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Lung mets - please join in
Fri, 27/05/2011 - 09:16
#1
Hi all
Can I start a designated thread for those with lung mets? I know I would find it very useful to have a designated thread where experiences can be shared, and advice sought. If you agree and also have lung mets can you check in here?
Thankyou
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Hi all I have lung mets to be a gd idea
have had lung mets for 4 years and would be interested to know how everybody else is coping and what treatments your having.
LOVE Nicky
Hi everyhone,
I have lung mets, diagnosed in September 2009, treatment for primary was 2006, WLE, chemo and rads then tamoxifen. I am on letrozole now it has kept my lung mets stable. At the moment the consultants are considering cyberknife, I will know shortly if I will be having it. Great idea about this thread.
Love Marina x
I have posted a thread elsewhere, but am repeating my post here, because I thought it would be useful for those with lung mets (as the NRIG have particularly recommended SBRT for lung mets).
The National Radiotherapy Implementation Group have finally produced their recommendations to Commissioners and Clinicians regarding the commissioning, and use of SBRT (see link below). It is very worthwhile reading it, as it will be very useful for those who require funding for stereotactic radiotherapy such as Cyberknife or TomoTherapy.
Firstly, it makes clear that commissioning of SBRT should become the responsibility of the new Nationalised Commissioning Group (not GP commissioners).
Secondly, it recommends that SBRT is commissioned for the following cancers Lung Cancer ,Prostate Cancer ,Head & Neck cancer, Hepatic cancer ,Renal Cancer, Oligometastases, Spinal tumours, Pancreatic cancer.
Thirdly, it suggests the above list should be a minimum, not maximum list.
Fourth, it suggests that commissioners should offset the cost of SBRT, by the savings it can produce (e.g, SBRT can delay the point when chemo is required).
I am personally very pleased with this report, because it supports all the points I have been making in my numerous letters to commissioners and policy makers (as well as on this forum). Also, while Commissioners are not compelled to accept the recommendations, it makes it increasingly difficult for them to resist funding. This is not the end of the funding war, but it certainly is the beginning of the end.
http://ncat.nhs.uk/sites/default/files/NRIG%20SBRT.pdf
Hi I have lung mets, still early days DX in Feb at same time as primary I am having 6 tax,with Carboplatin and Herceptin, Mx and full node clearance followed with Rads, staying on herceptin indefinatly and having Letrozole after chemo. I am pleased to see a thread for lung mets ,its good to hear how others are getting on with things.
JEAN
I always feel left out when reading these forums, as not many people with lung mets seem to post!
I was diagnosed with lung mets from the start in Aug 2010. had a lumpectomy, followed by scans which discovered "multiple small nodules" in both lungs. So far have been treated with femara and the last two scans (october 2010 and December 2010) both showed a slight reduction.
My onc then wanted to leave me longer for the next scan because he said "it's like watching the hands of a clock move" because AIs work slowly. Am now anxiously awaiting my scan on 7/6/11 which will have been 6 months!
I feel absolutely fine (apart from mentally) and have no SEs. Long may it continue!!!!!!!
Hi all
My cancer is in the lung pleura. I had a pleurodesis which did not work and I now have a further build up of fluid around the lung and am quite breathless at times. I am on arimedex at the moment.
Val x
I too have mets to the pleura. I was diagnosed 3.5 years ago (by an extremely thorough gastro enterologist who was investigating another, unrelated, problem!)
I had a pleurodosis which worked very well, and have had no further build up since then ( not sure if you had a talc plerodosis-I did, and perhaps this helped make a difference?)
Treatment at present is taxol, herceptin and pamidronate. Scans after 3 cycles showed some reduction in the pleural mets. Am now awaiting the latest scan result which I should have any day.
I've found the biggest problem with the pleural mets is the winter months, when pain levels increase noticeably, and I become more breathless. These mets don't like cold, damp air!
HI all
Yes, it is good to see the lungs mentioned separately but I am greedy I ahve mets in my lungs, liver, bones and most recently one in my eye!!!! So, I post on the bones and liver threads and also the one with several sites affected!
