June 2017 starters

[AliOG]

Hello ladies,

I'm about to go off to see another oncologist this afternoon just to get some more info before starting treatment at the end of the month. I know I should be asking about type of chemo, survival rates, side effects etc etc but all I really want to know is about hair dye, microblading and headscarves! (I'm trying to be jolly even though I'm terrified. I'm hoping humour might help me get through this!)

Hope you're all doing well today. I've heard there is a bit of heat wave on its way so if nothing else the sun shining should cheer us all up. x

[Tripletmum]

I am having Adriamycin and Cyclophauine (excuse the spelling) - 4 cycles 13 days apart. So aiming to get this part of my treatment done by end July! Have been researching headscarves/turbans and the Christine Headgear range look great fun - can be found much cheaper on websites that are not hers!!!!!

[Wandestrong]

Tripletmum and Jintz, what chemo regime are you having for the 4 cycles?

[Jintz]

Hi Triplemum,
Sounds very much like what I'm having. I start on Wednesday. I'm hoping it will be pretty smooth going so hope to have a good attitude as you seem to have.
All the best

[AliOG]

Thanks for the tip, Anniej. I might even give the colour a miss and go straight for the chop. I'll keep you posted! 

[Anniej]

Ali, love your positivity. Way to go! 😄.  Make sure you leave plenty of time between hair colouring and chemo. I was told that the two lots of chemicals don't mix well. 😡. Good luck on your journey. X

[Tripletmum]

So great to hear from you ladies. I start later this week and just want to get started really. V v pleased that is is doable so far. I need 4 cycles in total so figure this time next week I will be 25% through already!!!! I also need radiotherapy but am ignoring that until this stage is over - I am v much a 'one crisis at a time' person!!! So pleased we will all do this together xxx

[Daffodil54]

Thanks for all the positive posts. Tomorrow not so daunting now. Great to have this forum for support. 

[AliOG]

Dear All,

Thank you for your replies and reassurances. It really does help with the decision making process. To know that this treatment is doable and to do it alongside others is a huge support.

This morning I told my employer I'm going to have the treatment starting on 26 June and that I'll be off work until at least the new year. I'll have radiotherapy after chemo so this seems reasonable. I've already been off since mid March so I'm probably going to forget what work is like by the time I've finished!

I've also told my hairdresser that I'll need a super short cut and colour before the end of June. She's going to come to the house to save my tears in the salon. Ive already got short hair but the thought of losing it still terrifies me. I shall invest in colourful headscarves and wear them with pride.

This all sounds like I've made the decision, doesn't it? So I guess I'll be joining you on this crazy journey after all. Thanks for welcoming me to the group and fingers crossed for you all that today is a good day xx

[Abulafia]

Hi all.

I started chemo Saturday. All in all took about an hour. Got chatting to some lively ladies and the staff nurse was great.

Now on day 3. First night bit dizzy, but medication helps with side effects.

Each day have walked and eaten well. I take the dex with food, but was advised to take other anti sickness about 1/2 hour before.

Good points, my ibs symtoms are levelling - a good unintended consequence and the pain in my left breast has pretty much gone. The effect was immediate.

Using zopiclone to sleep at night, and diclofenac and paracetomol for any headaches and pain.

So far, very do-able.

[Wandestrong]

Hi Alice,

Glad to hear your lump was detected early and your surgery was successful. I'm glad you were able to have the oncotype test in helping to make your decision. I also had this, after being adamant I didn't need chemo. My SNB and margins were clear, 2.5cm ER+ HER2-, I was still going to have radiotherapy and hormonal therapy. I had a decision model prior to receiving the oncotype results... under 20 for me would be no chemo and over 20 would be chemo. My score came back at over 50, which made chemo a no-brainer in my case. With your score, I would have had the same dilemma as you. You already have a good prognosis so its a tough decision, but you need to silence the external voices and do what you think is best for you. If you do decide to go for Chemo, know although tough, it's very doable and only for a short period. Whatever you decide, you'll receive a lot of support on this forum.

