Hi ladies, I just went for my follow-up on my mastectomy and the good news is that they did get clear margins. The tumor was 6 cm. Again, just saying...I don’t know how 14 consecutive years of mammograms could have missed that. Anyway, my doctors are saying eight rounds of chemo. Four rounds with epirubucin and cyclophosphamide and four rounds of docetaxel. My tumor is estrogen and progesterone receptor positive. Does anybody have any experience/advice on my type of tumor and the above mentioned chemotherapy? Thanks in advance!
I was hoping someone would say they could do walks, it helps me to think I might be able too as well, I know maybe the hills might be bit adventurous to start with, but it would make such a difference to get up there and see those views.
I'm not sure about using my ruck sack at the moment, I can't lift anything heavy with my right arm ever and I'm going to have the picc line in the left and I read I can't lift anything heavy with that arm, although what some people count as heavy, I don't. As you said, I will have to see how I feel, but the sooner I get walking, the better.
I got bitten by something two days ago, used the antisane cream and took a anti histamine tablet, but it's itching and still looks a bit angry, I'm worried that the chemo will cause it to become infected, I will have to see what they say on Wednesday. Good idea to carry a mini first aid kit, we've got one in the house, in the car and we both have one in our ruck sacks, hadn't thought about losing nose hair, but it must make a difference, just as well it's autumn and winter.
As I'm starting with the EC and the Zometa for the first four sessions, I'm hoping the side affects will not be too bad, it's when they start to add the Paclitaxel as well once every week for 18 to 20 weeks that worries me more.
@pinklily Take it as it goes with the walking -- and treat yourself as you can! My OH and I are keen walkers, and it's been hugely helpful to my spirits to keep it up. I've managed several 10-11 mile walks during chemo (at least one per cycle, often more), including a 3-day trip to the Wye Valley that involved carrying our "kit" on day 1 and 2 during week 3 of my 3rd cycle of FEC. It can be doable, though it all depends on how your body responds to each chemo regime.
I've found it best to plan a walk that allows for an "early out" in case I'm feeling tired or running short on water. This weekend, we did a 7-mile walk on both Saturday and Sunday -- late starts cut short by dusk/twilight. Both were on relatively flat ground, as I'm feeling it more now that I'm in cycle 5. I've found the taxane regime is harder, in terms of walking -- I'm more fatigued, whether from the specific drug (I've been prescribed docetaxel, not paclitaxel) or the cumulative effects, and I really feel the effects on my feet (soles weary, and a bit of peeling, but no worrying pressure blisters as yet). I also carry a little first aid kit with me -- antiseptic cream, plasters, antihistamines -- in case of bites/splinters/scratches, to reduce chance of infection and deal with extra sensitivity to any pollens in the air (losing nose hairs makes a big difference!).
Just wondered if having the picc line inserted is very uncomfortable and did anyone have any problems?
Also, I've got a Limbo arm cover that I used when I had surgery for golfers elbow, would this be suitable to use with the picc line when I shower or should the hospital give me something?
Hi @Sar_ah The advice I was given was not to bath because of the risk of infection due to the bath water not being fresh running water like a shower. If they tell you any different, or give you any tips when you see them, please let me know as I would love to have a bath again!
Which day to you have your 2nd chemo? My 2nd one is due on the 1st November.
Good luck for the port fitting, I had mine done with sedation, which helped with the anxiety of it all, and I didn't feel a thing
Well done for the 5k, that's amazing! I would have been exercising more but once I got this chest infection, I wanted to conserve my energy to help me get better, plus I don't think my lungs would have handled getting out of breath!
