It looks like there tends to be a new thread each month for the chemo starters where we can hold each others hands (virtually), support each other and compare stories, and maybe even have a laugh and joke along the way too. I got my start date yesterday of 9th October and I can’t see an October thread yet, so thought I’d start one!
To introduce myself, I’m Chris, I’m 48, I live in Cornwall and I was diagnosed with grade 2 lobular cancer, no node involvement, on 4th June. It’s been a long journey, I had to have an MRI then I looked into hormone treatments before surgery to shrink tumour but decided against it, then had a therapeutic mammoplasty on 23/7 with sentinel node biopsy, which was clear thank heavens. However they didn’t get clear margins so had to have a completion mastectomy on 20/8. I’d been told all along it was unlikely I’d need chemo so it was a bit if a shock when we saw the oncologist last week and she recommended that I did. It is because the tumour was larger than first thought (and than the MRI had shown). So I’m having FEC-T, 1st three cycles of FEC then 3 of T.
Looking forward to meeting any other ‘October starters’ and supporting when I can.
Hi Chris my name is Marie I’m 45 and live in South Wales. Diagnosed with PBC grade 3 in June 15 had not spread thank god positive for both targeted therapies and due to start chemo next month (maybe) i have had a few brain aneurysms over the last 3 years so they are not sure due to blood clotting if I can have it? Waiting on decision… Reading all the posts is both frightening and comforting!! Strange!! Good luck with your treatment keep us posted xxx Marie xx
Glad you have started this. Pretty sure I’m joining you on start date so will definately be holding your virtual hand. I’d like to say that I hope some others will be joining us but obviously it would be better for them if they didn’t have to!
I’m Ruth, live in London and am 51. One husband, three cats. I am also grade two lobular but with a couple of pesky DCIS that were only discovered after the original diagnosis when I thought I was just going to have lumpectomy, rads and tamoxifen. Wind forward a few weeks and it turns out I have dense breast tissue where even the original tumour could not be seen on normal mammo. MRI and enhanced dye contrast mammo followed (the latter being the strangest of experiences) and that’s when the DCIS were found (also grade two) and I was upgraded to a MX and immediate reconstruction with implant and strattice mesh which I am very pleased with so far and I have had a really good recovery physically. One of two nodes taken at original surgery had a very small micro-met. As documented elsewhere, I’ve been given conflicting advice as to whether to have full node clearance or not. In any case, I expect to delay my decision on nodes until after chemo.
Like you Chris I’m having three of FEC then three of T. Looking at the calendar I’m hoping we won’t be having one of our sessions on New Years day - if I’ve read the calendar correctly that is!
Off for a Headstrong session tomorrow. I am worried about possibly having less or no hair throughout winter although my husband, who shaves his hair very short, tells me I’m being a wimp.
Hi all, I’m Jayne aged 46 from Nottingham, husband, two kids and a stubborn westie. I originally joined the September group but still no start date!! I was diagnosed with a 1cm tubular cancer on 1st June, lumpectomy and sentinel lymph node removal on the 1st July, which was to be followed by rads and tamoxifen for 10 years. However, results came back 3 weeks later, showing tumour was 19mm and there was another area of IDC and 1 of the 3 nodes was positive. Change of plan re-excision, and therapeutic mammoplasty on the good side and total node clearance on 19th August. Results came back, clear margins and no more lymph node spread, 1/12 affected. Now got yo gave chemo. Had first onc appt last Tuesday, waste of time say there 2 ¾ hours, before being told my consultant was sick, but I did find out I was having FEC T, 3 of each. Now got another appt next Tuesday with onc and new patient appt with chemo nurses on Wednesday. I’ve also got to have bloods done, I am really hoping for a start date now this Is dragging on. I do hope we can all get each other through this which I know will be hard, but so are we, we are women, good luck ladies and looking forward to being with you all on your journies xx
I’m from the October 2014 thread. The ladies from the October 2013 thread helped us through chemo, so a year on I have come back to see if I can help you through and answer any questions you may have. I found these groups to be incredibly helpful both practically an emotionally.
I was diagnosed July 2014, had a lumpectomy in August last year, 6 nodes effected so had all of my lymph nodes removed too, 2.5cm tumour - I found the lump myself. It was a grade 2 invasive ductal cancer, so they were surprised that it had got into so many nodes. I had 3 FEC and then 3 T (taxotere) followed by 12 weeks of daily radiotherapy. I’m still feeling a bit tired after finishing all the treatment in mid-April, but I’m getting there now. My hair has grown back, very very curly!