My lung mets were diagnosed in October 2009 along with liver and bone. My lungs look like the stars at night on my scans, widespread but tiny. So far both chemo regimes I have had in the last 18 months have reduced them. I had Carboplatin + Gemcitabine in 2009/10 and most recently, Capecitabine + Vinorelbine. The first lot of chemo gave me significant reduction however it just came stoming back so back on chemo again in October 2010 and just finished last month. Scans were done on Wednesday this week and I get my results next Friday.
I tried to get Cyberknife to finish them off last summer after I had significant reduction but was declined as the mets were too widespead and too small. Not sure whther that is good or bad, probably bad. Anyway, I will keep exploring ways to keep myself going. So thanks for the links and info Lemongrove.
Sue x
So far just a couple of tiny mets in lungs so hoping for the best with Capecitabine that I really hope will tackle liver mets - but hoping scan shows lung ones have not progressed.
Seems like lots of us are waiting for scan results - had my scan over a week ago but no appt for nearly 2 more weeks so am trying to contact research nurse for feedback but not getting any response yet... just want to know... a feeling I know others will share....
Bump
Hi All - Oh this is FAB!! Lung Met ladies out there talking about being years and years post diagnosis and other talking about 'no symptoms'. THANK YOU!! Just what I needed!
I have TNBC and mets in bone (spinal tumor - ouch!!) and multiple small mets in both lungs. I have had 9 weekly Taxols with Avastin every two weeks - scan on Thursday to see if it has worked! I HAVE to believe it is working - there is no other option!!! Life is too much fun!
Looking forward to sharing and supporting!
Sadie Xx Xx
Hi everyone
I have lungs mets. Primary was 1997 and has returned with a vengence.
However, I was diagnosed before xmas and started on femera in January. My last scan showed that most of my mets had shrunk, so it would appear the tablets are working. Next scan is on June 13th. Fingers crossed.
Hi, thats really good news diddy to find a treatment that is working! Good luck for 13th. My scans are on Thursday - it will be nice to know my treatment is working (taxol with avastin). Thinking v positive!
Sadie Xx Xx
Hi Diagnosed last march with lung mets on aromasin too many in lungs to consider cyber knife I was first diag with BC in 2004 ..3 monthly scans ughhh hate them. feel breatless but only when I think about them lol and the stairs but I have gained soo much weight on aromasin thats prob part of it .... some tumors have grown some have shrunk so next scan in july so lovely to meet you all xxx
Hi, was recently diagnosed March 2011 with primary IDC and secondarie mets in both lungs, did one FEC chemo (then we found out about the spread to the lungs) so they changed it to taxotere and herceptin next round will make it my 4th chemo in total then going to CT scan me on the 20th june to find out how well this combo has been working (which I think it is as my right breast actually looks better than it did before) obviously dont know if its working on the lungs but no other symptoms and other than chemo feel ok, glad you have started this thread.
Good scan results to ALL
sarah xxx
HI - Just wanted to say HI to you all!!
Im off for scans this afternoon - CT and MRI, typical just when the sun comes out!! Ive got no lung symptoms but TNBC so not easy to treat. However, I DO FEEL POSITIVE that this treatment is slowing things down - or even sending them backwards! So, I will stay in this frame of mind whilst being scanned and hope the rest of you having scans can also find the strength to get through this scanxiety!!
Hugs
Sadie Xx Xx
Hi Sadie, good luck with the scans, I am having mine at the end of my chemo,just had 4th out of 6, the treatment does seem to be reducing the Bc but obviously can't tell what's happening with the lung mets, I have no symptoms up to now my onc has said they were tiny so hopefully the chemo will have shrunk them further.I am having herceptin indefinately and also will have Letrozole once chemo has finished so lucky to have several treatment options.
I feel much more positive after reading other posters comments ,they seem to be having good results ,some even having mets go altogether!
We have to believe we can at best control this awful disease until a cure is found , very soon I hope !
Jean xx
Good luck this afternoon Sadie, it is such an anxious time having the scans and waiting for the results, fingers crossed they are all good. Jean I have been on letrozole for over 18 months now and it is keeping my lung mets stable, I may be having cyberknife treatment soon just one more doctor to confirm this. There are new treatments being developed all the time and as you say it is good to read from others on this website the good results they are getting from different treatments. God luck to all who are having scans at the moment.
