This topic is for anyone starting chemo in May to share thoughts and feelings in a supportive environment.
You can find more info on chemo on our pages: Chemotherapy for breast cancer | Breast Cancer Now
Shall I kick start this particular party?!
Suppose I should introduce myself!! Like many others Iāve been following the monthly starters chats for a while. What a generous wealth of information and tips have been shared on here - everyoneās kindness has been incredible so I feel like Iāll be using this resource often!!
I was diagnosed with Grade 2 breast cancer which is both HER2+ and ER+ back in December (Fra-la-la-la-la!!) While Iām not thrilled to be part of this particular club, I do remind myself that I have been very (dare I say?!) ālucky?!ā in some ways that it was all detected very early on.
I had a lumpectomy back in January, but had to go back in March as there were some pesky cells left behind in the origin site. Now that itās been confirmed thereās no more nasties left behind or lymph node involvement Iāve now been passed onto oncology and due to start on the 1st of May.
My treatment is 4x 2 Weekly EC and 3x 3 Weekly Docetaxel. Could anyone share particular insights to what side effects hit them the most? Trying to prepare as best as I can!
Despite my surgeries, it somehow feels more real to me with this particular hurdle on the horizon!! But doing my utmost to stay in the best possible mindset!!
Weāve got this everyone!!
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Hi daffodil_dream. Thinking of you for 1st May. I had Lobular Breast Cancer. Not detected on scans until it was huge 13cm. So had Mastectomy right breast. 5 lymph nodes removed. Received treatment plan this Monday 20th April, after extra CT scan results came through.
More lymph nodes are cancerous.
These are to be zapped by Radiotherapy after chemo.
Chemo is EC x 4, over 2 week cycles. Then Paclitaxel x 4, over 2week cycle. Followed by 8 years of hormone blockers. All a muddle to me, as I have no clue about chemo drugs at all.
I have the PICC line put in 7th May, then chemo starts 8th May. Can honestly say I am normally quite calm in a crisis but there is something about chemo that makes me anxious.
Reading other posts from previous months has helped. But its clearly not an easy treatment.
Ive read up on Side Effects via BCN and MacMillan. They fill me with fear 
.
So I decided toā¦be informed, but not panic until it all startsā¦..
. Well thats my plan. 
.
The fatigue seems the worst side effect. But that is normal for me anyway. Ive have chronic cancer fatigue pre and post operation. I sleep loads. So I guess that will continue. Nausea seems another common side effect. But that seems controlled by anti sickness drugs and eating small amounts of lighter food. Not huge meals. Snacks. Bland food.
No live yogurts, no stilton cheese, no pro biotics. No salad bar yummies 
All the food I love, I cant have. But I will survive I am sure.
Im having my hair cut to pixie length on Saturday. I bought a wig on Wednesday. I bought numerous head wear items at my Oncology Clinic. But Saturday I will use the wig coming home.
Im keeping my hair. 
. Just to remind me what it was like. My hair is sooooo slow growing and very fine. So I doubt I will ever get back my ājust past shoulder lengthā hair again. Which is sad. But Hey Ho.
Funny, I was fine losing my breast. Happy to go flat. But my hair??? Mmm Thats been tricky. But Ive taken control. I didnt want clumps in my hand in the shower, so Saturday is D-Day. 
I was lucky to find a wig I liked. But I had to try on numerous ones before I found one that suited my skin tone (pale, fair). And was similar to my real hair (mousy brown with grey).
I thought I may go rainbow colours to rebel at 63, but then found one I simply felt comfortable in. Good thing about wigs I can get a rainbow one at a later date. .
Ive bought in easy food. Cooked batch meals and froze them. (I live on my own). Stockpiled toiletries in advance. So I have less to worry about if I feel yeuk.
The main thing is having the 24hr NHS help number at hand. Just incase Iām worried about a side effect. Oh and getting a suitcase ready just incase I have to go into hospital. Worst case scenario.
I also must remember snacks, drinks, book, glasses, phone charger, for chemo sessions. Some advise blanket and slippers to feel comfy.
