May chemo starters 2018

[tanya]

Hi Leanne my hair was very dark too and now it's growing grey around the sides and back and black on top it feels quite fine. Let's see how it goes.

[Leanne17]

Hi all
Se are starting to get a bit better although I’m still in bed at this time 😬 didn’t sleep at all last night.
Everyone is talking about radio after their chemo. I haven’t been told I’ll have to have it. I had bilateral mastectomy and diep reconstruction back in March. Has anyone els had same and having radio??

@tanya. My hair is also growing back. I think because I had extra 2 weeks between cycles 3 and 4 due to holiday and sun helps hair grow fast. But I also heard it can grow with T so haven’t shaved to see how it goes. It’s looking very grey at moment tho and I was dark

Keep going ladies
Leanne xx

[Linda Corinne]

Have just found out Holland and Barrett dont sell mauka honey 15+ anymore from the real food company so where should i get it from now? Am abit concerned it may not be someting i should have if unpasteurised? Can anyone advise re this please? Ta.x

[Tracey Mac]

Thank you everyone for the supportive comments during T, yesterday was worst day ever. I actually cried with the bone pain at one point. Managed to sleep on and off for 24 hours and I have woken with less chemo foginess and my tongue is not so coated today.

It is definitely the time to take one day at a time during this. I too, after reading your comments am hoping that this first one is the worst.

Stay out of A and E tropic and keep monitoring that temperature xx

[tanya]

Hi everyone sorry to hear the dreaded T is causing everyone worse see. My second T was today and after bloods and clinic on Tuesday my dose today was reduced by 20./' to give my body a rest my second lasted for 19 days on last cycle and the rash on my neck hands and top of my legs were a delayed reaction. I now have antihistamines to take daily to try to avoid this again. I'm hoping se won't be so bad this time fingers crossed. My hair has started to grow back this week,I asked today if this is normal and was told that some women experience this and that it's not uncommon for your hair to grow back through T so I'm not shaving it anymore and see how it goes, has anyone else experiencing this. Well last T on 24th so nearly there and radiotherapy appointment booked for 8th for scan and tattooing so getting there slowly but surely xx lots of ❤️ to you all keep strong we're nearly there. Tracey hope your feeeling better soon x

[Michelle21]

Hello everyone, it sounds like you are all having a tough time on the Docetaxol. I also found the first the worst for many of the side effects but stay strong and keep ticking off the days. It will come to an end soon and the results will be worth it xx

[mustardandgrey]

That should read docitaxol number 2 🙂

[mustardandgrey]

Hello ladies!
I'm five days post docitaxel number 5.
My first docitaxel was definitely worse for throat, mouth ulcers and bone pain, although the bone pain is ramping up now.
The mouth ulcers were horrendous for me on the first docetaxol but barely errupted on this one.
However, my throat feels more "coated" and taste is not what it was.
The fluey symptoms have been worse for me this cycle, although the positive is that they kicked in on day 4 rather than day 3!
But the fatigue...oh my goodness, completely whacked all the time.
Spending a lot of time horizontal as the smallest things are tiring me out...even walking to the post office earlier I found myself having to remind myself to put one foot in front of the other!
It's a long tough journey, but each cycle is one step closer to the end, and my last cycle is due on 20th August.
Suddenly, the end is in sight, whereas when the chemo was all marked out and planned way back in April thd finish line seemed such a long way off!
Second planning appointment at Radiography on Monday, which is also another step forward.

Keep positive, ladies.

