Lymphangitis carcinomatosis

Me too! It's good to be connected.

Hi ladies

i was diagnosed when my breathlessness coincided with a routine breast check up...after CT they diagnosed spread to lymph nodes and lung with LC. Not my best day! 
only starting my 2nd cycle of palbo but it seems ok at the moment...fatigue in afternoon usually and dripping nose as well sometimes! 
Two of my liver function bloods jumped up last blood test so my onc reduced me to 100 mg tablets but she assured me this does happen and we’ll have to see how it pans out over coming weeks/ months...

it is a rollercoaster...I just try to block out the negative thoughts as much as possible

take care and keep in touch x

Madds14 - might be that your liver has taken a hammering after the chemo and hopefully it will all settle down - its very very hard especially with a family who are so worried - but they rely on us to keep positive - and we must 

yes, please keep in touch XX

Just an update to let you know my breathing improved dramatically once I started a new treatment. It was a clinical trial of Fulvestrant plus either capivasertib or placebo. I felt great during February and March and CT scan showed the cancer in my pleura was decreasing and the lymphangitis could no longer be detected. It was great news.

Sadly the April scan showed new spread to my liver so I was taken off the trial and i’m having carboplatin chemo starting today. It’s hard to believe as I feel so well at the moment. 

As you say we have to put our trust in our medical teams. I always ask a lot of questions and they are very happy to answer them. 

My daughter is coming to stay with me in case the side effects are bad. It will be so lovely to have her here. Take care all xx

just read your update Moodyblue -  wishing you all the best and really really hoping that the chemo gets on top of this, that you get some respite from the constant battle  and you don't suffer too much .   Is it just Carboplatin or with something else ?   Please let us know how you are getting on .  

To me what is so frightening about this is the speed at which our situations change along with the treatment .

Take care - thinking of you 

So sorry that it has spread to your liver after you had done so well, Moodyblue.  It is such a roller coaster we all are on, isn't it?  Really hope that the chemo will do the work. My pleural infusion has increased over the past few weeks in spite of the chemo, so I am bracing for bad news...

Take good care.

Hi - sorry I haven't been on the forum for a while and I;m wondering how you are all getting on ?  Veronique M / Moodyblue Madds14 .....

I;ve had a bit of a rough time - the fluvestrant / Ibrance stopped working and onco team were a bit slow getting me on something else.   Started on Paclitaxel but caused pneumosis .  Now on Eribulin but to my mind not much improvement .  

Keen to know what treatment you are all on ?

Heidi X

Hi

I’ve recently, last week, been diagnosed with lung cancer in both lungs and possibly on my spine too and I’ve not been officially told but I’ve seen on my scan results that they’re also saying I have LC too. I’m terrified I can’t be helped but your reply here has given me a small amount of hope. I had no idea I had anything at all except for the fact I’ve been wheezing since an infection in October. 

I'm still waiting for my respiratory specialist appointment to find out more and the waiting is hard. It hasn’t been long but it feels like weeks already. Take care, I hope your meds continue to work for you, Jools x