Hi Gigi good to hear you sounding so chipper! I quite fancy seeing on Chesil beach, I read the book a few years ago so can’t remember the full story. Glad you enjoyed your evening, we really do have to make the most of when we are feeling good.
Your holiday sounds great too Fiona, sounds like you are enjoying yourself. Are you visiting family too? If so I expect they are pleased to see you, it’s diffcult at times like this when family are further a field.
Well I had round 4 yesterday. It all went well and was a lot shorter than last time as less observation periods for herceptin and Perjeta (Pertuzumab). The dose of steroids has gone up since starting docetaxol, I take them Thursday to Saturday and they really mess with my sleep so it takes a while to get to sleep and I am awake early. I have also learnt that they are the cause of the heartburn and maybe even the swallowing problem from last time so I have been taking fastab since Thursday too so illl see how that works out this time. I am going to take more immodium in the first and second week as it does ease off a bit for the third week. Finally I have stopped using the mouth wash to try and prevent further staining on my teeth and am switching to salt water. I’m hoping all of these little changes will just make it a little easier throughout. But if not the problems are on and off over the first 10 days and I can do that!
I hope everyone else is good x
Hi Everyone
looks like everyone is doing well and great news on everyones results etc.
For me it has been a busy week with lots of information to take in and process. Just want it all to end and get back to something a bit more normal. My skin is in awful condition and the chemo rash on my hand has extedned so both arms look horrible now. Just hoping it doens’t move to any other skin areas and delays the DIEP. Not sure how long it takes to clear after the end of the chemo.
Anyway i am fed up with moaning about problems so promise my next post will be more possitive.
All the best for the coming week to you all.
Hi everyone hope you all had a lovely weekend. Mine went well. Christine I went GP Monday for skin infection and got prescribed antibiotics and cream and it’s completely cleared up maybe you could get something to help your rash too. Michelle how’s your sleeping going? I slept in so late so can only hope I manage to sleep a bit tonight. But worried about Docetaxel and her cep tin starting on the 18th reading your posts are quite reassuring. Got work tomorrow and didn’t do any marking this weekend so got a heavy week. Having an observation Thursday but that should be fine. Wanted to get it out of the way before I have this next chemo in case I have an allergic reaction. Saw a friend today who I thought had moved on coz of my treatment. Turns out s/o in her family is v poorly so it was lovely to see her and connect again. Looking forward to the week ahead might even go cinema again. Hoping to bake tomorrow after school. Hope you feel better soon Christine. Take care everyone xxx
Hello!
How is everyone doing? It’s very quiet on here at the moment.
Dorabel how’s things with you? Are you just entering week 2? Hope everything is ok and no more infections. Christine I hope you have managed to get something for your skin and that you are feeling better. I too long to feel ‘normal!’ Gygi not sleeping well can have such a negative effect on moods as well as recovery can your GP give you anything to help? Fiona is it today you are driving back from Scotland? The weather was certainly kind to you for your trip I hope you come back feeling ready to face your new regime. Sarah we haven’t heard from you for a while, hope it is going ok.
So far this round has been better than my last one, my plans seem to have worked and also I have drank loads of fluids this time. I am still walking everyday and in this weather it is lovely although I find that I do spend a lot of time resting afterwards at the beginning of the cycle. Hopefully by the end of the week I will be feeling totally ok and ticking off the days until the next one. Soon we will all be closer to the finish than the start x
Hi
well i had an appointment booked with my oncologist anyway so this evening she looked at the rash on my arms and the problems with foot pain and cracked skin. the result is a prescritpion to pick up on friday after chemo for steroid cream and antihistamine for my arms and i need to buy foot cream with Urea in it to help keep the crack in my heel from getting worse. I was due to have three more paclataxels but she has decided to move this to two. This is mainly due to the foot problems that can become permanent if left too long. Walking has become a problem and i have misssed being able to walk to the hospital. I am pleased that i onky have this friday and the following friday to go but I was hoping to be able to do the full course. she assures me the omission of the last one will not be a problem.
schedule of future treatment agreed with herceptin injections starting friday 29th (I have had 4 infusions) and the Zolades starting three weeks later. There was a discussion on where to put the Zoladex pre DIEP and the nurse said they have been puting it in the side which is still covered by the licensing agreement that it must go in the tummy (Surgeon said not to use the tummy). Anyone else had it put in a non tummy area?
DIEP now due for begining of AUgust which seems a bit soon to me but i am keen to get it all over with.
Feeling more positive with an end date in site to the chemo at least. Looking forward to a couple of summer concerts too in July but i assume i will still need to keep my skin covered and avoid the sun.
Hope everyone else is doing well
It’s a nice thought that we’re moving closer towards the finish than the start. Good news that this cycle has been better for you, Michelle. I’ve found the cumulative effects of chemo have made the nausea & fatigue worse this time. At least I won’t be whacked with EC again though I’m not sure docetaxel will be an improvement.
