@wibbles - thank you so much for the advice, encouraging words, and for sharing your experience. I am so sorry you’ve been through such a tough time. Congrats on making it through 
Hmm, I also have an allergy to penicillin! I wonder if there is a connection there.
I am currently reading a book by Dr Jason Fung called The Cancer Code and have learned that one of my drugs, Cyclophosphamide, has been around forever and comes from mustard gas! So no surprise to me that my body is not having a great time.
Thanks for the advice about seeing my oncologist. Yes, this is already booked in the diary and I already have my documentation ready to discuss with her. I also took photos of the skin reaction so she can see those.
Fingers crossed she can tweak things to where it’s not so bad next round.
Morning ladies, I hope you are having a good/better day today. It’s a wave, peaks and troughs, every day can bring a different challenge.
I’ve just popped over from the May starters to share some info regarding dry eyes. I suffer with dry eyes/ rubbish tear film production all year round. Chemo has made my eye so very much worse. You ladies may wish to buy some eye drops just in case…….Hypromellose is a cheap product, very basic….usually kept behind the pharmacy counter. I believe you have to throw it away 30 days after opening( like most eye drops). This may work well and you can put it in as often as you need. I use Boots Intensive Dry & Irritated Eyes Preservative Free Eye Drops 10ml. It’s not cheap and other brands are available, also not cheap. The delivery system is what makes this product keep for 6 months after opening. The mechanism does stick a bit, but you just pump it a few times lol. This product is also preservative free( My eye doc told me to use preservative free ones, as I have a long term condition). A quick chat to the pharmacist may be a good idea. Some shops do a buy one get one half price deal. I hope this helps.
Lots of ladies that struggle to eat recommend making fruit smoothies. Cows milk has a good protein count, so sometimes a bowl of cereal with lots of milk just hits the spot for me…..that was my dinner last night 
. My chemo tongue also likes the fruit corner yogurts….its the fruit I can taste lol. I did enjoy a Mediterranean quiche, nice warm and cold lol, good protein count because of the eggs 
Hopefully, you will find what works for you, it’s a bit trial and error, and we do have to force something down at times, as our body needs it.
A big hug to you all. It’s a journey and a half, we all react differently. The best thing about this forum, we share the good and the bad ( good to get the bad out of our heads sometimes!!), and info. Just know, there is a lot of love on here, and you are not alone.
Have the best day that you can today.
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I am new here and first time posting although I’ve been reading the threads for a while. I have tnbc and start chemo and immunotherapy Friday 17th July very similar to you. Scared but also need to get started now.
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Hi all, just thought id update. Had paclitaxel/carboplatin/ pembro combo for the first time this morning. All a lot better than expected. I cold capped and it was uncomfortable for ten minutes but after that, not too much bother. It did make me very cold though, despite headwave, so will bring warm blanket next time!
Infusions went in with no problem (have a picc line). Pretty streamlined process and the whole thing was about 4 hours all in.
Feeling ok this afternoon, a bit sleepy and foggy headed but that’s all. Glad to have got through the first one, only 15 to go!
Good luck to all those starting in the coming days. Maybe my standards of what constitutes a ‘good time’ have slipped beyond all recognition since having kids, but i actually enjoy having a few hours to be forced to sit down and watch crap tv with my husband!
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Glad it went well. This will be me next week and it has given me confidence 
. When you say only 15 more to go? I’m having 12 weeks of this regime (3 weekly pax/carbo/pembro and pax weekly) then switch to EC and pembro 3 weekly. Are you the same? Are you based in the UK? X
Hi all,
It’s been a while since I’ve posted and things have been up and down since my first infusion on. Monday 29 June
On the Saturday I woke up with the most painful nose! Both inside and outside were incredibly painful. I spoke to my unit and they asked me to come in but was eventually told it is a normal side effect.