Sooooo much to think about. I think that is actually the hardest thing for me living on my own. All the organising and prepping pre op, pre treatment. Its a mega rollercoaster. Its life changing. Its tough.
But we are strong and we can get through this. 
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Hi there @poppy261, so lovely to meet you
My goodness, youāve already overcome so much!! Well done you for getting through your surgery, although Iām so sorry to hear theyāve found more lymph nodes affected
I know what you mean about the various drugs, itās all quite overwhelming isnāt it? I was able to keep in pretty good spirits during my two surgeries, but chemo being on the horizon definitely feels more daunting to me!!
Iāll be thinking of you when youāre getting your PICC line I havenāt been put forward for a PICC, so Iāll see how I get on with a cannula, but it feels quite unusual as going by this forum alot of our fellows seem to get PICC lines like yourself!!
Iāve been following the āCancer Made Me Eatā thread on here which has given me a lot of inspiration for what foods/drinks are helpful too - should definitely check it out if you havenāt already 
Like you I was going to do some batch cooking this weekend to get ahead - Iām lucky that I have my partner at home to help me with cooking.
Oh the hair loss is very scary to me too Iām allergic to make up, so my hair is one of the few ways I can feel a bit more girly I really admire you for taking control and getting your pixie cut!! Iāll be thinking of you Haha, loving the idea of rocking a rainbow wig!! Although Iām so pleased you found one you liked and felt comfortable, thatās the main thing I couldnāt quite go pixie yet - I used to have very long hair down to the middle of my back, so Iāve currently gone to my shoulder so I could adapt a little. Planning to go wig shopping in the next couple of weeks.
Great minds think alike - Iāve also got a little grab bag in case of any emergencies! Now need to get my treatment bag ready to keep me busy when Iām getting my treatments
I know what you mean, so much to remember and adapt to. I always say my brain feels like itās in a washing machine!!
For what itās worth, it sounds like youāve done so well with all your organisation and done your homework!! And now youāve got this group to help support you through it too
We can definitely get through this!!
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Daffodil, (one of the March should have been Feb chemotherapy starters but bloody allergies) If your skin reacts DO take photos and DO talk with the oncologist you are under about it. In fact if you have any issues with specific foods or chemicals make sure itās clear before you even begin chemo. Sometimes chemo can aggravate a pre-existing tendency and amplify it. That is why I started in March rather than Feb as my allergic adverse reactions included the first chemo drug. Itās now listed by the oncologist in my drug allergies.
Like you l cannot use make up. I now get prescription soap substitutes and emollients as part of my post chemo prescription. I swear I get looks as I walk out of the chemo suite with two big plastic bags from the pharmacy. Be wary of using the replacement eyebrows and eyelashes as if your skin gets reactive it can include the adhesives used. If that happens make sure you let bloods etc know as you may also react to the standard micropore tape. They do have access to low allergen dressings but it helps to let staff know in advance. I have cannulas done every three weeks rather than having a PICC as my skin would not cope with the adhesive used in the dressings to keep such in place. I feel like a pincushion but heck itās worth it for less skin reactions. The cannula dressings use a different low allergen dressing. My sulky skin has not reacted to them so hopefully yours will be okay too. Do ask for the nurse to use low allergen dressings when the cannula is removed instead of the normal micropore. Might be worth taking in a couple of cotton pillowcases to chemo to put on the arms of the chair to protect bare skin. I reacted to the cleaning agent on one arm and the absorbent mat they use on top of the pillow on the other. ouch. Taking in pure cotton pillowcases cases as a buffer has saved my skin.
Might be worth having some smooth to the scalp pure cotton headwear to hand if your skin tends to be very sensitive or eczema prone. I cannot wear a wig due to sensitive skin going crazy and the eczema from hell appearing. A synthetic scratchy wig would be one hell too far for me. Hope it works for you.
Suburban Turban make pure cotton head wrap scarves and l bought some seam free bamboo with cotton lining headwear from Chemotherapy headwear. I have also ordered an organic cotton cloche Japanese design sun hat that blocks the sun to protect my head and face. Well let you know if it works.