My hair fell out five weeks after my first chemo. Well it actually got so ratty and so annoying having hair falling out absolutely everywhere in clumps that I asked my husband to shave it off. Before it feel out my head felt very irritated and sore, a bit like sunburn, so it was a relief to shave it off and be able to slap some nice soothing cream into it. Some of the other ladies in my group did the cold cap, and some of them managed to keep some of their hair, others gave up because it wasn’t working too well for them. I didn’t try the cold cap, because I get migraines and I’m pretty sure it would have been too painful.
I’m happy to answer any questions you might have if you’d find it helpful. I wish you all the very very best for your treatment. 18 weeks does seem like a long time, but it does pass - by this time next year you’ll be helping the next batch of new ladies and you’ll be through it all and out the other end.
How lovely of you to come back and join us “new October people”. Thank you. I dare say we might be picking your brains in the not too distant future.
I had a lovely Headstrong session today organized via this website. It was fabulous and the two ladies I spent the hour with really marvellous. If only have BC was always so much fun! Anyway, I received a lovely pink scarf/bandana and complimentary headband totally gratis and some fantastic tips on headwear. Really recommend this to anyone if you can get to one in your area.
I am dithering about cold capping. My onc told me when we went through the treatment plan was that it is often very sucessful for the FEC but can be more difficult when it gets to the T. One of the ladies I saw today said that the caps are generally “one size fits all” so not always easy to get a perfect fit for everyone. I was a horsey girl in my youth and found it really difficult to find a riding hat that would fit me and wonder if that will go against me re fit. I’m also not sure that I’d find it more traumatic to lose hair in certain places but not others and how you would get a decent style back after that? At the moment I’m coming down on the side of just accepting I’m going to lose my hair and spending less time in the chemo unit per session. That said, I might regret that decision at a later date, especially going through a British winter with no hair, and I have heard positive stories about how the cold cap has helped lots of people retain a significant percentage of their hair. I’m seeing the chemo nurse next week and have some questions for her so am still open to persuasion.
I’m now sat with a glass of wine deciding what headwear I might purchase after the session today. Any thoughts that I might save money on hair cuts and colours is slowly being replaced by thoughts of how many hats/turbans/scarves I might buy!
Hi ladies, I’m from the November 2014 thread - although started chemo on 31 October!
I personally would thoroughly recommend cold capping. I had 3 x FEC and 11 x weekly taxol. I cold capped right through and lost roughly 50% of the weight of my hair evenly over my head. It came out a couple of weeks after the first fec, but then no more after that. It was thin but I kept it in a ponytail which helped to disguise the thinness. I didn’t look like a cancer patient and if you didn’t know me you wouldn’t have known.
A year on and I have a full head of healthy hair in a layered bob. I used to have long straight hair but cut it to a Bob for chemo, then as new hair started to grow I rather liked the layers as it looks much fuller so have purposely kept it shorter! Have been having it cut since April and coloured since June.
All the best to you ladies, it’s a tough year but with the support of this site you can do it x
I was told dr organics from holland and Barrett I have bought some but I haven’t had any problems yet it might be the T part of FECT that the problems may occur but I would look at other threads to see if other ladies have had problems during the FEC cycle xx
Thanks for your take on the cold capping Riversidedawn. I may be persuaded to do it and it’s on my to-do list to think about it some more this weekend. I’ll be talking to my BCN on Monday so I’ll bring it up with her then and get her opinion. I found out yesterday that my usual hairdresser is going for surgery in the next few days so won’t be around to give my hair the big chop I was planning which has thrown me a bit. I’m going to find it hard enough cutting it much shorter but even more so with a new hairdresser I don’t know
Interested to hear if anyone does have any nail tips. I feel a bit squeemish about the thought of them falling out!
Anyway I’ve had my flu jab so one thing ticked off the to-do list.
Welcome Mariej2205, PeggyCat, Jayneyb69, FionaJMD & Bazza7676 (&Nikki) I’m sure we will all support each other as best we can, plus any others that join us as time passes.
Also welcome and huge thanks to Peta & Riversidedawn for taking the time to join us and pass on their hints and tips from last year. It is such a lovely thought that in 12 months time we will hopefully be doing the same, having fought this ‘battle’ and won.
