbout hair (other than piccys) but my 22 year old finds it difficult to look at his mum without her wig on (I always cover my head with hats when he's around) it breaks my heart to see him avoiding looking directly at me. I see fear in his eyes and want to protect him so much It's so hard for our families too.
Sending a hug. X
fairy
Member

Re: AUGUST '17 Chemo Starters

cold cap hasnt worked very well for me very thin on top.. suck doesnt it.. cried buckets today xx
fairy
Member

Re: AUGUST '17 Chemo Starters

ive just ordered some of these off here http://heathershair.co.uk/shop/ they look good and u only pay p and p and a donation.. real hair too xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Well done Mary Kate, glad you've had your second cycle, but sorry you are suffering with SE. Amazingly the headache and fuzzy feeling hasn't kicked in yet, day 4 for me. Nausea stayed away again with good meds. I agree about the insomnia though, what a pain. Managed to get off to sleep, but last night it was off and on from half 2 🙄 Last steroids today, so hopefully this will be the last truly bad night. 

Head feels really funny with no hair, still got a bit of stubble which I don't like. I couldn't have kept it on any longer through as it was coming out in handfuls, at least I don't have to worry about driving along with the window open now! 

Sleep tight ladies, hope we all have good days tomorrow, results we want this week, and better second cycles. Xx

Mary-Kate
Member

Re: AUGUST '17 Chemo Starters

Hi Ladies

Thankfully my white blood cell count had improved enough for me to go ahead and have my second cycle yesterday, quite a relief to be back on track again.  Felt very nauseous, light-headed and headachy as expected yesterday and a not great day today with that horrible 'chemical' hungover feeling and just so fuzzy and wiped out.  Didn't help that the insomnia from the steroids kicked in for most of last night!  I'm hoping the side effects will improve over the next few days....

 

Hope everyone is going on OK.  Butterfly - I'm sure you look fabulous with your shave, I still haven't managed to take the plunge yet.  I did try the cold cap again this time just to see if I can cling on the remains...  Sam, good to hear your first cycle went well and it does sound like heartburn - hope it improves soon.  Hope you're geting there Sib, Ali, Cathysid and Claire and anyone else I've missed.

 

Helenp, Sue58 and Xena, good luck with your 2nd cycles this week!  Sue58 I didn't get to hear about my low blood count until I was sitting in the hospital, literally ready to go, I think that's why I was a bit taken aback when I couldn't have the treatment.  But they told me they wanted me to go in anyway so I could be re-tested in case it had improved in the couple of days since it was tested - hope your's is OK tomorrow...

 

Have a good week and hugs to you all xxx

Sue58
Member

Re: AUGUST '17 Chemo Starters

Thanks Ali..I will ring hospital first thing in morning.. I just want to get chemo number 2 done..although not looking forward to side effects!! ..hope you are ok and 'getting there''..!!
ClaireH81. I'm loosing lots of hair also..don't think cold cap has worked well either for me. Lost too much hair on top although I have a lot of short thick hair so its sort of covering some very thin patches...and every time I touch my hair slightly I get loads of hair falling out...I cried loads yesterday its so hard seeing it fall out..I have lost about 40% I think so far..!!! This has all happened in the last 4/5 days I should of had my chemo 2 on Friday..but am worried there may be less hair tomorrow for me to cold cap..!! Hope your doing OK x
Ali S
Member

Re: AUGUST '17 Chemo Starters

Sue, I'm not sure about your bloods. I have mine done on a Monday and have to attend the clinic on Tuesday to get the results before chemo on Thursday. I would have thought that they would let you know if there was a problem though x
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Claire

It's probably one of the hardest things....losing your hair. One of the rare times that I got upset. Unfortunately the cold cap doesn't always work. But isn't it suppose to save some of it? I resigned to losing it and resorted to scarves. It does get easier, I promise.

