Oh you brilliant, brilliant women.
It is so good to hear that an aggressive cancer (horrendously bad news) is also one that falls quickly when it’s attacked back (super good news). Nobody told me that before so that’s fantastic to hear.
I love that…. a crap club with the best members!
Sleep well, lovelies.
Hi Naughty Boob (love the name). I’d love to chat more and especially hear any tips you have to get through the 12 weeks. How did you find it? I am feeling very apprehensive about it all. I had my surgery in London, though I live in the mIdlands (long story), but that worked fine. I’ve decided that I would prefer to have the oncology side of things done more locally, so I’m just trying to get all that sorted. It’s been a little delayed by Christmas, but it’s been nice to get off the cancer bus for a while and just try to enjoy life. I’m pleased to hear that the cold cap worked for you. I’m going to try that too & luckily I don’t wear glasses, so one less thing to worry about. I do hate being cold though, so I’m going to have to bring along some warming props I think.
Like you my brain is very foggy. I was on HRT until the diagnosis, so that may be part of the reason. I co-own a small children’s nursery, looking after the admin side of things, working from home - so fortunately not too much exposure to the constant rounds of infections from the little ones. I have managed to get one of my sons to take over a lot of the day to day stuff, but as an owner of a small business, it’s been very difficult to stop working completely. I don’t know how that’s going to go once the next stage of treatment starts! I’m also not feeling very inclined to go back to my old workload once treatment finishes. I feel like my life has changed so much in just a few weeks. Thankfully, my husband has been fantastic & I’ve been so lucky to have lots of support from great friends and family. I used to be the fit and healthy one who looked after everyone else, it’s hard to cope with such a big change! xx
Hi guys
Somebody mentioned the CALM app. I downloaded it last night and got very angry at a man telling me I was relaxed but then fell asleep! This morning whenI woke too early I did a guided meditation and went to sleep again.
This is very encouraging so I wanted to say thanks to whoever recommended it and do the same for everyone else. Lots to choose from on there.
Also went for a lovely winter walk with my husband this afternoon and that helped too. Anything to take me away from depressive, doom-laden, spiralling brain.
I’m told distraction and do lovely things for yourself. I guess it’s obvious really but it helps. Also somebody told me about a grounding technique, The Butterfly Hug. I was doing this in the car this afternoon in time to ‘Dirty Old Town’ and singing along. Seemed to also help. https://www.youtube.com/watch?v=iGGJrqscvtU Fortunately I wasn’t driving!
And now we’re off to see friends and I’m bloody well going to enjoy myself!!
Love to all,
Salbert
xx
Hi lmd1
Please include me in the chats. Can we do them on here? I want to know what to expect and compare with my new buddies. Really good to hear the cold cap worked. I’m going to try that too. I’ve always hidden behind my hair and I’m too scared to brave the shave.
I too did HRT cold turkey so wonder how much misery and upset is aided by that.
You also work with little children. I wonder how much stress of workloads is responsible for illness. I wonder if I may also cut down after this. Priorities changing and all that.
So much wondering…
Anyway, I must dash.
Is it too soon to admit that I am a big Eurovision fan? Will you all disappear? I’m sane! I’m fine! Really…please stay!! 
Sal
x
Hi again Sal,
I should add I also had Pertuzumab alongside the Herceptin, another drug I felt very lucky to be able to receive as I know at one time it wasn’t available to all areas of the Uk. I also have IV Zometa infusions every 6 months but don’t have any problems with these. There is so much help available, keep in contact so we can hear how you’re getting on, take care.
Re Paclitaxel for 12 weeks. I had Herceptin injection on my first week and then 3 weekly, I don’t noticed any extra side effects on those weeks. As I’m due to have the Herceptin alone from next, I’ll know more about its own side effects.