@Shi - thanks, sounds great! I'll get tuned into that jukebox now lol, and get on to the thread you mentioned straight after xxxx
I think I am having similar chemo cycles to you, followed by surgery, then radiotherapy, so we may be going through it at the same time as each other. It seems a long time to me too, but I am hoping it will go quickly given how busy I am going to be with all the appointments! I have put a big wall planner on my wall and put the appointments on it. As I get through each cycle/ stage I am going to give myself some kind of treat - I don't know what yet lol, but even if something small just for myself it will give me something to look forward to. I guess other than that and planning nice things to do on the "good week" around day 14 after chemo, it's a case of just trying to stay positive, to stick with it no matter what, and to take it a day at a time. We will all get there in the end, and it's going to be so much easier now we have all found this support group. I have many friends and a great family who are all trying to say the right things, and be supportive, and that's comforting, but it's only the people who are going through it, and have gone through it before us, that really know what it's like, and how we are feeling from day to day. I am thankful for this forum, I really am. Sending you lots of positive thoughts, and hugs xxxxxx
Hi @Ktk @Aneeebel @reddit @ElliesMum @Shi @Pinklilly
Thank you for your words of advice. I took an ibruprofen and a Zapain and the pains had passed by the next day At least I know what to expect when I go into the ring for round 2!!!
So far the advice I have been given is:-
Expect to lose your hair - well maybe up 30%-70% of it (and mostly at the nape of my neck and around my ears for some reason) depending on how much effort I put in with the cold cap I am trying. Wash it once -twice a week in tepid water using mild shampoo and conditioner and no sulphates in the shampoo or conditioner. The brand Simple was suggested. Well I tried using that and my really thick hair (which is dry at the best of times), got drier and didn't feel like my own hair - especially once it was soaked at the roots during the night by the menopausal sweats! So I am now using the new Organix coconut shampoo and conditioner, plus my usual hair stuff on the ends. I don't use any heat on it - well, apart from my fringe and that's just the ends of it once a week (my hair is really curly, and can be frizzy). The rest is in a loose ponytail. So far washing gently with tepid water (brrrr not nice with a cold), I have lost one long curl. My husband said "Don't you worry love, that's nothing in size compared to the usual long hairy slugs I pull out of the plug hole on a weekly basis!!"
The cold cap isn't as bad as I thought. I can only describe my experience as a bit like washing it with a minty shampoo. It feels kind of tingly but not in a horrible way. The only two draw backs are 1. it adds to the length of the chemo appointment. (1.2 hour beforehand, 40 mins afterwards), and 2. the fact that each loo visit, has to be less than 8 minutes as the cap would lose too much heat.
I was told to be careful about cutting myself if I continue shaving my legs etc. because of the risk of infection. So I've bought a wet and dry lady shave, which is doing the trick. I've heard that any chin hairs I would usually wax off or pluck will continue to grow despite the chemo (grrr) I can't wax anymore because of infection risk, but I've not given any more thought to that one!
I was advised that my skin would be very sensitive, so to use Aveena moisturiser for sensitive skin, which I had never tried before. I am using that and my skin is so far really good. I am using it as a moisturiser on my face too, which hasn't caused any breakouts, or anything yet, so I will carry on until it does. My skins sensitive and dry so I usually use dermalogica. I tried that at the beginning of Chemo1 and had a sore, red face for a few days, so I have put that away.
I was told to floss daily, but not to be too hard on my gums, or they may get infected, to continue to use my electric toothbrush, and to rinse with difflam if I got sores in my mouth. Also, to use lots of lip balm because otherwise my lips would dry out. I had a dentist check before i started the chemo.
I also got a flu jab a few days before - poss reason I got a cold that turned into a chest infection, or could be it added to the cold the grand babies passed on to me, but I'll never know.
I have been told I can't bath because have a port fitted under my skin on my chest for the chemo (the grand toddlers would have pulled the other types like a chain if I had any of the others). This was put in under local before hand. It hasn't given me any problems so far, but it can be uncomfortable if I lay on my left side (where it is located just inside my shoulder) and I can't lay on my front. The cancer is on my right breast, so as I don't like to lay on that side, the only alternative is on my back. Also, when I tried to run, it pulled the insision next to the port, and it felt really painful, so I am now being more careful. As for the port under the skin it looks like a small bump. When showering I have still been using femme fresh, and Sanex zero shower gel. No itchiness anywhere, or rashes yet.
Other than that, I am just trying to drink as many fluids as I can (water mainly), I have a milk shake each day, make sure I eat three meals a day (main meals things like stews, liver & bacon casseroles, meat, salmon, steamed veg etc. and lots of fruit. Oh and also prunes - at least 5 every day otherwise I have been getting constipated.