Sending a hug xx

ClaireH81
Member

Re: AUGUST '17 Chemo Starters

Hi All
Bad day today..cold cap hasn't worked I'm day 4 following 2nd chemo. Hairs come out in clumps this morning got lots of patches. Trying to be brave but it's bloody hard isn't it?!
Going to sit my little girl down at tea time and try to explain things to her, gutted that it's going to have to be done the day before her first day at nursery.
Side effects wise it's been slightly better than the first time but still nauseous and light headed.
Hope everyone is doing ok xxx
Sib
Member

Re: AUGUST '17 Chemo Starters

Hope you are all doing well.
Day 11 after 2nd chemo and quite different se this time, like you Ali, I have struggled with fatigue this time, which im finding hard to accept. Sometimes just putting kettle on seems like a huge chore, quite unbelievable when I think how busy I was pre bc! However doing better now. Really need to stop my need for control and let my body deal with treatment.
Sending hugs and positive thoughts to Aug chemo buddies , we are powering through this together. Xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Thanks Ali... glad your starting to feel better... is it usual that if your bloods are ok they DONT ring you. Or do they usually ring and let you know either way ? Xx
Ali S
Member

Re: AUGUST '17 Chemo Starters

Hello ladies

Sue, I hope your second treatment goes ahead tomorrow as planned.

I'm 11 days post my second and it's been a bit of a struggle this time, especially days 5 to 9. I had absolutely no energy and just getting washed and dressed was a challenge. Glad to say I'm starting to feel better now.

I hope all of you ladies are doing ok xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Hi everyone..hope your all doing good ? How are the cold cappers doing after chemo one ? Do you still have hair? Still waiting for results on my bloods that were taken Friday morning, I havnt heard anything as to whether they are ok or not !!! is it normal for them to let you know either way? Hopefully I will get chemo 2 tomorrow but worried as I havnt heard anything and have already been put back 3 days due to the ward being closed due to staff shortages !!!!
Love and hugs xx
Sam890
Member

Re: AUGUST '17 Chemo Starters

Thanks cathysid. That is what I was thinking just damn uncomfortable.
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Nikki very helpful. Xx
Nikki49
Member

Re: AUGUST '17 Chemo Starters

Mine was about the size of a 10 pence piece, it was positioned about an inch below my collar bone.

It raised the skin a little, someone would probably notice it if you don't have any clothes hiding it such as a vest top, but a blouse or t-shirt no one would know,

It was removed about 4 weeks after my last chemo, it's left a small vertical scar that is hidden under my bra shoulder strap x

Nikki49
Member

Re: AUGUST '17 Chemo Starters

 
Cathysid
Member

Re: AUGUST '17 Chemo Starters

Sam ,
Sounds like you have heartburn, otherwise known as acid reflux up the oesophagus from the stomach. I would speak to your breast cancer nurse and describe your symptoms. Many people on chemo get given antacids and it really helps with the discomfort.
Cath x
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

I've been taking mine at breakfast and lunch, although they did say anytime up to 6pm! Bought some lavender oil today so going to give that a go. Thanks for the warning for T! Xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Ooh thanks Nikki, can I ask does it show much? I don't feel I have got much space for it to fit under the skin, so feel it's going to stick out? What kind of size is it! Xx
Sam890
Member

Re: AUGUST '17 Chemo Starters

Hi all. Hope you are all doing well this weekend. I am on day 9 of 1st cycle fec-t and seem to have got away quite lightly although I have had nausea, fuzzy head which I dont think is helped by lack of sleep. My head is tender and itching like mad and I keep thinking I am goin to wake up with all my hair on the pillow! Decided to have a very short cut next week day before wig appointment. Can anyone help with one issue I have. Since Wednesday, each afternoon and evening I start to get pains which feel like indigestion in my left chest and the bit in-between ribs. I dont think my heartrate has increased but seems like it is pumping harder. When I lay down at night it is excruciating so I sleep ( I say that but got 3 hours last night!) propped up with 4 pillows.
Nikki49
Member

