Hi @chellebelle, I hope you are going okay. There are separate threads each month for new chemo starters. It means you can connect with people going through the same things as you at the same time. There are lots of recommendations on them for different side effects. My group for example is the September starters from last year.
Once you know the medications you are to be given (all chemo is different) you can look at side effects and people’s solutions. Good to remember we are all different and you probably won’t experience all the side effects listed. But as you asked here are the things I have bought which were most useful for me. I have been on Doxetacel, Carboplatin and Phesgo six cycle with three week intervals.
Taste issues (normally worst between day 3- 5 after treatment) - food thermos to take ice cubes to suck during treatment. I think this has helped me, although it has been hard to find evidence online. Boiled sweets to suck when taste worst. Raspberry queasy drops, sherbet lemons, chocolate limes. Ribena and pineapple squash also help with taste. Spices and herbs in meals to improve taste (even on good weeks things taste a bit flat). Thermometer to check temperature: the one which goes in your ear. Hot flushes - small hand held electric fan Hair loss - beany hats, get several so you can wash them. They are comfy and keep your head warm at night. I haven’t gone for a wig as found it too much hassle but this is a very personal decision so you do you and find what suits. I also didn’t cold cap as one of my treatments said universal hair loss. You might find your treatment is different. Dry skin - E45 - lip treatment has been good on lips but also very good on dry hands, Plus E45 shower gel. A friend also got me oil based bath bombs which have been really nice to use once per week to hydrate and make skin less dry. Acid reflux - massive bottles of gavison - check with your chemo team if you can take this with your meds. Constipation - Lactulose and Senna - as above check with your chemo team if you can take this with your meds. Hydration - two litre bottle to measure out water for the day and make sure I get through it. I use an old fizzy drink bottle.
But my advice would be don’t go mad buying everything in advance. There will be plenty of time to hit up the internet when you start to get symptoms. I would start with the themometer, some queasy drops, E45 shower cream and a soft hat if it looks like you will lose your hair. You can built up from there when you know what you are up against. Good luck and let us know when you know your meds as you will probably find some people on this chain with same treatment who can personalise the advice a bit more.
Hot flushes- you can buy a cool towel, that you dampen and wrap around your neck or dab on face. It can help but it does warm up quite quickly. I find fans irritating so standing on cold tiled floors help me or reducing layers including bedding being flung off, then getting too cold I snuggled back under. constipation/ Diarrhoea- some chemotherapy can give you one or both. I was on Paclitaxel and had both. Your team should prescribe senna/lactulose or loperamide (Imodium) if required for your treatment. Mouth ulcers/soreness- clean teeth after every meal, rinse with salt water/bicarbonate of soda or get Corsodyl/clorohexidine mouth wash. ( can be prescribed) Acid reflux- I was prescribed Omeprazole Hair Loss- I cold capped and kept most of my hair. Please look at and contact www.cancerhaircare.co.uk or www.lookgoodfeelbetter.co.uk and www.coldcap.com .Depending on your treatment you may be able to try cold cap, you don’t have to cut your hair. I had a bob and cut to a pixie, I didn’t need to. They only recommend cutting if your hair is very long as it is heavy on your scalp and looks like more hair shedding the longer it is. Taste Issues- I went off sweet things preferring more salty/savoury. I preferred citrus to berry flavoured drinks etc. smaller portions little and often. Nausea- is quite common and you are prescribed medication which you need to take regularly, if it doesn’t work, phone and they will change to another drug.
As you can see different people on different drugs react differently. The best advice I could give is if it doesn’t feel right, call your helpline. No question is a silly question. I read through a couple of months comments on chemo starters threads to get a feel for what to expect. There is also a monthly thread for radiotherapy starters if that’s in your treatment plan.
Thanks so much ladies. It’s interesting to hear different people experiences and thank you for the advice of little bits to get ahead of time. I’ve got my surgery in a week and then I’m sure once they know about the lymph nodes they will confirm what treatment I’m expecting next and go from there.
Hi @chellebelle My surgery is Tuesday this week. We may well be starting chemo at the same time. I’ll also know more about my other lymph nodes when the results come back. I had my bone scan and CT scan yesterday. This waiting, waiting, waiting for results is horrendous.