Taste wise I can tolerate most foods, but my one life long love - chocolate - tastes rank! Shame - hopefully I will get a taste for this again afterwards!! Sending big big hugs to all the October ladies, including the new ones xxx
@pinklilly If you're getting your taxane on a weekly cycle, you'll have been prescribed paclitaxel -- which, from the accounts I've heard from other patients, is typically easier on the body than docetaxel, which is given every 3 weeks. So while it involves more trips to the hospital, everybody I know who has been given it has considered it an improvement. (The people I've spoken to were first on docetaxel and, after having a bad reaction to it, were switched to paclitaxel.)
Good for being brave with the shave -- and what a wonderful gesture from that stranger!
Hi Pinklily... I know what you mean about running away...it doesn't matter how old you are! We've probably all felt exactly the same!
I was adamant I wasn't going for chemo as it 'was too scary' but I went, of course, and it all went smoothly... (I've only had one, 2nd one next Friday 💪🏼💗) I've had a couple of hiccups in the last couple of weeks but I'm finally feeling more myself....
You 'can do this' Pinklily... You have to so you will! It's a lot to take in but you can do it!
Take care x
Day 8 of my first chemo cycle and I have really bad bone ache Like a boring pain in my back, thigh bones and hips. The chemo nurse said it is where ive been given a jab since chemo to boost my immune system and it should pass within a few days. Been taking anti inflammatories and paracetamol but its still so sore. Have any of you other ladies had this at this stage, and if so, do you have any tips I can try to ease the pain? It would be easier for me to manage if I could get sleep properly night time, but as I've been told to stop my HRT, I am being bothered by menopausal sweats and headaches. On a brighter note, I think the antibiotics are now getting on top of my chest infection x
@pinklily FEC is another chemotherapy regime given for breast cancer. Quite a few people on the boards who have primary breast cancer get a combination of FEC (5-fluorouracil, epirubicin, and cyclophosmamide) or AC (doxorubicin andcyclophosmamide) and a taxane (either docetaxel or paclitaxel), one regime for 3 or 4 cycles, then the other for 3 or 4 cycles. Your nurse will be able to clarify what drugs have been prescribed for you. The side effects are slightly different for each set of drugs.
Several people have mentioned visiting the chemo unit before treatment, and I'm sure you can ask for a tour on Saturday; you'll definitely get one on Wednesday if not before. I didn't get a tour beforehand, but I'd had a quick visit to get blood tests on the day I got my diagnosis, since the phlebotomy department of my hospital couldn't see for a week. It's nice to just peek in, even without a tour, just to know where you're going and what to expect.
@pinklily Most chemotherapy regimes for breast cancer are done on a 3-week cycle -- so every 21 days, as you noted. But don't worry about Boxing Day -- I am sure they'll move it to for you, either because you ask to move it or because the staff in your chemo day unit won't be working. If your treatment gets shifted, you'll have your next treatment 21 days later (they won't put you back on your old schedule). Treatment can get shifted not just for bank holidays but for personal holidays / family commitments, or because your bloodwork or side effects are such that they want to delay your next cycle by a few days or a week or two.
Take a list of questions for your meeting with the nurse tomorrow -- and ask away! As you might have seen in others' posts, there are some common rhythms to each cycle: when side effects tend to hit, when you might start to lose hair (if at all -- if you're not on FEC or AC, I'm not sure what will happen), when your white blood cells will be low and you should limit contact with people if possible, etc. Your nurse will also have lots of information for you -- when to take the medications to help you with side effects, when to call the helpline, when to get your blood tests done before your next cycle, etc. I took lots of notes, but I sometimes ask if I can also record the conversation using my mobile phone to refer back to at home, when things are less rushed.
Good luck tomorrow and next week!
Well I've finally got to the chemo stage, which starts on Wednesday, seeing the nurse tomorrow (Saturday).