Love Marina x
Hi,
was originally diagnosed in 2007 with g3 bc, had a lumpectomy then had to have further clearance, followed by chemotherapy and radiotherapy, 2009 had local recurrence and had to have a mastectomy, no chemotherapy but zolodex and arimadex. All going well until I thought I'd pulled a muscle at the gym, turned out my left lung was filling with fluid, oncologist said it was nothing when I first complained about it!! In January had a in dwelling catheter fitted in the left lung and put on more chemotherapy which I have just finished on Wednesday, resuming the rolodex and femara in a month , the good news is that the lung is totally clear as I had a ct scan a month ago to check that the chemotherapy was working. Originally my oncologist said that if it doesn't work I would have less than 12 months, if it did work I would have maybe 4/5yrs left, devastated, only 42 with a 5 yr old, trying to look to the future, it's good to see the support on this site but not many with lung mets.
Jill
Hi Jill
I have lung, liver and bone mets, secondaries diagnosed October 2009 and I was told I could have less than 12 months. I know it is horrendous but.....I have been fortunate and each of my chemos so far has worked. Take heart, there are lots of different treatments available now and I for one am confident that they will find something to stop this awful disease before it finishes me off.
Easy to say I know but, keep yourself as well as you can, spend your time with the people you love and try and do something nice every day. If you can keep yourself pain free then you can almost forget about it sometimes.
Best wishes and a cyber hug on its way to you.
Sue x
Hi All!!
Tilly and Marina - thank you for your good wishes. Feel quite calm at the moment - hope this lasts through the night!! The cyberknife sounds esciting - unfortunatley I have too many mets and am pining hopes on chemo - Taxol and Avastin (TNBC). With the medics help, we CAN control this disease!
Jill - so pleased your lung is clear at the moment - great news. I hope you can look forward a little now!
Sue - Some good advice!! 'Something nice every day' = today I watched Dr Who with my 11 year old almost on my lap hiding under a blanket! So much fun!! I wirte a 'diary' every night and note the good things I did - just a few lines. Helps me be positive and sleep well!
CT and MRI results tomorrow - fingers, toes and everything else crossed for me and other playing the waiting game. It will be nice to have confirmation this IS WORKING - there is no other option!!
Cyber hugs to all
Sadie Xx Xx
hi everybody, good to hear from other lung mets women. I've got a scan coming up on Thursday to see if current chemo is working-haven't tried avastin yet and wondering how other people are getting prescribed it? Good luck to everybody waiting for results.
love nicky
Morning all,
Sadie thinking of you today,everything crossed for you, dol hope you have good results. Good luck with your scan on Thursday Nicky lets hope the current chemo is working for you.
Hope everyone is feeling well today.
Love Marina x
Morning ladies, just a quickie to wish Sadie good luck today and to Nicky on Thursday with scan results, lets stick together and give each other support through this ,Cyber hugs to all XX
Jean
Hi all just wanted to wish all the ladies going for scans gd luck mine is next month hoping chemo as worked hope all is well tc Laura
HI - Fab scan news!! Chemo is working - all nodes in my lungs reduced or gone. No new areas of concern!! I am delighted!! I can stay on Avastin / Taxol until either disease progresses considerably or SE become too much!! So will carry on doing what im doing and keep going. I am thrilled!! How clever is that!!!????
Hugs to all - esp scan waiting ladies and others on Taxol / Avastin!! What a wonderful day!!
Sadie Xx Xx
Yes yes yes and yes - this is the sort of news we like! I am so pleased for you
How do you feel about staying on the taxol/avastin - do you feel you can cope with the SEs?
For every ache and pain I get, I see it as the chemo munchkins nibbling away at the bad bits - they've obviously been nibbling in your lungs to good effect!!!!
I have my 9th Taxol and Avastin this week and then have my scan. I don't want to tempt fate, but the lump on my neck has reduced significantly and the one in my breast I can't feel. I'll be more than happy if he says I have to continue on Taxol/Avastin.
Once again - brilliant news and keep those positive thoughts flowing
Linda
x
Super news Sadie - delighted for you and hope you are relaxing and celebrating!! It's great to hear this positive news of treatments working.
Great news Sadie, really thrilled for you. A nice glass of bubbly and then get on with enjoying life as much as you can. Good luck to everyone else waiting for results.
Love Marina x