Anyone want to be my chemo buddy? Start may 9th

[Flower2016]

Hello chemo buddies! 

Well I have returned from having a look at wigs. I was adament until a few days ago re hats as didn't like the idea, but decided to have a look. Imagined it would be upsetting etc, but actually tried on 2 and the 2 nd one was great.....exactly the same colour as mine which is long but stylish bob.... Not wiggy at all. So much happier re this side of things. Will have a pixie crop at weekend and then wear it from that point so looks like I have had a hair cut. Just thought I would let you know not half as bad as I imagined.....x

[Kim555pink]

Tina - having last one today assuming my bloods are OK!!! Had first one 18 Jan.
My top tip is drink 2L of water the day before, day of and day after chemo then as much as you possibly can while you're having side effects.
Take it easy when you're feeling cr&ppy - physically and mentally. Don't expect too much of yourself - stopping in bed or on the sofa for a couple of days is fine.
Always ring your chemo 24hr helpline for advice when you're worried about symptoms you're having - that's what they're there for, I did it a couple of times.
Buy a thermometer as you'll need to check your temperature regularly - I was recommended the Braun ear one which I got from Amazon
Keep a diary of any side effects you're having each day so you can anticipate them the next cycle and also tell your chemo nurse and/or oncologist exactly how you've been.
Don't suffer the side effects unnecessarily - there's usually something they can prescribe to ease your symptoms and on occasions they can reduce your dose if they think that's the problem (don't worry about this - they know what they're doing!)
And last of all - you will have good weeks throughout, plan things to look forward to no matter how small.
You CAN do this, you DO get to the light at the end of the tunnel!
Lots of love xxx

[Jobey68]

Tina I asked about having my ovaries removed as my BC was ER + 8/8 and to me it made perfect sense to get rid of them but oncologist said it wouldn't make much difference as we also produce oestrogen in fat and muscle! You learn something new every day 😉  

[Guest user]

When did you start?
Ok....top tips are.....?

[Kim555pink]

Haha! After this many months of chemotherapy my attention span is shot to pieces, so my posts are rambling and take for ever to write!
Ask away! No question is daft!!
Xxx

[Guest user]

Hi Kim. You'll get used to me, i ask many daft questions, but no one makes me feel stupid, km starting to think im going to be on here a lot over the coming months (gulp!,) xx

[Kim555pink]

Took me so long to write that I didn't notice Flowers post! Yes and to zap any stray cells too 🙂
Xxx

[Kim555pink]

I think that your having chemotherapy because if you had just one of the 3 things you mentioned they'd recommend it. Radiotherapy does a different job from what I understand - zaps the area to reduce reoccurrence to the operation area. I'm sure if I'm wrong someone will explain! I am ER+ so having hormone treatment as well.
Xxx

[Guest user]

Oh ok xxx

[Flower2016]

Chemo is to treat whole body with chemical flush and radiotherapy is localised to kill any cells that may remain in chest.....

[Guest user]

Next potentially stupid question. ..im having to get chemo because my cancer was grade3 so "potential " of some escaped cells right? Even though its all been removed plus clear nodes. Its a "prevention "(that has no guarantees ),oncologists words. So is radiotherapy going to do the same job afterwards? Apologies in advance! Or is it because its er and  her2 positive too? Xx

[Guest user]

 Yes, let us know what your oncologist says. Whats the injection she said id have to give myself further down the line....i couldn't take it all in or make notes, nor could my daughter. And is there a thigh injection or have i dreamt  it? Im having weird dreams! X

[Flower2016]

Plan for me is tamoxifen for 10 years and "likely lifelong."

[Flower2016]

From what I can gather having ovaries removed produces harsher immadiate menopause with more risk of osteoporosis, but I will ge asking this question myself as 100% ER. 

[Charys]

You know what Tina, that is exactly the question I want to ask my oncologist tomorrow afternoon! I think from my own research that they used to do that in times gone by, but now there is some injection or other that stops the ovaries from working. I'll let you know what mine says. 

[Guest user]

Hi

Well id never ever heard of it! Hope your meeting goes well.

