Hi Ladies
As some of you know, I’m IDC Grade 3 (Stage 2), WLE clear margin, no node involvement and no LVI. Hormone positive 5/8 (but being re-tested as this was given during core biopsy)
I was told that I am borderline for chemo and now have an appointment to see the chemo doc on Wednesday 22nd. I’ve been reading all the chemo threads (Valentines, AAA & Moonbeams) and now have a rather extensive list of meds to request and other stuff to help me on the chemo train.
So that I’m fully prepared, I was just wondering if there were any specific questions that I should ask?
As a side note, I am going to take chemo - There is no question about that 
All (any) help would be very much apprecaited.
Thank you
Martha xxx
Well Martha, I will state the obvious. You need to know the regime he is suggesting, and you also need to know why he has chosen that over the alternative options. The bog standard regime is FEC-T or just FEC. In my case FEC x 6 was recommended for me by the Registrar. This was subsequently changed to TCH by the big chief oncologist. I was assured this was entirely down to my age and the fact I need Herceptin, which seems to have been overlooked by the Registrar - so if you see anyone less than the main man, do check.
Ask for a copy of your WLE path report if you don’t already have one.
Well done for chosing to have chemo. Personally I think that was the right decision. Good luck on Wednesday, too.
Hi Martha…as Lola65 suggests if your Onc recommends chemo, ask why that particular regime. The Onc and chemo team should between them give you all the information you need about possible side effects, things to watch out for e.g. very high temp etc. you will probably be bombarded with information so take time to inwardly digest and ask for what you need. If you are borderline for chemo, then sensible to ask benefit/risk analysis. As data is based on historical stats and predictions from research, no-one can accurately forecast how an individual will react to chemo. Some people appear to ‘breeze’ through it whilst others suffer almost every side effect going. I was somewhere in between. Chemo not only destroys any lurking cancer cells but also healthy ones (although they do repair), so you will almost certainly lose all your body hair, and it is likely that your mouth, throat, stomach, bladder and bowel may be affected in some way…some 11 months after finishing chemo I have 2cm of thin, sparse hair, very short eyelashes, practically no eyebrows, but VERY hairy legs!!! My diagnosis was almost identical to yours but only 3/8 ER+ hence FEC-T. I worked all through chemo, and thought I was OK but looking back realise how slow and generally ‘muggy headed’ I was especially towards the end as the effects are cumulative. I am slowly getting fitter, stronger (with the help if some holistic therapies and swimming) and my memory is improving. Docetaxel (T part of FEC-T) can affect your nails, bones and nerve endings. I still have no feeling in my toes, and various bones ache periodically but I have lovely nails 
I suppose what I am saying is with the help of your Onc consider everything and make an informed decision that is right for you depending on your particular circumstances…good luck for Wednesday.
Hi Lola and Maryland
Thank you so much for the advice - There were a couple of things I hadn’t thought of i.e. Why that particular regime and also my path report.
I’ve written these in my little book so I will remember them. I’ve also done the NHS Predit thing that is online so I have a good idea of the analysis, but just in case, I’m also going to add that to my list of questions.
I’m not really looking forward to chemo and I’m a little scared (if I’m totally honest), but I know from reading the chemo threads that it is do-able and I will get through it.
I was talking about this with my OH and his main concern is the hair loss as he’s a long hair kinda guy and really hates short hair on women (shoulder length is acceptable lol). After our discussion, he’s come to the conclusion that it will be benificial to him as I won’t be stealing his razor any more lol.
Bearing my OH in mind, I’m also going to ask about the cold cap and see if my hospital do it. If they do, I’m going to give it a try and see how I get on with it.
Your advise is appreciated - Thank you,
Martha xxx
Martha, if you are thinking about trying the Cold cap, it might be worth reading The thread ‘Calling all Cold Cappers’. I started this a while ago in the hope of getting advice from other ladies who had used it and were a little ahead of me with their Chemo - and received a lot of helpful advice.