Sarah xx

[Jencat]

Hello, sorry to read that quite a few of you are suffering after having T. I'm from the Oct thread and for me, the first one was definitely the worst, so hoping that will be the case for you too x

[JemPD]

Leanne, Tropic and Tracey so sorry you are all suffering from se of the dreaded docetaxel. I’m day 10 now post 1st docetaxel and a nasty dose of tonsillitis. Last night was the first time I had smiled😊, keep going there is an end to the bone pain. Know what you all mean about mouth and tasting nothing- ice cream has helped me. I’m trying to decide which meal I would like when my taste buds return- what will you have? For me sea bass in a lovely sauce.
Have read a few posts on earlier threads and there appears to be a consensus that the 1st docetaxel is the worst- I’m holding on to this for us all.
Tropic - sorry you ended up at a and e- not the most pleasant experience.
We are nearly at Greece, this warm weather is just helping us acclimatise!
Take care Jem xx

[Leanne17]

Hello ladies. I also had my 1st docetaxol last Friday. And since Sunday have not been great. The label on my steroids said for next chemo so didn’t take them when I should of very confusing labelling. Rang triage and to just keep an eye. Temp been fine but bone pain starter yesterday and is horrendous. So taking ibrobrufen and lost of rest!! Mouth was sore for few days but has passed now. 1st time for me to feel so unwell so can’t really complain just need to ride it out.

Hope all side effects pass soon for everyone
Hugs
Leanne
Xxx

[Tropic_al]

Hi Tracey Mac...I'm also day 5..spent last night back in A&E following the rules as my temp was high all afternoon and into the evening and a really sore throat.  So another late night of tests. Was fine but spending today sitting still, resting and with a fan by my side! Not heading back to the madhouse of the hospital again if I can help it.  Like you I have pelvic and thigh aches and lower back but bearable for now. Just tired. Bring on cooler temps.i too sleep on and off but at least I don't have to get up for work if I don't want to as working if and when I can.

Food has definitely become a little dull as nothing tastes so great now. I love curries but even worried I'll start not go enjoy them which is a shame.

Hope you're all well today and make the most of the weekend.

Bring on Greece!

All the best ladies,

Tropic X 

[Tracey Mac]

Day 5 post 1st T - can't sleep past 3-4 hours of intermittent sleep. The lack of energy is draining. I have a white coated tongue but no ulcers thankfully. The taste changes aren't pleasant. I have managed to eat yoghurt, mashed up boiled egg and soup since Monday.
Chest, pelvis and thigh pain started last night but not unbearable. Monitoring my temp regularly.
Resting, dozing, reading and more resting, just gotta roll with it until it passes.
I continued to cold cap and it was okay after the first 15 minutes despite the thinning on the top of my head, like Tropic, I will continue to use it as i have persevered thus far.

Hope you are all managing side effects and coping with the returning sunny westher ladies, we got this 👍🌞👌🌞👍🌞

[Tropic_al]

Hi all,

Back again..day 4 after first docetaxel and Herceptin, permuzutab was last Friday. Long days as always. This cycle has hit me harder than the FEC and I'm so tired and achy right from the first few days. So hot again here up to 30 degrees which isn't helping. Monitoring my temp which is quite high on the borderline today, but hopefully it'll drop again and I'll avoid a trip to hospital tonight. Can't take paracetamol for aches just in case. Hate the uncertainty. Have a sore throat so starting fluconazole and Difflam early tonight to try to stop any issues there. Totally different feeling than when on FEC.

For the cold cap girls it is at least better on T as yes only 20 mins afterwards instead of 90 mins I had on FEC...such a relief. Have still lost quite a bit of hair on top but maintaining the bandana look and hoping to persevere on to the end after this effort. The first 10 mins are horrible now that my hair is thinner but just about bearable.

We're all doing so well...keep on going ladies. I'll be back feeling better tomorrow hopefully.