Re: AUGUST '17 Chemo Starters

I was advised to take steroids at 8am & noon, I didn't have any problems sleeping at night. You might not have a problem on FEC with the steroids but when you switch to T the steroid dose is doubled, take care x
Nikki49
Member

Re: AUGUST '17 Chemo Starters

Hi butterfly,
I had a port and highly recommend it, you can have it put in under a general or a local. I had a local. Once the wound has healed there is little chance of infection and no faffing with covers in the shower and no weekly appointments to have it flushed. My mum is a retired theatre nurse & knew the vascular surgeon that inserts the portacath - he said if it was his loved one, it's what he'd recommend - best of luck x
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Cathy! No tears so that must mean it's all good. Ear a bit sore where wig meets glasses but just need to adjust and holefully they'll get along ok! No nausea still or headaches, so feeling ok. Sleep an issue but should resolve once steroids stop.
Enjoy your afternoon in the sunshine. Xx
Cathysid
Member

Re: AUGUST '17 Chemo Starters

Butterfly - good luck with the shave. I'm sure you will look beautiful and rock your new headwear!
Helen - glad to hear you are back on track. It's so hard waiting and dealing with delays but by the looks of things it may be something we will get used to as time goes on.
Xena - hope the abx sort out your throats before the next one too.

I had my first TCH yesterday - felt great leaving the hospital - apart from bloated gassy guts from the steroids. Diarrhoea kicked in overnight but loperamide seems to have put a bung in it. Having an Epsom salt bath then planning on relaxing in the hammock in the back garden this avo as the sun is shining,
Love and strength to you all and your families,cx
Xena75
Member

Re: AUGUST '17 Chemo Starters

Morning all. Sound like your all doing well so far with second cycle and managing side effects. I hope it continues to be manageable. I have my second cycle due this coming Friday. I've had to go into hospital for a sore throat and am now on antibiotics for that, along with the injections for white blood count, hopefully all will be good to go Friday because of them.

HelenP
Member

Re: AUGUST '17 Chemo Starters

Hi ladies. 2nd chemo delayed yesterday because of white blood count of .6 on Weds, they like it to be at least 1.00, yesterday it had come up to 2,0 so all good for Monday as long as I behave myself and stay out of trouble for the weekend!!!
One day at a time...
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Cookie. I've had a decent day today, day 2. Took my steroid earlier than before so hoping for a better night sleep. No nausea 👏 a little muzzy headed but nothing to stop me. Head shave tomorrow 😳 It's coming out in handfuls, am worried about walking outside in case a gust of wind takes the rest! Then it's wig, scarf and hat time, unless I feel brave to go bare! Sound confident, but will be a wreck tomorrow! Xx

Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi butterfly, re:  picc. It's a sterile procedure to insert and they clean and change dressing weekly. You have to sign a consent with the usual list of side effects but I don't know if the picc has a higher infection risk than a port. So much info to try and take in . I'm sure they will advice you on the best option x

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Hi Claire, sorry you feel nauseous, I did a little bit but have had pills with breakfast so hoping they'll do the trick. Steroids had me awake in the night, but not fully conscious so tried to relax through. Managed to stave off the headache I had last time by taking pills before I needed them. Feel a little more in control this time, knowing what might happen!
Got an appointment for a PICC, need to call Monday to find out what the wait is for a Port before I make a decision. Got piles of leaflets to have a read through in the meantime!
Hope you have a good day, at least the sun is shining here 😊 Xx
ClaireH81
Member

Re: AUGUST '17 Chemo Starters

2nd dose done yesterday. I managed much better than the first but the nausea kicked in more quickly this time I'd only yous been home about an hr before I started to feel rough. They've given me an extra anti sickness drug to take at night only as it's also a sedative and that seems to have helped as only slightly nauseous this morning.
had cold cap again but I wasn't as happy with how she got it (I had a different nurse) and when she took it off the front of my hairline wasn't as wet/cold as the back so not sure if it will have worked as well...time will tell!
I hope you're feeling ok butterflyflyfree & everyone else who just had and awaiting their 2nd round xx
Sue C
Community Champion

Re: AUGUST '17 Chemo Starters

Hi Claire

Glad your Mum's doing OK so far.

