Member
Posts: 287
Registered: ‎29-07-2018

Re: June 2018 Chemo Starters

Hello all

Question for you. I'm between my 4th and 5th cycles of EC and over the last week or so I've noticed that the hair on my head appears to be coming back. Has anyone else noticed this at the same point in treatment? Just wondering if it's a blip or if I can expect it to continue?

Thanks in anticipation

Sue xx
Member
Posts: 691
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Sorry to hear you’re still suffering so much with the SEs ktk but glad the sun is shining and you’re getting to see your son, Have a restful break xxx
Member
Posts: 691
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Hi Linda! So please you had the op and hope you’re felling ok. My scars also go up quite high at side but they have healed well since my last surgery in May. Really hope they’ve got everything, Wishin*you a very restful night and please take it easy over the next few weeks. I will try and see someone else at the Marsden before I make my decision regarding surgery. I’ve had such a different first experience to everyone else I know who was treated there.

Kip fabulous to hear you’re home and op went smoothly. Definitely reassuring to see one of the guys looking after you doing so well after his treatment, I’m trying to put yesterday’s debacle behind me and as you say the person I saw should try walking in our shoes before treating people so unsympathetically! I’m going. To tall again with my surgeon at Barts at least she’s very caring and her manner is impeccable.

Hugs to everyone xxx
Shi Community Champion
Community Champion
Posts: 3,239
Registered: ‎11-10-2017

Re: June 2018 Chemo Starters

Kip 👍👍👍💃🏻💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Well done lovely ❤️❤️❤️❤️Take it steady and you’ll get that drain out within a few days 👍👍👍👍ktk enjoy yourself ❤️❤️❤️Nice walks and 🌞🌞🌞💕💕✨✨✨Shi xx
ktk
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Posts: 558
Registered: ‎02-04-2018

Re: June 2018 Chemo Starters

Hi Ladies. Greetings from sunny Aberystwyth 😎. Having a lovely break, seeing my son, very gentle walks etc. If you found my fb page previously you can see the pics.

Glad it has all gone well for you Kip.

I have really struggled with SEs this round. It is three weeks tomorrow and I’m still not firing on all cylinders. More than anything else I am exhausted. I walked about a mile on flat ground yesterday and it finished me off!!! OH has gone for a cycle. I am reading a book!!!

Love to all Kxxxx
Kip
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Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Sorry georgieg meant to sah take care and rest up, hope you feel better soon

Kip

Xxx

Kip
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Posts: 903
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Hello ladies... Im back!!  Well what a pleasant experience.  Was first on list... My prayers were answered so in op at 9, baxk kn ward at 10.30 eating toast and the best cuppa ever!  Sent home at 2.30 now sag on sofa eating stollen cake... Seems even anaesthetic cant stop my eating.  I saw a lovely surgeon, lovely nurses and made experience much nicer.  Hardly any pajn at moment but ask me agsjn tomorrow might be a different story.  Had level 2 clearance in end, they said theh wiikd do whatever they could get to easily, opened same scar but have the dreaded drain!  So another step forward just got to wait 2 weeks for results.  

CDC, what a nightmare you have had, ao sorry its made decision even harder, but definately seek a 3rd opinion if you need.  I often think that if these professionals had walked one week in Our shoes how different they would treat us.  One of the guys looking after me in theatre obviously knew why i was in and said "ive walked your journey, had the same hairstyle and isnt chemo crap".turns out he had bowel cancer and is all better now... Was lovely and reassuring to see him doing his job again and he was so kind, only those in this boat truly know.  Stick to your guns and dont be put off by that idiot!  Hope numble behaves too.

Ljnda glad you are doing ok, well done.

 

Thank you all for uour good wishes, i really appreciated them, i cried all way to theatre!  

Kip

Xx

Member
Posts: 333
Registered: ‎05-05-2018

Re: June 2018 Chemo Starters

Cdc sorry to hear about your experience yesterday. Could you go private if need be as my experience was the opposite?
Op went well. Am on way home now with results on 1st November. Have a bigger scar than i thought at the side but thats necessary sometimes. He said the 2 xrays they did whilst asleep were compared to the mammogram and he thinks he got it all. X
Member
Posts: 333
Registered: ‎05-05-2018

Re: June 2018 Chemo Starters

Good luck! Had my TM yesterday.
Linda from May chemo thread x
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Posts: 149
Registered: ‎21-06-2018

Re: June 2018 Chemo Starters

Good luck for today Kip, thinking of you 😘 xxx
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Posts: 326
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

Good luck today, Kip!
Member
Posts: 326
Registered: ‎29-06-2018

Re: June 2018 Chemo Starters

@cdc Docetaxel is sold under brand name Taxotere. Regular paclitaxel is sold under brand name Taxol. Nab-paclitaxel is sold under the brand name Abraxane.

