AUGUST '17 Chemo Starters

Hi August ladies…hope you have all had a good weekend…
Well day 14 and starting to feel human again…boy has this docetaxel taken it out of me.!! I’ve never felt so tired and had so many toxic headaches…!! Day 5,6,7 and 8 were the worst although its taken till now to start feeling ok…the worst thing is the aches and pains in joints and the horrible slimy metallic bitter taste in mouth , my tongue went white ,my mouth went dry and so did my lips…I went of food altogether and spent this last week feeling so down and fed up…!!! I’ve lost 8lbs in the last fortnight so hopefully along with the other stone I’ve lost since chemo started the onc will reduce my dose as I asked her last time…!! (She had problems altering it on her computer screen, but she did say it needs reducing!!) Phew…better late than not at all…!!!
I found I could drink strawberry slimfast…that helped as it didn’t taste to bad…heinz mushroom soup was ok and diet coke to drink…but on days 4,5,6,7and 8 everything tasted rank…I struggled as to what to eat…thats probably why I lost half a stone…!! I just managed to sip cold tap water…but even that wasn’t wow… my liver seems to be struggling aswell…lots of pain …

I hope everyone is managing ,Sib, hope you are alright…I’m thinking of you x Fairy, Helen, Mary kate , Ali, Butterfly Xena, Mahjfarn, CK, Cathysid… were all a bit quite this month compared to others… big hugs to you all lovely ladies…keep strong xxx

Sue58
Thanks for the mention! We all react differently but it looks like dry and horrible taste in mouth which I had with ECs! Achy bones and muscles plus GSCF injections sounds as if I may just lie in the bath for the whole 3 cycles!!!:0
Not looking forward to it:(
Oh well, just hope for manageable again.xx

Hi Ladies I have been so unwell on Doxetaxol that i dont want to keep posting to scare any of you, though oncologist did say my reaction was extreme and worst she had seen after 1 dose. However day 26 after dose and very slowly getting better, still taste problems but courseof steriods helped with appetite. Tummy issues improving and fatigue not so completely debilitating. Losing skin ftom hands and feet and nails coming off feet despite being covered!.
Supposed to start weekly paclitaxoel and 3 weekly herceptin on 8th November. Ses look very similar but no injections, which my body does not tolerate, my bone marrow apparently went into complete overdrive! Does anyone have any experience of this chemo? Would welcome any hints and tips?
Alot of us are having a really tough time. I knew this would be hard but i really didnt think it would be this brutal! I wonder if its change of chemo or accumulating chemo that makes us so ill?
Sending hugs to you all, we need to dig deep to get strength to see this through. Xx

Hi ladies

Sib, sorry to hear that you have had such a bad time. Sounds like you had a really severe reaction. Glad you hear that you are slowly improving. I hope your new drugs are kinder to you. Please don’t worry about posting here, we are all here to support each other, especially when you are having such an awful time. We need each other to get through this.

Butterfly, sorry to hear that you had issues with your PICC line. Not what you need on top of everything else. I’ve read that other ladies breeze through T having had issues on FEC so you may be better than you expect. Hope it goes well for you this week.

Sue58, glad you are starting to feel better. I hope they manage to reduce your dose this time. I’m struggling with lack of tastebuds but I don’t get the metallic taste. Strawberry is the only flavour i can really taste. Not that it’s stopped me from eating at all!

I’m day 5 today and feeling ok. I’m tired and a little achy, can’t taste and seem to be either hot or cold. Although this is round 2 I’m still unsure what to expect as I don’t have the horrible chest infection making things worse this time thankfully. Have a good day ladies. Hugs to you all xx

Sib you are not alone I was very poorly after my first Doxetaxal I also ended up neutropenic sepsis 2nd time I had a very severe anphalactic reaction during infusion mine had to be stopped too had a delay in treatment to help me recover and now on a new drug called abraxane so I could continue my onc said is is quite unusual to have such a bad time in Doxetaxal but I obviously am allergic so no more for me!
It’s really just to reassure you that on my new drug I have been good yes there are SE but I don’t feel like I am deaths door like I did on that!! Hope you go well on your new drug I’m sure you will be fine x

Just to also point out for you other ladies these kind of reactions I have been told are quite rare and are not what most people go through on the Doxetaxal Sib we have just been that unlucky % of people xx

Sib and Mishy…you two have been very unlucky to get these extreme side effects…I feel for you both with what you both have gone through…hope you get through the next chemo treatments ok… xx
Butterfly, sorry to hear about your blood clot hope your OK…I hope I havnt frightened you all off from your docetaxel…I seem to have had a stronger reaction to most. And luckily my dose has been reduced by 20% and also extra steroids (one a day after the 8 for 3 extra days to try and help me) which I am grateful for…
Ali, my taste is still odd but less metalic now… but still find it hard to eat food with no taste…lol…hope it returns soon …I have found sucking on Aldi butterscotch sugar free sweets help with the lack of saliva in the mouth and strawberry flavours are ok with me too…
Big hugs to August ladies with treatment this week… xxx

Hi girls a positive thought for you all!! I live near a lass who is post bc and all of her treatment is done and dusted op chemo rads and herceptin was talking to her tonight and she had a relatively good experience with a her chemo Inc Doxetaxal no infections high temp terrible SE just the normal which most get she says rads are fine a bit of a chore going back and forward to hospital herceptin injections again coped really well with and her hair is looking great lovely and thick a bit curly but a good covering and she is 13 month since first diagnosed I wanted to share that as I know when you are facing new drug on chemo it is easy to panic when you here of other peoples bad experiences, but there seems to be plenty of people who get through it without being too badly affected with SE ?
Keep going ladies you are all coping really well and before you know it it will all be finished ??

