**Tamoxigang 53** Roll up, roll up... Anyone with any cancer (or test-waiting) welcome!

[MarthaCostello]

Good evening all,

The old thread had nearly run out when I posted so I have taken the liberty of starting a new one before it fills up completely.

I hope the title is OK - there isn't actually that much room, I was trying to fit in that people should come along even if they haven't been diagnosed yet.

If you're new here welcome to the Tamoxigang thread. This is a great place for anyone with any type of cancer (it originally started out as those taking Tamoxifen for breast cancer, hence the name, but has expanded). Please introduce yourself and make yourself comfortable! You're more than welcome here if you haven't been diagnosed yet too, sometimes people find it helpful to talk through their fears whilst waiting for results. And we will hold your hand until you find out, and hopefully wave you on your way with an all-clear :)

There is almost always someone around to chat, or to answer any questions. Nothing is off-limits here. This is somewhere to offload any fears and frustrations, in a safe place where someone will have been there before.

I hope everyone has been enjoying the gorgeous summery weather

Whether - totally ghastly for you. I can't imagine how it must be and yet, in some small part, we all on this thread have an inkling of what you are facing. Many hugs from me and wishing you strength to deal with what you are facing.

Is it a possibility to look at seeking a second opinion from somewhere other than your local place and Plymouth? Amber seems to think it might be?

Whetherornot, have a look at www.ammf.org.uk/cholangiocarcinoma/specialists/
Those are the hospitals that have specialists for this form of cancer. Plymouth has a good team for many cancers, but they might only see one or two case like this in a year. It is worth asking for a referral to a specialist hospital, even if it is a long way away, I would say. I am not a doctor. But if it was me, I'd insist they do so. Because there are treatments - and Plymouth don't seem to be fully aware of all the options, from what I am reading.

Whether fuck fuck fuck and a crock of shit indeed. I am truly sorry to hear this. There isn't really anything I could say to make it better. I won't even pretend to understand what you are going through. I think secondary cancer is such a different ball game from a primary cancer diagnosis, it sometimes seems mad that they are all lumped together.

I really hope they can come up with some other options, perhaps a trial as amber mentioned - it is at least worth asking if there are any suitable trials when you have had a chance to digest the news a little. Also I hope that you can get some support to talk through the chemo decision with - perhaps someone from Macmillan or a specialist cholangiocarcinoma charity. If you know the name of the drug/regime then the Macmillan website has details of each drug and regime, which includes most common side effects etc.

Where are you going on your holiday? I hope it is really special for all of you.

I wish there was something I could say to make any of this easier

Thank you all for your ideas and good wishes.

I have booked my holiday to Fuerteventura - 10 days in a villa with a pool with my brother who lives with me (he'll fish, I'll sunbathe - after all, I can now can't I?? hee hee). We go in 2 weeks.

I will decide on things when I get back. I have only known for a week in days.......but it seems a lifetime in my head!

I have the Hospice Nurse coming on Wednesday (we are not covered by Macmillan but our own specialist team here in North Devon).

just poking my nose in after a very long time away from this thread and am happy to offer any useful words to anyone dealing with secondary breast cancer. I started this discussion 5 years ago-maybe six ? when dithering about tamoxifen for primary bc. Since 2012 I've had metastatic spread to my lungs (bilateral multiple mets) After capecitabine for 18 months I had progression and so was put on to docetaxel.After 6 rounds of 8 it seemed it hadn't worked (though to be positive no new spread anywhere else) and the lung mets had progressed. Since then I've had a second opinion at the Royal Marsden and am currently taking exemestane (oestrogen blocker) as chemo pushed me into menopause. So far some shrinkage. Anyway..am here if anyone needs encouraging words !

Hi MAS, thank you for starting this thread which has offered so much to so many of us. All the very best to you and wishing you lots of successful treatment options.

Whether, have a bloody brilliant holiday.

And a big to our lovely Amber

Amber is indeed a sar ! and thank you x

grrr- a star,obviously !

Whether hope you have a brilliant holiday. Agree that Ambers advice is always good and MAS we all thank you for starting this thread, think I'd be in a much worse place emotionally without it

maryannsingleton I would like to add my voice to the others and thank you for initiating this thread. You can take pride in bringing us all together on our diferent journeys. It makes such a difference sharing with those who are experiencing similar feelings and times. Here is wishing you all the best.

MAS - delurking to say I'm so glad to hear that you are getting some results from the Marsden. I remember you, and Gigs and Topsy. (And, of course, Amber.) The jokes! I thought of you often when I had my own brush with ov ca last year, which fortunately turned out to be a minor variant of the disease. You did a v good thing when you started this thread.

Evening to all, especially all those who are new. MAS glad there has been some shrinkage and would also like to add my thanks for starting this thread. I think it is wonderful that we can ask questions, talk about the rubbish times and talk about the positive too.

Whether- so sorry you had that rubbish news. I hope you have a wonderful time away and that the visit from the nurse is helpful.

There have been lots of questions and I have got a bit lost after catching up but in regards to chemo I was one of those that didn't feel so great with it so I would have a rough week then have a couple that I felt ok. The tax made me tired and very achy but I never really got over the nausea and that stuck until the end. However, it was doable. I was careful to try and avoid infection but with two children I couldn't avoid them completely! I think it was Royal who mentioned it- are you having the injections to help boost white blood cells (at least I think that's what they did!). My eyebrows and lashes stayed until the Tax but then my hair started growing back.

Boobz- fingers crossed the cold cap keeps working for you. I know what you mean about feeling sick with association. I tried playing a game on my IPad and it made me feel I a bit yuck as I used to play it during chemo and my brain took my back!

