Lung mets - please join in

[izzy63]

Thank you Lemongrove for all the info. Did you have biopsy carried out and how did they do it? I had biopsies carried out 2 years ago when they drained 2 litres of fluid off my lung. This was done under a general anaesthetic and I was quite poorly afterwards, so dont fancy having general again. Thank you again

[mrsblue]

This thread?
http://www.breastcancercare.org.uk/community/forums/secondaries-treatments-medical-issues/positive-n...
How did I find it?!? Trawling through the New Threads section ... (pages are slow to load on my PC this morning). The thread was on page 4 of 10.
By the way, how new is a "new" thread? The oldest one on page 10 (there seems no "Last page" button) is
http://www.breastcancercare.org.uk/community/forums/secondaries-treatments-medical-issues/anyone-had... ,which was posted on 1st September, one month ago.
(Sorry to hijack this thread, I have liver but not lung mets... hoping to help in the absence of a Search function on this forum.)

EDIT - the thread title is "Positive news".

[Lemongrove]

Izzy63, my understanding is that Everolimus has been licensed for use when cancer has become resistant to endocrine therapy, such as Tamoxifen,Letrozole, Exemestane, or Fulvestrant (there is a thread on this forum that gives details of this and someone may be able to find it for you). However, if I was in your position, I would first want to know why my cancer was no longer responding to endocrine therapy. Yes, it could be that your cancer is still hormone receptive, and has simply become endocrine resistant (in which case the treatment recommended may well help). However, if your cancer has changed it's receptor status (which occurs in around a third of cases), and is now Her2 receptive then you would probably require Herceptin or Lapatinib, and possibly some sort of chemo.
The reason I am mentioning this to you is that my cancer changed it's receptor from ER+ to Her2+, and the two Profs at my hospital advised me that it is very common for this to happen. The only way you will find out if this has happened is if your Onc orders a biopsy of one of your metastases (if you have a chest node it is a relatively simple and pain free procedure).
Please find a link below to a meta-analysis of the available literature concerning cancer changing it's receptor status.
http://annonc.oxfordjournals.org/content/23/suppl_10/x349.full

[izzy63]

Hi Ladies
Its my first time posting so please bear with me. Fist dx in 2000. I had mastectomy radiotherapy and 5 years tamox. 2010 was diagnosed with lung secondaries (pleura and nodules). I had fluid drained and talc treatment. Since secondary diagnoses I have been on Zolodex inj and letrozole. The letrozole is now not working so my onc has put me on tamox. At my last appt she discussed a new medication called everolimus (afinitor) which I would take with exemest when the tamox stops working. I just wondered if any of you ladies was on this new medication. Im not sure whether it has been passed by NICE. Any info would be welcome.

[Heather5]

Hi ladies.
Dulcie, I have adenoid cystic carcinoma which is usually found in the head or neck. I asked my ONC yesterday about the nodules on my lung and he said that these could just be normal for me but he is booking me in for another CT scan in early November and then I am seeing him at the end of November so will just have to wait and see what he has to say then. V happy today as it is my last day of rads - no more travelling everyday!
Hope everyone else is coping ok. x

[Amore_Dulcie]

Hi ladies xx what type of cancer have you got Heather? Hi pinkylou ..chipper... i have 10 lung mets ..no idea of size onc just ignores me whe i ask for information about them! I started Xeloda a week ago....
But moving on to a 'new' to me ..hospital...
Take care ..i hope se's are not too bad xx
Dulcie xxxx

[pinkylou]

Hi heather , I have 8 small lung nodules and they say they are too small to biopsy so they assume they are breast cancer. But I understand they may not be , I also understand if they are breast cancer can change receptor status so really I am in the dark. This is important for treatment, I am going to ask for more information. I think you should too take care x

[Heather5]

Hi Louise, I am having rads for a rare cancer in my left breast. I haven't been diagnosed with lung mets but am worried about the pain in my back and shoulder. I have got small nodes on one lung but onc said it might be from smoking - I am trying to stop smoking. He said I will be having regular MRIs because of the nature of the cancer. I think I am going to have to be brave and ask again tomorrow about the pain.
Thanks for replying to me. I am sure I have replied to your message once but it seems to have disappeared!
Heather x

[pinkylou]

Hi heather , hopr u r ok. Let me know how you get on. I have a chest x ray on Monday. Are you having rads for your lung mets ? I have lung mets and I did get a lot of pain in at shoulder and back but I think it was anxiety. It has gone now I am on on xeloda.