The first two weeks of Paclitaxel were ok, unfortunately, on my third week I had an allergic reaction after 20 minutes, felt sick and hot in the face. I was then sick quite badly. I was given iv Piriton for the allergic reaction but had to wait over an hour for an anti sickness IV ( even though I’d already had it as a pre med) as I was in an outreach unit run by nurses and they couldn’t get a doctor to prescribe! I was informed that if you have an allergic reaction it’s usually in the first few weeks. They say the body suddenly recognises the chemo and then says I don’t like it I need to get rid of it. I only had half the infusion as there was no doctor present they couldn’t restart, if I had been at the main cancer centre, they would have. On my chemo starter threads June and September, other have reacted and were swapped to Abraxane, still Paclitaxel but with albumin, also called Nab-Paclitaxel. So there is always options. Don’t worry!
The next week I was prescribed some drugs to take at home the day before, after chemo and the next day (antacids, antihistamines and steroids). The premeds stop any further reactions. Side effects lasted longer and increased over time. They tell you that the chemotherapy is cumulative.
At first I had sore mouth and throat, had thrush in the second week, GP prescribed Nystan, resolved quickly. My taste changed, I preferred salt foods and water tastes so horrible. I preferred citrus flavoured drinks rather than fruity. I was given a mouthwash after 8 weeks up until them I was gargling with salt and bicarbonate of soda in water. I cleaned my teeth after every meal.
Had diarrhoea on the night of chemo and was prescribed Loperamide, told to take as soon as you have it. Oncologist had warned about this and the first chemo they didn’t prescribe so husband running to nearest supermarket at 8pm for Imodium (brand name for Loperamide). So make sure they give you this! This worked well but was then constipated for a couple of days and an iffy belly until next chemo. Around week 5/6 at my 3 weekly clinic, told could take the loperamide in small doses over the whole week if needed as the chemo affects from the mouth all the way through you to the other end! Had wind and cramps, given Buscopan but they didn’t go with the anti nausea, so they were swapped. Didn’t take more than a day to two.
First anti nausea was Metochloperamide, swapped to Cyclizine which worked well as you could take for up to 5 days and towards the end I needed them for at least 4 days, 3 in the early weeks. The nausea wasn’t too much of an issue if you take the medication regularly. I also had some pustules/spots given fucidin cream. GP said it’s not the worst of my problems, but I’ve always struggled with my skin, so it was a big issue for me.
My hair follicles were sore, had to wear a hat if outside as I could feel the slightest bit of wind! My hair shed a little and I only washed it once a week after chemo, brushed daily and treated the scalp once a week. I used Percy and Reed scalp shampoo, conditioner and treatment. Not the cheapest but have used for menopausal hair loss. I had tingling and numbness in fingers and toes, the oncology team were only bothered if it was permanent/persistent, it came and went, worse at night and early morning. I dropped a few things and buttons were an issue.
My skin was very dry so I moisturised everyday. Unperfurmed as I was very sensitive to smells, I even bought a cheap Aldi perfume to wear for my time in chemotherapy so I didn’t dislike my own perfumes.
I caught an infection after week 8 and had a temperature, went to the cancer centre given oral antibiotics as they said my temp had gone down, 6 days later I was in hospital on oral antibiotics (4 different types) for 6 days. Missed 2 weeks of chemo. It was an unidentified infection, thought it was a UTI. Temperature took 4 days to reduce then my bloods went haywire! Liver needed a scan early December, awaiting results but everything settled with a few weeks in my bloods.
Last 4 chemotherapy I only had two good days and one of them was in the chair again. We spent at least 6 hours up to 7 1/2 with travelling, cold cap and infusions. So not much else could be done on that day. My nails began to get sore near the cuticle, red and inflamed. I had done the www.lookgoodfeelbetter.com course and its was great. Moisturise daily and treat cuticle with a balm, if infected or nails fall off use Vicks Vaporub ( it works, the Vaseline texture protects and the camphor is anti bacterial). Would highly recommend all their course I did mine online and received good in the post.
I think I’ve covered everything. It sounds horrendous but I did it and so can you all. I’m now 2 weeks post chemotherapy and each day I feel better. It’s going to take a while to find my new normal. 
Hope it helps
Updated: Just to add the oncologist had wanted me on Doxetaxel and Carboplatin with Phesgo (Perjeta and Herceptin) but due to asthma and supra ventricular tachycardia and family history of cardiomyopathy they decided it would be too much. Also my tumours were 2cm grade 2 and 1cm grade 1 no lymph node so decided that Paclitaxel and Herceptin would be best for me.