Best wishes to all,

Tropic x

[Joandbasilthedog]

Hi all Just wanted to say hope everyone is doing okay . After the 4th cycle last Tues 24th I feel like hit a wall. My treatment stays same throughout ( Hecp/ perjecta/ docetaxal/carboplatin) but since the chemo i have felt so nauseous and sick ... been sick a couple of times , had anti sick meds changed . Yesterday was first day out of bed and dressed so turning corner hopefully but as I sit here now it feels like those first weeks of pregnancy sickness . So frustrating as I was beginning to think i could cope with these cycles so feel very low. Add to that should have been driving through France on my hols today .... nevermind ... two more cycles to go .. only hoping i get a bit of a good week next. Obviously summer hols with kids off is not great time for me to be sofa lying . I know once chemo over then op is on so it just feels like this long road that I just want to stop and say hang on here . My oncologist also told me last week it was her last appt with me as she was retiring that week .... rationally not a problem but feel like she understands me and have to start again with new . Sorry 😐 for being negative.... i wanted to say all your posts do keep me going . Keep it up xx Ps if my diet has consisted of heinz veg soup and oxtail soup so if you see my stressed husband lunging in the supermarket for the last can !! 🤪

[JemPD]

Linda sorry that you have to worry about ahingles on top of everything. Can you give your nurse a call? If not what about the helpline on here- I’d just get advice to put your mind as ease.
Sounds great you are back at work - hope se are being kind to you, esp loo situation,
Jacq - last docetaxel ✅- again hope side effects are ok.
Tracey and Tropic_al - hope all is well with you after your 1st Docetaxel.
Sarah - hope mouth sores not too bad - I’ve suffered badly, tonsillitis and mouth sores are not good - can’t taste anything at all, however can swallow again so on the up😊
Enjoy the ☀️In prep for Geece!! ☀️🎉

[Linda Corinne]

They are not infectious but back at work although she feels crap I am not taking steroids now so I guess its ok. Apparently once scabbed over its not infectious.She found out yesterday she had it but didnt get a sick note as not infectios.x

[ktk]

Hi Linda. If you are taking Dexamethasone you must avoid Shingles. It is mentioned several times in the leaflet!! Kx

[JacqB]

Hi Linda
It’s so hard to know what to do for the best. I know from experience how sick the herpes/shingles viruses can make you. Where are you at in your cycle? If at nadir I’d say stay home. Hope your are doing ok.
Jacq xx

[Linda Corinne]

Just been told someone at work has shingles although she is off today. She works in a different building from me but on the same site. If she is at work as feels ok to come in even if she still has shingls should I be here? x

[Michelle21]

Hi Linda
I had the same problem as you after one of the first times I washed my hair it matted up on top of my head. Even though my daughter spent ages painstakingly combing it a lot of hair came out and after a few cycles a lot of skin was visible.
I had 2 FEC and 4 T and as you know I’m done now. Although I’m in week 2 so still shedding some hair the bits that went on top and around my ears have started to come back. I have at least a cm of growth in parts. So hopefully yours will start to grow before you get to the end of chemo x

[JacqB]

Thank you Linda
All ok for tomorrow, last of my docetaxel combo, we will be on different paths now so will not meet at the hospital but I will be keeping up with everyone here. This forum is such a blessing. 😊
I have had similar problems on T. I feel that the chemo and antibiotics have conspired to give me IBS! It can get very tiresome and painful. Sudocrem is my friend 😉 if I have to have FEC, I hope it’s a little easier 🤞
All best wishes
Jacq xx

[Linda Corinne]

Yes Jempd 20 mins after Docataxel is what i was told. I just used a paper theatre cap under the cold cap and didnt wet hair or use conditipner.I have ordered 2 hairbands to try to cover top of head where its thin. Thank god i still have hair as they wouldnt let me use the cold cap the first time i had Docataxel. I just feel self conscious of the top bit where i had a matt cut out. Just hope it looks ok when it grows back.
I have been ok on my 2nd Docataxel apart from my mouth is very dry and bleeds when i brush my teeth. I am now going to the loo twice a day after going every 2 days. I use chewing gum and lollies for my mouth. Not sure what I can do re going to the toilet alot though as last time it wore me out and ended up going home from work at 10 as was so tired after going to the loo 3 times. It got painful too when i went to the loo and bled on 1 occasion so i stayed off work the next day and rested.
Hope everyones doing ok.
Jacqb hope your chemo goes ahead tomorrow. I doubbt i will see you again now.x

[JemPD]

Morning Tracey Maci hope you are doing well today. Re cold capping on T- yes a much shorter time- it was a pleasant surprise for me. My nurse showed me the chart with all the chemo drugs on and the time lengths for each. Xx

[Tracey Mac]

Forgot to ask my fellow cold cappers - on FEC I had the cap on 30 mins prior, during and 45 mins post chemo. My nurse yesterday said I only needed it on 20 mins post T, have you all had this same advice, he couldn't really give me logical reason just said it was protocol.

