About to join the chemo club - Breast Cancer Haven

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About to join the chemo club


Hello everyone, I am just back from my appointment with the oncologist and I now have a plan which is to begin chemotherapy next week (for twenty weeks - counting already . . . ) and then have a mastectomy followed by radiotherapy with good old Tamoxifen . It is what I anticipated, although the order was up for grabs for a while, and whilst I know it will be a long haul, I feel better for knowing that the bone and CT scans were clear and that I have some clarity.

I know everyone is different, but I would really love to hear your top tips for managing chemotherapy. I have been advised to get a thermometer and hand sanitiser, but other than that, I don't imagine there is much else I need in the house? I know I will be slap bang in the middle of chemotherapy when it is Christmas. Apart from delegating to my (adult) children and husband, is there anything I can do now that might make it a bit easier?

Thank you to everyone who has supported me this far. I am sending you my best and warmest healing vibes. xx

28 Replies

Oh, Anna poor you. Sadly I can't offer any advice as no experience of it (yet). Can send lots of virtual hugs and positive thoughts though. I am sure lots and lots of the lovely ladies on here will give you all the information you need. Much love. Penny :) xx

in reply to phwcl4

Thanks so much for the hugs and positive thoughts which are just as welcome and valuable as direct experience. I am really touched you replied. How are you doing today, Penny? xx

in reply to AnnaKarenina

Not too bad actually. Had my pre-op assessment this morning which was really quick. Out in half an hour! Managed a last long walk with my other half in my fav place which was something I hadn't thought we would get time to do. Just have the smurf injection to look forward to tomorrow then all ready for Weds (not). Little things make all the difference i think. Thanks for asking. :) xx

Hello Anna ..on am having Fec chemo ...my number 3 of 6 is november10th ...I'm finding the first couple of days you feel a bit squiffy .. and tired ...bit like morning sickness ...but I'm doing OK.. after a couple of days I seem to be feeling OK I'm carrying on with household stuff .. I order shopping on line planning meals ahead ...slow cooker has been useful .. I've just been away for a weekend with my 12 year old daughter to an adventure park .. and been ok ...I walk a lot and try to get out most days...even when squiffy .. I'm using the cold cap ...and still have some hair left although quit thin ...but coping ok .. between a bandanna and a wig ...wig was OK which I'm quite surprised as I was horrified to begin with ...number 3 around the corner so I'm nearly half way there ...my advise is go with flow, plan ahead , and have something to focus on between ...I've had the hall painted and a new kitchen to plan ..my thoughts after next one is daughters sleep over for her birthday then Xmas.....good luck stay in touch xccc

Definitely get the thermometer and hand sanitizer, but also get some masks to ward off germs when you have visitors or go shopping. While going through chemo your white cells drop, this leaves you with a very compromised immune system and neutropenia is not a nice thing to get. I was hospitalised four times with it, the forth time for a month as I also developed sepsis and pneumonia. Oh the joys 🙄🙄🙄. Wishing you all the absolute best for you and I hope your treatment goes very smoothly. Listen to your body, don’t push yourself, sleep as much as you can as your body heals whilst you sleep. Love Lainey xxxx

We dont have always end up in hospital like Lainey did, she was really unlucky, but you do need to be cautious...a flu injection before you start might help as its winter chemo after all. I chose operation first so refused this option for peace of mind, there was no difference either way but it was great to know it was gone instead of stewing for months. They push your option because they can monitor the shrinkage and it could mean less intensive surgery. Hope you sail through chemo without too many mishaps. The what could happen part can scare you silly, then it doesnt happen...you just feel exhasted and tired.

I was on chemo over Christmas too, and dreaded it, but managed it fine. letting others do the stuff I usually do (pretty much everything) was hard, as I enjoy all the rushing around, shopping and cooking etc, but you must look after yourself. Try and avoid contact with people who are ill, even if they just have a cold. Try and get out every day if you can. I took a walk with the dogs every day, although some days it was a shorter walk. I found the fresh air helped and mentally it’s good to do a little exercise. It was very festive in the chemo unit (I went weekly) and we had a giggle. It became quite a social experience. I hope everything goes smoothly for you, just go with the flow and be kind to yourself. Accept help and never consult Dr Google! God bless.x

You are all brilliant, thank you. Hearing about the range of experiences and potential for managing, but also the realistic challenges is helpful. I guess I just need to see how I go.