Louise

[Heather5]

Hi ladies. I am having 29 out of 30 rads tomorrow and will be having my review with my ONC as I have my last treatment on Thursday - can't wait - no more hour journeys to and from Sheffield! I am worried as I was told about two months ago that i have small nodules on one of my lungs. I also have pain in my back and right shoulder, but my ONC and Surgeon have just told me to take painkillers. Should I be worried and asking for further investigation or should I just accept what they say and take the painkillers?
It is really "getting to me" at the moment, don't know whether its just stress with the treatment or what. I would be very grateful for any advice. x

[chipper]

ah,that's good - thanks pinkylou

[pinkylou]

hi chipper , Everyone had different se and I was told every cycle is different . I am just finishing cycLe 3 I take 1800 mg in morning and evening. I have had a bit of sickness a bit of upset stomach a bit of chest pain. But all in all ok . And 9 Isn't a lot I think I have the same x

[chipper]

forgot to say- is 9 a lot ? the largest is about 2 or 3 cms apparently- I seem to have not asked the onc everything !

[chipper]

hello- I've very recently been dx with lung mets (about 9 across both lungs) and started on Xeloda on Saturday...so far so good...when/if might any SEs kick in do you think ?

[pinkylou]

Thanks for your message , that's cheered me up today , x

[lollypop59]

hi ladies, see you all struggling at the moment i was dx with lung mets, in jan this had 6mths weekly taxol, and my last scan was july and it was clear, finished chemo a month ago, but still on herceptin hoping this brings you some positive thought. lollypop. x

[Heather5]

Hi ladies, don't know whether I am posting on right place but any advice would be gratefully received. For a while I have had back and shoulder pain. I had a lump and pain for about three years in my left breast and, eventually after numerous visits to drs and two visits to breast clinic, it was diagnosed as breast cancer. I had lumpectomy and SNLB June 20th and got my results on 29th June when I was told it wasn't breast cancer but adenoid cystic carcinoma which usually appears in head and neck - lucky me! Also told by my surgeon I probably wouldn't need any treatment and this was good news. I also discovered that this cancer doesn't usually go through lymph nodes but goes through nervous system and blood? (My lymph nodes were clear). I had CT scan and saw ONC a few weeks later. Onc said I would have 30 sessions of rads and then regular MRIs and mammograms. He also said that there were a few small nodules on one of my lungs. I told my surgeon and Onc and radiographer about the pain in my back and my shoulder and they have just told me to take pain killers. Should I be worried about this or am I just being over anxious. I also get breathless and tired but am thinking this could just be the rads?
Any advice would be appreciated. Hope everyone is keeping well x

[Rawlie]

Hi Millykins,
Not been on for a while as se's from chemo got pretty bad. It turned out that the toxicity levels in my blood were too high and they've had to reduce the Taxol by 20%. Felt a bit better last week. I also think the acupuncture is starting to take effect. Glad to hear you recommend it so highly.
Good news that you managed to get your oxygen sorted out. That must be a relief. My cough got bad last week so I started taking the anti-inflammatories and paracetamol and codeine again and it seems to have settled down.
Take care,
Rawlie x

[tillybob]

Glo, I was like you Dx with multiple mets to both Lungs in Feb last year, Had a ct scan once chemo finished was left with 1 tiny met(JULY '11) just had a scan 12 months on and I am conpletely clear of all disease in my Lungs , I am on Herceptin and letrozole. I was worried about going so long without a scan but Onc was happy to leave it. Good luck.

