Hi looking to connect with more people on 4Ec and 4 pac i started in march 2026

Welcome and how to use the forum Introduce yourself
101

When we go through it ourselves, we know how tough it is. And life away from cancer is not always perfect either, so we end up with a truly difficult time.

Ive been through many struggles over my life, and I know how draining it gets.

My heart is with you @cazgib10 on many levels.

But its important you get through this Chemo. It is seriously tough. Make sure you rest as much as you can. Ive been sleeping, drinking, eating, loads in my first week. To flush it all through, give my body nutrients to repair the chemo damage, and rest to give my body time to heal and recover. It helps a lot. ,:heart::bouquet:

Sending you strength to do the same. :flexed_biceps::flexed_biceps::flexed_biceps::person_lifting_weights::person_lifting_weights::flexed_biceps::person_in_lotus_position::person_in_bed::bouquet::heart::heart_exclamation:

2 Likes
102

@poppy261 what cycle are u on now and how are u getting on ?xx

103

Im on 4xEc every 2 weeks. Then 4xPac every 2 weeks. Then Radiotherapy, then 8yrs of Hormone Blockers.

I had a week off between 1+2 due to a cold..

I had my third EC yesterday. My main side effects have been savage fatigue. But thats also due to already having M.E. so I need to sleep as much as I canā€¦ I just give in to it. Fighting it makes it worse.

Ive also had mouth sores/ulcers, that Iā€™m mainly ontop of now with preventative mouthwashes.

I had some woozy side effects round 1. Didnt have them round 2+3. But had more nausea that came with hunger. So, if I eat the nausea goes away.

Im cautious of Pac as I suffer from hand eczema. So that could flare up if i am not careful.

Luckily to date Ive had the pegfilgrastim . And no bone pain. So im hoping they keep me on it. Its through NHS. No private treatment.

I have 3 days of steroids that I take in the morning.

2 days of one anti sickness in mornings.

3days of anti sickness evenings.

As and when anti sickness after that. So its all been well controlled. But the anti sickness add into the fatigue as well as the cancer, operation recovery and chemo drugs.

We can do this. :heart::heart::bouquet::heart::people_hugging:

104

@poppy261 unfortunately pegfilgastrim isnt availble at my hospital i think its the bigger hospitals that have bigger budgets, The chemo nurse hadnt even heard of it on my ward . Bless u i havent been terrible with chemo until i started pac and got a lot of bone pain it was excrutiating.

105

Thats a real blow for you @cazgib10 . Especially when other NHS hospitals give it. Worth asking Oncologist rather than the Nurse, as the Nurses just do what the Oncologists advise.

My Nurses have no control over my prescriptions list. But they can give me mouthwashes.

If they have reduced your Pac due to struggling with it, they may consider Peg. Especially as you are so close to finishing.

They have worked out that the 5+daily ones vs 1x peg financial work out roughly the same with total costs.

So worth an ask. They can only say No. :heart::bouquet:

1 Like
106

Im not sure how it works some hospitals just dont provide certain drugs , i think the area that we live in has a lot to do with it , there is so much help elsewhere its very annoying . I tried to change hospitals as i was so annoyed at the lack of communication at mine . Not sure if they will do it at this late stage will see x

107

Not good @cazgib10 . :heart:

It shouldnā€™t be a PostCode Lottery for NHS cancer patients.

Its definitely not a Private Healthcare perk.

No harm in asking.

