Hey Happyfeet
I’m in the East Midlands - maybe it’s something in the water that breeds gloom and doom oncs!
Laurie x
hi all, sept 2010 was dx with bc novem 2010 secs in bone, liver, lungs, and lymph gland round chest, 6 cycles of FEC i have zometa monthly, after the chemo liver lungs were clear, over the last few weeks ive been breathless and feel ive no energy, i went GP and he said deff somet on bottom of right lung wich he would treat as a lung infection 1 week of Amoxicillin, i have almost reached the end of the course of tablets and feel no different…so now im convinced the cancer is back in my lungs, i just wanted to ask you ladies did you have anysymptoms before the DX of lung mets, thank you avril
Hi Avril,
Prior to my stage IV diagnosis after a routine screening, I had absolutely no symptoms (liver, lung, bone). Only symptoms I have ever had have been the SE’s from the damn chemo!
Hope it’s nothing - just a stubborn chest infection.
Laurie x
Hi everyone,
I’ve not posted on here before as I haven’t had anything really to contribute but I have found all of you on this forum to be my lifeline since I was dx with secondaries to my lungs in Oct 2011!I was completely shattered at first but after listening to you all I now have some hope for a future. Thank you!!
I had a small lump on the reconstructed breast and my surgeon was immediately concerned and sent me for bone scan and ct scan. I was found to have multiple mets on both lungs and changed from letrozole to Tamoxifen. When I saw the onc I was told that they were very small; the largest 5mm.In Jan 2012 I was re scanned and went back to see the onc last week.The onc read out the scan result which said "no evidence of any new disease.Good! Then said that the largest was STILL 2.3cm.! I mentioned that this was an increase as the largest had been 5mm. We then both looked at both scan reports and the first one did not mention anything bigger that 5mm. Because the scans themselves were not available to look at I have to go back next week.
I had the scans at different hospitals and I dont know if one is at fault for not noticing or if the disease has progressed.
The day of my first scan I had had the bone scan a few hours earlier so I wonder if this made the ct scan less accurate?
When I was there last week I was going to ask about some discomfort I have been getting in my neck for the past few weeks but because of the other things I forgot. I will ask next week but I wondered if anyone else had had similar symptoms.
Thanks again to all of you.
Hi Zola
Good to hear that you’ve found all our ramblings helpful!
Can’t think of any reason why the bone scan should have affected the results of the CT. It may be that the scan has been wrongly reported or wrongly read and it would be good for your onc to get a copy of the original scan (most places can do it by electronic transfer).
With regard to the discomfort in your neck, I would definitely mention it. I have vague aches and pains in different places at different times. Currently I’ve got twitch in my right eye and I swing from thinking it’s either stress or brain mets - unfortunately these thoughts go with the territory 
Good that there is no evidence of any new mets and hopefully the Tamoxifen will do it’s job and shrink the bigger one - whatever size it is.
Laurie x
Thanks Laurie. Will definately ask about neck next week. Hope everything is okay with you.
My computer is plYing up today so am typing this on my phone. Can’t see the print that well so if there are spelling mistakes…take care Sheila x
Hi Laurie,
Just to say thanks again for the advice. I was struggling typing on the phone. The keys are too small. I am on line on my computer again now although it keeps playing up. Fingers crossed! Anyway I hope what you are feeling in your eye is nothing and I’m sure it isnt but I know what you mean. Every new twinge or pain is a worry. Do people settle down I wonder and become more calm. I rang the breast care nurse yesterday to ask about my neck but it was an answer machine so I changed my mind. May as well wait until next Thursday when I see the onc. No one else has said anything about this symptom so maybe it’s got nothing to do with the cancer. Take care, Sheila x
well GP sent me for chest xray today thinks might be fluid on my lung but to my suprise the blood test came back saying probs with my liver, i have a routine appt with my oncol 23rd of feb but gp wanted it brought forward but my oncol dr is on holiday nxt week…so its the waiting game again…just thought i would let you ladies know, good luck to you ladies xx
Hi Zola, laurie, anvil,
I have SBC with multiple mets to both lungs, get a bit out of breath sometimes but not sure if this is to do with anxiety or the mets, my onc seems to show no worry about these lung mets and reassures me that I am doing fine.
Zola - I also get a nervy type of pain in the neck it comes and goes sometimes I think if I concentrate on it that it seems to become worse!!! If I am engrossed in something and sort of forget about it it seems to disappear, quite bizarre!!
Anvil - I did’nt have any symptoms and was dx from the start with primary IDC in right breast and secondaries to both lungs they told me there were multiple or lots of mets on both lungs, after chemo, surgery and now just finished rads, the mets on my lungs are the same as the ct scan last june no change they are now tiny and unchanged or stable thank god. Rads can cause breathless type symptoms and also herceptin if your on that can make you a bit breathless.
Laurie - Just wanted to say hi and thank you for your comments you always give me a positive vibe something I am truly grateful for, hope you are responding well to the treatments.
Love and light to all
sarahlouise xx
Avril
I work with liver results all the time and there are lots of reasons why your liver function tests (LFT’s) could be elevated. Sometimes as a response to chemo or other drugs (mine were abnormal during chemo) or sometimes, folk just run high for no apparent reason.
My GP called me in to talk about my low Hb which had gone from 13 to 10 but forgot that I’d had chemo which explained it! It’s good that s/he is on the ball and keeping an eye on things but that does cause anxiety.
Sorry you’re waiting and hoping it’s nothing.
Laurie x
Hi sarahlouise,
Thats exactly what it feels like. “nervy”! Sometimes a bit “tingly” but like you it seems to go at times. I will query it next Thursday and let you know what the onc says.