[Glo]

Diagnosed at stage 4 from the start in Sept 2010 with multiple nodules in both lungs. Every scan since then has shown improvement with the last one in May just showing "teeny spots in base of left lung"! (very medical terms!!!).
Just been for 3 monthly check up and onc wants to leave next scan another 6 months as have been stable for so long (so it would be 9 months between scans!. Bit scary but he's confident with it).
I am very well and suffer no effects at all. Told onc I would put him in the record books and he told me about a patient he has with lung mets who is still going after 20 years just on endocrine treatment!!! Great news eh?

X Glo

[Ramsfan55]

Hi ladies, is acupuncture available on the NHS? If so how do you get referred?
Thanks
Suzanne x

[millykins01]

Thanks again Rawlie - sorry you have bad tum - not good on top of everything else. I have acupuncture already & I LOVE it - it really helps both with SE and gives me a feeling of total relaxation - I enter a differnt state when the needles go in a bit like hypnosis & feel like everything is fine. just respite but it really helps to re capture that feeling to remind you what it feels like & give you that goal to aim for - that in spite of everything you face you CAN still FEEL OK. I highly recommend it. My main worry with Avastin is my blood pressure as it does seem to be getting high so think I will end up on BP tablets too just to add to the cocktail - Lovely.
I do feel much better today. My oxygen finally turned up after OH got on to the docs agsain - typically now this kind of service is contracted out to a private company end even though the order was marked urgent it disappeared in their system somewhere - The guy who delivered it said they get massive fines if things like that happen. luckily for them it wasn't actually "critical" but it could have been & i always think about people on their own or less capable trying to deal with these things & when you don't know what is supposed to happen you just assume it is sorted!
yet again we also had to call this AM for my appt for friday's chemo as the clinic was full on the system on last week so they couldn't do it there & then plus I had to arrange to go to the local small chemo unit thurs to take bloods the day before cos I have a PICC & they don't take it from them at the main hosp - How crazy is that - I have a PICC cos my veins are knackered - that's the whole point!!!!!! It also means less of a wait for results before they can decide if my levels are high enough & I usually call myself later that day & they give them to me over the phone - I had my FEC there & the nurses are lovely & helpful which doers make all the difference. - Anyway after a day of calls it's all dealt with - thank god I have a wonderful OH who sorts things out as I'd have just ended up unable to breath & coughing with all the talking needed to sort it.
HUGS XXXXXXXXXXXXXX

[Rawlie]

Hi Millykins,
Would have got back to you earlier but had a bit of a rough week. Stomach upsets and chemo just don't mix! I have found that the side effects of the Taxol have got worse as time has gone on, I'm afraid. It kind of creeps up on you. I suffer quite badly from the fatigue and also have a few days when I am nauseous. I am also getting lots of pins and needles in my fingers and toes though, which at the moment is more of an annoyance than being painful. But then as we all know everyone reacts differently to chemo. I was really sick on FEC the first time round so wasn't surprised to be suffering this time, especially with it being weekly. It is hard to remain positive sometimes but then when you have a down day I think you just have to go with it and know you will feel better again soon. Accept the fact that it's ok to feel bad sometimes. But you then just have to pick yourself up again, spend lots of time with your family and friends and get back on with life. I saw your other post when you were having a bad day and you really have to believe that you will be in the percentage of people that the treatment does work for. You're going to fight it!!!
As far as the Avastin goes, the only side effect I get is a bleeding nose. I was on Avastin the first time round for a year as part of a trial and I never had any other side effects. I'm glad you seem to have found some things to help with your cough. It was probably a good idea to have the oxygen too. My cough has been pretty good recently. Sometimes it's irritated a bit if I do more than usual but not like it used to be. Oh by the way, I went to see an acupuncturist last week. I have heard this can really help with the se's so I'll keep you posted.
Take care and I hope you are feeling a bit better.
Rawlie x

[pinkylou]

This is such a brilliant thread , I have lung mets diagnosed march 2012 original tumour 2008?but localreoccurrence this year .