The weekend was hard with aches, pains and fatigue but I thought things were improving as we started this week
On Wednesday, the slight rash on my chest had spread to my face - lots and lots of spots that were dry and tight. Back to the unit and they gave me antibiotics (another one here allergic to penicillin!) and a antihistamine.
Last night, I had severe diarrhoea- I got really worried as it got to 10pm and there was no sign of it stopping. So called the unit again, and they said to take an Imodium. I did get the feeling that i was bothering them. I find it really frustrating as I am not one to get worked up over things but reading the book, diaroah is a red flag and no one has said to take an over the counter remedy! I don’t want to be that person that keeps calling all the time - I know everyone says they would prefer to know but it really didn’t feel like that when I called last night 
Hey, yes, the exact same! Will hopefully be done just before Christmas. Im in the north west, where are you? Hope it goes ok today. Im still feeling ok this morning, a little nauseous and tired, but nothing too bad
@cfc_jc take photos of that rash to show your oncologist as sometimes you can get a delayed reaction mixed with something else. There are lotions and potions they can prescribe that can help make your world a nicer place even with allergies.
If you too live with dynorod your oncologist can prescribe lomperimide (Imodium) on prescription with your other post chemo meds. They do however need you to let them know and yes keep calling that red card number for advice. If it does not seem right, will not stop or hurts defiantly call and be a little assertive as sometimes you get the nurse at the end of a hell shift on a hot day who has found they have dealt with way too many PITAs b who have refused to follow advice etc. the thread cancer made me eat in the tips section is a good place to go if your struggling with food. I used it a lot when dynorod and digestive side effects hit hard and the ladies there are happy to share tips and simple recipes that helped them. If need e our oncologist can refer you to a dietician if dynorod hits your blood results. In thI h try and stay as hydrated as you can and l can recommend diralyte as your back up for when dynorod hits hard. Tastes foul but helps by keeping blood electrolytes up which helps you feel less ill. If you need dirolyte definatly call the red card for advice. IF need be they can grade how bad it is and advice accordingly. in this hot weather make sure you know the signs of possible dehydration and also heat exhaustion as you will be at a higher risk of those developing with chemo runs.
IF your able to take paracetamol that can help off set some of the bone aches that chemo causes and certainly can be caused by the pelgrave and filistigrim post chemo injections as they push the bone marrow to make those extra good helpful blood cells. I always take my temp and record it before taking any paracetamol as good practice.
a compassionate chemo nurse can show you how to position your body with extra pillows to give some relief to achy joints as can gentle mobilisation rather than weight bearing excercises. I always found it best to stick with gentle mobilising in the first week them build back up. Tried doing way to much the first time not realising I was one of the ones who would be hit hard by side effects and found out the hard way. start gentle and slow and build up if your fine. gentle do some rest some housework, gardening, exercise’s, looking after your kids and reasonably adjusted work can help make you feel a bit better mentally and physically but it is hard to get going when chemo side effects hit you hard. been there and ended up with GP signing me off all work for the foreseeable due to the impact chemo side effects have had on me. had to rely on a LOT of support from my Dh and kids too. That said my oncologist has worked very hard to come up with ways to manage the side effects for me and it has been a bit of trial and error but it has also slowly got a little more doable to the point they think I could manage a few days away between ending presurgery and surgery as long as I agreed to have a full blood screening test before to check if I needed any transfussion before I go, be be near a UK regional hospital and dropped my optimistic idea I was fit enough to travel to walk on the fells. Heading to Norfolk as it’s closer and flat and found a very good deal on an Air B&B as someone had to cancel when I could go. I have even SHOCK managed a couple of days out on round five something I have not been able to do since this all started.
BEar in mind you can call your oncologists secretary and ask if you can see your oncologist or speak with them on the phone if you are being hit hard by side effects. If you do not let your oncologist know the side effects are ruining your life they cannot prescribe something or give you advice to help you. remember chemo nurses can only organise drugs that your oncologist has prescribed for you. yes they will seek advice from your oncologist or a dr on their team if you report extra side effects on the day but that can delay the start of chemo on the day and can leave you with a very very long and boring day as chemo will not begin without a doctors saying it can due to side effects.