Like you Berylynn, I was a bit worried about chemo before surgery, but the team at The Marsden have reassured me that a) it is better in my case because of the skin changes which they hope will improve with chemo and give an easier surgical result and b) more importantly, they will be monitoring the lump/appearance of the breast throughout and we can go to surgery sooner, at any time, if need be. They did seem to be pretty clear this was the better way for me and I remind myself that they have seen thousands of women and men through this process. I have chosen to trust and conquer my anxiety (kinda) for now.

I have made a list of TV series and films that I want to watch, warned my family that they may need to put up with me bossing them around and asking for more help than usual and taken several deep breaths. Today I go to see the 'wig lady' as she shall be known because I am not going to try the cold cap and I think this is the way forward for me when I am in public, although I will explore hats, scarves etc too.

Bring on the drugs!

I was given a thermometer by the hospital and checked my temperature every day and recorded it in my diary. If your temperature is high (I think 39 degrees C was mentioned) I was told to contact the hospital but luckily never had to. I found that if I went straight home after chemo and took an anti sickness tablet straight away (they gave me domperidone to take up to 3 times daily) I wasn't too bad. I walked the dog most days, making sure I washed my hands properly after poop scooping, and went shopping with the husband most days to get out of the house. I found the 2nd week I felt most tired but tge 3rd week I felt great. I also had to have a 5 day course of injections after each chemo to boost the white blood count. I avoided enclosed stuffy places during the 2nd week when your immunity is at it's lowest, but I did go to a football match. My husband was having kittens but I thought if we went straight to our seats rather than hang around on the concourse I would be ok (I was). Hope everything goes well for you xx

Hello Anna. Love the name! Great Book.

Anyway, I did things in the same order as you. I was diagnosed with a grade 3 stage 3 invasive ductal carcinoma in December 2013. 11 days later I started chemo.

There are certain side effects that most people get, that you should stock up for. Corsodyl alcohol free mouthwash should be gargled every day for 2 weeks after each fec session to try and stop mouth ulcers and oral thrush. Trust me, you don't want to get them! I got both after my first chemo session. It wasn't good.

Stay away from anyone who is ill. Your immune system will be non-existent for quite a while. Do not go to any large gatherings over the festive season. Far too high risk of picking up a bug.

Your taste buds will be upset. Everything tastes metallic, and some of your favourite foods may taste awful. If you suffer with nausea, ginger can help settle your tum. I didn't get nauseous at all but had crystalised ginger and ginger cordial in just in case.

A lot of us suffer with constipation or diarrhoea or both. You should stock up ready for both as it's not practical to seek medication when you are already suffering. You need instant relief to rebalance the condition.

These are the main things to prepare for, besides the hair loss. Hopefully they will arrange for you to see a wig specialist as soon as possible. Your hair will be gone before your second chemo session, so you need to be ready. I bought some soft cotton scalp caps to keep my bare head warm at night. Google "chemo caps" - you don't wear a wig all the time, and your head will be cold indoors and in bed if you don't wear anything on it.

So those are the main things for now. We'll worry about Docetaxol closer to the time.

Follow our advice and you'll be fine. Your life will stand still for a few months, but ultimately it is worth it, and next year you can celebrate Christmas and New Year in style!

Thank you so much Sue for taking the time to reply and for your practical wisdom and warmth. Great tips and I am going to follow them up today. I am really appreciative. I hope you are doing well now? xx

Never better. I'm 51 now and as fit as a fiddle. I was peri-menopausal when I was diagnosed, and the chemo took me straight through the menopause. I was on Tamoxifen for a year, but as I hadn't bled at all since the first chemo session, they did a blood test and from that they switched me to anastrozole.

There are other long term side effects of it all, but it's all worth it. I am mum to a 21 year old and an 18 year old. I am a great aunt to 2 lovely little girls. I have my life ahead of me and I live it to the full!

What a fabulous and uplifting story. I am delighted you're doing so well. Enjoy every moment. x

It is good when you know the treatment plan. I am facing similar, although in a different order. I've already had surgery and I start chemo in three weeks' time. Will be thinking of you and hoping that your treatment is easier than you may anticipate. One day at a time...

