Mai7 another community champion on here does a blog, life after Lola that you all Should have a look at when you get chance 👍 she was one of the amazing people that helped me and the oct17 chemo gang through 👍hope this helps 💕💕✨✨Shi xx
Welcome. You start your chemo a week after me then.
The other two ladies have already started and have given great advice and information regarding their experiences, which I have found extremely useful.
Shi also has a wealth of information to help support us on our journey.
Hope you are feeling okay. I don’t know about you but I am trying to relax and stay calm before I start on Thursday?
Just had my letter from the hospital today. I start my chemo on 23rd June.
I’m having 6 rounds of EC.
thank you for your replies. I have had my bone and ct scan results and they are both clear, yay! The oncologist said there was a mark in my right breast on the bone scan so he had to wait for the ct scan to take to the MDT meeting today to get checked out. All professionals have agreed it is scar tissue from my surgery and nothing to worry about. They will monitor me after chemo.
Well done on you first chemo Cecilia, fab that you had no side effects.
Cubot that is a brilliant idea of how to get my boys involved I will definitely use that.
Lots of love
Hey Cecilia that's fantastic news you're feeling great and got no side effects! 🎉 My nausea and fatigue have now gone completely (week after) and quite enjoying being able to be a lady of leisure (every cloud eh?).
Tara - your chemo hamper sounds awesome! It's so lovely when people demonstrate how much they care about you 😊 I've started keeping a photo diary on my phone of my 'journey' which is a mix of photos of all the medical stuff (scans, post-surgery, having chemo etc) as well as all the lovely things my family and friends have sent me. If I'm having a crap day I find it helpful to look at and see how far I've come already and all the support I have around me. Maybe you could do one and get your boys to be the photographers and curators!
I did ask my specialist nurse about clinical trials and I was told that most have been temporarily suspended due to COVID.
Hi Tara your chemo comrades on this thread and others will 👭get you all through together 👭 take it a step at a time 👍💕💕✨✨Shi xx
so I went for my treatment on Tuesday herciptin it was all going until the very last hour
when the cold and the shakes set in and my temperature went up
the team of nurse where quick to give me the medication to bring the temperature down
and they only allowed me to go home when they were hundred percent sure that I was fine
whet back the next day for my first dose of chemo and zometa
i was given three other medicines prition anti sickness before my chemo infusion
i felt great with no side effects
im back next week for my second dose
hope you are doing ok
Thanks For the advice Shi. I know I am in good hands and will be sure to discuss any trials I feel may be relevant.
sorry I am not really clued up on Breast Cancer. You never really think it is going to happen to you and then it hits you and your life completely changes.
My Nan had breast cancer at the age of 42 and died 14 years later when it recurred and went to her Brain. That was 26 years ago and things are so much more advanced now. When I was first diagnosed I just had visions of my Nan not being here and did not want to have the same fate. I have been positive and know I have to beat this. I have so much life still to live. I find taking my husband to appointments has helped as he really listens and can explain what has been said more clearly when we get home. I panic a lot and don’t listen properly. Ironic really because I am always asking the children in my class if they are listening to me and when I am nervous I go to pot and behave just like them.
I am really grateful that I can have chemo and although It is not going to be nice it will hopefully assist in curing me. Be sure to know that anything that does not feel right I will call the unit and get it checked out. I have two boys and need to be as well as I can for them. My youngest has Aspergers and struggles with change. The boys are having to shield with me and cannot go back to school so will be living part of my journey too.
Thank you Shi for your advice and knowledge i will be calling on you for support if that is okay as I go through the chemo process?
Tara, it’s worth you researching trials and asking about them always worth asking about, they won’t mind ❤️ Great news clear margins and no node involvement 👍 and always good to hear your team are being thorough and checking you out so you have peace of mind 👍 trust your team, they have seen it all before and will get you through safely. Treat chemo with respect don’t be blade, anything that doesn’t feel right ring your unit even if you don’t have a temp 👍 step by step 👭 everyone gets each other through safely ❤️💕💕✨✨Shi xx
no one has mentioned trials to me at the moment. Just had my surgery on the 9th April, 19mm lump removed with clear margins and nodes.
i am due to start chemo on the 11th June which will be FEC-T every 3 weeks for 6 cycles.
The surviving Triple Negative Breast Cancer by Patricia Prijatel is what I have down loaded.
My surgeon did not think I needed the bone and ct scans but as I have been having aches the oncologist has requested them to put my mind at rest he says. I am still scared though.
I have been keeping away from google only using this site and Macmillan. I am a very anxious person and want to get through this journey as stress free as possible.
Hi Tina ❤️ A book that helped me was surviving triple negative breast cancer by Patricia prijatel. Also robin Roberts a tv anchor woman and Joan lunden a tv anchor woman who are tnbc survivors were great inspirations too. Please keep away from dr google if you can there are new trials and treatments happening all the time, look for those and speak to your onc if you can get on any. Also md Anderson in USA are worth keeping eye on too for their updates in research 👍 do what’s right for your journey 👍 💕💕✨✨Shi xx
Hope you are both well. I am getting really anxious now as I hear towards my start date.
