Hi not exactly new to the forum been reading it for over twelve months but never posted anything so the story is diagnosed sept o7 treated with chemo then WLI and total lymph removal then just two days before rads due to begin found another lump resulting in mastecomy. Removed breast showed 8 more tumours in it !!! then went on to have rads. Howeve rads planning scan showed something on the lungs which has turned out to be something they refer to as mets and say it is a secondary but they are going to keep scanning to see if they change and not treat at moment anyone else in this position or with lung secondarys who can help me worry so much about the future.
Dear bellusci and welcome to the forums,
You may find the BCC publication on secondary breast cancer in the lung helpful to read. It can be found at :- breastcancercare.org.uk//docs/secondary_breast_cancer_in_the_lung_0.pdf
Also, if you would like to talk through your fears and concerns please give our helpline a call. Here you can talk with a trained member of staff who can offer you a listening ear as well as support and information if needed. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I hope this helps you
Lucy
Thank you for that Lucy will ring if i need to have chatted this week to breast cancer nurse at my local hospital but may well ring for another chat and support.
Hi
I am in a similar position to you. I was dx with bone secondaries in Jan 2007. They seemed to be bobbing along quite nicely until i found a lump under my arm in July, which turned out to be a cancerous lymph node. A CT scan followed which showed 2 tiny nodules in my lungs which my oncologist wants to “keep an eye on”. I am due to have another CT scan on 5th November. So like you I would love to hear some positive stories about lung secondaries. I understand your concerns, I feel that it’s nice not to be going through chemo at the moment, but on the other hand I also feel like i should be ‘doing more’, treatment wise.
Good luck with your scans.
Linda
Hi Bellucsi and Linda.
I was diagnosed with primary BC in Feb 07. Just before surgery was due, a chest x-ray showed something…so off I went for the CT scan, followed by PET scan. I too have some small nodules which are suspected secondaries. They did not show as cancer on the PET scan, but did respond to FEC chemo…However, there has been no change in the size over the last year…so we continue to keep an eye on them…My onc tells me that he has a lady ‘on his books’ who has been in this position for years…Had CT scan today - and know that it is traumatic waiting for results…but that is part of our lifes now…
I am taking Tamoxifen at present…with no severe side effects.
Hope this helps.
love
Heather
Hi BoneyL and HeatherLou
Good to hear from you both and hear what is happening with you, looks like we about the same boneyl my scan 27th Oct and as you say the hard bit is thinking we should be treating it now not seeing 'how it does ’ but the oncs know best just a hard one to live with at times good luck to you both too we will hopefully be like heatherlou and just need to be kept an eye on who knows we too will all be like this for years to come - my onc keeps telling me he expects to be seeing me for years to come so hold on to that. I know my cancer is not hormone receptive so dont take any of the drugs that lots of ladies do so expect you are the same linda as you don’t mention any medication your on at present. Lets keep being positive and look to years ahead good luck. Cheers for the help.
love
Lynne
Hi Bellusci and HeatherLou
Nice to HeatherLou that your nodules aren’t growing - let’s hope they stay that way for a long, long time, likewise Bellusci. I am hormone receptive and am currently on Aromasin. I was on Femera for a year and a half, until I found a infected lymph node in July this year.
All the best
Linda
Hi all!
just been diagnosed with secondaries in the lungs. have been very devastated. I need all the advise I can get from anyone who is in similar condition. just found out this week. Onc have already started me on Xeloda chemo tablets. has anyone been on it? any advise will be very helpful pls. I just want to think positive. so worried
Dear Babygirl, welcome to the BCC forums where you will receive information and support to help you through this difficult time.
As I posted above to bellusci you may find the BCC publication on secondary breast cancer in the lung helpful to read., you can do so by following this link:
breastcancercare.org.uk//docs/secondary_breast_cancer_in_the_lung_0.pdf
If you feel it would help to talk through your fears please give our helpline a call. You are able to talk to a trained member of staff who can provide a listening ear as well as support and information about other secondary support we can offer you. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
I hope this is of some help to you at the moment
Best wishes
Lucy
Hi Babygirl
Sorry to hear about your dx - hopefully you’ll find a lot of information and support on here.
