Hi,
I was dx with breast cancer a year ago and have had 4xA.C.3xTax , mastectomy and rads, finished treatment in November and went on to Herceptin, onc had to stop herceptin in Dec due to low heart function
I found a lump under my arm a couple of weeks ago
I have just had my C.T.results and have been diagnosed with lung mets I can`t believe this has happened so soon!! I realise I am not quite sure what lung mets are!! They kept asking if we had any questions and we just foolishly kept saying no!!
I am having difficulty getting my head around this as I only got the news this morning and am in shock.
Are there any ladies out there with lung mets who are being treated with capecitabine. Do you have a reasonable quality of life? Did you lose your hair? I vaguely remember my onc mentioning having breaks now and again, how often?
My B.C. is coming to see me later in the week to answer any questions,but I would be so grateful to hear from you.
Take care,
Love,
Janx
Hi Toronto
I have given here the link to our page on the website which has further information on secondary breast cancer of the lung. You may find our publication on the subject a helpful read.
Also available on the same page is the link to our Secondary Resource Pack, again you may find this a helpful read.
I am also sure that other users will be along shortly with information and support for you.
breastcancercare.org.uk/server/show/nav.714
Kind regards.
Louise
Facilitator
Hello Toronto,
I think i met you at one of the liverpool meet ups.
I am sorry to hear that you have been diagnosed with lung mets. It is a massive shock and you must be reeling.
I was diagnosed with lung mets a year ago.I do not have many symptoms at present. I get breathless and seem to get more coughs and colds. I am not on the same treatment as you. All our cancers are different and treatment depends on the pathology of your tumour/spread.
I was Er+, Pr+ and Her2+(IDC grade 3 lymph node+). At present I am on hormonals (zoladex and Femara), Herceptin and Zometa (a bone strengthener as I have bone mets too). What was your diagnosis?
I am sure that you will find comfort and support from the many ladies with lung mets on this site…Julie x
Hi Julie,
Yes we did meet in Liverpool,great to hear from you. I realise how little I know, as you said I am still reeling. Its good to know that you dont have any symptoms. I have absolutely no idea what my diagnosis is except that I have lung mets I obviously need to ask many more questions!
My onc is desperately trying to get me back on to herceptin, I have an echo scan on Friday.
Please keep in touch,
Janx
Hi
am recently diagnosed with bone sec. and have been put on Capecitabine. Not Hormone sensitive but Her+.
I am almost finished my 2nd cyle. The first I was sick but on this one they adjusted my anti sickness tablets and I feel q. well. Tired but able to manage ok. I’m only 38 so hoping this drug does the job.
No hair loss as yet.
Good Luck
Hi Jan,
Unfortunately I didn’t meet you on that Liverpool meet up as I couldn’t go.I’m sorry to hear you have progression to your lung.
I had lung mets too,but after having six Capecitabine recently,they have now gone.I also have mets in liver and spine.Now just on Herceptin and Zometa.I didn’t have any symptoms either and it was just detected through scans.
You can find lots of information on the internet about secondaries and BCC information sheets are also good.You can view them on the website or send for them through the post.
Take care,
Alli x
Hi Jan and Muddy
Here is a link to some further information about secondaries and treatments:
breastcancercare.org.uk/server/show/nav.714
I hope this is useful.
Best wishes
Lucy
I just posted questions about Capectabine on a different thread about chemotherapy. Asking if anyone could tell me more about side effects. I have started these in a bid to get the bone spread under control.
I have two more days left on the first cycle. My God! I underestimated the effects, thinking tablets would be an easier option plus I have been knocked for six and feel knackered, far more so than my first round of chemo.
Morning sickness is how I feel all day. But the main problem is such sore feet… I am looking for advice on what to do. Pydidoxine tablets have relieved them somewhat but what lotions/creams have people used???
Any advice welcome!
Lou x
Hi Lottie,
I was on capecitabine for 2 years and had a problem with very dry skin on my feet which turned to nasty blisters. I had walked around Barcelona and boy did I suffer. I used e45 cream and Ian my husband rubbed my feet every night. In fact he still does. I have lovely soft feet. I was also o.k. with the anti sickness tablets I took domperidone. Tiredness was not a big problem for the first 7-10 days but by day 14 I was ready for my week off. I did get the poos on the first couple of days in the weeks off spent most of the night on the loo. For me it was an easier chemo than taxol, which I am on at the minute.