 

@Georgie I've been using the polybalm, but not 3 times a day; usually just 1 or 2 times. Among other things, the applicator for my toenail tube broke while I was trying to scoop balm out of the vial, which has made for a bit of a challenge. So my experiment is not ideal. Nails are holding on thus far, though my finger pads are a tad sensitive, top and bottom, both hands and feet, with a little peeling on my heels and tenderness when I walk a slight distance (usually 5ish miles), despite using Udderly on my feet morning and night. We'll see. Gah, sorry to hear about your other symptoms. I get bone/joint aches and pains, but mostly in week 1 of each cycle -- sounds like you've had it much worse.

Member
Posts: 691
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Hi Georgie Gee
Ooh that all sounds horrible- you poor thing.
I get confused between docetaxel and Paclitaxel - I know they are both ‘taxanes’. Which one is taxatere? It seems I’m highly sensitive to taxanes in general -I’ve had some skin peeling on my feet and to a lesser extent on my palms whilst on the paclitaxel. I ended up calling my chemo hotline as it’s an ‘amber’ side effect in my chemo diary and needs to be reported.
I hope an early night will help you. I’ve been advised to Be careful not to rub too hard when using creams on my hands and feet
( not specifically nails) as the pressure can exacerbate problems.

Thinking of you and sending gentle hugs xxx
Member
Posts: 116
Registered: ‎30-06-2018

Re: June 2018 Chemo Starters

Evening lovelies,

 

I am on my 4th day of first 75% taxatere. So far the S E's are a bit different to those on FEC.

 

I have excruciating knee and other joints. Have had to use codeine with nurofen to get to sleep for 2 nights now. First 2 days had a redenned face too so took piriton. Also have lost appetite, and a fruit pastille lolly I tried to take, tasted like salt water. Feel slightly nauseous when I look at any food in my fridge. Skin on my left hand seems to be peeling off on my palm between 2 fingers.

 

so have come to bed early with sore throat, codeine, nurofen, cyclizine and white count injection, plus using polybalm ointment on my nails - Reddi, how did you say you were doing on this? I hope I am going to have enough! There doesn't seem to be that much in the tubes.... Have had some pain in one of my finger nails so rubbed in the cream a little more thoroughly this time.

All the the best everyone on June and August threads, where I tend to hang out.
Kip I especially will be thinking of your op tomorrow.
Be kind to yourself and take all the pampering u are offered!

Everyone else, lets all be here for one another - we are a great bunch of girls on a tough mission and between us we can all get through together 😍😊😃

Georgie Gee xx

Highlighted
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Posts: 671
Registered: ‎30-03-2018

Re: June 2018 Chemo Starters

Clare ... what a horrible man. Don’t think it’s helpful at all to talk about being in another country as don’t know what the service is like, wherever he was thinking of !! Very confusing for you but interesting that personally he would recommend a relative to have bilateral mx. Hopefully you will be able to be seen by Ms McNeil, if not go elsewhere for another opinion. Pleased you have given feedback.

Kip .. hoping you get in first tomorrow and get back home asap... hugs xx

Reddi has also left a message about the missing surgical threads 

xx

 

Shi Community Champion
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Posts: 3,239
Registered: ‎11-10-2017

Re: June 2018 Chemo Starters

Hi kip, don’t know if this will help darling, I did google my operation and watched a video before mine, found it calmed me to know what was actually going on while I was under, if that’s not the case for you, then no googling. Take it steady after op, no heavy lifting, hooveringvor anything like that, give yourself chance to knit back together. My surgeon had me wash in hibiscrub before and for weeks after op and it worked well. It’s ok to feel 😳but please trust your surgeon you can do this darling, after chemo it is lemon squeeze promise 👍👍😘😘😘you’ll be 💃🏻💃🏻🕺🕺🕺💃🏻💃🏻💃🏻Gangam style with the rest of us before you know it ❤️❤️❤️Darling 💕💕💕✨✨✨Shi xx
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Posts: 691
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Loving the new name Red Rose and hoping you can resume your chemo next week,
.
Kip I’m sending huge hugs and best wishes for your surgery tomorrow.