If you do get post chemo rashes esp with sensitive skin DO feel able to contact the 24/7 hospital helpline for advice, signposting or plain help.
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So lovely to meet you @wibbles !!
Wow, thank you so much for sharing your experiences with us. I never even considered my allergy being heightened during chemo 
(now youāve spoken about it, itās probably quite obvious!) Annoyingly I have no idea what aspect/ingredient within makeup is my trigger in order to warn them, but Iāll mention this to them for sure so they are fully aware.
Really appreciate your product recommendations, Iāll definitely check them all out as they sound like theyāve been very helpful and our skin reactions sound very similar (yippee for skin sensitivities 
)
if you donāt mind me asking, given that you have also gone without a PICC line, is there any additional care required to help your veins cope?
FIrstly I am now on nab pacitaxel, carboplatin and Phesgo injections every three weeks for six rounds. SecondlyI have very good veins in both my hands.
The oncology nurses take it turn and turn about with both hands. I suggest alternating if at all possible. TBH the oncology nurses are very very good at siting cannulas as they have to do a lot of extra training before they are allowed to. AT my hospital the training is for another 12 months on top of the standard nurses degree. Trying to use some form of relaxation/ breathing to help you intense as the cannula is sited so you reduce the risk of muscles trying to āguardā. I do use emoillents, a lot. Stay well hydrated. I treat the 2 litres per day as the bare minimum. Stay well hydrated during chemo, take water in with you and other drinks just in case.
Askfor the hyper allergenic none latex based dressings to be used after. They are not as sticky so expect the nurse to have to press down and compress when they remove the cannula. I did have a nurse sized thumb print bruise that faded after three days.
TBH in my case in was ducataxel that caused me mega issues. Every time they reached a mere 5ml of that I had an adverse reaction no matter what they tried. That left me with deep bruises on the cannula sites as well as my body just went hell NO. the nurses are trained to look out for anyone like me who does have adverse reactions and believe me they do act fast. You do have a ninety % chance of being absolutely fine with a drug. I am just a bit too reactive.
Nab-pacitaxel has a very different carrier to that of ducataxel and pacitaxel but it costs a lot more, may well need authorisation from the hospital medical ethics board and often has to be ordered in specially. TBH in my case it was good to know there was a more allergy friendly alternative, I had an oncologist who argued in my case switching to pacitaxel instead would not work due to my known drug allergies.
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Thanks daffodil_dream, I will check out the Food thread. Sooo much to re-think. 
Its more brain scrambled, than brain fog I think.
I can understand your caution with getting your hair cut slowly.
I rarely wear makeup. Always found it abit of a faff . But i did have bad eczema on my hands the other year for almost a year, and Im very prone to mouth ulcers. But realised ulcers were made worse with sugar sweets. So I cant suck on boiled sweets 
etc. chocolate is fine. Thank goodness. 
. So i will definitely stay clear of sugar during chemo.
Sounds like you may not be having a PICC if your skin is sensitive. 
But am aware, Trusts do things differently. Initially I thought a PICC line was ā¦. A āpickā lineā¦.. Noone explained it to me. I cant get my head around all the terminology. I need a Degree before Chemo. . 
.
Thank goodness for BCN and MacMillan. I would be lost without these fabulous charities. And all you wonderful ladies. 
Xxx
Make sure you treat yourself over the next week. Im having a last farewell to the food I love. .
Xxxxā
Just r
Oops morning chaos.
Just read up on PICC lines. Another 4 months sleeping on my backā.
I crave a good nights sleep. I use to be a tummy sleeper. Days long gone by.
Thank goodness I have my Mums old adjustable bed. Helps soo much. And my V-shaped pillow that jams me in one position
Thatās really good to know @wibbles!! Iāve been told this week that apparently I have very good veins which should help me cope with the infusions. They did tell me Iād have to have them in my right side after being operated on my left, but Iām hoping they may alternate to give that hand a break. Iāll certainly ask after your suggestions.