I also had a PICC line fitted for blood to be taken and infusion instead of a cannula each time. PICC line is not without its problems, I had a blockage and spent 1 1/2 hours extra in clinic. (luckily the radiography dept had a spare session, so talked me through what would happen). By the time I had finished the PICC was working again. I became allergic to the dressing so that was changed and sometimes it would weep. I had to see district/community nurse for a dressing change and bloods weekly, every third week the bloods were done in clinic. They would check that your blood levels were ok for your next infusion.
It does sound horrendous, I won’t lie, but you did it. You are over the worst. Thanks for your honesty and I will look at that www.lookgoodfeelbetter.com course so thanks for that tip.
I’ve had a lovely day; been out walking in Cowden with my husband and round to friends this evening and it felt normal so it’s weird to think that everything isn’t normal and to know what I have ahead.
My boss, who got over Stage 3 lung cancer, said to put cancer in a box and get on with your life and just visit it as and when you have to. Great advice but not always possible. Depends where your head is at on a daily basis, I’m finding.
Sleep well, buddies.
Sal
xx
Hi her2+ er and pr+ 3 tumours now on year five after initial treatment. Diagnosed june 2018 invasive lobular, ductal and carinoma . I had chemo before doxetaxel, carboplatin, perjeta and herceptin. 2 chemo 2 targeted therapy through iv every 3 weeks, six cycles. Then mastectomy, 15 out of 25 nodes were cancerous, so had radiotherapy for 3 weeks. Continued to have a further 12 injection of herceptin and now on letrozole , already done 5 years another 5 to go. I feel good, yes i ache but i don’t worry every day about cancer. Obviously if i had symptoms, i am on patient led so can go straight back to hospital. The treatment was aggressive as my oncolgist told me. I just turned up every 3 weeks and was positive, obviously you have side effects but you have medication. Listen to your body, and your oncolgist they are the ones looking after you. Your have up and downs, but you will get through it.
My goodness me. The things you guys have been through. It’s humbling, it’s scary, but above all, it’s encouraging as you’ve done it and you’ve come out the other side and for those of us that haven’t yet, it helps to know that it’s not insurmountable.
Thank you.
Xx
Hi everyone,
Reading the thread, the key thing to keep in mind is that everybody’s journey is different.
I’ve done 7 rounds of chemo at 3-weekly intervals. It definitely got cumulatively harder. I had 3 x EC (epirubicin + cyclophosphamide) then 4 x docetaxel + Phesgo. It’s the Phesgo that contains the Herceptin as one of its 2 ingredients. I battled constipation on EC, but then totally relate to the diarrhoea with the ‘taxel’. It’s 6 weeks since my last dose of that & it’s still an issue. But then again diarrhoea is also listed as a side-effect of Phesgo and I’ve kept going with that alone, so maybe that’s now the trigger? TBH it starts to become hard to tell what is what! Then I too had major taste changes with water and everything tasting horrible- it was one thing that kept me working because it took my mind off how hungry I was. I ate a lot of ginger biscuits and sucked some very sour sweets. A friend gave me a bag of gin-gins and they were good too.
But on the upside, I too have done the Look Good Feel Good course and would recommend it. Also, I’ve not had any allergic reactions or infections other than one dose of thrush(both ends!) early on which resolved with a course of fluconazole.
As I write I am still wondering if surgery just 4 weeks after my last dose of chemo was a good idea - it’s made me more fatigued than at any other time so far, but then there was Christmas in the midst of it all and I am glad to have it behind me.
So as I started out, we all have to own our own experiences and journeys, but sharing is caring and we’re all with you all the way Sal. You’ve got this.
X
Hi suedot
I had a bad night’s sleep last night and all my optimism and good spirits of yesterday are gone. Today all I feel is anxiety and fear. This is such a rollercoaster.