[millykins01]

Thanks Rawlie that was realy helpful. I wondered if the chemo stirred it up too as it was sooo much worse 3 days after the chemo. I have asked for the oxygen now anyway as I think that may help stop the coughing catching cycle if I csn get the air in my lungs quickly before I need to cough as then it just escalates into a cough, breath, cough thing. with stress incontinence on top coughing is NOT a good thing!!!!!!
I have been taking co-codamol which def helps with the cough too but first thing & in the eves it is particularly bad. I have also started olbas oil inhalations to clear phlegm & that works a treat - good old fashioned remedies - plus sucking fisherman's friends as it opens my airways - I find the ventolin just makes me cough more!!!!! When I asked I think the nurse said if I was to see improvement it would be after 3 cycles at least maybe more so if you are after 4 cycles that is good. at first i thought she meant 3 doses but that would just be miraculous - I wasn't thinking straight!!! I had omep[rozole for tummy when on docetaxol but think that was the steroids irritating but I think avastin can do that too so I will ask for some of those. how soon after starting avastin did you get side effects - & how are you generally on the chemo - only first one but I honestly feel fine just a bit tired but nothing like before????? - It just helps to hear others expereinces first hand.
Lyn I agree - get checked just to put your mind at rest - It isn't easy as you then have the wait for results etc etc but better to check it out otherwise the worry eats away at you anyway XXXXXXX

[Rawlie]

Hi Millykins,
I also have lung and liver mets which started with a cough. I have now had 13 sessions of Taxol and 6 of Avastin and have only recently seen an improvement in my cough. About 3 days after each Taxol my cough would get worse and then settle down again after about 3 days. So I think the chemo must stir things up. A few weeks ago because I was getting so fed up with my cough I saw my lung specialist and he said that because of the cancer my lungs are extremely sensitive. He asked if my nose was blocked up and I said only because it keeps bleeding so much due to the Avastin. He also asked if I had any acid indigestion, I said yes. So he gave me a nasal spray, something for my stomach, anti-inflammatories and paracodol. I took everything and it worked really well, I hardly coughed at all. Obviously you can't take the medicines indefinitely so I have found since that my cough has come back a bit but not as bad. He also said that your body can develop a habit of coughing. It's so used to coughing that it becomes like a reflex. So it may be that there are other things you can try before the oxygen. This is just my experience, obviously everyone's different but it's worth asking. Good luck.
Lyn, I would suggest that you get your cough checked out. It's always better to be on the safe side.
Rawlie x

[westland39]

Hi ladies, I hope you don't mind me posting here, was going to start a new topic but am not finding this new website easy. I was just wondering what signs you had when you were diagnosed with lung mets, the reason I'm asking is because I've had a cough for about 10 days now. I was diagnosed with bc last may IDC, I had a chest CT when I was diagnosed, this picked up a small nodule so they re-scanned me 6 months later and because the nodule hadn't changed they were 99.9% it wasn't anything to worry about. I had TCH chemo which is taxotere carboplatin and herceptin then surgery a WLE followed by radiotheraphy. I went back on to herceptin, I only have two more herceptins to go then i'm finished ( i've had 18 in total). I have been trying to put this cough to the back of my mind and I have read that herceptin can cause it, but deep down it is playing on my mind. On one hand I think I'm being stupid because I had a CT chest scan in January but I know how quickly things can change with this disease and that's what i'm worried about. of course it could just be a cough that I would of got anyway but having breast cancer makes me look at everything in a bad way even though I try my hardest not to!
Thank you
Love Lyn x

[millykins01]

Hi - Hope you don't mind me joining here for a bit of advice - I have just been DX with extensive nodal disease & lung mets. I started piclitaxol & avastin last Fri - last night & this Am my cough has been horrendous though it has calmed down during today - think it could be just that I overdid things at the weekend but was very scary as I just couldn't stop coughing & hardly get breath. Once i cleared phlegm it was better - do you have any advice? I know ultimately the chemo needs ot work to clear the underlying issue but until that happens do you have any tips on managing symptoms - My GP offered oxygen for when I climb the stairs as that gets me very out of breath & I said no as it just felt a step too far too soon - felt like I was about to croak if I needed oxygen but think I might need it - he also gave me morphine to take at a low dose - agaihn I am too scared to start taking it as it all feels a bit much but I may just be being stupid about it. I obviously hope that once treatment kicks in properly I will feel better - any ideas on how long that may take from your experiences - I know no one ever gives any definite answers in medical world as they just don't know but any reassurances would be gratefullt received right now.