It's been 11 weeks since surgery and apart from a minor infection 3 weeks after surgery in the lymph node scar, I've not been too bad, even the slight discomfort under my arm is hardly noticeable now.
I'm having a pick line and know I'm on Taxol and anti sickness drugs, until tomorrow I won't know much else. I'm a bit confused about the sessions, I don't think I took in all the oncologist said and my hubby clearly got it wrong, according to my nurse on the phone, the treatments will be 21 days apart, which makes it a Wednesday and that includes boxing day by the looks of it.
I've kept busy decorating and sorting the garden, but I am apprehensive and even the thought of seeing the nurse for all the pre-chemo stuff tomorrow, is making me nervous.
Thank goodness for all you lovely ladies, it's only me and hubby and I have a couple of close friends, but I would be lost if it was not for you all and the help and advise.
Thanks K - I think I’ll probably ‘brave the shave’ sooner rather than later. My daughter is coming home from Uni this weekend, thought it might be useful to get some make-up tips from her - hoping it will help me feel better as to how I look!
Thanks all, some great advice on when to avoid people and when it is easier to socialise. I have some family that want to visit from Ireland so will use this to work out what dates are best.
My second cycle cycle of EC is due to start on the 26th October. Does anyone know if I can expect it to be fairly similar to the first, or can people experience it quite differently?
Also, woke up this morning (day 15) with a slightly tender scalp and my hair looks as if it is starting to fall out, unsure how long to leave it until I shave it all off. Guess will need to get used to the hat thing!!
Love and hugs to you all xx
Thanks, i'll try to avoid those days for the next treatment and see how I get on. I've got a big wall planner at home with all the appointments and goals on it, and it seems to be making me feel like I am bit more in control of things.
I work from home too which is really handy now because it means I can work away comfortably in my pjs, as and when I feel up to it - plus it keeps my mind busy! Good idea to avoid sitting in the local cafe and working on those days. If my internets been down at home, I've worked in the foyer of a local hotel on my laptop before, and that wasn't too noisy or busy, as I chose a fairly quiet day of the week to do it. Plus there was somewhere to get tea or coffee if I needed it. If I find myself going a bit too stir crazy at home during the treatment, I might just take myself off there again for a few hours lol xx
@lebbie My bc nurse advised me to avoid my local cafe, a regular haunt of mine which gets busy with toddlers (something like an ad hoc daycare/community playdate), during my white blood cell trough week -- days 7-14. I'll pop in to get a takeaway coffee and use hand sanitizer after I leave, but no more days working on my laptop there.
I'm guessing that it's different if you're regularly in contact with the little people -- there are quite a few women with young children going through chemo, and they aren't isolating themselves from their wee ones. Hopefully, one of them will share some hints.
Hand washing and hand sanitizer are a great help. Just also moisturize regularly, too, as chemo dries you out (especially docetaxel). I also tend to cluster social engagements into days 16-20 -- but just like you, I'm only now experiencing my first cycles of chemo during the autumn cold/flu season. We'll all be learning how to be safe together!
Thank you for sharing your experience. I had a cold coming on before my 1st Chemo (I was told to still have the chemo as my temp was okay) , which decided to turn into a streaming cold and chesty cough on day 4 after chemo. I'm now on day 7 and have been given a weeks course of antibiotics as they are worried it's turning into a chest infection. Hopefully it won't delay my 2nd chemo. What advice would you give re contact with other people, especially my grand toddlers around the time of my chemo and in the days afterwards when my immune systems low? They are both at different nursery schools so pick up and share everything that's going round! I love them to bits and hate staying away from them, so it would be good to know so I can try to make some sort of a plan around treatments. xx
Many thanks for taking the time to respond to my posting. I have been to my GPs took urine sample with me. Received a prescription for antibiotics, pessary and creams. There is blood detected in my urine so the sample has gone off for further analysis. My GP practice has been fantastic. My treatment by one specific A&E department regarding Sepsis and neutropenia is currently being investigated. I was admitted on the 19th September the following day my friend’s uncle died of Sepsis. I’ll definitely look into the life Mel honey. Thank you also for alerting one of your contacts to my plight. Very much appreciated Shi xxx