Absolutely…hate waiting, I feel like an imposter right now because everything seems normal though I know it isn’t. I haven’t had a CT scan or anything just the results from the biopsies.
@salbert good luck for Tuesday. I hope it goes well and you get a better idea of treatment.
@chellebelle do not feel like an imposter. The waiting is one of the hardest parts. Everyone is welcome here no matter where they are on their diagnosis and treatment path. I am just getting to the end of my chemo but don’t yet have a date for surgery and I am dreading the next few weeks of waiting for that date, feeling a bit lost in the system. Do call your macmillan nurse if you are struggling and need some help navigating the system. I’m going to start hassling mine in two weeks if i have not heard anything. Also worth finding out what day the team review treatments. Once I knew my NHS trust does their reviews on Thursdays and call on Fridays I stopped wasting Mon-Wed staring at my phone willing it to ring.
@chellebelle I know exactly what you mean. I am trying to behave as normal and do the whole ‘put cancer in a box’ thing but at the back of your mind it’s always there. I wake a few times a night and it comes crashing in like a wave and with it the anxiety. Then I have to breathe and try to talk myself round again and I seem to wake up exhausted. And I know that is all mental. It’s been just over 2 months since my diagnosis and I hope and pray that Tuesday is my last surgery as I don’t know how much more of this waiting for results and for treatment to start, I can take.
When I said that to my MacMillan nurse she said ‘You are in treatment’. I know what she means but all the time I keep having to go back for more surgery I am frightened that it is spreading elsewhere without being able to start the chemo and Herceptin.
Thanks @frazzledmcsazza You sound like you have done it the other way round with chemo first and surgery afterwards. It’s all super stressful whichever way round you do it. Good call re finding out what day they have their team meetings. You want that phone to ring while at the same time dreading what news you might hear.
I’m sorry if I sound negative today. I’m just being absolutely honest because I feel I can on here.
@salbert negative is just the way it goes sometimes. Tomorrow is another day and your mood might have shifted. Sometimes the whole world wants to tell you to be positive. Normally when someone says that to me, if I am not feeling it that day, I just issue some stern expletives in my head.
I am the other way treatment wise, neoadjuvant chemo i.e. before surgery as my tumour was quite large so they wanted to shrink it before surgery. So soon you will be giving me advice about coping with surgery. We will both get there but just by different paths. I hope you find something to take your mind off things over the weekend when you know there won’t be any news. It will come in time and you will find the strength to deal with it no matter what.
@chellebelle don’t feel like an imposter. You have been diagnosed and are waiting for your treatment plan. This is probably the worst time in the whole process. We have all been there. This forum is for everyone associated with breast cancer.
As @frazzledmcsazza has said call your breast care nurse for a chat. I had several delays because results were ready but as soon as they were the MDT met and I was called in on the next clinic day.
@salbert don’t worry about sounding negative, we all have ups and downs, and we are all hear to listen and support. Sometimes it’s easier to say how you really feel on here, rather than to your own family and friends. They are going through at lot too and we don’t want to burden them more. It’s totally understandable that you are feeling nervous, anxious, worried and many more feelings as you are due more surgery on Tuesday. Fingers and everything crossed that the outcome is positive and you can then move onto your next part of your treatment plan.
Hi folks…late to the party…as usual for me. Im not very good at involving myself in things…but having tead through these posts I feel comfortable adding to them as everyone is very welcoming…and we’re all in the same boat, some of us paddling frantically trying to stay afloat…and some of us just going with the flow…and for many of us riding the waves holding on for dear life! My story is very similar to many of you. Found a lump on my right (.)… visit to doc, referred to (.)(.) clinic for mammogram end Sept. Right (.) was fine…left (.) not so fine! Widespread calcification and mass found so multiple biopsies (they couldn’t find on the ultrasound what they could see on the mammogram). Back 2 weeks later for results to be told calcification was not pre-cancerous but needed to do more precise biopsies. Long story short…2nd lot of biopsy results showed calcification WAS pre-cancerous and the mass was cancer… first biopsies they were basically digging in the dark hence wrong diagnosis. Her2+ invasive dcis. Have had mastectomy without reconstruction… was to terrified to wait the extra weeks incase it spread so opted not have it…wanted the bugger removed as soon as possible! Turned out there were 2 tumours found which was a bit of a shock. So this week is chemo week and im really not looking forwards to it. I will try the cold cap but have read its not pleasant. Like many of you…every week for 12 weeks of chemo alongside herceptin injections. Ive been very positive throughout and hope I can maintain the positivity during treatment. Wishing everyone well on their individual boat rides…and hope we all achieve smooth sailing on our journeys. God Bless x
Morning, my buddies and welcome @mandz1 It’s ok that you’re late to the party! Making an entrance is fine by us. Let us know how the chemo goes.