Iām so sorry for the difficulties youāve faced during your treatments - that must be frustrating and very scary when you react like that. Iām glad theyāve been able to find alternatives to use - thatās very reassuring to know. I hadnāt even thought of the likes of the tape either - after my ops my skin was quite inflamed from the micro tape so Iāll ask them if they have hypo-allergenic options. Trying to improve my fluid intake as well and get in the habit of having my water bottle firmly by my side! Really do appreciate your wealth of information
@poppy261 the brain scramble is far too real!! So much to adapt to and to take in!! I find myself hopeless with all the lingo as well
Glad Iām not the only one who views it as a faff 
I think weāll have to hydrate our skin as much as our bodies as we go! What a shame about mouth ulcers, that must be uncomfortable 
Maybe mention to them if you havenāt already, they may be able to suggest sometime to help along the way? Thank goodness for chocolate I say
Hahaha!! I hadnāt even heard of one until I started on this journey either, so I totally get you!! I think there are quite a few people on the March/April forums which made suggestions about PICC management which could be worth a look (quite near to the top of the chat when theyād be fitted before chemo) Sorry giving you even more to look at 
the resources on offer are amazing arenāt they?! Iāve found them so helpful Oh thank you so much, very good advice! Going to enjoy a couple treats before all this starts!
Hi All.
Hair went today. . Below shoulder length, to less than an inch long now!!! Even shorter at the sides.
Wig looks great. Shoulder length and straight. Easier to wear with some hair underneath. A bit hot in this weather. So I will use it wisely. Will have to be careful if my scalp gets tender. But I have lots of chemo caps to use as well When out and about.
Bought some cheap satin sleep hats from Primark. Saves trying to find a V-Shaped Satin Pillowcase.
Treat myself to a full english, double size before going for the chop. Worked a treat. . Sooo fullā
.
Shower and Sleep now after all my excitement. 
NB ā¦ My friend who loves long hair, actually loves my short pixie hair which looks quite trendy. Never been trendy before . 
Kept a braid of my real hair. Just to remind me what it looked like.
Enjoy this sunshine lovely ladies. Xxx
TBH I would go with what the chemo nurses recommend. I had not realised you had already had an op as mine is for after chemo.
If you do have a good selection of veins on the hand they can use ask how they plan to use the veins so you avoid using the same one twice in row if at all possible.
Given you have reacted to micropore pre chemo for all that is good let the staff on the chemo ward and blood tests know. ČHey really do all they can to make this as bearable as possible and setting off an allergic skin reaction to sticky stuff on dressings is not on their list of things to do. I am pretty sure the dressing used to keep cannulas in place is hyper allergenic unlike the ones that hold PICCs. My nurses make use of the edges of the cannula dressing to hold the connecting tube they use in place. So far my skin has not rebelled at that. it did to micropore, very seriously to the mat used over the pillow for chemo, and my skin does not like the sanitising wipe residue used to clean the chemo chairs. Take something to throw over the chair and a cotton pillowcase for the mat. Hope that helps head off some of the problems I have had as I would not wish them on anyone.
BTW if you do find your skin gets very reactive speak with the oncologist. mine has sorted out daily antihistamines and an additional course of prednisolone on top of the normal post chemo steroids as well as extra emoillents and soap substitute. that has helped. I can recommend Excema Clothing (previously called Cotton Comfort.) they are the only ones I know who make seam free cotton knickers etc that is 100% organic cotton, latex free and has elastine free underwear options.
This is the organic cotton lined chemo sun hat designed in Japan that I mentioned. Mine arrived this morning and yes it covers all your head and is comfy to wear and protects your face. can be purchased on Etsy and eBay. the Japanese brand of chemo headwear is I think Charm. https://www.etsy.com/uk/listing/726515667/sun-hat-eco-friendly-hat-womens-sunhat?gpla=1&gao=1&&utm_source=google&utm_medium=cpc&utm_campaign=shopping_uk_en_gb_b-accessories&utm_custom1=_k_EAIaIQobChMIjKKjpaSJlAMVf5VQBh1qoDqTEAQYBSABEgLCIPD_BwE_k_&utm_content=go_21811974222_169452879536_717564633596_pla-294930372950_c__726515667engb_102858184&utm_custom2=21811974222&gad_source=1&gad_campaignid=21811974222&gbraid=0AAAAADutTMex6Q1C_pwvOmWJyVyubgLjg&gclid=EAIaIQobChMIjKKjpaSJlAMVf5VQBh1qoDqTEAQYBSABEgLCIPD_BwE
Huge well done @poppy261 - such a big step and it sounds like youāre rocking it! So happy you found a wig youāre so comfortable in 
I did wonder how weād feel in our wigs in the warmer weather - itās good that thereās so many options for head coverings!
