Hope you all managed some special times over Christmas. I was grateful to eat Christmas lunch and we had a quiet day. For me this past month of chemo has been way more difficult than the first few months. The cumulative effect is very real. Coming off steroids was really difficult this time too, felt very low.
Copperycat hope you’re OK. I can understand that being extra upsetting. Sometimes the upset of this whole experience is exacerbated by the old equipment/buildings or by jaded and tired staff. It’s all so out of our control.
I have radiotherapy planning meeting next week but still have 1 or 2 chemos to go.
Evening all. I’ve gone to bed , can’t face seeing in the new year as I’ll be glad when this one is over! Just wanted to pop by and say that I hope 2024 will be better for us all🤗xxx
Like @daffodil1 I am finding the cumulative effects tough and have only really got my energy back in the last day or two which is 10 days or so since the treatment. Thank you all for sharing your Christmas stories. I spent mine largely lying on the sofa feeling sorry for myself. But the week has gone by and despite never ending tummy issues veering from one extreme to another I am feeling much better than last weekend. So onwards and upwards one more to go and then i drop down to just Phesgo for a year. I only found out that I carried on with Phesgo recently and am a bit worried that means another year of feeling like this but have an appointment with my oncologist in a week, so I will be quizzing him about what this means. I am really hoping it doesn’t mean carrying on with steroids and self injections…We’ll see. But in good news only two weeks until the PICC line comes out. I hope we all have a happier 2024 with recovery and the return of our health.
Hi all. Happy New Year. Let’s hope for a better 2024. @copperycat i went to bed about 11, had no energy and like you I didn’t feel like celebrating. I’ve been a bit bah humbug for weeks.
@frazzledmcsazza so your Christmas has been so bad with side effects. Thank goodness you only have one more left. I’m on Herceptin until sept 2024. We will both be immune compromised and some side effects are similar to chemo but I was told no more blood tests and less clinic appointments. They kept asking if my side effects were worse on my Herceptin weeks as I was on weekly chemotherapy. I didn’t notice any difference. I’m hoping the side effects are much less. Dr Liz ORiordan (You Tube) did warn we need to keep a check on temperature for infections but clinic appointments seem to down play the side effects. I have my first on its own this Thursday and the next 12 will be done by a nurse coming to my home ( saves travel and less use of chemo chair). So will see how I am. Feeling better each day without chemo but still have some ongoing issues with stomach, aches and pains, less energy.
Happy new year everyone! Here’s to continuing our journeys and hopefully ending this year healthy and happy.
I made it to midnight, think it’s the latest I’ve been up since my diagnosis in August! Having a nice chilled one today, need to get the Xmas decs away really.
@frazzledmcsazza my stomach is all over the place too, I don’t like to keep taking additional tablets so planning to stay home for most of January as I’m really sick of the additional stress it causes when I’m out. Re: Phesgo, I’ve been under the impression that they don’t give anything alongside, as when I’m done with chemo they said I just need to “pop in” every three weeks for the top up. I don’t think I’ve been given anything extra on the weeks when I’ve had it alongside chemo. I haven’t really noticed any additional side effects, other than the bruising/soreness around the injection site. @naughty_boob I didn’t realise it would affect our immunity, once through the chemo. Will definitely have some questions for my next appt on the 15th.
Today marks the final month of chemo for me, my last session will be Feb 1! I have an MRI next Mon and then appts with oncologist and surgeon the following week- really looking forward to having a plan for the next phase.
Pleased you are nearing your end of chemo. Not long to go now.
I found this re Herceptin which is included in Phesgo Trastuzumab (Herceptin) | Cancer information | Cancer Research UK. Under side effects it mentions risk of infection because your immune system is low. The information given by my team also mentioned lowed immunity.
There is a thread for HER+ buddies if you are interested. @frazzledmcsazza and anyone else with the same disagnosis.
Happy New year everyone! My spirit is still high despite being at hospital for first EC and steroids and all the usual. Did have a mood drop and energy drop think my HB is slightly under again and has to stop thyroid tablets I was way over the norm and it’s made my hair thin a lot more than on chemo
I hear that EC can hit you after you finished the steroids more than any other drugs. Got one done no reaction so the end is in sight. 5th of march for me!! Then op and RT obviously.
First ride of the day done yesterday, customers and horses all happy and back in one piece @Shi no stunt for me
No doubt I’ll be up till ghost stupid time this evening I can already feel the steroids kicking in. I’ve got stronger anti sickness this time as well.
I’ve read loads of books and looking for thriller recommendations, looking on Goodreads but will take your recommendation ladies if any? Anything else, I don’t read it !!