You have a strong case with struggling so much. But if they refuse, then at least it will soon be over. :crossed_fingers::crossed_fingers::crossed_fingers::crossed_fingers:sending you positive vibes :person_in_lotus_position::bouquet::heart::people_hugging:

2 Likes
108

Hi @kawan - Iā€™m still getting that horrible taste in the mouth (especially the first 4 or 5 days after Pac infusion) but hardly any of the soreness and mouth ulcers that I had with EC, so I guess thatā€™s a bonus. :+1: So far, no more need for the mouthwash or Bonjela. :crossed_fingers:Taste very slightly improves (from cardboard to very faint ghost of some flavours) just towards end of my two weeks, then itā€™s back in to be blitzed again! :weary_face: Hope things improve for you. :crossed_fingers: Xx

1 Like
109

Hi @cazgib10 I had a dose reduction after my first Pac because of my reaction and neuropathy and itā€™s made a difference. Reduced to 90% and slower rate. Worth checking with your oncologist. Really hope your treatment went better this time. :crossed_fingers::heart:

110

@mistygeorge my treatment did go better this time thankyou , i was reduded to 80% slight difference with the neuropathy which im pleased about . Glad urs was better

1 Like
111

Hi @poppy261 youā€™re so getting there! :flexed_biceps: Update on my hand eczema - all the creaming and gloves is paying off and the skin has recovered okay, so definitely pre-empt this when you start your Pac. The neuropathy tingle and itchiness in hands seems to have subsided a bit since my Friday infusion, but thereā€™s sometimes a bit of a delay so I may have spoken too soon. :thinking: Nurses said itā€™s a common side-effect of Pac and is thankfully temporary. We just need to get through it and finish! :hugs:

Iā€™ve not had the same ā€˜zombie daysā€™ on Pac as I had with EC, so hopefully your energy levels will be better when you get there. :heart:

112

@cazgib10 thatā€™s fantastic to hear - so pleased for you! :smiley::hugs: Weā€™re edging closer to the finish line with each one of these we do. Youā€™ve got this! :flexed_biceps::sparkling_heart:

114

@m1sty.george thankyou for ur kind words sometimes i feel this way , getting tougher nearing the end . i see what u mean about the neuropathy it can come and go admittedly

1 Like
115

Thats so good to hear @m1sty.george . Thankyou :folded_hands:

Glad you are having some positive outcomes. Goodness we need them dont we :person_in_lotus_position::heart_exclamation: :heart:

I will make sure I moisturise my hands as much as possible. :palms_up_together:

I get a lot of itching just before and during my eczema flare ups. Thats my red flag. :triangular_flag:So I think Pac will be nasty and target that weakness. :skull_and_crossbones::angry_face_with_horns::test_tube: I also get it in my feet. :footprints:Probably I should moisturise my feet as well. :thinking:

My worst trait is, over the years, I ignored all my bad bits. To focus on them too much, just got me down so much. So bad backs, migraines, ME, eczema I pushed them aside and ignored them, save treating them of courseā€¦but I ignored the pain/discomfort. Pushed through. I learnt to relax through the pain, meditate, focus on other things. Which, in most respects, was a good thing. :thinking::person_in_lotus_position::flexed_biceps:

But with chemo I cant do that, as the intensity is so much worse. So ive had to really rethink and focus more on things. Ring 24/7 for seemingly minor thingsā€¦but goodness I was glad I rang them. :mobile_phone::telephone::+1:

Ive had to be more pro active, and pre planned. Acknowledge side effects could get huge if I ignore them. Chemo works opposite to my norm. :face_with_monocle::thinking:

Same with doing preventative stuff with mouthwashes etc. Thats helped so much. As a slightly lapse day results in flare ups. :zany_face::mouth::tongue::scream:. Yet lapse days normally was rarely a problem.

Im so hoping I dont get these fuzzy days on Pac. That would be a huge positive. :crossed_fingers::crossed_fingers::crossed_fingers::crossed_fingers::sleeping_face::yawning_face::person_in_bed:. I do lots of things to enjoy mini moments through the fog, but it would be nice to feel safe to drive my car :automobile: whenever I wanted to. Basically I avoid the car for a full week. Saves on petrol though, and money :money_bag::credit_card::fuel_pump:.