You too. We are on opposite sides of the same path. It is great to have a walking companion as we take one step at a time. xx

Agreed. We can pace one another! x

Hi! I had mastectomy (left breast) May 3,2017. I was dignosef with stage 2 ductal carcinoma. Started my 8-cycle chemo June 26. My 7th cycle is on Nov 4. thus far, all went smoothly. I don't have house help. Only me and my husband are in the house so I do all household chores like cooking, cleaning and washing. We go out for groceries weekly and try to walk around the village even just once a week. Side effects I experienced during the first 4 cycles were hot flushes, nausea, episodes of constipation and discoloration of nails. Started losing my hair on the 2nd week aftet the 1st cycle. But there are take home meds given to address those concerns. So everything was manageable. From the 5th and 6th cycles side effects include numbness of soles, toes and fingers. There were also episodes of crumps in lower abdomen and hands. Still, am thankful I still manage to do my.usual chores. I just rest a lot in between those chores as I tend to tire easiy. so dont' worry much as it will only stress you.

Brilliant advice, Marlyn. I hope the 7th and 8th go well for you. xx

Thank you. Looking forward to finishing both cycles before christmas. God willing, 8th cycle is on nov 25.

Best of luck with the chemo - not much fun but for me it was very do-able. My stock up items would include warm clothes and hats (the loss of hair on your body as well as your head leaves you cold, including in bed), soft toothbrush to be gentle on your mouth, fruit such as pineapple, melon to help with the horrible taste many of us experience, lots of moisturizer (FEC played havoc with my skin). I had a complete pathological response to chemo - ie no sign of any cancer post chemo at surgery, so for me it was worth going through the chemo. Do keep away from people with colds etc - even if it feels a bit rude but you need to protect yourself. Good luck and hugs Caroline xxx

I forgot to mention that among the side effects is on your sense of taste. Food taste metallic or differently but even then I just eat to get nourished. I had my thinning hair shaved so I have to wear a bonnet when going out. To boost my immune system I eat lots of vegies and fruits. I also make fruit juices/smoothies.

I think I will go for the shaved option and have invested in some soft cotton and warmer wool hats/caps in anticipation. I love fruit and veggies, so I will continue to eat my greens and get my 5 a day by hook or by crook (or by blender!). x

Hi Anna. Like all the other ladies I completely agree that you need to take care not to catch any bugs. Pride is completely lost during treatment - I had to wear a mask almost every time I stepped out of the door! I had a very bad time with chemo - obviously all-over hair loss (including lashes and nose, another reason to be careful as there is absolutely nothing stopping bugs getting into your system!), zero energy, neuropathy in hands and feet - which I've still got nearly 2 yrs post-chemo. I found that, as well as going off food in general, I couldn't abide cups of tea, and chocolate was disgusting (lost weight though so not all bad!!). However, despite all precautions I still ended up in hospital after every cycle with neutopenic sepsis. They say anything over 37.5 but if I got 2 consecutive readings within 1 hr of 37 I took myself off to A&E. (When you get there, tell them you're having chemo - they should put you in a separate room and start treatment within an hour which is international protocol). The first time I left it until it was 38 and was later told that, if I hadn't gone in when I did, I would have died that night - sobering thought. I also had very bad skin reactions, ranging from rashes to being able to literally peel it off in big chunks. I had to buy a walking stick after the 3rd cycle as I could not walk without support. When i started on the 2nd part of fec-t I had an anaphylactic shock so they had to find another drug, which was given at a slower rate (all day rather than a couple of hrs) and over a much longer period of time. It also caused 2 tiny lung blood clots, and I now also have osteoporosis, that being discovered when I fell and broke my upper arm very badly because I couldn't feel the kerb coz of my feet! One of my nurses said once that it is very rare for one person to have all the reactions I did (yeah, thanks for that, makes me feel tons better!). Having said all this, please don't worry about your chemo - i am sure you will be fine - my story is apparently the very worst case scenario when it comes to side effects and I wish I'd known exactly what COULD happen as the shock wouldn't have been so great. Please don't be scared - just take one day at a time. Your team know what they are doing - please just trust them. Oh, and eat beetroot - very good for the immune system, although I hate it! Good luck with everything and, like I Say, please don't let my personal journey scare you - I survived it! Xx

Thank you everyone. There is quite the range of experiences here and I guess no one knows where I will be on the spectrum until we actually begin the chemo. I am in a weird kind of nesting/organisation phase at the moment, running around getting 'stuff' (thermometer, ice pops, hats, food) and cleaning the house like a crazed woman. I wasn't this bad even when I had my kids. It is good to be occupied though and tonight is Strictly, so I can live with this strange, unfamiliar version of myself!