[Tracey Mac]

Thanknyou JemPD and Tanya,
Just got home from 1st T, afternoon session..
No idea how I will feel but at least I have all your experiences to know what is normal and what to expect.

Sorry Tanya that this has hit you hard, I am sure the nurse will discuss it with you at your bloods appointment tomorrow. I am hoping to return to work next week which has been my pattern on FEC but ibwill see how this goes with different side effects.

Hugs to all us ladies, we can do this xx

[tanya]

Good luck today Tracey sending u a hug xx how is everyone doing. My first T has hit me to be honest I am constantly tired and only have the occasional day when I feel ok. I have rashes on my both hands and my heels on my feet are constantly like pins and needles. I have bloods tomorrow and fifth cycle on Friday but don't feel like I'm getting over this one yet. I sailed through the first three cycles so I think this one has hit me like a bolt out of the blue. If all goes to plan my last cycle will be Aug 24 and then three weeks off then 15 rads so keeping positive and looking forward as the end is near all my love to everyone xxx

[JemPD]

Tracey and Tropic_al hope all goes well today with first docetaxel. Thinking of you.  Sorry you didn't sleep Tracey😣

Herts- I am hoping that you haven't had any infections this cycle 😀. I was remembering your stories of your fellow patients yesterday whilst at my Casa NHS! I'm home now 😀, still feeling pretty ropy with tonsillitis but hoping by tomorrow will feel more me like.

Mouth issues - sorry lots of you are suffering too - my top tips -Difflam and GelClair - someone suggested this after last cycle,as did my nurse, the combo is amazing- the GelClair allows you to be human again and eat. My doctor hadn't heard of it but was happy to try.

As Herts has mentioned it would be good for us to support each other through the next roller coaster.  Who has already had surgery? For me I had mx and reconstruction before chemo, due to small margins  skin side I will need rads next - waiting to hear from this consultant. I am hoping to have active treatment finished by end of October- booked to go away with family- I think by then I may just sit by a pool and sleep! 

Quick question - those who are adjuvant chemo - have any of you had scans of any sort?

Jem xx

[Tracey Mac]

I am going for my first docetaxel today. Tropic....have you.managed to sleep after dexamethosone, I killed it with 3.5 hours tonight!!
Not looking forward to today and especially after reading about some.of you ladies suffering with mouth problems but at least we will know how to treat it if it happens.

[mustardandgrey]

@Hets67 I was given fluconazole steroids for a really sore ulcer filled mouth while on Fec. I didn't use them at the time as I wanted to see if they would resolve themselves with just Difflam, and they did. However, my mouth and throat were so bad on docetaxol that I took the whole 5 day course and they really did work xx

[Hets67]

Seems some of us have already had ops and some still to come - maybe we can support each other through that next stage as it comes?

@jemPD that sounds dreadful I hope u feel better soon. Glad they let you out of hospital because sometimes it’s quite hard to get out!