Had a CT scan yesterday due to the little aches I have been having in my bottom and upper thighs. Well I say aches it’s more of a bruised/ burning sensation. I called the hospital to see if they had my bone scan results from last week, which they do and had a melt down as they said they won’t give me the results until they have been spoken about them in Fridays MTD. I had a panic attach as can not understand why they can’t tell me if there is a problem or not. I am so scared. After talking to the oncology nurse, the breast nurse and oncology secretary I have now been assured that results have to be discussed in an MDT meeting regardless of the outcome. I am still worried though.
Hope you are both coping well and thank you to Shi for the brilliant advice.
My brother and his wife dropped a chemo hamper off on my door step tonight with chocolates, something to read, lotions, fluffy socks, and a water bottle it is really nice. My husband downloaded surviving triple negative breast cancer on my kindle and my boys 7 and 9 are ready to be my hair dresser when it starts to fall out.
Funny what life throws at us and how it changes so quickly. We are strong 💪 and we have got this!
Keep close eye on mouths any sign of oral thrush you will need antibiotics ASAP, ring your teams, fluconzole tablets worked well, lots of people get oral thrush on chemo so don’t think anything of it, just get it sorted with antibiotics 👍💕💕✨✨Shi xx
Thinking of you today + tomorrow Cecilia 😘
Shi - I 100% endorse the drinking loads of water - I got a really dry mouth too which at least reminds you to keep drinking!
Look Good Feel Better are doing online workshops during lockdown - BYO makeup but they said they'll work with whatever you have. Cancer Hair Care sent me a free support pack (including fancy self-gluing eyelashes!) and I really recommend contacting them, they were so lovely and helpful.
Tara - a little bit of retail therapy sounds like an excellent idea 🤗
It's all very weird at the moment with not being able to meet anyone - very grateful this forum and everyone on it are here. xxx
If you type eyelineHerBlog and search then watch her tutorials, she is very good and with bit of practice you will have them down to a t soon, also you can get eyebrow stencils and good tip if you use them just a brown or taupe eyeshadow with a stiff little angle brush works well 👍 the fluid intake helps keep things flushing through 👍 always ring your units if you don’t feel right even with no temp, always best to check with them so they get you through chemo safely ❤️ 💕💕✨✨Shi xx
Good luck tomorrow and Wednesday. Hope it goes as well as it can for you.
I am looking at my treatment in stages like you I think it makes it easier to deal with.
Thanks for the advice about the water Shi, I will remember that. I had a look at the look good feel better website so will be sure to learn how to do my eyebrows when they disappear. I would normally ask my 14 year old step daughter to draw them in but she has not been around since the weekend before lockdown. She has younger siblings in her household and in ours so her mum was worried about me getting the virus should one of the children get it. It’s the kindest she has ever been to me. My hubby thinks loosing my eyebrows will upset me more than loosing my hair. I am prepared and have got my wig ready. Think I might order a nice baseball cap too for if I don’t feel like wearing the wig.
it’s been lovely hearing from you ladies and your advice/experiences. Thanks for the support.
thank you for your advice
im just ticking off all of the treatments off one at a time
and taking each one as a unit
first the surgery
then it was the radiation
tomorrow I'm getting Hecptin
and then the chemo the next day
Take care and I'll let you know how get on
❤️Don’t forget to drink 2-3 l of fluids a day too helps flush things through and if your antisickness meds don’t work ring your unit they will tweak till they get you on right combination 👍if they need to ❤️ if any of you have it via cannula in hand then they can get you to put your arm in bucket of warm water prior to chemo this helps the veins and you can ask for a heat pad for your arm too to put over arm while having chemo ❤️ when lockdown lifts speak to your Macmillan teams about booking onto look good feel better session ❤️ there are some good tutorials on u tube how to do makeup that a lady who had alopecia has done, How to create look of brows and lashes 👍 💕💕✨✨Shi xx
well done on your first chemo!
Thank you for the explanation of the process and advice. I have to go to the unit 2 days before chemo starts so will take a note book with me to write down about meds. I too need to inject so will need to know how to do this.
I am sorry that you were sick. I really don’t want to be sick but we just have to see how our bodies take it. I guess now you have your meds sorted it will be better next time around.
You seem really positive which is reassuring. I am so anxious at the moment it makes me feel sick. I am also waiting for bone scan results which does not help. Although I got clear nodes and margins from surgery I have been having aches in my bum cheeks and thighs. I am worried sick the cancer might have spread. I hate feeling like this. Can’t wait to start chemo and getting on with my life.
It’s lovely to speak to someone that is going through the same as me. I appreciate uout advice.
Hi Cecilia and Tara
Thanks for your support! Thursday went fine - the nurses were all lovely and even though I was sitting in a dental chair for five hours (my hospital has moved all chemo to the COVID-free environment of the dental hospital!) it wasn't uncomfortable.