Had no idea petrol went up so much in February. I had mastectomy on 19th. It was Ā£1.27. Seven weeks later, I could drive again and it was Ā£1.69. :scream:

So saving money by not driving isnt a bad thing. :wink::smiling_face_with_three_hearts:

Onwards and upwards. Embrace the yin and yang of cancer :yin_yang: . For every garbage bit, there is a good bit hey :smiling_face_with_three_hearts::blossom::sunflower::person_in_lotus_position::bouquet::people_hugging::heart_exclamation:

3 Likes
116

@poppy261 youā€™re so right about using the 24 hour line. Itā€™s too easy for us to dismiss symptoms and try to push through. Better to know whatā€™s normal for chemo and what isnā€™t!

Oh my god the petrol prices! :slightly_frowning_face: Good to save some money by not driving but little trips out can be such a mood boost. This whole diagnosis/treatment/recovery merry-go-round seems endless some days, we need to be really kind to ourselves - more now than ever.

Your balance and positivity around all this is so fantastic! :star_struck::raising_hands::smiling_face_with_three_hearts: Hope youā€™re having a good week so far. :automobile: :sun_with_face: :butterfly::cherry_blossom::herb::hot_beverage::cookie:

117

Thanks @m1sty.george :heart::folded_hands::bouquet:

Im doing lots of sleeping after treatment on Friday. :person_in_bed::yawning_face::sleeping_face::rofl:

Feel like a sloth on high dose sleeping tablets :sloth::sloth::pill::rofl::rofl:.

But it means the days zoom by very quickly. :wink:. :spiral_calendar::hourglass_not_done:

I bought in some yummy treats to nibble during the foggy waking momentsā€¦ sticky chocolate cake, banoffi pie, ice cream. :ice_cream::pie::moon_cake::chocolate_bar:.

Im getting good at creating very high nutrient meals from a mixture of salads, pasta, mushrooms, protein ā€¦meats, nuts, seeds and dairy. That take 3mins to put together. :stuffed_flatbread::taco::green_salad::steaming_bowl::curry_rice::pot_of_food:. Minimal prepping. :smiling_face::partying_face:

And deliciously easy milk smoothies with various fruit, nuts, seeds, greensā€¦:strawberry::tangerine::mango::banana::kiwi_fruit::green_apple::blueberries::chestnut::peanuts: take 2mins to make.

All stop the ā€œnausea feelingā€ supa quickly. :nauseated_face::face_with_medical_mask::woozy_face:

I Drink loads in the first week, to flush out the drugs, but that means loads of toilet tripsā€‹:toilet::roll_of_paper::person_running:. :smiling_face::person_shrugging::person_facepalming:

So happy to be at home to give my body rest and recuperation in this week.

Im also tapping in to IPlayerā€™s wealth of interesting programmes. Started to be a Geek listening to Rare Earth Podcasts as I fall asleep. :rofl::wink::person_in_bed::yawning_face::sleeping_face: .

Means I can learn something interesting whilst my eyes are closed. :wink: E.g never knew, a high strength concrete house brick, can take the weight of 80 elephants standing ontop of each other, Without the brick breaking. :brick::elephant::elephant::elephant::elephant::elephant::elephant::elephant::rofl::rofl::wink:

Who would have thought a Science Podcast could be a brain expander and a sleep inducer all at the same time. :exploding_head::person_in_bed::rofl:

In the second week I get to go out in the car. So thats nice. :national_park::automobile::world_map:.

I use taxis in the first week :taxi: for hospital appointments and any food shops. :shopping_cart::shopping_bags: . Im not up to high social events in this first week. My body, and chemo brain, crumble too easily. But thats fine.

So I potter in my garden, catch up with friends via texts, come on this fabulous Forum :heart::people_hugging:, and meet you amazing ladies, etc. Generally chill. Im careful.

I tell myself it will be over soon. :person_in_lotus_position::person_getting_massage::person_taking_bath:. Sleeping so much means It halves the weeks. :wink::sleeping_face::spiral_calendar::hourglass_not_done::person_in_bed:

Its a tough treatment :angry_face_with_horns::nauseated_face::face_with_medical_mask: isnt it :flexed_biceps::mechanical_arm:. So we need to be kind to ourselves :heart::people_hugging:and pace out the days carefully. We need lots of TLC :people_hugging::heart::heart::people_hugging:. Chemo is brutal.