[Lemongrove]

Dulcie, I'm posting a link below to an interesting link abour metaplastic breast cancer, which discusses how it differs from other types of breast cancer, the difficulties of treating it, and useful approaches for treating it.
The other thing I wanted to mention is, have you discussed a drug called Iressa / Gefitinib with your docs? Apparently one of the major problems with metaplastic breast cancer is that it overexpresses a growth factor, which drives tumour proliferation, and this drug suppresses that particular growth factor.
http://www.breast-cancer.ca/type/metaplastic-breast-carcinoma.htm

[Steris]

Hi Dulcie,

Sorry to hear about your recent dx always very difficult to deal with, I've got sec mets to my right lung which I've had for 3 years. I started Cap last December and after a couplk of breaks one to go on holiday and the recent one to have my ovaries removed. There is quite a few threads with tips on how to deal with the side effects on the seconday medical treatment. I wish you all the best and that it holts and reduces the nodules. Hope the radiotherpy helps.

Take care and let is know how you're getting on.

Love
Chris xx

[scottishlass]

Hi Dulcie, I am not a lung mets lady although I do have bone mets but I am on Capecitabine. Have you seen the thread that is mainly about Capecitabine? I have been on this chemo on 3 different times. This time I have just completed the 8th cycle and am doing well on it as it has reduced my tumour markers considerably. Some ladies remain on this chemo all the time. It is one of the easier forms of chemo. The side effect to look out for are sore hands and feet but not everyne has this problem but if they do they usually reduce the number of pills you are taking to make the chemo more tolerable. If you cannot locate the thread come back on here and we wi bump the thread to the top of the latest posts column. Ask any questions you want to, we do not mind. Hope this chemo works as well for you as it has for many of us on the site. Val

[tillybob]

Hi Dulcie, so sorry about your recent DX, I did n't have that particular chemo so can't help you there but i wanted to wish you well in the treatment your having, you don't do things by halves do you !! I thought I had a rare one wiith IBC and lung mets . Let us know how you are getting on with things
Jean

[Amore_Dulcie]

Hi Della..ladies... just joining this thread as a 'newbie' ..it has not taken long from diagnosis to now get lung mets!! I am about to start Capecitabine along with 12 rounds of radiation..instead of the original 25...gawd i hope this works..it has only taken 3 months to go from 2 tiny nodules..to now having 10 larger ones..my tumour doubled in size ..just before surgery...I'm Metaplastic..Trip Neg ..Spindle Cell....i think just having breast cancer was more than enough without the extra's..
Nice to meet you all..i do know some ladies from other threads...any advice would be most welcome! Including what i need for chemo! I have forgotten since last time!

Dulcie xxxx

[Historygirl]

That's fantastic news Jean. I'm really pleased for you. And you're right, it does give a boost to us others with lung mets. Congratulations and here's to years and years and years of more of the same.

Della x

[scottishlass]

Absolutely delighted for you Tillybob/Jean. So good to hear good news. Hope you continue to do well for years to come. Love Val

[tillybob]

Hi Ladies, it's long time since posting on this thread, just had to share my good news, latest CT scan shows Lungs are now clear of all signs of Mets, I am now NED.
I wanted to hear good news like this when I first started so hope it gives hope to those of you undergoing treatment.
Jean xx

[sarahlousie]

Hi Sookie,

So sorry your worst fears were realized but you are in the right place, we all understand what your going through, you will get through this like Laura has said chemo's really do work on lung mets and there are plenty of secondary ladies living with this, remember this is breast cancer that has spread and therefore its not the same as small cell lung cancer. I'm sure once you start your treatment plan you will feel better, unfortunately it takes time to come to terms with the dx, I'm still adjusting to my dx and that was over a year ago, this forum and the wonderful ladies on here will support you through this. If you want to chat just send me a PM (private message).

Thinking of you
Love and light
Sarahlouise xx

[Sookie]

Definite diagnosis of lung mets to commence Gem/Carb chemo on Monday. Any advice would be very grateful. Hard getting my head round this at the moment.

