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I will be a March starter - seeing oncologist this week and will start next week. Already had single mastectomy and will have chemo and radiotherapy. Cancer was hormone positive and HER2 negative with lymph nodes involved. I'm actually not bothered about losing my hair - I have more unwanted than wanted hair nowadays!!
I'm new to the forum - can anyone tell me how to mark this thread so I can find it again? Thanks!
Yes, I am 'Triple' positive with lymph node involvement....
I'm having my Chemo before surgery with Herceptin and Pertuzumab alongside the Taxol.
I hope your treatment went well today!
Hi everyone and welcome all our new ladies!
Moonstruck, glad to hear your first session went better than expected as booked in for my first one tomorrow. I'm also having a Zoledronic Acid infusion as well, so anticipate a long day.Gosh, I feel tired already, thinking about it!! Although I had my pre-assessment with doctor on Wed had to go back on Fri for my echo (admin messed up app time) then a quick dash off to see the dentist. At least I had this weekend to relax a bit.
Rebecca-your regime is identical to mine (EC + Taxol) Are you ER+ as well with lymph node involvement?
I'll pop back and let you know how I get on.
The very best of luck to everyone!
Hi Everyone. My first chemo on Friday went ok. I was very anxious about it, but it was fine and went exactly as they said - the nurses were all lovely and my husband was allowed to stay with me the whole time as there was space. No SE - felt a bit sicky and tired, but have had lots of sleep over the last couple of days and not allowed to do anything at home. At a bit walk this afternoon in the sunshine - good to feel fresh air!
Glad to hear that you have held your grandchild grandma - must be an amazing experience - enjoy! Good luck to all you first timers, good to have my first session done - although I know it is still early days. Xx
Hi Linda, welcome - sorry you find yourself joining us but you'll discover that being part of this website is a fantastic help - we 're all working through the same problems.
I'm also needle phobic and have deep fragile veins or so I'm told, hence the portacath tomorrow. Seems like the main advantages are that once fitted, it's easy access for drugs etc and there are no dangling bits so you can shower, swim, do sports etc if you have the energy . I have also been having a course of hypnotherapy to get over this phobia so tomorrow's procedure will be the first test of the new brave me - will let you know if its worked.
Good luck with your oncologist - hope everyone has a good week. Pam
Thanks for that newgrandma, sounds really good. I'm definitely going to look those up. I am going to try get some treatments organised too, Doing a welcome day at 'the haven' next week.
Good luck with the Portacath.Im sure it will be fine. I'm having a Picline in next week - as I think it just saves on too many needles and stress finding veins.
Great that you've finally got your assessment and in a new unit! I have had one chemo session and actually the anticipation was much worse than the reality in my case!
What a special time having a new baby in the family/ I still have 2 Little's (4 and8) - had them quite late in life ha ha but they are lots of fun ' Beci
Hi rebecca14, I have found cds and books by BERNIE SIEGEL really helpful. I got mine from amazon, you can Google him. He's a US surgeon, it's a mixture of meditation, visualisation and self hypnosis, great for relaxation, getting back to the positive place or just getting back to sleep! He has a group called ECAP ,exceptional cancer patients. I'm going to try using it during chemo as it helps me calm down . Also, If you can find someone to give you reiki , it's a great way to relax around treatment times and of course, it can't interfer with drugs or rads.
I'm going for my portacath tomorrow and new patient assessment next Monday. Got delayed because of Appts mix up and hospital unit refit - they have been doing chemo in a van!!! But new onc unit opens next Monday, so new unit, new patient.