I’m not planning on using the cold cap, I don’t like being cold and I am susceptible to headaches so I am preparing to lose my hair. I do need to buy a thermometer (any recommendations?) a soft toothbrush, some hand & nail cream (plan to try Dr Organics) plus lots more I haven’t yet thought of I’m sure!
A tip from my sister who has recently completed chemo for bowel cancer was to go to the dentist before treatment begins as you can’t have dental treatment during chemo and apparently it can also weaken and discolour your teeth.
Has anyone had a flu jab? I think I saw you had Peggtcat? I’m not normally eligible but I suppose we now would be? Is it receommended? I’m already getting paranoid about anyone sneezing or looking like they have a cold being near me!!
I hope everyone has a good weekend, the weather forecast is looking good here.
I suspect we are eligible for a flu jab but my GP’s stock is not due in until early October and you can’t even ring for an appointment until early in the month and as it takes 10 to 21 days to build up immunity I thought I’d just go ahead and shell out for it anyway. If you have a Sainsburys nearby with a Pharmacy it is only £9. I think Boots are charging around £12. Worth it I think. I’ve a dental appointment next week as am paranoid about my teeth to start with. Didn’t know about the discolouration possibility though. Oh joy.
I started making a shopping list earlier today of things I need to buy before I start - it’s A4 size and I’ll be moving onto page two before I know it I’m sure.
P.S. My onc said a very good idea to get a flu jab before you start if you can as you can only have it at a certain stage in the three week Fec-T cycle - just before you start a new round.
I managed to squeeze in a flu jab between surgery (sept) and chemo (end Oct). Recommended by surgeon and onc. Also advised to take multi vitamin with zinc to boost immune system
Morning Carol, all good advice is welcome. Do you ask for lorazepram on the day? Is it a particular brand of nail varnish that’s important or just that it’s thick?
Morning all, still waiting for my date, but I have onc appt on Tuesday and an appt with chemo unit on Weds, they have also given me a blood form to have my bloods done at one of these appts. Hoping to get started soon, as then the end date will be a focus. I have been shopping for my ‘chemo kit’, £54 lighter. I brought a thermometer, Aveeno hand cream, and body moisturiser, chorsodyl mouth wash, lip care cream, baby toothbrush, diarrhoea tablets, constipation tablets (at this point the cashier did look at me a bit oddly), and 3 bottles of hand sanitizer to put around the house. I’ve still got more to buy, but it’s a start. I also got some Bio oil (on another shopping trip) for my scars, has anyone found this helpful.
THANK YOU all for your hints and tips and massive support, we will get through this as one ((((((OCTOBER LADIES)))))) xx
Jayne, I started using Bio Oil about two weeks ago - my op was four weeks today. I have been fortunate to heal really quickly according to my consultant. Think it’s probably too early to tell but I think it’s helping. I am not in any way as horrified at the scar as I thought I would be - although this being my first ever surgery I’ve nothing to compare it with.
Carol, thanks for joining us. Good to have your cold cap experiences. What was in the “party pack” of drugs that you received from the chemo unit if you don’t mind me asking? I’m seeing my GP this coming Tuesday so wonder what I should be asking her for. I guess it varies from place to place but interesting to have some idea. Many thanks.
The flu jab is something we need to think about. Do they recommend you getting one? So much to buy for preparation. I wonder how people who don’t look for this info get through treatment.
Thanks Carol, yes I will be having Fec-T. I should be meeting the chemo nurse for first time next week and have very large list of questions to ask so will add this to it.
Barry, when I saw the oncologist for the first time this week I mentioned the flu jab and she said a very good idea as if you are immunosupressed you are in more danger of contacting. If you are feeling rough from the chemo I would imagine a dose of the flu on top would be grim although I know that the jab only provides a certain percentage of protection. Know what you mean though about all the things we have to research. I guess we are lucky being able to do so much online aren’t we? And we are so much less isolated than the people who went through all this in the pre-internet era and can give each other advice and support.
Hi Barry - my onco advised me to get flu jab before I started chemo. Nikki will be entitled to it if she tells gp she’s starting chemo, my gp offered it to all family members too xx
The onc we saw (registrar) said it was fine as long as it wasn’t a live strand. But she didn’t exactly go “yes you must go and do it”. We probably need to call the docs I guess x