Am lucky that horse riding is outdoor I rode most days this week and that was a brave move w these storms god the weather was dreadful!! But sooo glad I did inahve lots of memories. Thinking of doing a riding holiday end of march after my chemo finished and before op to celebrate. Everyone seems to warn me I may be tired to ride every day, due to cumulative effect, seems like EC hit different and makes your exhausted. it’s a trail ride but back to same hotel every day average of 4 hours a day and there a pool and spa if I am too tired! Waiting to see how I feel and date of op tbc before booking anything anyway.
Good luck to all those finishing chemo and moving on to next steps. I do say there is still a small part of me who fears it might come back although I know not to think that way!!
Anyone also getting dull pain lately in the cancer areas and around? Nurse said it can happen, scar tissues and nerve endings trying to regenerate. Means chemo is working but thought I’d ask you as well.
Hope you all have a great week and probably speak later at night
You look so happy with your horse and your skin is so much better.
I think all chemo is cumulative, I finished Paclitaxel 3 weeks ago on Thursday and am still fatigued, not sleeping well and have very swollen ankles, which when on chemo went up and down. They seem to be swollen most of the time. I am increasing my walking and been on my feet more than before so it could be that. Back to Cardiff cancer centre on Thursday so will ask. I was there today for Heart MUGA scan which ended up being 3 hours as the radiation they inject you with had to come from Birmingham they were an hour late and didn’t call to say they would be late! Total 5 hours with horrendous weather to drive in. I did it on my own, first time since September, and makes me feel more normal.
@pinklilli3s Hope you are doing okay on the old steroids. They always make me feel like my brain is going 100 mile per hour. I thought your comment about dull ache in chemo area was interesting. Feel like I have this. It comes and goes so it is interesting to hear that the nurse thinks this is normal.
Amazed you are continuing to manage getting out for a ride with your horse. You must be super woman. A lovely bit of normality in the midst of the madness. I hope you can continue throughout.
@naughty_boob sorry to hear of your five hour special round trip. That seems to be par for the course unfortunately doesn’t it. When I go for my bloods that takes three hours all in for a ten minute appointment. It always feels like there must be a better way…So pleased you managed on your own again and that felt more like normal. Another bit of light at the end of the tunnel.
Thank you, remember I’ve had a break which was much needed and boosted my spirits and allowed me to be/feel a near as normal as I could be. Nearly 3 weeks due to oncology decision to forfeit last week since tumour shrank. Am also younger just turn 43 so maybe that has something to do it . I just pray my HB is not affected as much as before but it’s already lower than Friday was 105 and now 95.
Riding has been my soul saviour and w no chemo (but busted knees lol) I’ve tried to squeeze as much as I can as I know what’s next, the dreaded gcsf injection. What’s bothering the most aside from usual side effects, it’s dry eyes due to eye lashes lost. Blepharitis is back but I think I do everything I can to have good eye lid hygiene and am getting my eyes checked I’m a couple of weeks.
@naughty_boob I felt I was overall swollen especially in the face like I had been drinking for a while so I think some of the drugs have been on in IV had some alcohol. Sorry to hear about your ankles and life is moving so grab it till you can and feel ok to walk. Very very brave to drive 5h in this weather, hope you’re safe home.
@frazzledmcsazza I will talk to oncologist about the dull ache. Turns out also the thyroid tablets I was one since I’ve not been on Pembrolizumab drove my thyroid out if whack I’ve lost more hair (really thin) than during chemo. I’ve got a wig… I guess I should be lucky to still have some hair…
I’ve bought a new book recommended by the book keeper at Waterstones. Billy summers from Stephen king. Will give me a good reason to stay awake on those steroids
I can highly recommend Twisted from S cavanagh and The family upstairs (a bit dark) but they’re a sequel which I got on Vinted !
Lots of love all and food luck to those on treatment week. Every day is day closer to our healing
The Paclitaxel has alcohol in as I was advised not to drive to the appointments and get a lift. My asthma inhaler also contains a small amount of alcohol but I’ve been told it would not affect my driving. They couldn’t guarantee you would be below the legal limit. I haven’t drank any alcohol since early October, I had a couple of glasses of wine but felt awful. I was told my liver and kidneys were working overtime processing the chemo and all the other drugs that it couldn’t cope with the wine.
Had some lovely Noseco and Kylie sparkling wine, as well as Gin type drinks with 0% alcohol with added tonic taste like a G&T so I haven’t missed it at all and will probably continue with no alcohol.
Pinklilli you absolutely get that booked if dates work out it’ll do you world of good it’s lovely to see your mojo back btw super photo and horses are so amazing they lend you their strength when around them Shi xx
Is The Family Upstairs the Lisa Jewell one?A lot of her newer ones are quite dark compared to her earlier books, but really good!