I have liver mets and have been on xeloda since May (just completed my 7th cycle). It has worked very very well for me (and for quite a few other ladies on here, though sadly not all). I had multiple tumours in my liver in May and my tumour markers were over 400. My latest scan about a month ago showed no sign of the tumours at all which was pretty amazing!! My onc is keeping me on it continuously but at a low dose now (to minimise side effects) as he thinks the tumours will grow back quickly once I stop chemo. What dose are you on?
There are several threads about xeloda and its side effects - particularly the hand and foot syndrome - if you want to search. Or just ask.
Good luck - hopefully it will work as well for you as it has done for me. There are some ladies on this site also who have been on it for a number of years - they will probably post as well with a bit of luck and tell you their story.
All the best
Kay x
Thanks Kay for ur information. So glad that it has worked for u. I pray that it works for me too.Also very pleased to hear that some people have been on it for some years. i Just love to hear about positive things. Am on 2000mg 2ice a day morning and evening, 2 weeks on 1 week off.
Any more information will be very helpful. THANKS!
Hi BabyGirl
I started on 1800mg x 2 daily 2 weeks on then 1 week off. Tolerated that quite well so went up to 2000mg for 2 or 3 cycles but then got very sore feet and hands so onc has been gradually reducing it since then - last cycle has been just 1150 mg x 2.
Would advise moisturising your feet and hands from the very beginning as sore feet seem to be the biggest problem for me (and many others). Mine blistered on the higher doses and are now quite dry and prone to cracking and peeling. Udderly Smooth cream(can buy it on line) is what many people use and recommend. I’ve also used Body SHops Hemp Cream and just plain aqueous cream (which is the cheapest). Tend to plaster that on over night and then wear cotton socks on top - very attractive! LOL. Also take pyrodoxine (Vitamin B6) daily which onc says helps.
Have had some gut problems as well but no sickness - always take the tablets within 20 minutes or so of eating, otherwise can feel a bit nauseous occasionally. ALso try to eat regularly as can sometimes feel nauseous if I get very hungry. Have had problems with acid indigestion ever since my first chemo 6 years ago and xeloda definitely hasn’t helped that - take lansoprazole daily for that.
Can’t think of anything else to tell you! Despite all the above, it is the easiest of the 3 chemos I have had and I am still working 30 hours a week at a fairly demanding job (and doing lots of other things as well!).
Let us know how you get on. Take care.
Kay xx
Thanks Kay for all ur information. will take it on
Hi Babygirl - so sorry that you have joined us…but you will get heaps of support from the experts on these pages…I really remember the feeling of absolutely devastation on diagnosis…
I really hope that Xeloda keeps everything at bay for a long long time…
My onc always says that there is plenty of different ammunition in his tool box…I do find it reassuring that if one drug starts to fail, then a change is possible.
Love and positive thouhts to all.
Hi Babygirl,
I too am on Xeloda for lungs and bone and have had a good reponse.
I have very little side effects, feet have blistered but have never been sore.
Kay123 gave me the same advise and it worked a treat.
Hope you get on well,
Bikinggirl
nice that u are sounding positive bikinggirl. we all need it
Hi BabyGirl…
I have never been on Xeloda.
My history is…dx Feb/Mar 07 with primary BC. The day before my WLE op I was called to the hospital to say that the op was off as three small nodules were in my lungs and the focus for my treatment had to switch. After many tests - CT scan/PET Scan/Blood tests…it was decided I could start chemo so had 6 x FEC. When chemo finished - my lungs were looked at again and the nodules in the lungs had shrunk - indicating that they were cancer (the PET scan had not shown this). I was put on Tamoxifen to keep things at bay. By February 08, the nodules had not changed and my onc and breast surgeon decided to give me the best chance possible (their words) and I finally had my operation. Have been happily on Tamoxifen ever since. I am scanned or x-rayed about every six months.
I feel so much better this year than last - I am back to a normal life and will cross whatever bridges I have to when they arise…
Really thinking about you at the moment…and fingers crossed for that treatment
Love
Heather
Hi HeatherLou,
Nice to know that u are doing well. just love reading the positive things. we will all beat it!