Does anyone know. ....if ive been told its oestrogen  receptive too, couldn't  i just  get my ovaries  removed? Is that a stupid question? X

[Wosteart]

I am seeing my oncologist for the 1st time on Thursday i will ask about any trials...i work in pharmacy and many years ago when i worked in chemo the herceptin was just a trial and now look at it....i never would have thought i would end up having it....😔

[Guest user]

Hi

I asked  my oncologist  about trials and she said there was  nothing out there  for  me  x

[Charys]

Yea, I've just read it Tina, BBC front page, top news. Exciting times ahead in terms of treatment developments I hope. X

On this theme, anybody here actually invovled with any trials related to gene therapy?

[Guest user]

Hi

I bet its not possible to delete the other may thread is it? 

Has anyone seen the news tonight  regarding  breast cancer? Xx

[Flower2016]

We are all scared but take all the tips you can from this forum. It makes you feel more prepared. I don't know what is coming for me with 6 x TAC but I am going to try and do my best with it. This time next week I will be on part 2 and getting on with it will be better than sitting around fearing it for me. I will have to find (again) my inner warrior. It is like some cr##py endurance test and largely an isolating experience. Olivia Newton John talked about how she imagined a river of gold going into her with chemo! Not sure I will manage that. x

[LMB212]

Good advice Kim thanks. Lou x

[Guest user]

Hello ladies

I start 20th may.  Scared doesn't  come close x

[GeriF]

Hi Kim, thank you for dropping by to give us newbies some helpful tips. I will also be on FEC-T so it was very interesting to read of your personal experience.
Hi Mary & Isabelle. Look forward to getting to know you both over the coming months. Xx

[Kim555pink]

Hi everyone, from the January thread - just taken my steroids ready for my last dose of chemo tomorrow and have started in my first bottle of water of the day - big tip, try to drink 2L of water the day before, day of and day after chemo and then as much as you can manage after that! I have just copied this from the other May thread as I see there is 2, so apologies to those of you who read both!
I've been on FEC-T and I'm in the minority because I actually preferred the T part to the FEC!! I'm just not good with feeling sick and dizzy but can tolerate pain (well up to a point!)
For FEC I was given Emend to take the morning of chemo and 2 days after (I think it was a further 2 days) and 2 other antisickness meds, one of which was a steroid. I had no actual sickness, just felt dizzy and hungover. I had another antisickness tablet to take if needed, but never did. I generally pottered around the house doing not much in particular for the first few days but stayed in bed or on the sofa if I really didn't feel up to it. After 7 days I felt much better but as your immune system is at its lowest then, I generally stayed in but had a few days or evenings out with friends as long as I avoided anyone who wasn't well!! By day 14 I felt I could function normally and by the end of that week seemed to concentrate getting the house clean and tidy, washing and ironing up to date and filling the freezer with chilli, Bolegnese sauces and shepherds pie bases to make life easier when I wasn't up to cooking.
My cupboards are full of snacks - nuts, cereal bars, ritz crackers, biscuits etc - anything I think I will fancy eating at short notice with minimum effort! At night I have a snack box with ritz crackers in it!! Healthy eating is best, but honestly sometimes you just have to eat cr@p to satisfy your cravings and get through it!! I'll get back to healthy eating again in a few weeks time when it's all over!
Loads of good luck to you all - you CAN do this! It is scary to think about but once you've started you do deal with it and you do have days when you feel human again! Drop into the other threads for advise (or a good rant!) I imagine our Jan thread will be quieter than usual as we are finishing and going into radiotherapy etc, but we are a friendly bunch and will definitely be happy to give you our words of wisdom!!
Kim xxx

[On a diversion]

Hi Tracy,

Hiya! 

Isabelle xx

[On a diversion]

Hi Mary,

Thank you so much for your reply and for sharing. I am feeling so, so lonely and scared, I can't even put my feelings into words but I read all these posts about how other people are feeling and realise I am not alone.  Is the weight gain due to steroids or due to being thrown into menopause or just a general side effect ? 

I hope the rest of the time on chemo goes quickly for you. 