A big breakfast for motivation sounds great! I had a lovely get together with friends enjoying nicer weather -and we all shared some nachos seen as Iāll have to be careful of cheese intake! Yum!
Oops, sorry @wibbles I somehow missed your response!
Apologies I didnāt really specify - Iāve had my surgeries in advance, a lumpectomy and lymph node check (3 removed). Had to go back for a second time as there were still some pesky cancer cells left behind. Now that Iām finished with surgery my chemo regime has since been set 
Bit nerve wracking!!!
Definitely going to follow the advice from yourself and others to communicate to the nurses if thereās any problems - it seems like they have options and alternatives for any bad reactions. I suppose they canāt help us if we donāt communicate to them if thereās issues!
Will check these out, thank you so much! I love supporting smaller businesses on the likes of Etsy so these are wonderful.
Thanks Daffodil-dream.
Beautiful day for get togethers and last minute treats. Xxx
Hello all,
Joining in here as I recieved my treatment plan today and will start chemo on May 21st 4xAC and 4xPac fortnightly.
Er+ PR+ Her2 - grade 2 lobular (pleomorphic) stage 3. Had my surgery 4 almost 5 weeks ago now, bi lateral mastectomy, 12 cm in left breast and 4mm in right. 10 lymph nodes removed and all positive so theres definetly some left behind, but ive been told chemo and radiation will zap that .
Got my list of side effects and some prescriptions to collect from pharmacy to have ready.
Hoping I can handle it all over a busy summer with the kids off school.
Wishing ye all the best in your treatments girls 
S
Thats a tough call @want2beme . Sending you strength and love. .
Your plan is similar to mine, but I have EC the first 4 Cycles. 12cm is not a size to ignore. Mine was 13cm. Fingers cross these tough interventions get rid of this awful plague on our bodies.
They told me they cant guarantee the cancer hasnāt spread so they hope chemo, radio, enzyme knocks it right out of my body. Fingers crossed for us all. . Some sail through chemo, others are knocked flat. We have to be kind to ourselves. Rest loads.
You are a truly amazing going through this with a family. Huge respect. Its not easy when we are older, but we are able to rest when we like. But juggling children is on another level. Xxxx
Ive been filling my cupboards with supplies to get me through the first 8 weeks. I heard Pac is less savage on our bodies and easier to cope with. . So at least the second phase should be easier.
Strength and love to all you brave women going through this.
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Posting now in case I get hit sideways post chemo.
Hoping all goes well for anyone staring chemo in the next two weeks. Remember the nurses on the chemo ward will do all they can to support and encourage you all and will keep an eye on you all to help you. IF you have any questions even seemingly silly ones- do feel able to ask them and if you have any worries or concerns let them know.
MY experience has been if your really struggling and you can find a way to let them know they will be there for you.
Welcome to our club @want2beme
I echo @poppy261, I have every admiration for those going through this with a young family. Hopefully you will still be able to enjoy some sunshine and adventures with them over the summer.
Youāve already overcome so much with your surgeries, well done you
Iām also getting myself organised as Iām due to begin my own regime on Friday - Iām a little different with my cocktail; 4 x EC (2 weeks apart) and then 3 x Docetaxel (3 weeks apart). All a bit daunting - think itās the fear of the unknown is the biggest anxiety for me. I did attend a wonderful information session at my Maggies Centre which I highly recommend (Chemo Starts) which was so insightful and reassuring.
Now, to get my bag ready!
We are strong - weāve got this and weāve got each other for good measure 
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