Thanks girls

Sookie

[Sam_BCC]

Hi Sooke

I’m sorry to read of your recent diagnosis, its sounds like you are having a pretty tough time at the moment.

As well as the support you receive here maybe you would like to talk to a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

Best wishes Sam, BCC Facilitator

[laura64]

Hi snookie sorry your back here again but welcome it can be very hard at first dx but then u become positive and then want to fight this I'm tn with lung mets been on 2 lots of chemo in yr and both have shrunk mets they can't cure it no but can stable them and u can live a normal it's very I know I hate it why me bla bla but try to look on treatment and all the sec ladies on here that still going strong for many yrs gd luck pm me if u wanna chat tc Laura

[Sookie]

Could really do with some support please - have been told today that I have shadowing on my lungs - have to have a biopsy from lymph node on Tuesday and see Onc again next Friday. I am in shock - diagnosed last May with Trip Neg BC and only just finished treatment for BC in Jan 2012.. My Onc tells me he can stabilise my condition - please can someone give me some positive thoughts here. Have had to start on Valium. My daughter graduates July I am in bits here - I am desperate to see her graduate. Didn't see this coming and went to the hospital on my own today - only prob had been a chest infection after a holiday abroad. I felt so well, how wrong can you be.Should've been returning to work in the next couple of weeks
Sorry for such a long rant - I just needed to put something down.

Sookie

[zola]

Hi Nuttytart,
Just want to join the others in saying that things will get better. I was diagnosed with lung mets 6 months ago and was devastated! Didn't eat properly, couldnt get my head round anything but thanks to this forum I am now coping well. Have gone back to work and doing everything I did before the mets were dx. Like you I was 3 years since the primary and confident that it wasnt going to come back but I am now on Tamoxifen and my last scan showed that the mets are stable.
I'm eating healthier meals than I used to.Trying to eat lots of fruit and veg and drinking juice etc. Also green tea which is very good. Not stopped the chocolate though or the wine!!
Hope everything goes well for you. I'm sure you will feel as I do in a couple of months or so.
Take care. Sheila x

[sarahlousie]

Hi Nuttytart, Ladies,

Like everyone else has said so so sorry you've got to join our club but you are on the right thread, we all understand completely what your going through, initially its hard.. trying to come to terms with the dx, it takes the passing of some time and a treatment plan too get your head around this once this has happened you will feel better and instead of it being right in your face it kind of sits somewhere on your shoulders and then behind you, what I'm trying to say is at the moment its all about the lung mets and its very raw/fresh, with time it will not be such a constant thought, you can live with this and treatment really does work on these mets, also remember this is secondary breast cancer not lung cancer, so basically all the treatments for breast cancer work on these mets that includes herceptin if your Her2+ and tamoxifen if your ER+. If you ever want to talk just pm me, sending you lots of luck for your results next wednesday and thinking of you.

Love and light
sarahlousie xx

[tillybob]

Hi Nuttytart. sorry you have had to join us but your in the right place for advise and support, we all know how your feeling, we have been there too !!
if you need anything just Pm me or any of the other girls we are only to happy to help.
A big Hug xx
Jean

[Pam170]

Hi Nuttytart, I am about 3 weeks in front of you and know how you must be feeling. I was 3 years down the line and it was devastating to get the news, ended up not eating and on sleeping tablets and anti depressants. I feel like I`ve never stopped since with tests for this and tests for that, it was also found I had mets on my spine. Anyway the good news is I have started having an infusion every 4 weeks for my bones, yesterday I had a one off blast of radiotherapy onn my spine and today my first chemo of tax. I must admit although I feel a bit bashed about as I have been told of the SE`s from both radio and chemo I didn`t expect them less than a day apart. Still I will hopefully get it all over with quickly. I am having tax 3 weeks on and one week off.
Keep your chin up and if you need to talk I`m here to share the little I know.
Pam

[nuttytart]

Hi, I was disagnosed with Lung mets last tuesday, 99% sure secondary breast cancer would have been my 4th year clear. Still waiting for some results which I get new wednesday.

