Hi @daffodil_dream
Congratulations on getting to the halfway point! You can tick each one off now, knowing youāre on the home strait and moving to the end. Iām not on docetaxel but I did have EC and that was definitely the more challenging one, side effects wise, so youāre past that now.
I remember feeling apprehensive about the changeover to a new drug, and weāre all so different. Itās a bit of a bingo card, the random things that come up. Definitely make good use of the 24 hour line if you have any weird symptoms as they do follow up if necessary (I had to go into hospital to get my hands and bloods checked after my first Pac). Take care and hope the next infusion goes smoothly. ![]()
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Omg @felineoptimist Iāve had a twitchy eyelid for a few days and just thought I was tired or maybe aggravated by the heat, must be a chemo thing!! Has yours gone now? Xxxx
Ha, nice to know Iām not alone! Nah still going - not constantly but it is both eyes. I feel like Iāve got lots of nervy things going on right now, so maybe itās connected to that? Hopefully will settle downā¦.
@katie91 thatās such a helpful answer. Thanks! Iām in the same position as @daffodil_dream , switching to Docetaxol after 3 x EC next week. I didnāt find EC too bad, although Iām feeling pretty tired. Just apprehensive about a brand new set of side effects!
Glad it helped
I was apprehensive too but it really did feel different and lighter to me so hopefully itās the same for you too! Good luck ![]()
@jane2026 and @poppy261 , I have not had EC but please be assured that your oncologist will be very aware of all the potential side effects you possibly might have and do all they can to help you manage them.
If you have any concerns speak with the chemo nurses looking after you before you begin and know you can call the hospitals 24/7 cancer treatment helpline.
Hope all goes well for both of you.
Thanks so much @wibbles ![]()
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Just ordered a load of silk moisture gloves and socks, from Jasmin Silk, incase I get an increase in hand/feet problems next week with my last EC..Then Pac will most likely do the same. ![]()
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Expensive stuff but I cant tolerate cotton when my skin gets aggravated.
EC has got worse as the cycles are ticked off. Felt my whole body was dissolving and breaking down bit by bit last week. ![]()
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. Ive got so many emollients, mouthwashes, laxatives, imodium, and creams for areas we dont talk aboutā
(to cover every eventuality) , that I could start my own pharmacy. ![]()
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In truth my 24/7 Team have been great. Theyāve acted very fast with everything. But its hard getting use to calling for so called āminorā thingsā¦.yet each time, but so glad I did, as those āminorā things turned more major pretty quickly.
Its not easy trying to āpreventā things nowā¦it takes up a lot of time, effort and vigilance, but worth it in the end..
We must never underestimate how strong we are ![]()
Even on our bad days. ![]()
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I do get a twitchy eye too - forgot that one @felineoptimist and @katie91
. My eyes have not been great the whole time to be honest and Iāve found out I need a little bit of laser surgery now to fit in at some point
. Donāt think thatās related to chemo but I know there are often eye impacts too from this lovely treatment
. I keep telling myself that although there are side effects galore as long as itās doing the main job then I can put up with anything ! xxx
So, it was back to the breast surgeon yesterday. The good news is that they can no longer see the cancer on the scans - so chemo has done a fucking number on it. They have to remove the original tumour area which is quite large, but it means she is going to do her best to achieve clear margins with a therapeutic mammoplasty - my preferred option. She is pragmatic that it might not be possible, and I will still need radiotherapy, so for about a year I will have one small, lifted, reorganised boob and one large, post breastfeeding one on the other side. I donāt really mind though. What Iām surprised by is how angry I was about my friends and family congratulating me and celebrating the chemo response. I was so cross with my husband for trying to get me to celebrate. I am not at relief yet though. I am not at the end of the road yet. Itās still going to be sore and tiring and involve time and energy I had planned for other things.
I am grateful though. Itās a medical marvel what these drugs can do. I know others are facing different things in treatment and response and I hope this doesnāt read as too selfish. But I wanted to share somewhere that might understand the complexity of this whole thing⦠xx
Completely agree @felineoptimist , itās certainly not over when chemo ends. Lots more hurdles. Great that we can all use this forum to vent. Iām working my way up to a big vent as I was refused a bone scan on NHS as Iām too ālow risk ā (how hilarious is that after 3 months of chemo, being post menopausal and next they want me to take aromatase inhibitors which definitely compromise bones), so I paid for a private one myself and guess what? Iāve got osteopenia. Low risk my arse. Iām going to make a formal complaint to the GP. ![]()
Here is the perfect place for a rant! I think the end of chemo is certainly note worthy. I rang the bell for my girls who needed it but I havent yet felt the need for a celebration yet. It will come Iām sure. I am happy to leave that somewhere in the future. It will come naturally I think
Well done @sam1204 the perfect example of why we should advocate for ourselves. The NHS is wonderful but I know that sometimes they donāt go looking for things because inevitably they find something and canāt ignore it. This find might change their mind on some of the hormone treatment they wanted you to start?
went to supermarket this morning WITHOUT a headscarf, walked round enjoying the fact its got air con. DEcided it is way too hot here to try regaining walking on the streets so opted for a tat round the large supermarket as it was cooler and on the flat. I NEED to start form somewhere with this one after the past four rounds have left me clinging to my loo from necessity.