I do have moments I want to scream and throw the toys out with the bath water :person_taking_bath:. :enraged_face::face_with_steam_from_nose::teddy_bear::yoyo:.

But like a bloomin boomerang :boomerang: it never really helps. Those pesky feelings just come back to hit me harder when I realise the treatment has to happen no matter what. :face_with_head_bandage:. So too much anger makes my days worse, not better. So I cling on to the better thoughts :person_climbing: ride the wavesā€‹:person_surfing:, chill :person_in_lotus_position::sunrise:, sleep :person_in_bed:.

It will be August soon and my worst chemo treatment will have finished :crossed_fingers::crossed_fingers::crossed_fingers::partying_face:.

Ive still got radiotherapy and hormone blockers after that. :dna::stethoscope::microscope::pill: . So I have to navigate a new way of living. :yin_yang:. Yin and yangs will always happen.

But I am a firm believer in being kind to myself. :heart:Accepting my limits. :snow_capped_mountain: I cant climb Everest, but I can walk by the river. :national_park:

Its important to Nurture ourselves back to health, in the kindest way we can. Life will still throw LIFE at us in amongst all of this. Its a tough call to navigate.

But we are strong :flexed_biceps::mechanical_arm:, kind :heart:, caring ladies, :people_hugging:, with an ability to push through the worst life throws at us. :flexed_biceps::mechanical_arm::bouquet::hibiscus::sunflower::maple_leaf:

We must always look for those rainbows after a storm :cloud_with_lightning_and_rain::rainbow:. Its what will get us through some very tough days. :heart::heart::heart::people_hugging::flexed_biceps::bouquet::hibiscus::person_in_lotus_position:.

Ive ordered a second Knitted Knocker. Its being made as we speak. They are surprising me. :smiley::partying_face:. The first surprise one, was beautifully knitted, with rainbow colours on the back :rainbow:. Just perfect for my philosophy.

I think it is wonderful that total strangers take time in their day to make me a beautifully knitted boob. :people_hugging::heart::smiling_face_with_three_hearts: .

There is hope. People do care. :heart::people_hugging::bouquet:

2 Likes
118

Hi Everyone

I will be starting Pac in 4weeks time but I keep hearing mixed thoughts re side effects.

Any advice/sharing experiences, re especially for Neuropathy, metallic taste, would be grately appreciated. :heart::heart::bouquet::bouquet::person_in_lotus_position:

119

The side effects can differ each round i have had some neuropathy in my hands and my tounge feels a bit sore , but i have only had 2 so far , my first pac caused a lot of bone pain, i think it may possibly get worse as it goes on

120

Thanks @cazgib10 . It seems abit of a lottery doesnt it. :thinking:

Theres mixed research around cold packs, compression socks as well. Though 10 yrs ago I think more people had problems. But they seem to be reducing amount of Pac given to reduce problems.

I have Oncology appointment on Monday. I need to remember to ask her about it in more detail.

Hoping your symptoms dont get worse with next treatment. :crossed_fingers::heart:. It tough going isnt it :people_hugging::bouquet:We want side effects to improve not get worse. :person_in_lotus_position:

Sadly EC gets worse each time for me. So I will be glad when I have my last one in a weeks time.

I write off the first week and Just look after myself in this week. Easier said than done when you have teenagers though. You do so well :heart:. Xxx

121

@poppy261 I have to be honest with u I have managed really well but now I am struggling to get to the end , mainly because my side effects have been manageable throughout but now I am begining to flounder it is getting very difficult for me mentaly to continue , I dont want to give up getting so close to the end but i just cant seem to find the determination i once had , my Family have never seen me in a situation where i have looked like I was on chemo , so it hasnt really affected them much thats where , the struggle is I worry that they wont deal with it well if i become very unwell suddenly as its tough now xx

1 Like