Wande x

[Jjmabbatt]

Hi Alice, was just reading through your thread, and the dilemma you face. Good news that your tumour has been found early and you are now under the treatment umbrella. Whilst I did not have the option like yourself to have chemotherapy, like you I was incredibly nervous of the Unknown. Mine was a complete whirlwind I was diognosed on the Friday and started chemo the following Thursday.  I can't advise you on what to do, all I can say is chemo is totally doable, and nowhere near as bad as I thought. Yes you will have bad days, but you know what you have more good days, where you just carry on as normal. Only you can make that call, it's your body at the end of the day, but it's a very short period of time for chemo and does go very quickly. 

Julie 

[Jjmabbatt]

Morning all, I was just reading through some of the threads on here, as you do, I finished chemo in Jan, and I noticed a couple of you asking about hair. If you are on the FEC-T regime the FEC part is very severe on the hair follicle. I started to cold cap but was told that it's unlikely it will save my hair so I stopped. I get its different for everyone. Anyway my hair started to come out after day 11, and at that point I decided to get it shaved to a number 2.  I am really glad I did if I am honest, it was just one less thing to think about. I had really long thick hair. For all you amazing ladies starting on this journey, I found it really liberating to have it shaved, and there are some great wigs on eBay I found, I did buy several. It was great not having to worry about all that shaving legs, arm pits, and the good old lady garden. All I kept thinking is if my hair is falling out the Chemo is really doing the business. Anyway, just over 4 months on from finishing (I am on rads now), I have the best hair ever. Thick and soft and a good couple of inches. It really does grow back, and can be better than ever.

Julie

[AliOG]

Hello everybody,

I'm joining this thread very tentatively as although I have my first treatment appointment booked for the end of June I'm not entirely sure I'll have the bottle to attend it. 

I had WLE and SNB on April 24th. I have grade 2 invasive BC and a lump of 1.5 cm. It was detected early and completely by chance (I had some minimal pain which I thought was due to an ill fitting bra) and the diagnosis came as a massive shock. I'm 46 and have a 12 year old daughter. I got married last August and did not expect to spend my first year of married life like this!

My tumour got sent off to the US for oncotype testing and it came back with a score of 20 which puts me in the undecided category (story of my life!). This means it's a bit of a grey area whether chemo is of benefit and I have to make a decision on the treatment plan based on a set of statistics. In my case this means if I do nothing I have an 85% chance of survival in 10 years. If I have chemo, this improves by a further 8%. A lot of my friends (including my husband) don't think I should have it as the percentage improvement is relatively small. Others think it is a no brainer of a decision and I should do everything I can to hit this thing while I can. At the moment this is the camp I'm in but I don't mind admitting that I'm terrified of what this treatment is going to do to me and my family.

So, the appointment is booked and I'm googling manuka honey and headscarves like crazy. All of you are further down the line than me and have already experienced this period of fear and anxiety as we await treatment. I'm guessing no one enters this phase lightly or without trepidation but any advice or tips for keeping it under control would be most welcome. I think I'm building it up in my mind to be worse than (I hope) it is. 

Sorry for the the essay but wanted to give you my story in one go.

Having read your posts on here I know some of you are quite young with small children and I totally admire your ability to manage this journey whilst looking after your babies. Hopefully we will be able to support each other on here week by week (unless I buy myself a one way ticket to Rio before the date of my first appointment!).

Alice

[Jintz]

Hi ladies,
I start chemo on Wednesday as I have mentioned earlier but am wondering ........ should I shave my hair to a number 4 before starting ? I'd like some opinions please.
Good luck everyone and stay in touch.

[Daffodil54]

Hope all went well yesterday, Abulafia. For those of us starting this week, let's share our experiences. Good luck all.

[Lynhq27]

Hi ladies. I've been lurking around waiting for a June thread.