That’s good that you’re feeling not too bad. I start next Friday - so a week today. I’m also in the northwest! Would be good to follow each other’s journeys. Feels a bit lonely especially when I look at all the other Mum’s around me who seem care free and happy and all of a sudden my life has flipped on its head. Feeling sorry for myself today. Need to get started. Maybe mentally that will make me stronger. Who knows. Xx
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Hey @daffodil10
I’m on the same regime as you and started at the end of May so if you have any questions I might be able to help with, feel free to fire away!
All the best with your treatment. x
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Hi thanks for reaching out. how are you getting on? I’m dreading my first treatment next week but I also need to get started and get this done! I’m worried about the side effects and not being able to do normal family stuff with my kids. Should I be able to still do most things even if at a slower pace?
Did you cold cap? I’m thinking of not, I don’t like the sound of it and that it adds so much time to the appointment when I don’t want to be there anyway but maybe I’m still in denial. I would hate my blonde hair to go but I know it’s inevitable. I’m 47 and my kids might find it hard to see me looking different so maybe I should try. The only thing is I was thinking of wearing those frozen gloves and socks for neuropathy and the nurse told me I’d be too cold to use them and cold cap so I don’t know what to do. Any advice?
I really hope you’re doing and thanks so much for reaching out. Everyone is so kind. Xx
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Can i ask how you got on with the carboplatin weeks? Ive had a pretty rough day with sickness, two days on from chemo x2 and immuno. The hospital have given me some other antisickness to try so hopefully I’ll do better on those. But am dreading feeling like this weekly! Did you find the weeks of just one chemo better?
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Hey @wildthingsare
Sorry to hear you’re not feeling so great. Having those three drugs together can be a lot!
I’ve had three rounds of the Pembro/Pac/Carbo together now and they’ve all hit differently. I actually can’t remember having much by way of side effects the first time, but the second time I felt so sick I actually vomited three times that same night. That’s not happened again, but one consistent side effect I get from the “big three” as I call it is stomach acid issues for about a week after so I think it could have been related. They’ve given me some pink stuff to drink for this, which tastes horrible but does help! Last week was my recovery from my third infusion of the big three and I felt quite a bit worse than I have done previously in that I was very tired and weak and was intermittently lightheaded for most of the week. My last blood test showed low haemoglobin so this probably accounts for some of this and I think the heatwave also contributed massively.
The good news is that by the time my first Pac only week of the cycle comes round, I feel a lot better! The following couple of weeks are generally good and have followed the same pattern every time. I have the Pac infusion on a Friday, feel absolutely fine on Saturday, then I dip in energy and mood on Sunday and Monday, but this is not severe and I just ride it out until I feel absolutely fine again on Tuesday, Wednesday and Thursday.
I hope this leaves you feeling that it might not all be terrible for you for the whole of the three week cycle and you might have to just wade through the rough to get to something a little smoother. Do always call your helpline though if you think something’s not right.
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Hey @daffodil10
I felt the same when I first started. I don’t want to do this but want to get it done! I know it’s daunting, but just know that you will be massively supported throughout the whole thing by a wide variety of people and I’ve found that support and remembering why I’m doing it makes it all that more doable.
It’s hard to say what you will and won’t be able to do as the side effects can vary from person to person so I’m afraid it’ll be a case of trial and error. For me, the week where I have all three drugs has been different each time with the most recent leaving me pretty useless for most of the week after - my last blood test showed low haemoglobin so this could account for this in conjunction with the heatwave - but the two weeks where I just have the Paclitaxel do tend to follow a pretty predictable pattern for me and I feel fine for most of those.