I have just finished FEC 75 chemo today (I had Fec 75 x 6 for adjuvant an 2cms lump IDC ER+ 7/8 + HER2 borderline for which I will get Herceptim injections after chemo. I had a WLE and SNB clear nodes and margins in November) The cold cap has worked very well for me and although my hair is a bit thinner, I still have a full head of hear and have no bald patches, meaning my wig remains on the wig stand - and has never seen the light off day!
If the CC is available for you at your hospital, then I do recommend you give it a go - it really helped me get through chemo, the hair loss part of the treatment was, for me, the most upsetting. And the cold cap made it more manageable and life more normal. Make sure you are fairly assertive - you may not need to be of course - i say this only because with the CC you will need a 5 hour treatment slot, as the cold cap needs to be switched on for half an hour before treatment starts to freeze the hair follicles, then a further 2 hours after the hair loss drug has finished infusing. Depending on where you are being treated, some hospitals are not always that forthcoming about CC availability, mainly because chemo nurses can be very stretched at the best of times and the CC does mean more pressure on often limited NHS resources. If you are being treated on NHS that is. To reassure you though I am NHS and my treatment, including CC, has been first class.
I hope you will be a lucky with SE’s of your chemo, mine have been limited to the first 5 or so days, then I just get more exhausted than usual but no other SE’s to speak of. You will find it is do-able, liKe you, I was really scared initially about having chemo, but decided to do everything I possibly could to try to Prevent a recurrence. I personally think your decision to accept chemo is the right one.
Also just to add,as some of the other girls have said, it’s important to know what your treatment regieme will be - not all chemo causes hair loss. But it sounds as if you may be put on FEC as from what you say you treatment will be for adjuvant BC ( where it has not spread into the lymph nodes) and FEC does cause hair loss. So the CC could be the answer for you! Whatever you decide, the very best of luck with your treatment. I was so much better once treatment started, the hanging around waiting for treatment plan/ appointment etc. was the worst part. And I sure it will be the same for you. Good Luck! xxxx
This is a brilliant topic- thank you Martha- I have the mother of all lists in my handbag for my ONC nurse/doctor appt later today and I will be adding to it thanks to you. Still haven’t decided about cold cap but they first appointment is tomorrow and I am booked in for 3:30 pm so clearly they have taken the decision for me! BTW good luck for tomorrow yourself!
Hi Mejane
Thank you so much for your info on the CC - I will certainly look up your thread for more advice. I’ll keep my fingers crossed that they do. I know it’s hard, but I am determined so hopefully I’ll make it work.
Penny - I’m glad you are finding this useful too. I hope all goes well for your appointment. We have also started a chemo thread for anyone going through chemo in June, so please feel free to join us.
Take care
Martha xxx
Martha - I went into chemo kicking and screaming, and had a pretty awful time, but 6 weeks after FEC6 I’m now feeling absolutely fine, and am very glad that I did it. Even though its effectiveness is low, the extra percentage points on your survival probabilities are significant, but the most important thing is psychological - when you’ve done it, you know that if the cancer comes back you did try everything, and won’t have any regrets.
The cold cap worked brilliantly for me - I kept all my hair, and also my eyebrows and eyelashes. This is making it a lot easier to put chemo behind me now. The cold cap is pretty painful for the first ten minutes of every session, but it’s really worth doing if you can stand it.
Best of luck - xx
Seems to me it is the taxanes, i.e. Taxotere and Paclitaxel that make you lose lashes and brows …
I never used the cold cap but only truly lost my hair from the sides of my head… I shaved the rest cos it’d look silly! Now the hair that fell out on AC is slowly growing back, but any hair I didn’t lose on AC I seem to ne losing on Paclitaxel! Hmmmm … “_”
Thanks Cybele & Morweena
Well I’be just had a big debate with my OH. He was on the phone to his sister and she heard a something on the radio about people dying from infections whilst they were having chemo and because cancer was their primary ailment, the cause of death was put down to that. So now he is saying that he wants big margins before he is happy with it.
He is now really concerned with a low immune system. Grrrrr I hate my SIL sometimes! Just when I thought I’d won him round. Roll on tomorrow when I can get the chemo doc on my side
hugs
martha xxx
When I was going through chemo (I had 4 x EC and 4 x TAX) I took my temperature every day. An infection could see you being admitted into hospital as your immune system wouldn’t be able to cope. I spent 3 days in hospital on antibiotic drips 10 days after my first chemo.