On the positive side, finally got my cuddle with new grandchild who is of course the prettiest baby ever. Wishing you all well this week. Thanks for all your input - it's so good to have this contact cos I know you understand exactly where I'm up to. Pam
Hi Newgrandma - sounds like you have had a hard time plus not being able to hold your grandchild! Time seems to stand still and the waiting is hell - your brain goes crazy trying to cope with the unknown. My chemo starts tomorrow and last weekend I was freaking out about it. Talking about it helps and I have found this forum great - so many woman with lots of different stories and lots of tips and things to think about. I have had my hair cut short this week - not been this short since my boys were young more than 15 years ago. Also been to see about a wig with a friend and we had fun - the staff were great. I can also recommend the helpline - I phoned at a low point and spoke with a lovely lady who asked me questions to get me through my tears and shared some experiences it did help. I'm a bit concerned about my younger son who is 23. I see him about once a week and we do text and I have given him information but he's not good about talking about stuff - like most men - and he doesn't like seeing me upset, I'll see him tonight and hope I'll get a chance to speak to him on his own. When do you stop mothering your children? Anyway, today's task is to organise myself for tomorrow and buy a couple of new magazines and some nice snacks to take with me tomorrow.
Hi, yes thanks Angie Pink although I still don't have my start date and the delay is starting to get to me. First grandchild born safely on Monday which has refocused everything for me. Had a cold too so couldn't go in for a cuddle!
Breast lumps feel bigger so really want to get on with it. Will have to ring bcn again to see if anything is organised yet. Had got myself in a really positive place but being in limbo is wearing that down - it's less than 12 weeks since diagnosis but I feel like this has been hanging over me for years and I'm not getting anywhere except more worried. Sorry to ramble- guess shouldn't be on here in the early hours anyway.
Hope everyone has a good day.
I am just joining you all for March chemo - had my 1st chemo last Thursday im on Paxitaxol for 12 weeks/herceptin every 3 weeks.
This Thursday is my second chemo, i also cool caped. The cook cap was difficuilt for the first 20 min &
then you sort of get used to it. I also tied a scaf around my head to keep my checks warm , I felt really cold
but it was ok. I also used the hand pads to keep my face warm , it did work and a hair band underneath
the cap on my forehead this stops brain freeze.
I've been fine this week - just want to get this over asap now.
This is my story, I double mastectomy last november with implants reconstruction - HER2 +++ , 2.5mm was the largest followed by many smaller tumours,2 lymph nodes removed all ok.,Est dependent on one side only, I decided on a double as i couldnt cope with thinking of the future as mine was agressive. The reconstrucution failed and I had them removed and expanders put in - I then i got another infection - expanders now removed as I had to heal to start my chemo.
I will go back for reconstruction later in the year once this part of my journey has finished.
Good luck to you all who start this month, would love to hear from anyone.
warmest love Star xx
New to the site so think I started in the wrong place (Chemo) but at AngiePink's suggestion, am joining you ladies on this thread as I'm due to start chemo in March. Don't have a date yet as funding needs approval and then echo test etc as my planned protocol is docetaxel, herceptin and perjeta - how do they think we'll remember all these complicated names with chemo brain?
I'm also type 2 diabetic which I control with diet and exercise so not sure how the SE's will affect my blood sugar. Have read lots of threads and find all the info and tips really helpful - there seem so many of us in this wonderful club!! Everyone I speak to knows someone who has recently been thru the same - is there more BC or is it just that we are more open about it and willing to talk? That seems like a good thing to me.
Am inspired by you ladies out there who are willing to share your experiences - makes it so much easier for all of us. Thank you.
I just wanted to wish everyone well who's starting treatment this week.
I am having 4 cycles of EC , followed by 4 Docetaxel. Followed by surgery and radiotherapy.
I had my first EC session last Thursday and on the whole it has been alot better than I'd imagined.I'm not sure what I expected but mainly I've just been really weary and a bit wired!
I've think I've been lucky and any major side effects have been managed by the drugs I was given and although i've had a chemical type headache, mouth etc, I have just stayed around home and luckily had people to help with my daughters.
Now I've stopped taking the steriods, anti sickness etc , I feel ok! A bit light headed but up and about.
I ate really lightly the 3 days before Chemo and have been drinking 2 litres of water a day and done a few minor walks and had some naps. Not sure if this has helped ..
