Mets to the lung

[27-359]

Having battled through three lines of chemo, Avastin and a parp, I have now discovered that the cancer has progressed to my lungs.I see my oncologist next week, and don't know if he will have any suggestions, but what I am looking for from you ladies is how to deal with the breathlessness. I have become almost sedentary and unable to walk anywhere, do even basic housework and even getting dressed requires frequent rests. I live alone and am feeling that this is the worst I have felt in the seven years I have been fighting this disease.

Just a thought, has anyone with Mets to the lungs been offered radiotherapy?

Jenny

[Lyndy2]

Hi Jenny

Have they X-rayd you to rule out pleural effusion? This could be the cause of breathlessness and can be sorted by draining.

If not then I would think chemo will be the way forward. I have not heard about radiotherapy being used in this context and my treatment for pleural mets was chemo. Hope your consultation goes well and you come away with a plan xx

[27-359 in reply to Lyndy2]

I have a small pleural effusion, but not enough to incapacitate me to this extent. It seems that it is the Mets that are causing the problem.I don't think there is any chemo available to me now as I have been fighting this for seven years, and my body is pretty much wrecked from treatment. I have just finished weekly Taxel and my veins are in pieces now and couldn't take any more. (I had a scan with contrast a couple of weeks ago, and my veins leaked, fortunately while I was getting pre saline and not the contrast fluid)

Jenny

[Lyndy2 in reply to 27-359]

Aah I see… can they perhaps provide oxygen at home for you? It’s very debilitating not being able to get enough air in. Keep agitating for them to do something and not leave you alone with this problem xx

[27-359 in reply to Lyndy2]

I will. The hospice are very supportive.

[Riverflo in reply to 27-359]

Have you tried a portocath? The thing in the chest for taking blood/ having infusions?

[27-359 in reply to Riverflo]

No, I have only had a picc line so far. Presumably the chemo fluid would still be going through the damaged veins, which I think is where the problem lies.

[Riverflo in reply to 27-359]

I'm not sure. I had a minor surgery under local to have the portocath installed in my chest ( I live in Spain so not sure if it's called the same thing elsewhere) . It goes directly into a big vein near the heart so there is no further damage to small veins.I know the contrast uses more pressure than blood flow but maybe it would be diffused better if going from a big main vein? I don't know really but maybe worth asking. X

[Realistic]

Dear Jenny, lve no experience of this but lm sure there will be something oxygen might help my neighbour actually carries one around with her for breathlessness at first it stressed her out. But she's got totally used to it now that may help. Then hopefully when you get your strength back, your oncologist will be able to get your lungs sorted. It must be really hard for you on your own but if you can get your breathing right it might help. Your obviously one incredible woman but need some help at the moment have a word with your team tell them how much your struggling or even your Maggie centres are fantastic with great advice & information to point you in the right direction . Please take care big hugs & love SheilaFxxx

[27-359]

Thanks for replying. I must admit, the thought of trundling an oxygen tank around is not pleasant!Unfortunately my area ( Kent) has no Maggie type support available, which is why I asked to be referred to the hospice.I

Jenny

[Realistic in reply to 27-359]

Jenny you wouldnt know my neighbours carrying anything its so small . I would also try ring either Macmillian or the ovacome line you need some help too get you through this patch.Xxxx

[27-359 in reply to Realistic]

That's interesting. A lady I meet at the hospice has a trolley that holds her oxygen, with tubing to her nose. I didn't realise there was anything else.

[Realistic in reply to 27-359]

She does have thin tubes up her nose but honestly you wouldnt really notice, in fact l went to mass on Saturday and she had it with her she did have a small quilted type bag with her so it must have been in that l will ask her for you. Xxx

[Realistic in reply to Realistic]

I have Just WhatsApp her and she's sent me a picture but lm useless at putting photos up but its a small ruck sack that she had under her coat . Really neat didn't even realise she had it on and would Be ideal for you at the moment . If your on WhatsApp l could send you the photo shes sent me. Private message me if you like. SheilaFxxx

[27-359 in reply to Realistic]

Thank you.x

[Torian]

Sorry to hear you are struggling with breathlessness .. my sister had the same and although some was due to pleural effusion which she had regularly drained the underlying breathlessness was debilitating.

She had a very useful visit from a respiratory physiotherapist and also the hospiscare team visited and organised oxygen as support ( a machine with the longest attached tubing that meant she could move around a lot when using .

The biggest help was the advice to stop and breathe out as much as possible before doing anything , emptying the lungs so you can then take a deep breaths as you move getting more oxygen in .. ( instinct is the opposite to try and take a breath and these tend to be too small to expand lungs )

Hope you get some support x

[27-359]

Thank you. I will try the breath suggestion.

[Leniko]

I’m sorry this has happened. Carbo/gem left me breathless, my Onco prescribed Montelukast (singular). Ask your Onco.

[27-359]

I rather think that chemo induced breathlessness is different from lung cancer, but will see what the onc has to say.