Cecilia, here's my practical advice which I hope is helpful 🙂
What to wear: if you have a PICC line or port a top which gives the nurses easy access (easy in hot weather, I bought a gilet with me just in case I got cold but didn't need it).
What to take: snacks (I took crackers, mini cheddars, carrot sticks, herbal teabags - I only ate the crackers and crisps!); something to read/watch (though I mostly chatted to the nurse); a pillow/cushion if like me you're not going to be in a normal chemo chair; phone and charger. I also brought paracetamol and a hat (for the cold cap), my glasses in case I wanted to take my contacts out, and my line care passport. You may want to bring a spare bag too - I was given all my drugs to take home plus a sharps bin and it was a challenge getting them in my bag after!
What I'd have liked to know before:
1) For me, the nurse hand injected each syringe of chemo into my PICC line. Not sure if this is the same for everyone but it was actually very reassuring having her there while it was all going on.
2) That I have to self-inject into my tummy for seven days after to boost my neutrophils. I couldn't remember the demo the nurse gave me and rang the acute helpline who were very helpful (there's also a really good Macmillan video https://youtu.be/xQ95DzVzf3g). If you have to do this it is actually fine and doesn't hurt at all - I promise!
3) That it's really hard to pay attention to all the info they give you during chemo about the drugs you will take after each cycle. I think this usually happens in a session before you start, but my hospital isn't doing that because of COVID. I got confused about when to take my meds on the day of chemo and ended up being sick a couple of times (TMI, but on the plus side once I got the meds right it has got quickly better).
4) Even if you feel fine straight after do not attempt to eat normal size portions! I think that may also have contributed to me being sick (oops). Eat little and often and whatever takes your fancy (marmite toast has been a winner).
Sorry for such a long post but these are the things I would have liked to know beforehand so I really hope they're helpful. Take it easy and listen to what your body tells you. I will be thinking of you tomorrow and Tara on the 11th. xxx
I got my date for chemo today, it will start on the 11th June. I have to have 6 cycles every 3 weeks.
cubot I hope all went well for you yesterday.
I am new to this also Cecillia, (not sure if I have your name correct? ) So don’t know what will happen either, I guess we will soon know hey?
I am 36 years old and diagnosed in March with triple negative breast cancer. I had a lumpectomy in April and snb. I saw the oncologist for the first time last week and he has said that I am to start chemo mid June. I don’t yet have a date.
I too am nervous about chemo but want to get on with the treatment and get it over with and continue to live my life. I am sure everyone feels the same.
I have been reading posts on the forum and not commenting until now. I find other posts reassuring.
I'm 37, triple positive, had a mastectomy in mid-April and start chemo on 28 May. Three rounds of FEC, followed by three of docetaxel, with dual anti-HER2 targeted biological therapies starting with the docetaxel. I'm also going to be giving Zoladex a go. I know May isn't actually June but is *almost* it so hopefully it's OK if I pre-sneak into this thread...
While my recovery from surgery has been pretty smooth, I am a little nervous about chemo. I'm lucky in that I've had the time to do a fair bit of research about what to expect. Which has sometimes been super helpful and sometimes has completely freaked me out! I thought I'd share two of the things I found helpful here in case others do too:
* I cannot emphasise enough how fantastic Breast Cancer Now's Someone Like Me service has been. I've spoken to two wonderful volunteers (initially about Zoladex and about reconstruction, but also about so many other things including chemo) so I would really recommend it, particularly at the moment when it can feel quite isolated. https://breastcancernow.org/information-support/support-you/someone-me-telephone-support
* https://www.cancerhaircare.co.uk/hair-loss-help-at-home-coronavirus-support/ I'm giving the cold cap a go and had loads of questions. I emailed Cancer Hair Care and a lovely lady rang me up and did some super-helpful myth-busting which I found incredibly reassuring. They're also sending me a tailored goody bag 🙂
Good luck to everyone who has a date and everyone waiting for a date to start chemo. Looking forward to meeting you on here!
This thread is for anyone due to start chemotherapy in June 2020. I’m sure others will be here soon but please introduce yourself and you can all help one another through this phase of your treatment. If you have any questions please post away on here and others in the community will watch over you whilst you are getting started. Once you are into it you'll be pretty good at helping each other. You can also ask the nurses on this forum if you have any concerns. In the meantime, the top tip is always to stay well hydrated throughout chemo, aiming for 2 litres of water per day.
Here is the BCN guide on chemo:
Here’s an excellent article for anyone concerned about hairloss. That’s pretty much everyone starting chemo: https://pinklotus.com/powerup/breastcancer101/chemo-hair-loss-and-menopause-hair-too/
I finished my chemo over a year ago and doing very well again now. Here is my story which has some chemo tips on how I coped which were collectively shared from others who had gone through the same from this forum:
If you decide to set up a private group its good to stay on here also during treatment as I know from experience there are some people who watch but don't immediately pluck up the courage to join in. Your conversations can be a real comfort to others.
Best wishes xx