It’s serious stuff. Be prepared. I had bottles of anti bacterial gel dotted all around the house. I avoided contact with the outside world during my second (lowest immunity) week. Having said that, I also made lots of plans to have fun during my third week.
Be prepared for your favourite food and drink to taste like poison - chemotherapy affects your taste buds and the sensitive linings of your mouth, stomach and bowels.
It’s good that you are being positive and up-beat about all of this - it is the best way to be. I hope all your SE are minimal. xx
I’ve actually got a good immune system and I’m more of a carrier than a taker, but when I’m ill, I’m really ill and my body shuts down for 24 hours.
In all honesty I hadn’t givethey immunity too much thought! I’ll add this to my list of questions tomorrow.
shares in antibacterial bottles at the ready lol xxx
When I was going through chemo they gave me a little red book - like a diary. They wrote in what drugs they had given me and I could write in how I felt. They also wrote in the results of the pre-chemo blood tests. My white cell count went from 7.2 to 0.001 within ten days of the first chemo. Low immunity is a big factor to consider. Doesn’t matter how good it is now - chemo is poison.
I do hope I haven’t frightened you. It is do-able as long as you understand the “rules”.
Deb x
Hi Deb
Thanks for the insight - It is rather scary when you take the immune system into consideration. With the kids & the rather hairy, forever molting Siberian husky, I don’t stand a chance lol.
Will see what tomorrow brings. I’ll keep you guys updated xxx
Martha I took my (ever-increasingly long) list into the ONC and although they managed to lose me twice (we were interrupted by the harmotologist and then the ONC saw me) The nurse answered most of my questions- the ONC answered the obscure ones. Much of what was said by nurse was repeating what I have learned here on these boards but for OH it was all a revelation. And the nurse was attractive, caring, efficient and he took to her right away (what a flirt! These older men get away with murder sometimes!) so it was worth going just for that…they had some time on their own when I was lost so they had a little chin-wag about totally non-cancer stuff- men sometimes need this as well as the serious stuff. Hope your experience is as great as mine! I think I’ll go into greater detail about what I learned on May Moonbeams thread.
Hi Martha,
Your diagnosis is almost exactly the same as mine. I had 6 FEC chemo. Main side effect for me was nausea and sickness. My anti-sickness meds were changed after first chemo which at least stopped me being sick! I decided not to use cold cap and did lose hair,eyelashes and eyebrows! There are lots of really pretty bandanas and scarves which I ordered before I started chemo. I did wear wig when going out - very good one which matched my short hair-style and colour.
Chemo is not pleasant but now when I look back at it(2years ago) it was bearable and I am really glad I had it. I wanted to throw everything at it! My Oncologist strongly advised me to have chemo as I was Grade 3. My chemo. unit were amazing - the nurses and B.C.N. were fantastic and made the whole chemo. experience as bearable as they could.
Good luck for tomorrow. x
Well ladies - After a few tears and a lot of deep breaths, I finally said yes to the chemo doc. She was very, very pleased with my decision and said that it was the right way to go and if she was in my shoes, she would have done the same. I was kind of glad to hear that.
Cocktail - FEC x 6
Next steps are tomorrow I’m seeing the chemo nurses to get the full low down and a tour of the unit. Then on Friday I’ve to have an isotope x-ray for my heart…Here’s hoping it stands up to the test lol.
Chemo start date is the 29th May and then on the 30th (If I can make it) will be my wig fitting.
Although I’m starting on the 29th, I’m going to stay with the June Jewels as I’ve gotten to know them
Thank you so much to everyone for the advise, it has been an amazing help.
Penny - Hahaha, my doc was a little old and my OH was is only 33. He stuck to the bear facts and wanted to know all about %'s and stats lol
Jiggyjoo - Thank you and congratulations on getting to the other side. I’ve got a feeling I may become a little OCD with hygiene but I don’t think that’s a bad thing.
Hugs to everyone
Martha xxxx