I also tried the cold cap. I took 2 paracetamol before and the first 15 minutes were a bit testing but then it was managable.
Anyway, I hope this gives you some hope for the coming days. 😆
Lovely to meet you all.
My hair was right down to my bum, long and curly. I chopped it above my shoulders a few days before my first chemo. I'm on day 12 now and every morning I wake up and give it a tug and check my pillow to see how it is.
I didn't cold cap as I didn't want to stay in hospital any longer than necessary and also it doesn't have a great success rate with FEC. I've got loads of scarves and I'm going to go wig shopping on Wednesday next week as my 2nd chemo is the next day.
I didn't want want to lose my hair, but now I'm not bothered, it will grow back.
Hi again everyone!
Gosh, I see our list is growing
I'm going to give a brief summary of my background. Dx in late Sept with Grade 2,IDC with no node involvement. ET+ so put on Letrozole to shrink mass before surgery which I had on Fe4b 2. Now, given that margins weren't clear and 2/5 lymph nodes removed had micro and macro -6mm meths, I'm having to go down the chemo route. I'm having EC every 3 weeks for 4 cycles and Taxol (Paclitaxol) every 2 weeks for 4 cycles. Also Zoledronic (Bisphosphonates) acid infusions as well.
Liz, like you I hate the throught of losing my (long) hair and am contemplating having the cold cap. I'm hoping because I have fine hair it might work better! Actually, since I hate cold water on my head-not to mention freezing- I'm considering having a practice at home in terms of prepping for the first day!! LOL
Best of luck to you all!
and also welcome to Silverlady, Moonstruck and Liz.stanley to the March 2017 starters thread.
I really appreciate the fear of losing ones hair. It is so much of our identity and not all of us have either the courage or feel we look ok without our crowning glory.
I arranged my wig well before starting chemo. It really pays to wash the wig with the appropriate shampoo, before trying to wear it. It makes it much softer and plieable. It also may be a good idea to go with it to your hairdresser. He/she can thin it out a bit and make it look like your current hairstyle. It does make a difference. Another tip - I wore my wig out over my long hair to see whether anyone would notice. And they did not. It gave me much confidence, that I would be ok wearing it, when the time came. Once that was done, I had my long hair cut and shaved to a Sinead O'Connor just before my first chemo. It helped me to get used to the look of having hardly a hair covering and also gave me time to adjust my makeup, accessories, etc. - so I could make a fashion statement out of the whole thing - should I not wish to wear my wig.
It is a very individual thing and not all can cope that way. There is a possibility of 'cold capping', which some ladies do. The success rate is 50/50 as to retaining at least some of your hair. It lengthens your stay in the chemo unit by aboout 30 minutes before and 90 minutes post treatment.
I have my first chemo on Friday - 3 sets of FE and then 3 of CT - I had a lump removed and my lymph nodes 3 weeks ago - everything seems to be happening very quickly, but it seems like I've been waiting a long time for chemotherapy. I've had a look around the site yesterday and today and it is great to see al the tips - I have list of things to get.- it;s great to feel like there is stuff I can do to prepare myself.
I'm getting my hair cut short on Wednesday and hoping to get an appointment about a wig before Friday.and have ordered a hat - just spent the last 10 minutes trying to remember where I have put my summer hats - one or two of which may be useful - but not found them yet!
It's good to find others who are going through this at the same time as I am - I have a lot of family support from my husband and two grown up boys and other friends and family but they don't know what to do or say as it's new for them too.
As other people have said - I am dreading chemo, but will be glad when first set is done so that I know how my body is going to react. I'm a bit of control freak and like to plan things that are happening in my life, so not being in control is not helping me.
I think I've ranted enough now - time to think about hats again.