I had a bone scan the other day and was very worried about what they would find- that waiting is so awful. Luckily all clear but the sense of dread seems to never go completely away, although I'm hoping time will help. It seems my joints are just getting old so I now have to just get on and paint my kitchen.

Somebody further up the thread also mentioned about double mastectomy (sorry, I can't seem to go back as I then lose all my post). I had one with immediate reconstruction using implants. I had six weeks of no arms above head but it healed well and all seems ok now.

Thinking of everyone.

I'm so glad that the thread has continued (though sad that it has to,of course) - it is dear to my heart and I am proud of everyone who has contributed and supported - I have drifted off really as I think it was time for me to move on but I am about if ever needed for anything! Sending lots of love to those who are having a grim or frightening time. xx

speedypenguin hello. Yes it was me who me tioned infection and children as I vouldn' for the life of me imagine how that would work. I have been told I will get the injections,yes, and I am wondering how I will be able to adminster them myself !
I realise chemo affects people differently and I am so so so hoping I am not hit hard as I am a very independent person who is not used to asking for help
I was thinking the other day how tragic it is that even with all the progress made in treating cancer, we are still so far behind that we still have to give chemo to try and stop it:(
I had a bone scan too and a couple more other scans scheduked prior to the chemo. I guess they want a reference point for later. I really can't do with any more bad news now and hope there are no unpleasant surprises lurking.
Best wishes to all of you.

Hi to everyone and to all on this journey,

I've been lurking on here since thread 49 (have a couple of posts on there)

I've had a lumpectomy, 6 lot of chemo, full ax clearance under my right arm and 15 rounds of chemo.

All treatment finished just after easter this year but am now struggling massively with usage of my right arm. I cant extend it fully upwards, extending it on a level with my shoulder gives me a 'dragging down' pain. I cant bear weight on it and its generally really really painful 24/7.

I went for a mammogram and US scan last week, which were clear, and was told it would just 'take time'.

Does anyone else have this problem?

If you had ax clearance and now have full movement/back to normal what exercises did you do?

Hello gemmagailor i had a lumpectomy and full axillary node clearance three weeks ago and am awaiting ti start chemo. I am just starting to feel something like what you describe. From what I have been reading it seemed like chording to me, and I read that it can be treated with physiotherapy by an experienced therapist, but also with the strecthing exrecises we are tuaght right after surgery. I have found that when I do my stretching exercises, the tension and discomofrt are greatly eased. Leaving it alone does not help at all. As you say it feels like I can not raise my afm above my head or fully extend it. Almost like it is tightened beyond my control. I am sticking to the strecthing exercises, but if the symptoms do not go away with them, I am contemplating seeking professional help. Nonody knows for sure why chording happens. Some reckon it is scarring due to the surgery. See if you can get professional help and do tru to get back into the strecthing exrecises if you have sgopped them. They really do help.

Oops sorry gemmatailor..got your name wrong ;)

Gemmateller and Royal I'm having my mx and node clearance on Friday and this is what I'm dreading more than the mx. Had a snb 3 weeks ago and that seems to have healed fine. Have a great range of movement and have even played netball! Still doing the exercises everyday. You probably need physio Gemma as I think things might have tightened up too much for you to sort on your own. Keep doing the exercises as i find they help. I do them in the shower the warm water loosens everything nicely so I get a better stretch. Hope you get sorted soon X

Hi staygold. I understand your concerns as I was and still am so terrified of the prospect of getting lymphedema that i take the exercises so seriously( although no guarantee they will prevent it hapening!)hopefully your agikity and fitness will be an assest in your favour.
i have done so much reading about chording, that I was just so sure that is what I had when the tightness got more pronounced, but I am no doctor so it could not be the case! However, i do know for sure that the stretching exercises really really do help. I second what you advised gemmateller about seeking professional help after this time.

Hi all
I had quite pronounced cording which started to develop very soon after my SLN op where 3 nodes were removed. It was actually the worst part of the breast surgery recovery for me and much more unpleasant than getting over the mx and recon. At its worst I had a thickish cord standing out from my armpit right down to my wrist. I did persevere with the exercises though, even though it was very uncomfortable to do so and it resolved after a few weeks. It got better quite suddenly over a few days although I had been doing the exercises for a while before that, several times a day, and also massaging in my armpit.

I have full range of movement now but still stretch regularly to keep it moving. I had the same surgery on the other side a while later, though only 1 node removed, and had very little problem so it's unpredictable I think.

Keep stretching!

just popping in after a long time away to anyone who remembers me :-D

Gemma - I had similar issues and I found these exercises really helped. You have to stick at them (at least twice a day) but after a couple of months my movement and strength was so much better.

Royal- you will be able to do them yourself but I went to my surgery and the nurses showed me how to do it and then watched me do it myself the next time. I just grabbed a roll of fat, flicked the skin (nurse told me to do it to make it a bit numb) then went ahead. Needle is very small. The thing I found more difficult was making up the solution as you have to mess around with powder and water(all ready for you to use and combine) as I found it hard to think at that point after each chemo. Definitely preferable to ending up neutropenic though. I teach a reception class so think I was also lucky enough to have built up quite a good immune system over the years.

Off to visit my sister so am hoping motorway all clear!

Thanks speedypenguin. So youwere okay working and all during the chemo? That is great especially as your work involves being around young children and once again the whole spectre of infection looms:) what abour driving did you find that pk? I have to do the school pick ups and am a bit anxious about driving while on chemo. Sometimes I wonder if I am not overdoing the whole chemo side effects anxiety, but I know for many people chemo is very tough.

Hello! Does anyone here have liver mets and if so do you still have the occasional alcoholic drink?

Thanks everyone for your comments and suggestions, will ring about physio tomorrow.