Again, thank you so much for replying, love Isabelle xxx

[Platinum]

Hi,

I think I am on weekly Taxol because tumour is stage I/II, ie early stages and it was thought that the lower dose of Taxol would be well tolerated as it's every week for 12 weeks.  I've just gone back to the notes that were taken at the time (my sister has been with me for every  medical appointment, writing stuff down for me) and can see:  "20mm tumour pls 4  nodes removed - good, Grade 3 - aggressive, bad!" Also, the pathology report showed the tumour had spread to lymph tissues though not lymph nodes. Breast Cancer nurse continues to remind me that every case is different, and that the same diagnosis may have different treatment.  Having had 8 cycles I am getting used to the routine of blood tests on Wednesdays, chemo on Fridays  and am starting to recognise some of the "regulars" who are on 3 or 4 week cycles. I just want it done.  I'm really feeling the cumulative effects now, particularly fatigue and get one or 2 good days before cycle starts again.  I've put on nearly a stone, which I hate, however I make sure I wear the fitbit (or unfit bit in my case) to try and walk more on the days I feel better.

Every case is different, and the most important one is "yours" so look after yourselves, ladies, love & luck to you all.

Mary xx

[GeriF]

Hi tracy & flower, lovely to meet you both. It's nice to know there are others feeling the same & facing the same challenge. Looking forward to getting to know you both & support you along the way xx

[Flower2016]

Hi

Sure you can. Welcome. All in it together xx

[Wosteart]

Hi can i join your group please i also start on may 9th tracy xxx

[On a diversion]

Hi Geraldine, Great to meet you! But I so wish the circumstances were different ... I think we're all feeling similar, but will be good to have the support of each other, so that's three of us starting the 9th ... xxxx

[GeriF]

Hi Flower,

That's great ...  I'm so grateful for this site and having the opportunity meet other ladies experiencing the same feelings.

I'm on FEC-T x 6 followed by 15 rads. 

Geraldine x

[Flower2016]

Hey Geraldine, you are in! What regime are you on? It really is a pile of s##t isn't it.....we will support each other through xx

[GeriF]

Hi ladies,

I'd love to be a chemo buddy as I also start on the 9th May.

The closer it gets, the more anxious I'm feeling. I'm usually a really strong person and most of the time I can put on my positive hat but this whole diagnosis has floored me. 

I'm 51 and was diagnosed with triple negative in Feb. Had a WLE in March where they removed a 30mm tumour and 26 nodes, 5 of which were affected. Margins were clear.

It's all been a rollercoaster of emotions as cancer does not run in my family. I had a CT scan last week and booked for a bone scan next. My oncologist has also suggested tested me for the BRCA-1 gene and if positive putting me forward to take part in a clinical trial. My head is all over the place waiting for results and trying to accept my current situation at the same time. 

Would love some support and help support others along the way.

Geraldine

[Flower2016]

Thank you Mary. I am preparing in little ways......got ginger cordial and ginger tea and ginger  biccies!, prunes, thermometer, notebook for symptoms and temperatures, trying on scarfs to practise for around the house, booked wig appointment just to have a look.....

I was a bit angry inside when I asked onc what I could do to try and get best future outcome for me.....apparently there was nothing. I asked re vit D but not interested even though had level checked at GP in preparation.  I already know re the brisk walks for 30 mins and have been doing but not even mentioned. Surely they should give you some things to feel you are helping and working to get best outcome together. X

[On a diversion]

Hi Mary,

Thanks for your post.  I was just wondering if you know why you are having weekly taxol as opposed to FEC or FEC T as your diagnosis is the same as mine! 

X

[Platinum]

Hi Flower and other May starters,

Just dropping in from Marcch 2016 starters to wish you all well. 

My circumstances slightley different to yours - HER2 positive, stage I/II grade 3 so have had lumpectomy, 8 out of 12 cycles weekly taxol and have cold capped, hair a bit thinner & finer but still there. Another month of chemo to go.  Herceptin injections are every 3 weeks, and I have radiotherapy "with boost" to come after the chemo.  Hospital where I have the chemo has excellent Macmillan Centre which offers counselling, aromatherapy, relaxation, make up etc. The counselling has helped me come to terms with fact I have been off work since Jan 4th (day before dianosis) and will likly be off until Jan 2017.  I am a teacher in a special school but feel totally disconnected to it as my life now is weekly blood tests & chemo; next it will be daily radiotherapy,

Sorry to hear you have negative oncologist, use the forum to get questions you can ask as well as all the support you need.