I know just what you mean about the nesting/organisation phase. I am trying to give my house a super clean before I start (I am not known for being houseproud...), and have had a gardener help to tidy up my half acre plot for the winter. Freezer is full, although I have no idea what I will want to eat. I am really hoping that I don't go off coffee, as it is what gets me out of bed in the mornings...

I've just read the thread having watched AnnaKerenina on C4 doing the ironing to get the nest clear. It's good to hear I am not alone! Also decided to go for Netflix free trial - do share any good distractions.

Everyone seems so positive- it's an inspiration. Thanks Jx

Hi there Anna I realise I am late picking this thread up and there is already a lot of varied experience here to draw on so that’s good. I myself had 3fec followed by 3 docetaxol or ‘t’ January thro to May 2017. I found the website livebetterwith.com really good, bought my night time beanie and eyebrow product Wunderbrow on there tho was surprised not to lose eyebrows or lashes til docetaxol, treatments 4,5&6. Having no hair and big dark brows made me look like The Hood from Captain Scarlett! 🤣😆 (google it, hilarious).

Things I wasn’t ready for included developing 2 small blood clots after my 2nd fec along with ‘thickened veins’ or thrombo phlebitis to give it a medical name. Phlebitis is not listed as a side effect even tho that’s what it was. The veins in my lower arm looked like webbing or mapping and one in particular turned bruised in colour and they feel tight when you clench the fist and straighten the arm. It’s taken many months to get back to normal. Massage can help, from a qualified person.

This, 2nd treatment was also extremely painful for me which when I researched it online afterwards I found this to be, well, not uncommon. Shame my nurse didn’t appreciate what was happening at the time. If you get ANY pain, or soreness or discomfort tell your nurse. If they don’t actually DO something immediately like offer pain relief tell someone else. Earlier pain relief would have definitely helped me.

It seems my veins had become so traumatised by the epirubicin - which is a vicious liquid - and so I then got a picc line fitted which made chemo’s 3-6 sooo much easier. You will get this if you present with traumatised veins.

The top row of my teeth also became discoloured. This also not listed as side effect 😳 but did clear up 3-4 months after final treatment.

I started dropping things much more, immediately after treatment 1 and advised my ONCO / nurse so the 4th & 6 th treatments were reduced in strength. This didn’t take long to recover from post chemo, luckily for me.

My finger nails looked like I’d smoked all my life! 😆. The took on the colour of tobacco. I have up the dark nail polish - could not be bothered - but was surprised r nails can take over 6 months to grow out the poison. I’m just about to lose a big toe nail and it’s nearly 7 months since my last chemo and lost the 2 2nd toe nails after maybe 4 months. No biggie tho, really didn’t notice they were gone.

I naively believed that because each chemo cycle is 3 weeks and your blood is expected to recover [enough] during that time then the rest of me would too. Nope!

Oh and the ‘medicine’ for a blood clot is a daily injection for 6 months. My last one was August 6th WOHOO 🙌.

I also didn’t realise how long it took for hair to fall out: 5 weeks. Better to clipper or shave it off and be done with it and have a wig ready. As t goes I didn’t lose all my hair, I was left with an oblong of ‘burnt’ stubble on my crown 😱. Still, I couldn’t see it. Oh and it was a bit prickly during The Shedding!

This isn’t meant to distress you Anna or anyone, it’s to share my unexpected experiences in the hope you will not be surprised by what happens to you. Whilst we are given lots of possible scenarios not all of them will apply and the hospital is always there in support.

I was surprised at the daily injections, the excruciating pain, the tooth stain, the bruised and thickened veins, swollen arm and ugly mapping. I found what was missing from the list of possible side effects was the treatment for them! I have been surprised by how long some things hang around for, months when i expected it to be 3 weeks 🤣🤣.

Good luck with everything, now and in the future. This is a really good place to visit for info, support, empathy, ideas. Do keep posting.

Sending you lots of love & hugs 😘😘

Just wondering how you are getting on, assuming you have started chemo now? And what chemo are you having?

I start next Monday.

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