I’ve not used the cold cap, no. I actually started on a different regime initially in April before I switched to this one in May and my very first chemo round was a single dose of EC. I wasn’t able to use the cold cap for various reasons and my hair went quite quickly. You can learn a lot from other patients in the chemo unit and from what I’ve observed of cold capping, the results vary wildly. If you want to and are able to do it, it might be worth you just trying it and seeing how you get on. I get what you mean about not wanting to add the extra time on to your appointment though as it can be a very long day anyway. My record is 8 hours so far but I’ve spoken to other patients who are on the same regime without cold capping who’ve been there longer! With regards to neuropathy, I’ve been doing this for 8 weeks now and have had no hint of this to date. I’m not sure if age is a factor in that risk, but I’ll just let you know that I’m 47 also for context.
On the whole I’m doing really well, thank you so much for asking! There are ups and downs and days where I’m just sick of it all no doubt, but as I’ve said, the support of others plus keeping eyes on the prize gets me through. I think you’ll find what gets you through too.
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Hey @mssteel
Thanks for the really helpful and supportive reply. You sound like you’re doing brilliantly despite it all being very tough. Good for you. Sounds like a treadmill but manageable ish! Interesting that we’re the exact same age.
I might give the cold cap a go. Interesting you’ve not used the frozen mitts and not had any problems. I can’t imagine it’s easy to read a book or anything like that with them on too!
What sorts of things are you eating? Do you take snacks to chemo and what are your go to foods in your rougher days? I might stock up this week whilst I’ve got the energy. I’ve already lost some weight from the anxiety of it all so I need to make sure I keep my strength up. Xx
Morning all , just an update from me re first EC. I did cold cap so was there from about 9-2.15. I took a lot of water and just drank when I could . The suite bought around regular drinks and snacks which was good. I’m day 4 now and apart from tiredness and being a bit quiet I’ve managed ok . The first night I got back I was nauseous but tried to eat and took myself off to bed . I’m trying to eat better at home and get out on daily walks . I know EC is culimative and more effects will come as they go along but at the moment just taking it day by day . X
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Yes, treadmill but manageable-ish actually about covers it!
I dropped weight through anxiety in the run up to starting this regime also but my weight has now been the same give or take a pound or two since I started at the end of May. In terms of food, I did go a bit nuts on trying to overhaul my diet when I was first diagnosed back in November as I became quite paranoid about whether what I was eating was causing or feeding the cancer and thought I could eat certain foods to fight the cancer. I’ve been told this isn’t a thing by multiple medical professionals but my fear kept me at it for a while. Those thoughts have now stopped and I just eat literally whatever I want. My diet doesn’t change throughout the whole chemo cycle either, although the taste of some things can be slightly skewed in the couple of days after the infusion but I know it’s expected and temporary so I just ignore it.
I don’t take anything to chemo that wouldn’t normally be in my handbag (phone, keys, purse etc.) with the exception of my chemo alert card and consent form. My unit provides biscuits, hot and cold drinks and sandwiches so I don’t bother taking anything like that with me either. You can always check that before you go but you might find you want to take your own stuff. anyway I’ve seen plenty turn up with a nice little picnic for themselves.
I’ve not actually seen anyone else in my unit using the frozen mitts to be honest and it’s not something I’ve ever discussed with either my oncologist or any of the chemo nurses. I’ve seen a lot of cold capping going on though and the nurses explain everything to the patients before going ahead so they should be able to help you make an informed decision that’s right for you on that.
I don’t know if you’re having a PICC line or similar or will be using a cannula in the hand, but if it’s the latter, I’d have a think about what you’re wearing in terms of undressing and redressing yourself while visiting the loo while you’re there!
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@mssteel can I just say that I am finding your responses to the questions on here so helpful and calming.
Thank you so much x
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You’re so welcome, glad I can help. x
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Thanks @mssteel really helpful. I too have gone mad overhauling my diet which was already good. Think I need to chill out on that front. I’m having a PICC fitted on Thursday. Can you just wear normal clothes with a PICC? I’d like to keep it covered so it’s not totally obvious to the outside world but in these temperatures I’m not sure a T-shirt will cover it! X
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