I had mastectomy in March and finally getting started with chemo (FEC-T) on Thursday. Part of me can't wait but partly dreading it more than the surgery.

Good luck to everyone, ' The end justifies the means' as they say 😉

Regards

Lyn

[Abulafia]

Nikki, thanks so much for all the advise.  Will take it all on board.  I am up early this morning.  First chemo session today.  Nervous but am hoping the drugs will lessen pain in right breast.  

Micro papilliary seems so rare but outlook nowadays regarded as same for invasive ductal.  My picc line came in handy for the mri biopsy on left breast and the staff were amazing. Just can't praise them enough.

Oh and the   picc line cover and some eyebrow pencil things came yesterday and the picc cover is so comfortable.   Pink! With a mesh for the picc area.

https://livebetterwith.com/products/picc-line-cover-multi-colour-2-pack/?gclid=CNz1g4jNstQCFcky0wod0...

I am sure there are cheaper elsewhere, so probably best to google around.

[Mai7]

Hi ladies, just wanted to wish you all the best for your chemo starting this month. I'm on the May 2017 starters and have just completed my 3rd FEC. We keep each other going really well and so will you guys. I'm coping really well. Just keep healthy and drink plenty of water - add cranberry juice on day 1-3 to help flush the bladder and avoid irritation.  Look after your skin and try and avoid any products with alcohol. There are many products to help with sore mouth: gengigel, biotene, manuka 29+ honey, Gelclair. Look after your bowels well ladies and get in some senokot and sudocreme or anusol and maybe fibogel.  Try and have regular walks if you can.

You can get through this. Stay strong and positive ladies but don't be afraid to have an off day now and then. Be kind to yourselves. 

Best wishes

Nikki. Xx

[Tripletmum]

Hi ladies. I am meeting my Oncologist on Monday to get my chemotherapy plan. I am still in such shock as I had not expected to have chemo but my Onctype DX result was high so here I am. Totally terrified but wanting to get started. Your threads are v v useful to help my preparations for Monday. Xxx

[Jintz]

Hello all,

I am a June starter too.

Had my Picc inserted today. A bit achy more than anything but might be psychological !

I start chemo on Wednesday and after reading a lot of these posts I think I am going to give the cold cap a miss. I think majority lose their hair anyway and I figure I can buy a wig or scarves.

Good luck to every one. I'm having treatment at Frimley Park so if anyone else is as well maybe we can have a coffee/tea ?

Regards

Jeanette

[Abulafia]

Clare, so far so good with the Picc line. Had a really good night's sleep with the help of a sleeping tablet.

It's the thought more than anything, but I have started to call it my little friend, and have bought a special pink arm cover recommended in the May starters.

[Abulafia]

Wandestrong, such a difficult journey, and so nice to chat with people who get it.

Sara Maria, the anti anxiety tablet really helps. Takes slightly longer to kick in on a full stomach, but was advised about an hour before.

All kind thoughts and best wishes to everyone here and their families. x

[Wandestrong]

All the best for today. It must have been tough psychologically having to go through pain of the first attempt. I had my first session last week Thursday (FEC) and after a few days of feeling rough, I'm back to strength and now just want to get on with the next one so I'm a step closer to finishing the course. Make sure you take any medication given and keep a note of side effects that you can preempt.

Positive thoughts x

[Sara Maria]

Hi Ladies - thanks for your responses. Your feedback is so appreciated. 

I have decided to drop the cold cap. It was far too taxing and I don't think my body can take it. 

Abulafia - I may also take an anti- anxiety pill, got some too. As you say, let's give both body and mind a bit of a break. 

Hugs go to all and take care through your journeys!

[Clare01]

Had my appointment today with the oncologist at christies about my chemotheopry with having her2 positive breast cancer. I can either have 6 sessions of chemo at a really strong dose every three weeks or 12 sessions at a not as strong once a week for 12 weeks, I have gone for that one as it's still the same drug but won't be as harsh all in one go and less chance of their being any long term health issues. I've asked to have a line put in as I don't want a canuler every week x

[Abulafia]

Hi Sara Maria,

I decided against the cold cap. I hear it has mixed results and extends time needed. I hope you have a better experience next time and keep ahead of the side effects.