Hi Helzie, Rebecca & Rachel,
I had my first chemo 10 days ago (FEC) and doing o.k. On the first day I felt dizzy and a little nauseous & had a headache. The 2nd day I was dizzy and tired as I had been up from 2:40am wide awake from the steroids. The headache was manageable with paracetamol and disappeared when I stopped the steroids.
I have had tingly hands and feet but was told to rest and massage aqueous cream into them. My worse day was day 5, my mouth was covered in white, it just appeared, my teeth ached, my bones ached. I checked with the hospital and was allowed some paracetamol and told to use corsodyl. I could feel the ulcers trying to form. But the next day the white in my tongue had nearly disappeared. I use the corsodyl when it was tingling and I could see the ulcers at the back of my mouth, but today they have gone.
Yesterday was a bummer, as I felt dizzy again and so fatigued. But the Nurse just said it was a side effect of low white cells.
My next one is on the 9th March, just after yours Helzie.
Hi Helzie, Rebecca14 and RachelElizabeth
Welcome to the thread! Sorry to find you here - however, these threads are a brilliant means of support. You can ask questions, share your own experiences and tips with each other. Cry and rant - should you feel so - and you might....And, of course share some funny stories, too. And yes, there will be funny stories! As well, also many virtual hugs.
I remember, just post chemo 3, wearing a long rectangular head scarf with ends trailing and doing the vacuuming the carpet in my hallway. As I was not quite so fit anymore - I did it on my hands and knees.
Suddenly I felt a tugging on my head - and hey! The long trailing end of my head scarf dissapeared in the nozzle of the vacuum cleaner! - I shrieked - and burst our with absolute belly aching laughter - seeing the face of my cat, who had been watching me.......
I shall do my best to support all initially sharing my experience and knowledge I have gained through my chemo journey. However, eventually I shall drift into the back ground - as you and other ladies joining the thread support each other.
For some it will be easier, for some it will be more challenging. It is a very individual experience for all of us.
But all of you WILL get through it.
I had my first EC on Thursday.
I thought I would join the March thread as it's so near the end of the month and should tie in better with everyone elses cycles.
So far starting treatment has been much better than I expected. i appreciate it's only day 3 but so far so good.
Thanks Sue-this is brilliant. I've (rather reluctantl!) been keeping an eye out for this since I'm due to start on March 6 with my pre-assessment on the 3rd. I've browsed some of these links in the last few days. It will certainly be a great comfrot to me to know I can come here and receive some support along the way! Currently I'm feeling a mixture of trepidation combined with a sense of wanting to get it over with!
At my last meeting with onco a port was mentioned for which I'd require a GA. I'll enquire about it on Wed as I'm on EC for the first 4 cycles. Have dental app on Friday (first I could get) but have good teeth generally.
And here is the March 2017 chemotherapy starters thread! Hopefully it will become a lively and supportive thread for all of you having to go through your various regimes of chemo. Please do not be too worried - you will all get through this. For some it may be harder than others, as side effects tend to differ from person to person, even if on the same regime. Sharing your experiences will help others, even if you never see them posting. It is also a great place to share your frustrations, ask questions, laugh, cry, rant and rave. I finished my chemotherapy and radiotherapy on 26th October 2016 and shall be 'lurking' to support you , where it may be relevant.
Any side effects you do get please note them down for your treatment team. Keeping a diary may be a good idea. If they become too challenging and you advise them accordingly, they usually tend to adjust the accomanying medication to make your journey easier. Most side effects experienced in the first cycle are likely to be the same throughout, as long as you are on the same regime. They may improve with adjustment of medication though.
Here are some helpful links for you to prepare and support you.
Chemo preparation -
If you do not have a PICC or similar port installed and you are on FEC throughout - you may wish to ask for one to be installed. FEC is quite tough on your veins. This thread may be of help though for all of you - https://forum.breastcancercare.org.uk/t5/Top-tips-and-practical-support/Vein-Care/m-p/1036347#U10363...
And this one covers everything from food to make up and wigs - you may have to explore in more depth to find something specific you are looking for -