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Original poster

Tamoxigang cancer support thread 54: A new thread for a new year!

982 replies

WhatWouldLeslieKnopeDo · 21/12/2015 21:27

Welcome one and all to the wonderful Tamoxigang thread! May 2016 bring us all health and happiness Star

If you are new here, then an extra big welcome to the club nobody wants to join. The thread is for people with any type of cancer, and also those who are waiting for results. So don't be shy. We are more than happy to hold your hand while you are waiting for a diagnosis, and we will be here to celebrate or commiserate, whatever your news Flowers

No question is too big or too small, someone will usually have an answer, or an idea of where you might find one. You can laugh, cry, shout, swear, and, of course, eat chocolate Chocolate it is a bit of a safe haven from the mad world of cancer, the head-tilting and talk of bravery, and all the nonsense that comes with this diagnosis :)

So feel free to introduce yourself. And oldies, feel free to re-introduce yourself if you'd like.

We only have one rule here and that is no Googling!

OP posts:
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BooksAsGarden · 05/01/2016 22:06

Marshy thanks very much for your offer. Too worried about ruptured implants to go down that route.
Just wondering if a big scar on the front would be more or less annoying than on my back?

Marshy · 05/01/2016 22:27

I am fairly prone to worrying, as anyone who knows me on this threat will confirm Grin, but I can safely say that I have never given more than a passing thought to my implants rupturing.

I do recall my surgeon saying this had only ever happened to one of her patients and that person had been involved in a car accident and had injuries to the ribcage. There may be many reasons for not having implants but for me that wasn't one of them.

Marshy · 05/01/2016 22:34

I have scars similar to what you would have if you had had a breast reduction - anchor shaped ie semicircular scar under the breast in the crease against the chest wall with an upwards scar from the centre of the semi circle up to where the nipple would be. They are quite silvery and faint now.

SleepyForest · 06/01/2016 00:14

Thanks for the support people.

They couldn't find the results because the PET scan is contracted out and the other company didn't report it through the normal NHS system so they had to look in a different place on the network. Doh!

I don't want to come over like a drama llama but it has been one of those days.

royalmama · 06/01/2016 02:58

sleepy so sorry you had to put uo with all that ( the news about your lungs is great though!) and I hope anything offered to you will be good and effective in treating those "rude"( to quote amber!) mets.
May I ask anybody in general here: Is pain in the leg or hip or back etc any indication of there possibky being a spread to that area for people who have cancer?
I hope you lovely ladies all have a great day ahead( i am sleepless and restless and fed up of trying to sleep)

Boobz · 06/01/2016 08:20

Thanks for the conditioner reco Lily!

Summer - paclitaxel itself was fine (but does make you go a bit loopy), it was when it was combined with Carboplatin (every 3 week) that it made me feel a bit woozy. I was also having to fly to the UK from Rome every week for the chemo so I think it was the commuting more than the drugs that were tiring! I'm not sure if paclitaxel is short for Tax...

My cold capping journey was strange. I was absolutely fine with if for the first 4 EC, and on my first tax, but then on the second tax, I just sobbed as I didn't want the brain freeze. I later realised this was the chemo making me a bit mental rather than anything else, but the cold capping suddenly became a real pain and I really hated it. However I stuck it out and as I said above, I kept most of my hair right until the very end, so I looked well all through 24 weeks of chemo and no one knew I had cancer unless I told them, which I think was worth the brain freeze! But now my hair looks so silly, I am starting to wonder if I would do it a second time.... (probably would, I dunno)....

Lilymaid · 06/01/2016 08:38

Royal I had intense pain in my pelvis a few months before I was diagnosed with secondary breast cancer in my bones - lesion in pelvis. The pain didn't go away completely until I started chemo. But i had similar pain three years before so whether or not it was linked I don't know. My Onc occasionally runs his hand down my spine to see if I have any pain there - none so far.
I've got my next CT scan next Tuesday so am getting scanxiety! Results next Friday together with plan for next treatments as current chemo hasn't been sufficiently effective.

Original poster
WhatWouldLeslieKnopeDo · 06/01/2016 08:43

Sleepy you're not a drama llama at all, I think that would have been too much for anyone. I hope today is a little better. Pretty shit that they don't have a better arrangement for the scans, either to have them sent to the same place or they should make sure everyone knows where to look. It's really not fair that you were put through all of that additional stress Angry

royal yes, pain can be an indication of spread so always worth mentioning to your team. But there are so many other possible causes too.

Good morning all.

OP posts:
BooksAsGarden · 06/01/2016 08:48

Sleepy I think we need to be "drama lamas". My GP told me it was to big to be serious?!?
I am really glad to read how much you pushed them for your results - and it worked. Good for all of us here to know.

Marshy thanks! I think I will bombard the surgeon with questions next week. He will be used to it... Wink

SleepyForest · 06/01/2016 08:58

I cold capped all the way through EC and taxotere last time. I kept about 60% of my hair where the cold cap touched which helped my children cope at the time (they were 2 and 6 back then). I did hate it towards the end - it gave me a nasty headache- but it was worth it to me.

For my next treatment I have been offered
Exemestane
Fulvestrant
Densosumab
Capcitabene
zometer
Radiotherapy
Some biological agent no longer available from the nhs.

I am supposed to choose among the above. my oncologist asks which I would like. I ask which will work best for longest. He shrugs.

The trial is fulvestrant with a biological control in addition (or not if you are the placebo group). It is an intramuscular injection administered slowly into each buttock every three weeks. I think this has a certain dark humour.