I had a PICC line put in today and can honestly say that despite being anxious, I relaxed, closed my eyes and am now comfortable back home.

I have an MRI guided biopsy tomorrow, and have been given anti anxiety medication. I woyld have taken it today also had this been a scheduled appointment.

I figure the brain and the body need soothing.

The nurse gave me all the pills I need for chemo Saturday, and it was relieving to learn I can phone them anywhere in thw country, and they will ensure I get medication if I need it.

All in,all exhausted but good day.

[Daffodil54]

Welcome. Hope Friday goes better. Not sure about trying cold cap but had very short hair cut today.

[Sara Maria]

Hello Ladies,

i am another June starter. Great to meet you all on this forum!

Attempted my first chemo today but had a lot of pain in a recently fitted port so they had to stop and we are trying again on Friday. I tried the cold cap and was perfectly fine for 2 hours. Then suddenly had a very bad reaction - nausea, pain, dizziness, blurred vision and also feeling confused.....I don't think I will go back.

has anyone else had similar experiences?

[Daffodil54]

Thanks. Good to hear what to expect. Now I feel ready for Tuesday. 

[Skells]

Good luck for the appointment. Triple negative options are getting better all the time. As are all the cancer treatment options. Xxx

[Abulafia]

I know what you mean about wanting to get on with it. x

[Abulafia]

I am with you on that daffodil. x Hugs.

[Daffodil54]

Meeting the chemo team this afternoon. Triple negative, so chemo, surgery and maybe RT. Long road ahead. A bit apprehensive. 

[Abulafia]

I love the Churchill. They have been so supportive. Mine is Micropapiliary with inflammatory aspects which is why Chemo first port of call. Her. neg and p an e positive.

No node involvement and no secondaries, so feeling cautiously optimistic.

Saw a lady in waiting room who was proud to be bald, and thought she looked amazing.

[Skells]

Hi Abulafia, I'm also at Churchill in Oxford. I've got the same cycle too, 3 lots of fec then 3 fec-t. I'm also doing chemo first then surgery then radiotherapy. It's good to have something to focus on. Keeps those positive thoughts flowing.

I've found churchill to be a great hospital. The staff have been really good and supportive. I hope you find it the same

[Abulafia]

Hi ladies. 

I start FEC 3 lots, this coming Saturday, then 3 lots of T. 18 weeks in all.

They need to do an mri guided biopsy on left breast, day before, and I think I am having PICC line installed tomorrow.

Obviously stressful time, but keep seeing my son graduating in 3 years time in my head, and picture myself healthy even if flat chested.

I am 56, but all this is still so new.  I am starting with chemo first, then surgery, then radiotherapy, so I guess they are giving it all they have got.

I am attending Churchill in Oxford so might actually pass someone here without knowing!

Anyway.  Was very comforting to read through this,thread and appreciate not feeling alone. xx

[Skells]

Hi Clare, Welcome to the group. I hope the appointment goes well on Thursday. I found it helpful to write everything down as there is so much information to take in.

The wait for chemo to start is very hard. It's difficult to know how you will react to the side effects. I hope you don't have too long a wait between the oncologist and starting chemo.

Xxx

[Clare01]

Hi I'm waiting to see when my treatment starts I go and see the oncologist Thursday morning, I need to take herceptin with it. I have been so strong upto now though my surgery I think this will be the worst part of it all, very apprehensive x

[Skells]

Good luck with the cut. Great idea to prepare. I found the wait before treatment the worst bit. Hopefully you'll feel better about it once you get going.

I was advised against the cap as it doesn't work well with my treatment. I've also heard it's a bit painful.

Xxx

[Daffodil54]

Will have a short cut this week before chemo. Still undecided about ice cap. A bit apprehensive now but eager to start treatment.