I’m feeling a lot more positive today and thanks for the encouraging words after my gloom dump on Friday. My GP friend told me about her sister on Saturday who got diagnosed with Stage 4 breast cancer 9 years ago!! She has a group of other Stage 4 breast cancer friends who are all living with it. It was in her liver, lungs and brain and they have got rid of it in her brain and the tumours in her liver and lungs just sit there and do not grow and she has ongoing treatment. She is off to Dubai in a few days. She was 50 when diagnosed. I found that so inspirational. She got me to go down the pub and I had a lovely night with my friends and realised that I don’t need to be living in a constant state of fear. It doesn’t help.
Whilst I was at the pub I saw a couple of friends who are in their 60s. One of them has an incurable lung condition which is terminal and the other has just got over breast cancer and has Parkinson’s. There they were, joking and laughing with everyone. She said to me that it doesn’t mean they don’t have their dark, bleak times but that they want to enjoy all the time they have. She also said that she didn’t worry about the breast cancer as she knew they could deal with that but that she worries about how she will cope with the Parkinson’s once her husband has gone.
This gave me a massive kick up the arse! I have had great health for 53 years and have taken it for granted. I have a choice. I either let this drag me under or I fight, fight, fight. Saturday did me the world of good.
We can do this, my friends. We are so lucky to have excellent treatment available. The sun is shining today and the sky is blue and we have so much to live for.
Get me, Mrs Positivity Sunshine!!
Big love to you all. Make sure you all do a bit of what makes you happy today.
Magic Sal! Onwards n upwards. Great to hear youve hit a positice streak. Long may it last. No doubt we’ll all have down days and be swimming against the tide…but what doesnt kill you makes you stronger. Heres to many more ‘Saturday nights’ x
Hi @mandz1 sorry you’ve has to join our club. Hope you are doing okay. You sound like you are. Good luck with starting chemo. I recommend joining your monthly starters group for Jan so you have some buddies on the ride with you.
@salbert what a difference a day (and a night at the pub!) makes. Glad you are feeling a bit better. There is a very good TED talk on resilience. One of the three pillars is acknowledging that everyone suffers at some point. Your post made me think of it. Hearing about your friends. Sometimes knowing you are not alone does really help and also realising others have different but equally hard issues does put things into perspective at times.
Welcome to the group you don’t want to be part of. It’s ok to join in, read and take it all,in. Everyone is different. I was sceptical of this online community but found it a real life line, with total strangers checking in on me, supporting me and encouraging me.
I’m so sorry to hear your story but you have a plan, just try your best to take each day as it comes. I did weekly Paclitaxel and managed the cold cap, maintaining most off my hair. It wasn’t easy and it more time consuming but worth it. I don’t look like I have cancer and you know what I mean when you’ve been to clinics. I didn’t want to be the person that people look at and feel sorry for. I know many can’t help their hair loss but if there is something that may prevent it it’s definitely worth a try. These websites may help.
Hey naughty_boob…thank you so much for the ‘heads’ up re the help groups! i truly appreciate your time. I will have a look at them and weigh things up. So many different people with different opinions and outcomes…but i guess in the end it’s a personal choice. Hope things are going well for you. X
Bloody hell! That was a painful op. I still have a nice tube and drain coming out from my right armpit but the pain has subsided today, thank goodness.
So that’s all my lymph nodes gone.
Just checking in to say hi, buddies. Hope you are all ok and have a lovely weekend.
Let us know how the chemo goes.
i truly appreciate your time. I will have a look at them and weigh things up. So many different people with different opinions and outcomes…but i guess in the end it’s a personal choice. Hope things are going well for you. X