The gcsf injections are excellent in boosting the white blood cells. Other than that its just a case of eating a healthy diet with lots of fruit and veg.

I found that they do cause abit of bone/ joint pain. A couple of times, I ended up taking some ibroprofen. But it is very short lived.

It's a good idea to keep a diary, as there are similar symptoms each cycle. At least you know what to expect next time, but the first cycle is a steep learning curve!

I think someone else on this thread suffered from chest and tummy discomfort....

Sending a hug xx

Claire137
Member

Re: AUGUST '17 Chemo Starters

Hi all, thank you for your messages of welcome and support. Taken me a while to read through the thread.

I went with my mum on Wednesday for her first FeC.

It was surprisingly ok and didn't take as long. My mum's second language is English so I will be there for her to explain everything. Even I got confused with al the tablets to take!

She has been very very well yesterday and this morning. some slight nausea which she took an extra pill for and also some niggly feeling in chest and tummy.

It's scary as we are waiting for the next SE.

She has to start her tummy injections tonight. For 7 days. These are for bone marrow and blood cells and we are expecting bone pains...

It is the unknown that is scary.

Though today she ate watermelon for breakfast and loved it.

Just trying to find out tips to help her boost cells etc...

You are all amazing. As someone watching on the sidelines I can't tell you all how inspirational and strong you are.
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Cookie, they mentioned the weekly visits but I'm lucky in that I'm only 10 mins from the hospital so that isn't an issue. What did they say about infection risk? Xx
Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi butterfly, glad you had your second cycle your now in front of me. I am also having 8 cycles and they put a picc line in before my treatment started. No problem putting in, in fact I've had it inserted twice as the first one moved a bit after my first cycle.  I was told it's much kinder for your veins  and as they also do your blood test out of it its less needles . It just means a weekly visit to dress and flush. 

Cookie x

Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Back from 2nd cycle and all good so far! Was a lot more relaxed and it all seemed a lot quicker. Just taken 2 paracetamol to ward off the headache that came last time! 

The nurse did have trouble finding a vein, so has advised me to consider either a PICC or a port for next time, especially as I have another 6 cycles ahead. Anyone any experience of either? 

Hope you ladies have had a good day. Xx

Cookiesim
Member

Re: AUGUST '17 Chemo Starters

Hi Xena

my bloods were okay but because I have a urinary track infection that's not clearing up they wouldn't do it as I expect it will make it worse I guess. On the whole I feel alright but I've had 2 infections since first cycle and I'm not sure what's side effect goes with what ! 

Sib
Member

Re: AUGUST '17 Chemo Starters

Good luck sending a hug. X
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Ali xx

Xena75
Member

Re: AUGUST '17 Chemo Starters

Morning! Those of you who have had their second dose of chemo delayed due to blood count, did you feel well in yourself, so were surprised by this result?

Cathysid
Member

Re: AUGUST '17 Chemo Starters

Sorry to hear so many of you have had the second treatment deferred. I know how frustrating that feels. Our lives revolve around these appointments at the moment!

I'm finally heading in for my first pertuzamab today and will be having the herceptin taxotere and carboplatin tomorrow.

Lack of sleep last night had me contemplating how I will use my time while I'm off sick. I'm thinking of trying to do the yoga mindfulness and relaxation courses at maggies to try and find my calm and patient self again.
Cath x

Ali S
Member

Re: AUGUST '17 Chemo Starters

Hi Butterfly, good luck for today xx
Butterflyflyfree
Member

Re: AUGUST '17 Chemo Starters

Thanks Sue xx
Sue58
Member

Re: AUGUST '17 Chemo Starters

Good luck tomorrow Butterfly
..I had the same UTI symptoms as you and was told no infection..but it felt like it...but my bladder was very irritated.... another FEC side effect? Hope you get a good nights sleep.. xx