Just had an energetic morning. Took my dogs for an hour on the moors which was hard because of the snow and ice and have just been swimming with my friend so feel pretty good at the moment. Got to go shopping now. Hope the day doesn’t go down hill! Always end it though with a couple of glasses of red wine which is nice and relaxing.
Take care , Sheila x
hi Laurie,thanks for that i just always think the worst…went for zometa friday and sister on ward said my oncol had spoke to her and to arrange a CT scan for me, the sonest they could get was 22nd the day before my appt with my oncol…but they have said from tuesday to ring up and try and get in earlier…so fingers crossed
Hi All
I had BC 3.5 years ago. Had 3 ac and 4 tax, lumpectomy, all nodes removed, one found to be infected. rads. All ok till just b4 Christmas when I started with a little cough. It turns out to be lung cancer. The onc told me to stop Arimidex as it obviously wasnt working and I am starting a 6 x 3 week course of chemo tomorrow - tax again. I am honestly dreading this chemo as it knocked me for six but the onc said it shrunk the tumor well so I will have to go with that. My prognosis isnt too good, maybe 1 year, maybe a bit more but he cannot say, obviously. I dont know how they come to that conclusion but he must have seen so many people over the years that he knows what he is talking about and seems to be a good onc. If I am honest, part of me wonders if it is worth bothering with chemo again, knowing what it does. With bc it was worth it as there was some light at the end of it all but now all I can see is treatement, sickness, feeling really c…p and for what. There is no light at the end of thhis tunnel. I dont want to upset anyone, or feel defeatest but what I have said is true. I feel tired all the time and would just love to curl up in a corner and hybernate.
It feels good to have got that off my chest, thankyou. Friends and family I try to be positive for and it is draining. So in the morning I will put my best face on, get to oncology and be attacked by that flippin tax. xxx Chris x
Hi dipstick aww don’t feel sad I can understand how u feel I had prim in 09 fin rads 10 and in 11 got lung mets I’ve had chemo witch worked v well and shrunk mets I no its hard but try to be pos onc don’t always know I had mine a yr in march and there are loads of us that as lived past onc results I know tax is hard can’t u ask about a dif chemo I had tax but didn’t work u can try something dif gd luck kp posting tc Laura
Hi Chris
I was wondering how you are doing. Sorry the blasted chemo is starting again but I hope it really knocks those little buggers into touch. I don’t know you exact situation but I’m surprised that your oncologist was so negative. If you look on the forum there are ladies living with lung mets for many years, with chemo often putting them into the precious NED state. Primary and secondary BC can react so differently and just because you now have developed lung mets it doesn’t mean that you will be perpetually on chemo, with all the rubbish that it brings! I had one lot of chemo 4 years ago when my bone mets were dx and since then been on hormone tablets so there are other treatments available even if Arimidex didn’t work for you. I really hope that Tax isn’t as horrible this time around but I don’t have Ny experience of it to know what to expect. Keep in touch, either in the secondaries section or drop in to the Buddies, you know you’re welcome any time.
Take care
Nicky xx
Hi Chris
Sorry to hear your news but please don’t lose hope.
I can understand your reluctance to go back on TAX. I recently finished 3 of them (I have liver, lung and bone mets) and have started on Tamoxifen. When my onc said, they could use TAX again in the future my heart sank at the thought of the damn stuff, however, it did help with the mets and a few months out the other side, I feel very well and have gone back to work full time.
As for the “1 year” business, I’m assuming you don’t have an expiry date stamped on you anywhere so MEH to that! A lot of women and men out there are also saying MEH! to expiry dates and there are many on this site who are doing well with mets, kept at bay with various treatments. Also you did say “1, year, maybe more, he cannot say” Doctors are notoriously rubbish at predicting life expectancy in SBC as it is such an individual disease.
Hope the chemo works out and is less harsh than the last time. Come back and vent when you get tired of keeping up that positive face (I know that one well!)
Big hugs
Laurie x
thanks everyone for your replies.
I was meant to have my first chemo last week but got a water inf and was put on anti bis for a week and couldnt have my chemo.
I duly went for chemo at 12.15.today, waited an hour for my turn. Got in and sat down. The nurse wondered why I hadnt had my bloods done a couple of days before. I said because the nurse last week said because my chemo was cancelled the bloods I had had that week would be ok. The nurse this week disagreed and made me have some more. So I had a good hour to wait again, left hospital, went for a macdonalds (really healthy) and then went back for chemo. Finally got home at 5.15. (it can only get better…)
Its good to talk, thankyou,
love Chris xxx
Hi Chris, don’t you just love it when you are told one thing and then something else, especially when it involves bloods and chemo
Hoping your SE’s aren’t too bad and that next time you are not waiting around so much, I remember just wanting to get out of the hospital ASAP! But also remember being the last one out one day, so I do feel for you.
Take care
Nicky x
Hi Chris
Good to hear you finally got the chemo though know what it’s like to hang around waiting to be poisoned!
Hoping the SE’s are minimal for you.
Laurie x
Hi everyone,
Just wanted some advice. I am going to see the onc tomorrow to see whether there has been any progression with my lung mets. I am just taking tamoxifen at the moment but when I was there 2 weeks ago faslodex was mentioned which is another hormone treatment but given by monthly injection. Xeloda was also mentioned. If I am given a choice tomorrow because there has been progression I think I am am tempted to go for the chemo as I feel that there would be a quicker response. I wondered though if anyone has had the faslodex and whether this has worked for any of you.Tamoxifen is the second hormone treatment I will have had. Letrozole didn’t work either so you lose faith dont you?
Sheila x