I was diagnosed with IDC x 2, grade 2 and 3, triple positive almost 8 weeks ago. Going back and forth with appointments and still no chemo start date. It should be in about 2 weeks but I am waiting for MRI results and waiting for a date to do a PET scan as well. The wait is terrible amd so is the lack of clarity.
I have been told that regardless of the MRI and PET scan results I would need to do 6 months of chemo, then mastectomy, then chemo again, radiotheraphy, plus 5 years of trestment. I am going to start with 4 x EC every other week then 12 x weekly TTT (taxol and other stuff). It seems more frequent than typical cycles for a siilar BC.
I am 50, working both as en amployee and self-employed and my employer does not offer company sick pay. On Thursday I was told that the type of chemo (ED) would make the use of my hands difficult and ideally I should not be working. Unfortunately I need to work and although I could take some unpaid time off for treatment I need to pay for my mortgage and the rent of my small business.
Has any of you been in a similar situation of having to work during EC? Are hands really affected?
How tough is EC? I have read some awful stories and the very few people aware of my BC really underestimate chemo and how I am going to cope. I have heard about nausea, vomiting, diarrhoea, tiredness, pins and needles etc but not much about numb hands. I have also been told about induced menopause, and that it is going to be a shock to my system! And having to get my waist-length hair cut short. I will get that done once I have a chemo start date.
The other worry is the commute for chemo. A return trip takes roughly 3 hours by public transport, probably more by car but I am in London and that is not an option.
Hi, look into wearing cold mitts and socks as this apparently reduces amount of chemo to fingers and toes and therefore reduces risk of neuropathy. If this develops it can affect fingers and toes longer term. I’ve also read having high levels of vitamin D reduce risk of neuropathy, so you might want to start increasing your vit D levels.
Although I wouldn’t normally recommend Google it may be useful for you to look into articles and research on vitamin D and cold mitts to reduce developing neuropathy when having chemo.
Hi Marion. I had EC for the first part of my chemo regimen. I didn’t have any nausea, vomiting or diarrhoea (I was very worried re nausea and vomiting) at any point because the premeds, anti sickness meds and steroids etc worked very well. I did however suffer from horrible constipation due to those same meds, although once I started taking movicol and prune juice the day before EC I found it much easier to manage. I didn’t experience any neuropathy, thank goodness, but I did feel fatigued to the point of having to go to bed most afternoons. The difficulty lies in the unpredictability of the side effects and the fact we are all individuals means the “one size fits all” approach goes out the window. You migh not experience any nasty side effects but fatigue seems to be pretty common. I truly hope you are one of the lucky ones and fly through treatment
I didnt have any nausea or sickness with ec …i did have very painful constipation, blood clot from picc line, fatigue and severe mouth ulcers…i lost 20lbs not being able to eat from the pain of the mouth ulcers …i developed chemo induced neropathy in both hands and feet but not til around 2 to 3 months into chemo …maybe try the ice gloves? …my unit didnt offer them …but they can be bought online…i also developed an ectopic heartbeat from the ec which was frightening at the time…but everyone is very different and have different side effects…i would see how you go and take all antiemetics offered…the steroids taken alongside chemo kept me wired for the first few days …but i usually took all mine before 12 noon so i wouldnt be up all night …and you need to consider the emotional toll of chemo…some days it hits you like a sledgehammer…so go easy on yourself…can you take any time off? Will you get SSP? Can you apply for contributions based ESA ? …i applied for PIP when having chemo …maybe you could look into that? …wishing you well
Hi,
Sorry to hear youre going through this. Ive got a very similar treatment plan (2 months from the end).
I work as a teacher and have managed to continue to work on treatment. I was told by one nurse i wouldnt be able to work and another i would. I dont think youll know until you try. My stubbornness has definitely got me through!
I had EC every forntight. By far this made the most tired. Infusion took a good 4/5 hours (i unsuccessfully cold capped too). I was lucky that i was allowed to work from home the two days after unfusion (working on laptop). I then slept the whole weekend. I definitely sacrificed weekends to allow me to work but it was what was best for me.
Taxol was more manageable. Still very tired at weekends, especially the closer to round 12 i got.
I do have numb fingertips but i csn still work. I find picking coins from a box/table tricky or opening a box with a stiff lid. Nothing much else.
I wish you the very best in your journey. Be kind to yourself if youre working; early nights & lazy weekends will get you through x
Hi Shade,
I hope you are doing OK. Thank you for your advice and my apologies for the late reply. I have been left waiting since my last post, and was told yesterday I would start chemo on Monday! No information given so I am now on the hunt for information trying to prepare and get ready! i will order some socks on Amazon as I am running out of time.