Mishy
Thank you for that reassuring post even though you found Doxataxol tough! Im glad to hear your new drug is manageable and hope they treat you well. I stsrt Doxataxol next week and am getting nervous.xx

Thsnks Mishy its great to get positive outcomes from people who have completed their journey. X

Don’t be nervous as I said I think most people really are fine on it x food luck x

i too find docetaxol really hard, ive jad bad diarhea the twice ive had it bit am also on perjetta which i think is contributin… 27 days left until my last one

Mishy! That made me chuckle ‘Food luck’ you typed! Luckily not the other way round???

Had a lovely relaxing day at the local cancer care centre today. One to one with nurse, reflexology, lunch, mindfulnesszzzzz and a talk from a Macmillan lady and came home with a load of books!!!
I advise you to see of there are any local centres near you like this. Im on an 8 week course!

Ali S
Glad to see T is treating you ok apart from dry mouth. I will just need to see what happens with Herceptin and T.xx

Sib, Fairy & Sue
Sorry to hear its been difficult for you but it will soon be done. Hope it gets better soon. Long relaxing baths and plenty of rest.xxx

Roght, going to raid rhe fridhe now.

Hope you all have a good night.xxx

Hi everyone,
I’m sorry so many of you are struggling with T.
Sib - hope the new drug treats you better.
Mishy - sorry you’ve had such side effects too.

Fairy - are you taking loperamide for the diarrhoea? I take 2 on the first sign of it then 1 more if it hasn’t worked in an hour. I also eat bland food like rice, potato, scrambled egg(fruit and veg, especially tomato, fatty food and dairy tend to set me off).

Sue - hope you get ina good week before the next round. Do report all you problems to your Oncologist- they might reduce the dose or give you more steroids to counteract it.
Butterfly- gosh you’ve had a hard time too! Hope T treats you better. Good luck this week.

Ali - glad your second round was less awful than the first.
I can’t believe strawberry tastes ok for you - I can’t face anything sweet or any fruits - strawberries especially start to taste like salty metal after my chemo!
Melly - sort to hear your flu vac made you so ill. Hoping you are starting to pick up now after the chemo. Remember daily Epsom salt baths and a short walk if you can manage it. Sip sparkling water, potato is my favourite chemo food(isually tastes ok even after chemo) rest lots, nap lots. Try to drink lots to flush it through. Moisturise daily. Soft toothbrush, fennel toothpaste is good, mouthwash with alcohol free biotene or aloe Vera mouth wash twice a day, doctors can give pain reilief mouth wash - diflamm, too. It works well.

Ck - try not to worry. Remember your positive affirmations when the chemo is going in. I’m on my 4th T (with carboplatin c perjeta and herceptin) this week and apart from intermittent diarrhoea, nausea(but that’s the carboplatin), and week long hangover feeling, as long as I rest and take my baths it is bearable. It has also got slightly better each time as my side effects have been managed better and I know what to expect,

Good luck this week everyone,
Cath x

Thanks Cathysid…I saw oncologist Monday and my dose has been reduced by 20% for monday and also extra steroids to help also…
I’m having a fairly good week now although food still dosnt taste right, its better than last week but still not right…I’ve got a cough which I’ve had nearly 4 weeks !! and pain in my liver most of the time… I did mention them to oncologist she said a cough can be a side effect…and liver is coping with lots of toxicity… but to ring if they get much worse…
Hope everyone is OK ? Hugs to all xx

Good I’m glad you have had dose reduced it should make things more bearable for you x
Potatoes are the best foods for chemo! Bland but tasty

Thanks Michelle. I’m finding potatoes good…!!!
How did you get on today? Are you all done ? Xx

Yeah all done just resting and waiting for SE to kick in over next few days!!!

Hope we are all doing well on our journey and the ses are been kind.
Im now day 30 after 1st docetaxol and definitely on the mend ! Still problems with taste and nasty sore peeling hands with sore nails but definitely getting there. Fot my 1st paclitaxel on Wednesday, all being g well. Unfortunately my son has terrible head cold and im terrified i get it as i have been told to avoid infection at all costs. Really dont need any further hold ups , so want chemo part over by Christmas.
Saw surgeon re my further mastectomy and reconstruction (fue to brca2 diagnosis). Seeing plastic surgeons before Christmas and when im well surgery will take place. Such alot to take in.
Sending hugs to you all. Xx

Hi ladies, how are we all doing? I’m day 9 from second T and I’m doing ok. SE have been manageable so far and I’m hoping it stays that way. I’ve been struggling more mentally this time as just feel fed up with it all. I’ve also been told I’m going to have genetic testing and I’m now worrying about the results of that (although I won’t get them till next year).

Sib, glad you are finally feeling better. I hope you avoid your son’s cold. I’m sorry that you are having to go through a second operation after all this.

Mishy, Butterfly hope you are doing ok after your latest rounds and that all other August ladies are doing well xx