My mum is driving over from 2hrs away this morning to give me a hug. I hate making her cry.

Lilymaid · 06/01/2016 09:28

Sleepy
FWIW I have tried
Exemestane - hormonal aromatise treatment. Daily tablet. I Didn't work for me but neither did other hormonal treatments. Gave me terrible leg aches, tiredness and made me feel about 90. But you can travel abroad on it as it isn't chemo!
Denusunab - 4 weekly injection I have had since diagnosis of bone mets. Seems to work and no SEs.
Capecitabine - oral chemo by tablets taken in three weekly cycle, two weeks on, one week off. Has been effective in keeping TMs down for a period. Main SE for me was extremely dry hands and feet (Plantar Palmar) - feet especially, so you need to moisturise them as much as possible.
Haven't had any of the rest as yet - my Onc is working through all existing chemos that might work then may go for trial treatments, so he has suggested Vinelrubin ( Sp?) or Carboplatin next.

lozwil · 06/01/2016 10:51

Shit all bloods normal apart from inflammation markers so need to have more bloods done as there is something wrong somewhere at least I know I am not going mad that there is something wrong but no further forward in knowing what can't stop crying scared I have cancer

StayGold · 06/01/2016 10:53

Sleepy thinking of you, must be so much for you to think about, then to throw all these options at you! Nice to see the experts are on hand though as usual to help you out. Smile Imagine your mum needs a big hug too and a cry is always good, clears the cobwebs and give you the boost you need to carry on which you will.. because we do Flowers.

Boobz sorry spelled your name wrong yesterday, was just getting over my initial brain freeze from cold cap (last one yay!) and didn't check spelling! No 5 was the worse one for me, i think as have less hair it really felt cold, no way to describe the pain, deep breathing helped loads this time and the thought that i wouldn't have to again prolly, I'm with you, not sure if i'd do it again, maybe you should visit Toni and Guy have heard good things about them and Philip Kingsley, I've used their no perfume, colour etc shampoo and conditioner through out which was endorsed by the look good feel good peeps. Was great and haven't gone off it as it has no fragrance.

Thinking of all on here, tis such a long journey feel like it will never end, but hope so xx

lozwil Fingers crossed for you, hopefully you'll get answers soon Flowers

Summersunandflowers · 06/01/2016 15:42

PET scan clear- a big relief. Pre chemo meeting with nurse tomorrow.
Boobz and Amber thanks for all of the chemo info. Still undecided about cold cap, think I'll try it in the first session and then decide.
Lily- hope your CT scan goes well next Tuesday and that the wait for results isn't too difficult.
Sleepy hope you are feeling s bit better today and that you are enjoying seeing your mum. It sounds like you have a good range of options xx

lozwil · 06/01/2016 15:56

Good news summer, my next lot of bloods done one week to wait, I am not god at waiting

Hope everyone else is well x x

Summersunandflowers · 06/01/2016 16:04

Nor am I Loz! I tend to eat a lot of chocolate to try and disract myself. Hope the blood test has positive results xx

happygoluckylady · 06/01/2016 16:43

Hi all, can I join in? Diagnosed with Grade 3/Stage 3 breast cancer in September. Huge shock and still digesting it to be honest. Things moved really quickly and I have just completed seven cycles of chemo, with one more to go. Will likely have surgery end of February and then radiotherapy. So still quite a road to go yet. Look forward to chatting. x

Lilymaid · 06/01/2016 16:48

Welcome Happy. I hope the chemo fitted in with Christmas/New Year. Lots of friendly people here with varying experience.

happygoluckylady · 06/01/2016 16:52

Thanks Lilymaid. Oh it was tough! I had round six on 22nd December so side effects slammed in on Christmas Day.

Had chemo yesterday and weirdly (and disappointingly) leg aches are already kicking in. Hope that means they don't last as long.

mumto2andnomore · 06/01/2016 18:39

Welcome Happy though sorry you have to be here, glad you are nearly at the end of chemo as I found that's the hardest part. Surgery and rads were easy in comparison

amberlight · 06/01/2016 19:14

Happy, sad you're here, but good that you have found splendid people here to chat to. Hoping the leg aches go soon.

Sleepy, I'm baffled by your specialist. You'd think they would have a clue which is the best one for you. Have they done a personalised analysis of your particular tumour and genetics? If not, push for one. That should give the proper answers to those questions. Not all centres like saying those are available, not least because the NHS doesn't like paying for them. If funds permit, you can get one done privately, I believe.

Summersunandflowers · 06/01/2016 19:29

Amber (or anyone else 😀) just wondering if you know if tax is the same as paclitaxel?

fresta · 06/01/2016 19:53

I can't keep up! Waving to everyone and welcome to the newbies.

I think when people talk abot Tax they are referring mainly to Docetaxel. As far as I know Paclitaxel is very similar and part of the same family of drugs (taxanes) as Docetaxel but not exactly the same. It appears to be given weekly rather than 3 weekly- I'm no expert though so feel free to correct me if I am wrong anyone.

Happy I was diagnosed in Sept too, are you having chemo every 2 weeks as I have only had 4 doses so far? That must be very intense if so!

weebarra · 06/01/2016 20:22

Yes, I had paclitaxel weekly as I had pretty horrible side effects (mainly bowel related) on FEC and my onc was worried that the docetaxel wouldn't agree with me. There were very few side effects, I got progressively more tired and had a wee bit of neuropathy but apart from that it was fine. I think it's often given to iller or more frail patients. I was neither but I was getting it done privately so had more options.

Summersunandflowers · 06/01/2016 20:49

Thanks for the info. This thread is a great support X