I wish you a relaxing weekend
Take care
Marion
Hi Luskentyre1,
I hope you are doing OK. thank you
for sharing your experience and my apologies for the late reply.
I have had no updates whatsoever from my oncologist until yesterday, where I was told I had 4 tumours and not 2, and would start chemo on Monday! They have not fitted a PICC line and there is a waiting list so I am starting with canulas which is not great. Anyway, I will see how it goes, chemo on Monday does not seem ideal and I have ahd to give very short notice to my employer to take Monday off as a holiday.
My husband is coming with me bless him, and it is going to be a long day with the cold cap etc.
I wish you well and hope you have a relaxing weekend
Morning Marion,
Ive managed 24 rounds of chemo with cannula so dont panic if youre on a waiting liat for a piic. Cannula isnt very pleasant but you can certainly do it that way.
Not sure where you work but my work put my chemotherapy treatment day as an appointment rather than an absence because i was genuinely attending a hospital appointment. Try to speak to HR or get advice from mcmillan on this as it could save you using holidays.
I wish you all the very best for Monday & the rest of your journey. It seems so overwhelming in the beginning but then you get into the swing of it & its absolutely manageable.
Try to have a restful weekend x
24 sessions you are so brave! Nurses tend to struggle to find my veins and I end up being bruised everywhere. Let’s hope Monday will be ok.
Re holidays well I am HR and our company does not offer company sick pay so I have to do like anyone else and either use my holidays or be unpaid. Between the blood test, cold capping and chemo I will leave home at 8 and be back at 6 so that won’t be considered ok for an appointment unfortunately.
I was planning to quit my job due to poor practices when I was diagnosed with BC and now I am stuck. Maybe jobless soon As I am working on redundacies across Europe and my team is impacted as well. That puts things and life in perspective for sure.
Thank you so much for sharing your experience, it is helpul and reassuring and I hope you are doing ok.
I am defo going to pace myself. I have ordered lots of stuff on Amazon for Monday, silk pillow cases, neuropathy gloves etc!
That is tough, Marion.
Just take everyday as it comes & dont make any hasty decisions just yet. See how thinga go first.
Wishing you a smooth journey x
Thank you so much for asking! I hope you are doing ok.
I left home at 9am and came back at 7pm quite exhausted. The canula did not go well unfortunately, the nurse tortured me and I had to ask for someone else to take over. I was in tears and complained about being rushed at short notice with no PICC line fitted when I told them months ago about my poor veins etc. They managed to book something early morning of my next session on 25 March. Different hospital though so will have to commute back to my usual place.
After that it went ok cold capping was bearable and my nurse was lovely and caring. No allergic reaction or anything.
I was really tired when I reached home and did not manage to sleep at all due to the steroids. My temperature dropped close to 36c and I spent the night with palpitations.
Today my lovely husband bravely did my white cell booster injection bless him. He came with me yesterday and was very patient, and there was hardly any space for him in my cubicle!
I went back to work this morning, feeling very dizzy but did ok and managed to go to yoga tonight. Still feeling very weak and dreading for the sleepless night.
I hope the rest of the week will be ok, especially after I am done with steroids.
One done! 15 to go… really well done to
All the ladies that have been there.
Thank you for your moral support and advice. It has given me strength and hope.
Honestly, well done. Getting the first one under your belt is huge!
Really sorry to hear about yhe cannula, sounds traumatic. So glad you’ll have the piic in befofe your next one.
I forgot about the steroid sleepless nights, they are frustrating. Good on your husband going with you & helping with injection.
Be kind to yourself & dont do too much. Have a good rest at the weekend.
Round one done - fantastic x
Thank you @Luskentyre1
I am feeling really drained today, I have had to have a nap during lunch time. I know I won’t sleep tonight I can’t wait to finish the steroids tomorrow!
Have a nice evening
hugs
Marion
Thank you @Luskentyre1
I hope your have had a restful weekend too. I have not done much, ,amaged to go for a short 30-min walk yesterday it was sunny and it was nice to get some fresh air although I had to take pauses! Not much done today.
I finally managed to sleep last night despite 3 pee breaks!
Still feeling quite dizzy and I must say one of the worse side effects is constipation. I am eating a lot of cokked vegs and also prunes so hopefully that will work at some stage. Will defo ask for something at my second EC session.
Have a relaxing Sunday evening
Big hugs
Marion
Glad you got some sleep ans somw fresh air.
Try a daily spoonfool of califig (can get it in most supermarkets) or senna if really bad.
I’ve been floored with a cold but surviving.
Hope you have a good week
Hi @Luskentyre1
Sorry to hear about your cold I hope you get better soon.
Thank you for the recommended remedy I will get some!
Good night
Take care
Marion