[Skells]

Thanks for the info. Just day 3 for me so sounds like a little time before it starts to fall out. I had it cut short before treatment started. I will probably shave it all off as soon as I start losing it.

I'm feeling very tired today. Lots of napping much to my daughter's disgust. She keeps saying "get up mummy!" I'm hoping to have more energy tomorrow.

[busybeeS]

Hi Skells. I'm from the May 2017 starters, so having my 3rd FEC next week. I keep a diary just to record how I'm feeling and what (if any) SEs I have. My hair starting falling out about day 17 and was pretty much gone within a week, although I still have a covering of very thin hair. I shaved it v short before I started chemo which helped. I'm on day 13 of my 2nd cycle - so waiting to see if the remainder falls out on day 17 again as I'm told with each cycle there seems to be a pattern to SEs.
Hope it all goes well for everyone starting this month.

[Skells]

I think I'm exactly the same. Usually healthy which is part of the reason why I didn't think about taking the meds and partly thinking I'd be OK without them. Until you start you don't know how you'll react because everyone is different.

Glad you're feeling a bit better now.

Have you had any hair thinning? I think you started a couple of days ahead of me. I haven't had any yet but don't know when it's meant to start. Did you have the cool cap treatment? I didn't. I was advised it workshop work week with my chemo schedule so I didn't bother.

Take care all and strong.

[Wandestrong]

I'm feeling better this afternoon. I think I was abit too optimistic in thinking the first cycle wouldn't affect me the slightest as I'm someone that hardly gets ill or takes medication, but it's just the body adjusting, hopefully it's all settled now. It's tough thinking about going through it all again in a couple of weeks, but i know it's a temporary sacrifice for a long and healthy life for us all. This too shall pass! Hope you're feeling better with your medication now Skells? Positive thoughts to you and everyone about to start x

[Argymargy]

Hi Skells just thought I would mention an app that I use to remind me to take my pills.  I've had so many drugs, all starting and finishing on different days and needing different dosing times, with or without food etc.  Chemo brain doesn't help!  The app is free and it's called Medisafe.  If you're the kind of person who has their phone on them most of the time it's brilliant.  Although it's no help if you've gone out for the day and forgotten to take the pills with you!  Hope you're feeling better.

[Skells]

Hi daffodil, great to hear from you. I hope the consultant appointment goes well. I found it really useful to write everything down because there's so much information coming at you.

Hugs

[Daffodil54]

Hi. I am due to start my chemotherapy on 13th. Fec-T regime. I am going for my first meeting with the chemo team on Wednesday so will hopefully get a better idea of what to expect. Picc line only due before second cycle. Will keep up with the advice and feedback on here and try to remain positive. Having hair cut short this week in preparation.

Sorry to hear about other starters with babies. I am older so feel for the extra burden you are carrying. Love to all.

[Skells]

Dede, I understand about breastfeeding being important. I've found it hard to wean Katherine at 2 years so it must be harder for you at 1 month! It's good your GP was on the ball and recognised it was something more serious.

I'm glad your mil is there to help once dh goes back to work.

I'm based in Oxford and just a couple of miles from the hospital which is really handy. My first lot of treatments are on Saturday which is really handy for work and having a near empty car park. I'm hoping to be able to work through treatment. Especially at the start when I've got more energy. I've heard that as I get towards the last cycle it will be harder with fatigue. My work have been good and are happy for me to work when I'm well enough. That's a big relief.

[Skells]

Thanks Rosie, I'm trying to focus on the positives and think that when my girl turns 3 I should be fit and well again. She's keeping me going.

I was feeling really sick yesterday so wasn't up to posting on this thread. I forgot to take my pills at lunchtime so by the time I took them I was starting to feel really bad. I phoned the triage line and got advice about which pills to take but I was still vomiting last night and then up at 2 this morning unable to sleep. Today I've been better with taking my pills.

Has your sickness calmed down now Dede? Hope you're feeling a bit better today too.