Thanks for the reminder that everyone’s journey is different. At the moment I can’t fathom how I am going to get to my appointment on Thursday then wait for my next surgery date (my 4th one) then wait yet again for results. I feel like begging for a mastectomy as I cannot handle another set of results telling me they don’t have clear margins. I just want to get on with the treatment as it sounds so frightening and it’s hanging over my head and all the time I am worried that it is spreading through my lymph nodes into other parts of my body.
Sorry guys…bad day today.
Sal
x
Hi Salbert
Firstly sending lots of hugs. It is a rollercoaster of up and down days and I’m sorry today’s not so good for you, especially if my post has made it worse.
I say of the NHS, their clinical care is very good, but the admin around it does leave so much to be desired for we patients. I feel your pain and frustration. I recall that fear of those nasty little C cells rampaging through our bodies while we wait. I know it’s hard, but sensible me (when I find her) says mammogram screening wouldn’t be just every 3 years if a few days or even weeks made a difference to treatment outcomes. I know this is easy to say….
Is there something lovely and or indulgent you can do to take your mind off the waiting?I know everyone’s said it, but the waiting really is the hardest part, if you can just hang on in there the ‘not knowing’ bit really does get better and in the meantime as best you can do stuff to make the most of every day.
I can’t begin to imagine what 4 surgeries before clear margins must be like. You have my huge love & sympathy there. You’ve prepared me for the fact when I go for my post first-surgery results on Thurs (4th) it might not be all straightforward. Thank you for that.
So take care & keep sharing as you choose to.
X
Hi Sue
Thanks very much for the reminder of the sensible voice and comforting words. Mine has done a runner today!
You are a great help, really.
Sal
X
Hi @salbert, I’ve been directed over here by @naughty_boob from the September chemo starters thread. Am triple positive, was diagnosed in August at the ripe old age of 37! I have a couple of 2cm lumps in my right boob and it made it to my lymph nodes, hence the chemo.
The following weeks passed in a completely anxious blur until I started chemo on Sept 21. I get it. I’m a planner and an organiser and I had nothing to control. And was totally overwhelmed by information. Once I started, it was so much more manageable, a known quantity, there was a routine and something to get on with, and count down. I had 4 lots of EC fortnightly, and am now on 12 weekly paclitaxel, 5 more to go and finishing Feb 1. Then lumpectomy, radio as needed and Phesgo until November ish. And then…whatever else I have to throw at it.
I do want to echo @suedot and say everyone’s journey is different. I have found it super helpful to hear from everyone else- but I know that it has also caused some additional anxiety as I’ve then sat there assuming I’ll experience the same, and it kicked off a bit of paranoia and catastrophising with every little feeling, temperature check, etc.
I’m not finished yet, I know, but I feel really luck to have had quite a smooth chemo journey, I cold-capped on EC but lost most of my hair anyway (it’s a harsh mix, was probably inevitable) and I abandoned it after the first pacli as it became too painful with hardly any hair to buffer. I haven’t shaved as liked having a bit of contrast and don’t have any patches, it’s just super thin. By some miracle, I still have my eyebrows, and no nail issues (yet). I had constipation on EC and then it’s swung the other way on pacli, but that’s been the worst of it. I have loperamide too but try to avoid taking it if I’m at home as it makes me really gassy/burpy and that’s equally unpleasant.
Definitely do the LGFB courses, you can do them online if there aren’t any locally. I did the nails one before Xmas and they sent me a goody bag with Essie treats, think the make up one does similar, I’m going to do it in Jan. The ladies on my call were all at different stages, and it was really lovely, made me quite emotional to hear from people further along and out the other end! Felt so supportive and the lady leading it was a BC survivor herself.
(Sorry for the essay!) Sending hugs xx
Hi @salbert I too have been referred by @naughty_boob from the September starters. Sorry to hear how you have been feeling. I think we all start this journey alone and then slowly find our tribe through these forums. I got diagnosed with HER2+ in August and have started with Chemo with surgery to follow. As others have said we are all a bit different and have different treatments. Having said that I am finding the advice, shared symptoms, sympathy and humour from my fellow September starters has really helped get me through this. I am five cycles in with one to go and at various points have thought I just can’t do this. But we have no choice and time inevitably passes and so we do manage to do this. @salbert it will be hard but you will face every challenge, every appointment, every bit of news and you will get through it. Hopefully having some of us along with you will make it a bit easier. Undoubtedly in a few months you will be the one helping someone else on their journey. I hope you get some positive news on the 4th and a clearer idea of next steps. Until then take care, smile when you can and cry when you need to. You’ve got this. You just don’t know it yet.