I’ve had the odd twinge around my lump too- fewer recently but definitely while I was on EC. And weirdly some days I feel some irritation under my armpit/ where my bra underwire sits, not sure if it’s because I’ve gained a bit of weight or if some days it’s more sensitive, as other days the same bra is absolutely fine.
I’m having a run of hot flushes lately which I assume are related to the Phesgo… when I’ve been busy/on my feet for a few minutes, and in the night too. The joy!
Hope you are feeling ok after the first EC. How often are you having it? I had a foggy few days then almost like clockwork on the Weds eve at the end of the first week, it would lift and I’d suddenly feel a boost in energy and clarity. Then rinse and repeat x 4. I knew not to work on any budgets for work until the fog lifted
Tough night last night woke up all swollen like post long plane journey, pain in joints and lymph nodes 3am. Called help line said to take loratidine which I did. Mildly help. Was able to go back to bed. Not a reaction. Could be steroids perhaps water retention… EC kills the divided cells.
Taste buds changed again trying to figure out what to eat. Don’t like apples nor bananas that were my saviour last round. Bummer. Trying oranges but i am put off by anything sweet. Salt stuff seems to be my friend. Hot flushes are present too. Nausea are massively intense and barely dissipating. Had GCSE injections and not looking for the kick in the bones, will take paracetamol and loratidine. Nothing else I can do, although this time no pressure to recover by next week. Fresh air seems to help and managed a shot walk round local park. Looking at nature and breathing fresh and people watching makes me forget slightly the chemo side effects and the solitude at home!
As for the book yes Lisa jewel. She’s upped the dark side From earlier books for sure which I found a bit wishy washy.
My eyes are really dry and sore, comes w the territory. Did you hear about Amazon prime introducing advertising? Really cross and fed up w these companies making money on our back !!! I got an email today saying I can pay extra for no ad. No thanks!
I have EC every 3 weeks good to know you get a breezer, when is your session mine is in Tuesday. When I seem to feel better post chemo, usually Friday, steroids withdrawal kick in and no e pain. Usually by Monday or Tuesday am better so looking forward to next week and trying to figure what I can eat in the meantime not put on weight yet, went the other way, but the break so will what happens on EC and back on steroids after 3 weeks break. Good luck everyone
Thanks. I’ll take a look. I’ve got ocufresh lubricating eye gel carbomer 0.2%
I normally use viscotears but they’re none in my areas… apparently there was a recall before Christmas
I use also warm eye mask and optase cleaning eye lid wipes and gel followed by hycosan eye drops.
Got an opticians appointment in 2 weeks I may get further guidance. I feel my vision changed since beginning Andi actually feel it’s improved. Could be the steroids or could am no longer on computer 8/10 h a day staring at screen
Boots did a good one from memory around £5 but not sure about a recall sorry, just sharing what helped some of us back in 2017 when we went through chemo, the 2017 early threads passed on their tips and tricks down the months so everything helped get us through Shi xx
Ohh I’m sorry you had a rough night, I hope last night was better?
My chemo is Thursdays, so currently on the train into London Bridge- I’m having treatment at Guy’s. Their cafe has the biggest croissants I’ve ever seen so that has become my Thursday treat- will almost miss it. Almost.
As you haven’t long finished Paclitaxel as I have, I’m wandering if your swelling and pain is related to that. I have struggled with swelling and pain since last infusion 14 December. I also have sore eyes, they are running so not dry but are really sore near the tear ducts.
I had Herceptin injection today and the nurse just said it can take a few weeks for the side effects to go. No suggestion of how to minimise
I slept 12 h falling asleep on the sofa but tg the bf called and I went to bed.
Missed my 8 o’clock alarm for meds but took them 11am as normal . EC seems the sleeping and nausea/ constipation chemo medicine! With a break from sleep at 3am seems to be where I talk to myself and then ask my body to go back to bed finally!!
My taste buds craves lemon, vinegar and everything tastes sweet even water I like ggs again boiled egg and had some avocado w lots of vinegar. I love the idea of a croissant but don’t think I would enjoy it now!!! Maybe next week xx
stupid time this evening I can already feel the steroids kicking in. I’ve got stronger anti sickness this time as well.
and moving on to next steps. I do say there is still a small part of me who fears it might come back although I know not to think that way!!
I’ve lost more hair (really thin) than during chemo. I’ve got a wig… I guess I should be lucky to still have some hair…
you absolutely get that booked if dates work out 
but don’t think I would enjoy it now!!! Maybe next week 
xx