I had the bizarre and quite frankly horrible experience at the Marsden. My husband and I were hoping to transfer my care there as we’d heard such great things from two people who had their mastectomies and immediate tummy DIEP reconstructions at the hospital. They were both very happy with the surgery and particularly the level of care they’d received, i was expecting to see Ms McNeil as Id been in contact with her secretary. Her resume is impeccable. We got to the waiting room and sat there for an hour. We were impressed with the friendliness of the reception staff and also those we saw coming to take patients to their appointments. They were very apologetic for the delay. We were taken aback when an unsmiling man came towards, without a hint of an apology, and then took us to a consulting room without explaining who he was. Turns out he was a locum consultant. He said he had not been told why we were there and were we expecting to transfer care or after a second opinion. We backtracked and said a second opinion as neither of us felt comfortable with his manner. To cut a long story short he kept saying if I lived in another country my treatment would be regarded as finished as my margins of 0.5mm from the reexcision would be considered ‘clear’. In th UK however, protocol is to do more surgery. Now the possibility of not needing further surgery would be absolutely fantastic news if it wasn’t for the fact we’ve been told by Barts that I need a mastectomy with nipple removal as the areas of cancer they found post my second op are directly underneath. Thankfully I had taken my file with every single piece of correspondence I have ever received from Barts and could show him where this is clearly stated. He told me that having surgery would make no difference to my prognosis and the likelihood of reoccurrence. He showed no sympathy for my situation and made me feel that the Marsden do not usually deal with ‘straight forward’ cases. I know this is not necessarily the case. Eventually my OH asked the consultant what he would do if it was his female relative and he said he’d recommend a bilateral mastectomy due to the significant family history. Talk about confusing??? We did not mishear him or misunderstand as my OH has the good sense to record the appointment. Anyway we left not knowing what to do,, I felt extremely tearful. This consultant showed no understanding of the devastating impact my diagnosis, family history, surgeries, chemo etc.... has had on my family especially with my Mum having a second primary cancer last year, my cousin undergoing surgery for BC this month (she is to have a second re-excision as the first did not get clear margins) and my brother waiting to see if his biopsy confirms skin cancer. This information had just been given to him in the form I had to fill in before he saw me. We spoke to Ms McNeill’s secretary again and she is going to send our feedback to the consultant we saw today and also cosuot with Ms Mc Neil to see if she would be willing to see me herself. I now have very differing advice from two hospitals. Really don’t know what to do apart from seek another opinion from a third!

Anyway for some better news, there seems to be a slight improvement to the sensation in my left toes. Numble on the right is still seriously affected and I am finding it harder to walk as I feel like I’m waslking om semi-frozen feet. I will wait to see what the oncologist recommends on Thursday, There has been talk of reducing the dose again or trying an alternative to a ‘taxane’ drug. Hopefully whatever they decide K can resume chemo this Friday. unfortunately I will not be seeing my lovely onc as he is at a European conference delivering the key note speech in advances in treating TN Breast cancer. I’m sorry but I hadn’t realised his research is into new treatment to extend the life expectancy of those people with secondary TN so hopefully not relevant to those of you with Primary TN BC.

Sorry for such a negative post when maybe I should be rejoicing that in another country I’d need no further treatment. It’s just been a thoroughly frustrating day that has left me with more questions than answers,

Moan over and normal service will resume soon I’m sure.

Take Care everyone.xxx

PS Hope the moderator can get the monthly surgery threads up and running again soon. Thanks for talking to them Jean xxx
Member
Posts: 589
Registered: ‎30-03-2018

Re: June 2018 Chemo Starters

I’ve just comemon here to wish you luck for tom Kip, I thought it was just me having probs with it. I wrote a really long post earlier and lost the lot, so frustrating!
Just want to say good luck tomorrow Kip, I know you’re nervous but a wise lady said to me a couple of months ago “you’ve done chemo, this is the easy part’ and you were right!
Hopefully the May surgery thread will be ok tomorrow xx
Kip
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Posts: 903
Registered: ‎27-04-2018

Re: June 2018 Chemo Starters

Yhats weird i i c still see the may surgery thread but cant reply to anything as its greyed out!  Whats happened?

Member
Posts: 691
Registered: ‎25-03-2018

Re: June 2018 Chemo Starters

Thanks Jean
I can’t see the Surgery monthly threads either! Hope those who had surgery today are recovering well and good luck to those having surgery later this week! Sending my very best wishes to everyone xxx