I found out I had cancer on 13th December.
Time seems to be going really slowly while I wait for my last biopsy result.
I too have felt invinsible,but this is slowly fading,due to fear of the unknown.
You will get through this and end up a stronger person for it. So will I.
We can do this.
Hi @plum1 @frazzledmcsazza and @wildflower
Thanks so much for your input and @naughty_boob thanks so much for gathering more troops. That alone makes me feel stronger as there are so many of us going through this so naturally you don’t feel so alone.
@plum1 - I, too, am an organiser, a planner and a massive catastrophiser!! So mentally this is a struggle. I have decided to make a Positivity Document of all the really positive and hopeful statements I have heard or read to remind myself when the brain starts to spiral. Like @suedot I appreciate you saying that everyone’s journey is different as sometimes I have been gripped by fear just reading what someone else has been through so it is important to bear that in mind. It’s great to hear that you have had quite a smooth chemo journey.
@frazzledmcsazza - Finding my tribe has become something of a lifeline and I’m not letting you all go! It undoubtedly helps and your positive words of encouragement about getting through will be going on my Positivity Document. I know how much it means to me that you have taken the time to answer this thread so I vow I will do the same for others who have this bolt out of the blue coming.
@wildflower - You’re right. Time is going slowly and fear of the unknown can send you to some very scary places. I spoke to my aunt last night who is in her 80s and living with incurable cancer. She has just booked yet another holiday and said to me ‘You’re a Jetten (family name). You get on with it. Cancer isn’t the death sentence it used to be. My oncologist said to me “Cancer doesn’t like being ignored” so you get on with your life and only visit it when you have to.’ She was so no nonsense that something clicked and I went to the New Year’s Day party at my parents house and ate and drank and genuinely enjoyed myself. That quote is also going on the Positivity Document.
WE CAN DO THIS. WE WILL DO THIS. WE WILL GET THROUGH THIS.
Big love to you bloody brilliant women.
Salbert
xxx
By the way, if you haven’t already twigged, I can be full of joy and positivity one moment and a hopeless heap on the floor the next. I apologise for the latter as I will undoubtedly be on here in that state over the next few months. 
Hi @wildflower
The waiting for results is probably the hardest thing you will go through. The unknown. Once you have your results and a treatment plan you will know what is happening and when. I not saying the chemo with Herceptin/Phesgo is easy but you will get through it. I did and so did many others please look at the chemo starters each month, you will read the support given to each other. As well as side effects and how they are overcome.
Take care
Don’t ever apologise for being ‘hopeless on the floor’, we have all been there at some point and we are here to help and support you when you need it.
I, too, like to plan and know what is happening, I’m a glass half empty girl and think of the consequences of everything or the ‘what ifs’ which isn’t the most positive attitude. But I can’t change who I am. I did some CBT once and all it came down to was I need to change my thoughts, which of course is who I am, therefore change me! It wasn’t just about strategies for dealing with things but changing how I thought about it, seeing the positive in everything. Which is quite hard when you’re a glass half empty person. It appeared to me that you have to be a glass half full to think the ‘correct’ way. I’m trying to see the positives in things but it is hard with cancer treatment.
I been to the cancer centre 30 miles away in Cardiff, I turned up on time to find out the radiation that needed to be injected for the MUGA scan hadn’t arrived from Birmingham. No phone call from them to say they would be late, assumed it was the weather. They arrived 1 hour late with no apology, just said they had to go to a different pharmacy. I was there for 3 hours for a 30 minute scan with 2 injections, 39 minutes apart, taking less than 5 minutes each, should have been a maximum of 1- 1 1/2 hours. I was gone for 5 hours! The positive was that I popped to a local Waitrose and treated us to something different for dinner and I drove myself. Furthest I’d driven in 4 months on my own!
Thinking of you all