wanted to hear from any stage 4 ladies with mets to the lung. My Mum first had bc when she was 42, she had a lumpectomy and radio treatment. She had ned for 14 yrs then had reaccurance in her other breast and had just the one breast off. She had something called a flap, muscle taken from her back. She was then on Tamoxifen. 5 yrs after she had 12 nodes removed and again five yrs on she has mets to the lung. It all started with shortness of breath and she had it drained twice. She then had plerodesis. They tried her on faslodex but the cancer progressed and she has now had 6 cycles of ec chemo. Her breathing isn’t any better and she can’t really walk anywhere. She also has lymphangitis. She has a ct scan tomorrow then back to onc on 29th April. I am really worried. The onc has told me life exp 2 yrs and I am not coping with this very well. I wondered if anyone knows of anything to help the breathing?
Holly
So sorry to hear your news.
I have lymphangitis and a huge solid lung tumour and was diagnosed with that in Sept 06 but I’d been really breathless since May 06 so knew something was wrong. Since then I’ve had various chemos which have always helped reduce my breathlessness. My cancer is herceptin positive but hormonal negative.
Do you know if she has ever had the tumours tested for herceptin positivity because that could be another option? I’m not sure what your knowledge is about Her2+++ breast cancer but herceptin only works if you have that particular type of cancer - the info site here is good for better info on this subject.
My bc is not hormonal responsive so I’ve never had that option and know nothing about that side of things but sure others here could help.
Hopefully your mum still has other chemo options or hormonal options which should help with the breathing problems. I found vineralbine really good for me but we are all so different in our responses as there are such variations in the type of bc.
I was totallly oxygen dependent Nov/Dec 07 but since then the last chemo (gemacetabine nd carboplatin) has really improved my breathing and I’m only breathless on things like stairs etc at present.
I had a bronchoscopy last year and the chest physician prescribed a really strong steroid inhaler which helps reduce the inflammation caused by lymphangitis. I also had oral steroids which made a huge difference to the quality of my life. It also gave me the energy I needed to help me enjoy last summer - there are side effects but I’d rather have a fat face than be short of breath all the time.
To sum up, I would ask about future chemo/hormonal treatments, is it a herceptin positive tumour as it may not have been tested for back at the last recurrence? Ask about inhaled and oral steroids?
Presumably, if your mum is that breathless, she has home oxygen and if not, I would ask about that.
The other thing is to ask for support from the Macmillan Nurse/Marie Curie/Hospice Services as they have been so brilliant in giving me ideas how to help various symptoms. Being under the care of the hospice does not mean that your mum is going to die very quickly. I’ve been under the care of the hospice team for 18 months now and it has really helped me, hubby and my small children cope with this disease.
Is your mum getting Disablity Living Allowance under ‘Special Rules’ . Again, it is marketed from the ‘expected to live for 6 months or under’. In reality, now when you apply it says the situation will be reviewed in 3 years so they obviously expect people with secondaries to claim who are expected to live for more than 6 months.
Sorry - probably have thrown too much info at you at once.
Sorry to hear your news - i understand how devastating it is from the bc sufferers point of view but can see the effect it has on my family and friends.
Hope all goes well with the appointment and that the CT helps plan future treatment for her.
Just ask again, if there is anything you want to know. No question is a silly question and people really do want to offer you and your mum help and advice. It’s usually quiet on a saturday night on the forum but by monday I expect you will get more replies.
Kate
Hi Dippykate,
Thank you for your reply.
My Mum’s tumour isn’t suitable for Herceptin. My Mum does have oxygen at home but it doesn’t really help. She had a coughing fit yeaterday and it really frightened me. I will ask about steroids on the 29th when we see the onc. The Macmilan nurses do phone my mum but I don’t think my dad is to keen on them. I think they frighten him.
Thank you for your help.
Holly