I haven’t suffered so much from sore mouth - ‘only’ on FEC and it seems to be worse with the other meds. However in the last few days it’s been worse - I think because my white blood count is v low because I haven’t had the GCSF injection. It’s bearable and lots of mouthwash is helping. However does anyone have any advice for increasingly worse sores on the corners of my mouth? If it carries on I won’t be able to open my mouth to eat! @Shi re music, I watched Almost Famous yesterday - feel a bit of Tiny Dancer down the aisle could be a good start? 💃💃💃💃

[Shi]

Don’t know if it’ll help ladies but feel bad that just drinking water and staying off tea and coffee has helped with the hot flushes, it seems to calm mine down well 😘😘mojitos 🍸🍸🍸all round excellent choice and who’s up for a quick 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻In the aisle to hips don’t lie by shakira 💃🏻💃🏻🕺🕺💃🏻💃🏻💃🏻Shame we’ve not got dj Karana on board she used to upload the music to our thread, I don’t know how to do it 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻 😘😘😘💕💕✨✨shi xx

[Tropic_al]

Hi JemPD

thanks so much and hope you feel better really soon. Glad you were looked after so well. Rest up and take care of yourself.

xx

[JemPD]

Thank you so much for your replies and support.  Well it turns out I wasn't suffering terribly with side effects from the dreaded docetaxel, but I have a nasty dose of tonsillitis! My temp was high yesterday and called the nurse who sent me to a and e, no room on oncology- they were really good and found a bed on oncology for the night. Lots of fluids and iv anti biotics and feeling a little more me like now. On my way home soon armed with anti biotics and need to rest from this.

tropical_al - hope all goes well tomorrow.

We are all getting to Greece where the amazing Shi will welcome us as we descend from the plane that is chemo! 

Xx

[Tropic_al]

Hi all,

Shi..you're hilarious. I'm handing out Mojitos all round from the galley if that's ok?😎 If you don't like it I'll drink it!

Had my first Herceptin on Friday..very dull long day. Didn't feel too bad,  although lots of steroids today for my first docetaxel tomorrow..feel a bit spaced out...eek...not looking forward to it. How lovely to spend another day in hospital... Not.

i also seem to have ramped up on hot sweats at the mo. It is so lovely to have a few days away from the heat before it builds up again. I'm in the south east where it's due to be 30 again next Friday..day 5... That'll be pleasant.

Seems like some of us are already looking forward to the end of the chemo. Can't wait for it to be over but just need to focus for now. Hope all of the sore mouths feel better soon. I'm going to be on alert for that as I seem to get affected by that. difflam at the ready!

Hope you all have a good Sunday and I'll be in touch next week...hopefully not whinging too much.

Take care all xx

[mustardandgrey]

Hi, JemPD!
I can sympathise with the bone pain and am sending you a virtual hug.
It will pass.
For me, the side effects kicked in on day 3 with horrendous mouth ulcers and a sore throat.
The next day the bone pain started, with the worse days being 5 and 6.
But by day 8 all side effects had subsided, except for the night sweats and fatigue, which seem to have continued all cycle.

I have my second docetaxol - and 5th of 6 chemos - on Monday.

Hope you feel better soon,

Sarah x

[Shi]

For my t darling, Epsom salt baths by the bucket load have always worked well for other threads for bone pains on the t my lovelies ❤️❤️❤️Keep focused on those 🛎🛎🛎🛎in your units and if your unit doesn’t have one then treat yourself on amazon there are even ones with 😁faces on them and trust me you will be beaming and skipping with joy after the last one which is soon, keep focused, keep safe and who’s in the galley doing the drinks trolly this time? Mines a la Mumba with a oozo on the side and captain costas would like a Athens smooth landing over ice 🍷😘yammas 😘😘💕💕✨✨✨shi xx

[Michelle21]

Hi Jem, I’ve just finished chemo and was fortunate not to suffer with joint pain however someone on my thread did and because codeine wasn’t working she was given tramadol by her GP. I found I got more tired after each cycle, but didn’t have fatigue as such. Exercise does help with fatigue but not much help if it is too painful to walk. I would say speak to your Doc if it continues especially as this is your first Docetaxol. I hope you get sorted x

[JemPD]

Hi Linda thank you- I have walked at least 5km everyday but not made it out of house in last 2 days😖.
Take care xx

[Linda Corinne]

Jempd. I only had 1 night of bad lower back pain on Docataxel due to injections I think they told me at hospital. I walk daily and have a high pain threshold. Do you walk? Am thinking of running again now cooler too to help with low neutrophil issue i had on day 21 cycle 4. x