Would be grateful for advise, as I can get my head round it. I am positive with people around, but so annoyed with them when they say we pray for you and keep positive. I am polite and say thank you.

But what can you say to them.???

Sorry for a rant, but thats how I feel at the moment, in nomansland till I get the results.

[laura64]

bumping up for nutty tart

[sarahlousie]

Hi Jean, Oh yeah thats right your mets have too be minimal ie: 1 or 2 and they have too be larger than tiny, basically large enough so they have something to aim at I suppose. I feel the same way as you do I want to know what's going on with my lungs, the last scan was directly after surgery mx with lymph clearance and it showed no change since June so I thought it was going to be scan every 3 months but it would appear every 6 months now, so worrying since my last scan I have done 3 weeks of rads, been taking tamoxifen for 6 months and continuing with the herceptin and want to know if all of this has had any impact on the lung mets, I told my GP twice about this concern and he agreed with me he has written to my onc twice and asked when my next scan is so far nobody has replied, tried ringing my oncs secretary still no reply its exasperating to say the least and short of becoming an absolute nuisance which I really don't want to do like you said what else can we do!

Wow £22,000 per met is astonishing how much all these treatments cost, I know one lady on here who has had cyberknife and she got it paid for through a charity.

Sending you lots of love
sarahxxx

[tillybob]

Hi Sarahlousie, I am fairly well at moment, I have a frozen shoulder as a gift from rads but other than still being tired I am ok. My Onc won't let me have a scan as she said it's not needed yet, My next one will be in July a whole year since my last one !
I am not happy with that but what can we do ?
She says my one met is as good as gone so why am I worried, but of course I want to know what's going on.I am on Herceptin and Letrozole.
As for Cyberknife I am willing to try anything to clear my lung but if it's too small they can't treat it apparently, I am willing to go private if necessary.I had a quote from Harley st clinic it costs £22,000 per met !!
Hope your doing well and long may it continue.
Love and light back at you xx

[sarahlousie]

Hi Pam,

So sorry to hear your worst fears were realized, you are on the right thread for support and understanding, like tillybob jean has said initially the shock and everything its just dreadful but as time goes by and your treatment plan starts you will feel a lot better.

As far as treatment goes I had x1FEC then they found the lung mets and changed it to x5 taxotere, the FEC I was really really ill, the tax not so bad didn't feel sick throughout made sure I got plenty of blood building foods down my neck so my blood count was up for the next round, I remember eating whatever I liked and that included red meat good quality, also after having mx when I was aneamic I ate liver and onions my bloods shot up the very next day!! If your vege try making some watercress/nettle soup I wrote the recipe for this out another thread see below* this is great for building bloods loads of natural iron, obviously where possible stay away from anyone who has any bugs cause your immune system will become depleted. I also was taking optibac probiotics for immunity all the way through as well as evening primrose, fish oil omega 3, selenium tabs, vit d and c. The tax worked shrank all my lung mets to tiny and since last scan in Oct they are classed as stable, due for another soon. It worked for me and tillybob it will work for you as well.xxx

Here's a recipe for Nettle and Watercress Soup you can buy the watercress from the local supermarket and collect the nettles from the countryside (make sure where ever you collect from is free from roads people and pollution) using rubber gloves pick only the new fresh tops and fill a carrier bag about half way, make sure to wash thoroughly.

Nettle & Watercress Soup
Peel x4 medium sized potatoes and boil until soft whilst they are boiling
Sweat some chopped onions and garlic in a pan with olive oil or coconut oil
add about a pint of some organic vege stock cube
then add the washed watercress and nettles
simmer them for about 10 - 20 mins
then add the cooked potatoes
and blend the lot until smooth and soup like consistency
delicious served with some warmed garlic bread

Tillybob - Hi jean hope your doing well, wanted to ask how often do you have scans? only mine was nearly 6months ago and I'm a little anxious to get the next scan done and dusted, I've been on tamoxifen and herceptin ever since, so not sure if the tami is doing its stuff or if its the herceptin.
Great news about you only having one met left thats just fantastic, your probably eligible for cyberknife now, as I think they only treat mets on the lungs if there isn't that many.

Sending you all
love and light
sarahlousie xx