I hope the treatment for side effects on your skin work quickly, Christine, & that everything goes well with the DIEP. It’s a lot to endure. If the cut from 3 paclataxels to 2 is not going to cause a problem then it’s good that you do not have to have that 3rd treatment. I hope the crack in your heel gets better soon. I’ve seen the skin creams containing urea in the chemist’s and they do help.
Not feeling sick tonight is wonderful. I’ve never enjoyed normal so much as during chemo.
Hi Christine, CCS footcare cream is excellent if you’re looking for a suggestion as there are a lot of creams out there. I’ve been using it twice a day for about a month and it’s really helped my heels which had started to crack. It has 10‰ urea content. I hope that the prescriptions will help with the other skin issues.
Back in London and its nice and sunny. The garden has exploded while we were away which is lovely to see. A friend is coming over to see me today in advance of tomorrows Taxol so that will be a nice distraction.
Sounds like most of you have got over the last hump and enjoying a better few days which is great to hear and I hope continues.
Have a good day, x
Thank you for the advice and i have just been out and bought the CCS cream. Smells really nice too so hopefully that will be one problem easily fixed.
I think it was the two reactions together that made her cancel the last treatment. I will be having 11 of the 12 doses and she said that would be sufficient. The problems could become permanent if left so i guess the benefit of the chemo didn’t out weigh the suffering.
Feeling better today and mentally i am feeling much more positve and able to deal with things.
Glad you are on the way to sorting the cracked skin problem Christine and I’m sure you have mixed feelings about one less chemo. I don’t know what is a reasonable time to allow between chemo and your reconstruction, hopefully by August you will feel recovered. I’m sure it will be great to move on to the next stage, are you having radiotherapy at all? I’m pleased you are feeling mentally better, everything is tough when you feel low. I was on a downer yesterday. I think it was due to the steroids, well I’m blaming them for everything else! I found myself thinking about a friend who has barely contacted me since my diagnosis. I though we were good friends. A group of us went to Edinburgh in February for her birthday. I made her a birthday cake. But I haven’t heard from her for a month until this weekend when I invited her and a few others over, she can’t make it which is fine but didn’t even ask how I am doing. She was even told about my recent good results by another friend and hasn’t sent a message about that. I feel really let down by her. I know I shouldn’t waste my emotions trying to figure it out but when you are on a low it’s difficult.
I am feeling more upbeat today and surprisingly have quite a lot of energy, certainly more than this time last cycle. In reality my energy is probably less than my pre chemo self but like you Dorabel I’m grabbing on to every tiny shred of ‘normal’ i can! Hopefully you won’t have the nausea with the Docetaxol, I havent and although there are other side effects to contend with I found the nausea particularly yuk.
I have had my CT scan today, another new experience. I sat in the hospital thinking this is what my life has become, but I must keep it in perspective as hopefully this is just a tough time of my life that will be over by Christmas.
Good to hear from you Fiona, it must have been lovely to have had the break and helped time pass a little quicker. I hope you have had a good day with your friend today and that tomorrow goes well for you.
X
I’m so pleased that you’re feeling better today, Michelle. I do wonder if people fail to respond because they are slightly paralised by fear of saying the wrong thing so say nothing and then time passes and they don’t know what to say at all .Still, it’s disappointing and hurtful at a time when things are difficult enough and from a close friend it stings all the more.
I hope the CT scan went well; I’ve often sat and thought exactly that same thing, of how my life has inordinately changed over the last 6months but like you, am hoping this will be over by the end of the year and 2019 will be a far less eventful year for us all!
You’re quite right, It was so good to be home. My parents are in their 80s so being able to go there is a bit easier than them travelling down and I also got to see my oldest friends which was also lovely. It definitely made the time pass but I must admit I’m more tired and probably did a bit too much. Still, I prefer being tired from too much that was enjoyable.
Thanks for your wishes for tomorrow–keeping my fingers ?!
The downer seems to be a recurring constant in chemo treatment. Week 1 is always an alien planet. I’m glad you are feeling better now, Michelle. Your friend, for whatever reason, has really let you down when you needed her friendship to be real. Two of my friends have done something similar. (I had to comfort one of them who burst into tears when I told her of my diagnosis.) As a trio we used to meet for lunch but I’ve heard nothing from them and meeting for lunch no longer happens. I feel as though what seemed a real friendship was actually something quite shallow. Those who are my friends during cancer treatment have been my lifeline.
Thanks for the reassurance re. docetaxel. The nausea was horrible this time but today, as though someone had flicked a switch, it was gone. No meds today. No one doing macramé with my insides. Yayyy!!!
I’ve tried the CCS cream and it’s lovely, so I hope it works for you, Christine.
Hope the holiday feeling is still with you, Fiona. Just getting away from cancerland for a while must have been fabulous. Puffins a bonus!
Did you get to the cinema, Gygi?