[JemPD]

Shi thank you for always making me smile 😍
Some help please lovely ladies I’m 5 days into 1st docetaxel, yesterday and today feel absolutely terrible - bone pain in joints, legs and arms, feet hurt to walk on- gone from a fit 48 year old to a 90 year old in 1 day. The fatigue has really ramped up too. Those of you who are ahead of me in cycles -encouragements please- taking paracetamol and codeine, resting, drinking lots. How long did this bit of the miserable roller coaster last? Sorry to be a moaning miserable one today .
Hope the slightly cooler weather is helping you all. Xx

[Tracey Mac]

Thanks Shi for the encouragement jist when we need it.

Hets, I will be having reconstruction at some point after having a mastectomy 4 months ago but my surgeon wants to wait until all chemo and rads completed so this will next year for me. I haven't wanted to discuss it with them until now but I feel ready to plan for the next steps

[Shi]

Bing bong captain costas has asked me to tannoy a message to remind you beautiful ladies to get your meet up arranged 💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻 It comes round quick once the chemo plane lands so he wanted to remind you all and it’s a good excuse for a shopping treat of new outfit 😁😁😁bing bong 💕💕✨✨✨shi xx

[JemPD]

Leanne so pleased you had a great holiday, sorry you have to come back to more chemo. Hope 1st docetaxel goes ok tomorrow- had my first on Tuesday. So far no se but this evening getting that awful achy feeling back😖. Hoping a good sleep will help.
Herts - I had single mx in April with LD flap- very happy with results,scarring is doing well. Hope you are doing well today.
Xx

[Hets67]

The pathways are so different. Are any of u due to have mastectomy with reconstruction? I had single with implant in February and so far all good. I’ve got another friend who had double with implants and full nose clearance on one side 3.5 weeks and she’s doing amazingly well!!! There is light at the end of the tunnel 👍🏻👍🏻👍🏻👍🏻

[Leanne17]

Hi all. Been keeping up to date with all your posts hope everyone doing ok.
Got back Tuesday from an amazing 10 nights in sunny Gran Canaria. Lovely holiday and nice to have a little break right in the middle of my chemo. Got my 1st of 3 docetaxol tomorrow. They have to use my right arm from now on as my left veins are completely burnt out and have a strange lump on my fore arm but they think it’s just a bit of fluid under the skin. My last cycle is due on the 7th September. Haven’t been told anything about having radio so fingers crossed that will be me done ✅ 🤞
My hair has started growing back. Think it was the extra time between cycles and the sun. See if keeps growing through next 3

Hugs to all
Leanne xxx

[Linda Corinne]

I may finish on 15th august as thats my 6th or if i have 7 5th sept but wont know til 14th august.

[mustardandgrey]

@Hets67 I think I may be first over the chemo finish line, barring hiccups, as my last chemo should be 20th August. And then a three week break before 20 rads sessions - it was supposed to be 15, but at the radiology appointment on Monday they'd added a fourth ''booster'' week, which threw me a bit as I had a finish date in mind. xx

[JacqB]

Hi Linda
It will all depend on the surgery results. I’ve been told to expect four FEC but that could change. I’ve gone into this with the understanding that it will do no more harm than standard treatment and there is a chance that FEC won’t be required. They have assured me that my tumour has responded to docetaxel so I’m sticking with the plan and hoping I’ve made the right choice.
Jacq x

[Linda Corinne]

Jacq have they said you will definately need 4 FEC as if so what is the benefit of being on the ROSCO trial as normally you do 3 FEC and 3 Docataxel so you will do 8 instead of 6 cycles? The more cycles you do the more damage you can do to your body. I am having 6 or 7 cycles as i found out today the reason my surgeon wants me to do all chemo before the op is to minimise surgery to breast and axilla although i am not having any more lymph nodes removed.thought i would ask as the oncologist asked me and i said i thought that was why.x