Take care of yourselves,

Mary xx

[On a diversion]

Sure,  I have had breast conserving surgery and auxiliary node biopsy. I have had two ops in the last few weeks and am still very sore from the second op two and half weeks ago because my nerves were affected.    My lump contained DCIS and grade 3, HER+, ER- and the plan as far as I am aware is to start with FEC, then herceptin and radiotherapy xxx. 

I was was just looking at booking a spa weekend for when it finishes then realised I probably can't go due to the treatment so will have to think of another treat!! X

[Flower2016]

Do you mind saying any more re your diagnosis and chemo regime planned? Ok if not...I was very scared re the surgery too but in reality it was ok really and I have bounced back really well. Never had so much as an grumbling appendix or anything pre this so starting pretty major. X

[On a diversion]

Hi Flower,

I feel very similar.  I have curly shoulder length hair and I know it will come as a shock even to see myself with short hair, let alone no hair.  I keep wondering about cold capping but I don't want to spend more time at the hospital than necessary. I'm sure we'll get through somehow even if we have our wobbles.  Good to have someone starting the same day 😊 XXXX 

[Flower2016]

Hi

We can stick with this one maybe. I have random crying episodes re this and the whole damn lot. I am so into healthy eating and living that to fill my body with this goes against everything.......however not stupid enough not to do it and rely on a few berries and some flaxseed! We will get there together literally.....i will get hair cut this coming week and looking at wigs on tuesday but just not sure about it x

[On a diversion]

Hi Flower,

Oh good 🙂

I notice there are now sort of two May starter threads! Shall we stick with this one? 

I am starting the same day as you and coping one moment/panicking inside the next but putting on a brave  face for my family and friends ...

Planning to have my hair cut this week in preparation 😞 

xxx

[rosie14]

Mind over matter positive thoughts and you will overcome this illness! I am from April 14 also and had chemo then mastectomy followed by radiotherapy and her herceptin! Most unpleasant at the time but now 2 years on and still alive! Good luck and use this forum for support - we have all been on the journey or are en route! Live for each day!😌

[Flower2016]

I am normally a confident person but this has really knocked the stuffing out of me. I am anxious now most of the time. I have recovered well from mastectomy and start chemo earlier (4 weeks) due to this. I did not get offered immediate reconstruction but am ok with it currently cosmetically. It is the thought of rogue cells which I cannot bear. The oncology appointment was so negative that I dread going again. I am aware this is a serious situation and terrfying me was of no benefit. My surgeon said oncologists tend to be jaded and negative due to the fact they tend to generally see people not doing well, and not all the women out enjoying life again. I prefer her more optimistic approach. X

[LMB212]

Hi Flower I started chemo Wednesday so just got in April starters . I did cold cap and I got through it for me it was more like pressure on and around my head rather than a feeling of cold. I am having FEC T x6 round 2 for me 18th May. I was sick when I got home and felt tired and headachy. I woke up yesterday feeling normal took my daughter to school and worked from home. I took a holiday today as hubby off getting sorted for a football tournament for our son. He is our middle child. So I thought won't get any work done when he is pottering and have had a lazy day. I have been more tired today. But so far all manageable. My cancer was IDC grade 3 . I had lumpectomy and SNB didn't get clear margins so then had skin saving mastectomy with immediate implant. Really pleased with my surgery results just need the other side marching up. You will get through this and find amazing support on her. Lou x

[Guest user]

I start  20th May xx

[Flower2016]

Hello

Yes please! Are you starting then too? 

[On a diversion]

Hi Flower,

I'd like to be your chemo buddy please,

xxx

[Bibi44]

Hi Flower That sounds a really horrible experience, you poor thing. I'm sure we would all feel pretty upset to hear that. Good to hear some of the doctors were not too concerned & you should take heart from that. I was told FEC-T & TAC are hard on the hair & loss of hair is almost inevitable, but decided to give it a go anyway. I took some painkillers an hour before & the cap didn't bother me that much to be honest. I did lose quite a lot, but it was mainly thinning all over. I personally preferred to see myself in the mirror having a really bad hair day, rather than being bald. We're all different & most of the ladies who didn't cold cap said it was upsetting when it went, but they got used to it pretty quickly. Worth a try perhaps? I know it's so hard for you, but once you get going you will feel a bit stronger. Take care of yourself & sorry to hear of your diagnosis. xx