Take care all x
Have to decide if i should come off the trial.if i do i wont need another biopsy and the oncologist said she would put me on just the drug begining with d that you have after fec usually but on a higher dose so sounds like a no brainer although they will discuss at the MDT meeting. The surgeon wants to shrink the cancer we think hence me doing all chemo before op not just 4 cycles. The ultrasound showed the cancer has not shrunk but that there are marginal changes but as they measure it on the size its unchanged. Any views on if i should come off rosco trial?
Hi everyone not been on for a while life is so fast at the moment.Hope everyone is ok
Hello all
Thanks for your replies re my friend. It sounds like we have all had similar experiences to some degree.I feel less bothered about her today but I generally feel more balanced today. This week has been an emotional rollercoaster, I’m not sure why but I have been so up and down. It is so draining being upset! I also had a friend who cried when she found out about my diagnosis, well actually she sobbed for about 3 minutes on an answer message, and she’s a nurse! I had to delete the message, I couldn’t listern to it.
On the bright side I just don’t feel tired at all with this cycle, I seem to have so much energy. I am making the most of it whilst trying not to over do it. I’m also struggling with swallowing and heartburn. I can’t eat any hard foods, I’m living off scrambled egg, soup and ice cream and avoiding fruit juice. Hopefully it will be better by Sunday.
I feel I can see a small light at the end of the tunnel with chemo however my thoughts are starting to turn towards surgery. I realise I know nothing and that is a scary. I suppose I’ll pick it up like I have with the rest of this marvellous new world we are living in.
Fiona how did your first docetaxol go? All good hopefully. Is it 7 weekly doses from now?
Hi Wildshell how are you getting on with chemo?
Linda Corrine I’m sorry I don’t really feel in a position to comment on your treatment choices, I would suggest speaking to your team and take their advice.
How are your feet Christine, hope the cream has helped.
Once again we are gardening this weeekend, a more radical project taking some trees down. Obvs I won’t be doing that, just supervising!
Hope the weekend goes well for everyone and that everyone stays well x
Hi everyone this is a Gigi update, a bit selfish, it’s all about me.
I’m halfway through chemo although Herceptin due to start Mon for a yr. Finished Fec and due to start H and Docetaxel Monday. Have to go an hour and a half early as they need to check my bloods. Atm my blood count is too low for chemo and if it stays the same, chemo will be delayed again. As you know I’m a teacher and checked I was ok to go to school yesterday off today and school have said even if chemo is not on stay home and chill. (I was planning to anyway) but I love that about them. My cleaner came today (finally got one too late for after surgery but good for chemo) She turned up with flowers and chocolates then took me shopping ( she was going shopping too) then met me in a different shop and brought me home. I was so down when I learnt chemo might be delayed again but feeling up again. Partner going away weekend so staying in all weekend (as not immune system ) to chill and watch the world cup. Ironically will then get on a crowed commuter train in rush hour to get to hospital lol!
So the moral of the story for me is …
#halfway
#don’t stress over what you can’t control
#grow through what you go through
#Alice: how long is forever?
#White Rabbit: Sometimes just a second
Have a lovely weekend everyone! Take care Gx
Sorry to hear your blood count is still low Gigi, I’ll keep my fingers crossed for you. ?I suppose you want to get on with the docetaxol now, having had to hang around. I’ve never been a fan of rollercoasters but this must be the worst one I’ve ever been on! Your cleaner sounds great, I got one in when I started chemo too but have to say they are pretty rubbish and have never turned up with flowers or chocolates!
Put your feet up and enjoy your weekend x
Hi
Sorry to hear about the blood counts Gygi. I think we are all looking for an end goal so any delay is such a mental thing. Any thing that doesn’t go to plan puts us all in a spin.
I was told by the oncologist that my 12th paclataxel would be dropped and she discounted dropping the dosage of the chemo. I have just thought about todays chemo and realise the dosage was dropped. I wasn’t in the right mind to process and question it at the time, having been filled with pre meds and tolerating the cold hat. Now i am wondering if she changed her mind and i am doing the 12th dose but just a reduced dose on the last three. Can’t do anything until monday when i will be chasing around to see if i can find what my records have on them. Feeling totaly out of it tonight when usualy straight after chemo i seem well due to the steroids etc of the pre meds but crash sunday evening. All a bit odd.
I have also realised i need a cleaner for after the DIEP. I was brought up to do it all myself but have been warned that if i do too much i will end up having to have more surgery. My husband never notices mess and is always puting things off so i think a cleaner is needed.
That must be annoying Christinehavinf to chase around to find out what is going on with your treatment. Don’t these people think that we would like to know what is going on? It is our body and our life after all. I hope you are feeling ok today and get it sorted easy enough on Monday x
hi Michelle I’m doing ok. I had chemo Thursday half way through yipeeee been told have to have 25 radiotherapy sessions after.Im suffering with smells this time .Every month is a step closer to this being over.christne I would get a cleaner mine is my son bless him I have two fantastic kids who look after me so well
Good to hear you are doing ok Wildshell. I still have surgery to go as well as radiotherapy but everyday is a step closer and we are ticking off the days x