Good luck and get rubbing those feet.
Love Debsxxx
Your onc may reduce your dose I was on 2300mg twice a day.
Hi Jan
I’m on my 6th cycle of capecitabine now and at my last scan it had zapped and shrunk some of my lung mets. I do find it a joy in comparison to my last chemo - it doesn’t hammer your haemoglobin so I haven’t become anaemic this time, my hair is growing, I have had some dryness/hardening on my feet, but nothing to complain about. Have been using Udderly Smooth cream which smells lovely and started taking B6 a week before my first cycle. Have only had nausea a couple of times, mostly if I move around too much within the first hour of taking the tablets. Also for the first two cycles I had quite a lot of headaches in the second week. It is notoriously harsh on the digestive tract and so if I don’t eat enough with the tablets then it can have a rather cleansing effect!
I hope it goes well for you. Good luck!
x
Hi Toronto
I had about 9 cycles of cabcitebine and found that the only side effects were sore fingers and feet and fatigue at times. I have liver, lung and bone mets. They can alter the dose quite a bit if you do have side effects. It kept my liver and lungs stable but not my bones which are playing up so I am having to change chemo. Hope this helps.
maddison
Interesting this - I am on 2nd cyle and taking ondanstron (Spelling) anti sickness tablts with it - are you ladies managing it on it’s own.
Ad my feet have started to ache a bit - oh the joy but if it works - bring it on!!
MuddyXX
Hi muddy2
I’ve been on capecitabine since last May (started my 15th cycle today) and have rarely had much nausea so long as I take the tablets within 20 minutes or so of eating. The only other time I get nauseous is if I get too hungry at any stage - so tend to snack a bit (my excuse!!). Do get indigestion though and take lansoprazole for that but just carry the anti nausea tabs around with me!
Sore feet and hands are my main problem…
Kay x
Thanks for replying.
Can I just clarify - do you take no anti sickness tablets with your capecitabine?
I tried only metroclopromide (Spell) with first and I was very sick. Now on it with Ondanstron and feeling ok but constipated (Oh the joy of it all).
Is your mouth ok - no ulcers etc. Sorry to ask all these questions but I know I am likely to be on this long term (If it works) and wondering what to expect - thank you so much for sharing your experiences!It means so much more than just a doctor telling you the possible problems.
My hands and feet feel a bit tight, if that makes sense.
Thanks for replying.
Can I just clarify - do you take no anti sickness tablets with your capecitabine?
I tried only metroclopromide (Spell) with first cycle and I was very sick. I mean really vomiting and feeling so poorly.Now on it with Ondanstron and feeling ok but constipated (Oh the joy of it all).
Is your mouth ok - no ulcers etc. Sorry to ask all these questions but I know I am likely to be on this long term (If it works) and wondering what to expect - thank you so much for sharing your experiences!It means so much more than just a doctor telling you the possible problems.
Also another question - has your dosage dropped - I am on 2250mg per day.
My hands and feet feel a bit tight, if that makes sense.
Thanks
MuddyXX
I used to take ondancetron half hour before morning chemo and domperidone before the evening ones . I did take ondancetron at first for both but the constipation was a real problem, for me this combination worked but we are all different.
Good luck.
Love Debsxxx
Hi Muddy,
I take Cyclizine for nausea. I have been on capecitabine for about 18 months. I m not sure if its the capecitabine or the cancer that makes me feel sick…
I am on dose of 2150
Lottie
Hi Lottie,
It’ll be the Capecitabine(Xeloda)that’s making you feel sick.I felt a bit nauseous on it too.
Alli x
Hi Muddy
I’m lucky in that I don’t seem to get nauseous on it at all so long as I take it with food etc (as I said in my first post). So I don’t take anti sickness tablets regularly at all.
Nor do I get mouth ulcers etc (have had one in the 14 cycles I’ve done).
My main side effects are indigestion, diarrhoea on 2 days in the 2nd week and very sore feet and hands (have blistered, cracked, peeled etc etc).
I started on 2000mg x 2 and have gradually reduced cos of the feet and hands really, though he’s just put me up again slightly (am now on 1150mg x 2 ).
Hope that helps K