Was delightfully stunned at how many offers of help I got to carry stuff, push stuff and did I need any help. I even got customers asking if I wanted to go ahead of them at the till!TBH I did spot the woman in headwraps and disguised with wigs but I opted for going in brave and bald.
For round five the oncologist sorted out 30mg lapranzole daily and 200mg maganesium citrate daily on top of the antihistimines, steroids, extra steroids, loperimide, lotions and potions to keep my skin less dried out and if it was not so darn hot outside I would be tempted to dance round the garden. for the first time since chemo was tried I even feel like I want to do a few things. I am even beginning to think it might be possible to consider a a day out or even a few days away post surgery rather than heading locally to well known spots with very clean staff loos that the chefs/owners will give me access to.
since starting chemo this is the first time I have felt passibly human and I have been able to eat real food including small amounts of wholemeal seed rich bread so doing all I can to keep up with heam rich food and foliate rich veg, two things I have not been able to stomach and the two that my chemo drugs are most likely to nail below where they would be normally. Hoping that chemo round six is this doable on the 8th.
I might be living in an area where people are just kind but heck with no eye lashes hair and eye brows on a red hot morning that truly made my day.
@sam1204 do join me in rant land - thatās so deeply frustrating. At least you do now have the proof to share with them but shouldnāt be such a battle to advocate for should it. ![]()
GO for it Sam. HOpefully picking it up at this stage means you can do things to help yourself.
MY younger DD has benign bone tumours in her legs found by CT, MRi and X-rays after a serious RTA and risky life saving /changing surgery. SHe is in her 20s and her bones have been accessed by a her osteo oncologist ( they also handle benign bone lesions and tumours that need surgery etc and pain management ) as being 90% to 85% weaker than those of woman of the same age as a result. She wears flat shoes with good grips so she is likely to trip from heels, eats extra calories and calcium rich foods plus does physio to offset the risks of another severe leg/ hip fracture and maintain bone density and strength.
Hope you can access something similar where you are and go advocate for yourself as constructively as you can.
Oh heck, l know that one, my last ultrasound only found the titanium markers but l will still need a SMX and lymph node clearance and as it was HER+ I expect it will be a mix of radio and targeted therapy going forward. I am not bothered about celebrating yet either l want to wait till after the histology team have checked what is surgically removed.
Just wish some of my more naive friends would stop assuming chemo is the solution and when thatās done you are now okay. TBH I suspect most have no idea as they have never had to be there.
DO what you want as and when itās right for you to do!
Iām so glad youāve posted @felineoptimist. Itās hard isnāt it. Weāre happy and relieved that chemo has done its thing but there still some way to go and lots to still endure so celebrating seems like too much to ask of us. I feel a bit the same when people say things like keep positive. I know they mean well but honestly sometimes I just want to say what the hell do you think Iāve been doing but after a 100 days of feeling this way you tell me if youād be eternally positive !
I think this forum is so important for us to be able to be real and rant away. Chemo being over is a big ending but is only so far along this journey with lots to still face and figure out - definitely in your corner ![]()
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Have a great big rant @sam1204. You have been so good at advocating for yourself but sometimes it would be nice if someone just did that for us a little too. Iām glad you pursued what you knew you needed and confirmed your suspicions (although obviously donāt want you to have this). I donāt know how the NHS grade or evaluate this sort of thing in terms of risk or further investigation. I agree with @foxgem - in so many ways the NHS is wonderful but if we want something a little outside of prescribed choices there isnāt much room for manoeuvre xxxx
So glad youāve been out and about @wibbles and felt the kindness of others. A walk around an air conditioned supermarket feels a bit like being out out when youāve had to spend so much time near your loo. Sounds like youāre feeling like there is scope for more of this in the future for you too which is good to hear ![]()
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@sam1204 we know how we feel in our own bodies better than anyone and you were right to follow your instinct and seek out a scan. Itās infuriating that you werenāt deemed high risk, all things considered. We really do need to advocate for ourselves, even though we really shouldnāt have to. That phrase āthe squeaky wheel gets the oilā springs to mind! I hope your results help with further decisions about treatment, going forward.
So good to celebrate these little victories @wibbles! I hope you continue to enjoy some decent food and feeling more human.
This whole process takes so much from us.