Lymphangitis carcinomatosis

Hi 

I’ve just been diagnosed with the same thing and absolutely  devastated. I’m 53 and had breast cancer in 2017, mastectomy then chemo then tamoxifen. I noticed small swelling in my armpit sept time and then breathlessness over last month or so. But  X-ray and bloods came back clear so wasn’t to worried. Then had breast check up and the full horror came to light after a scan. I started chemo last Friday and now booked in every week on pactlitaxel until further tests are back. Can you let me know what treatment plan you are offered. I read online that Eribulin is a chemo regime that’s works so I want to talk to my onc about this. 
the whole thing is a nightmare, just constantly worried for my family, kids are 19  & 16...

I hope you’re coping ok in the circumstances...xxxx

ang x I’m in london

Hi Ang, I’m so sorry, it really is scary isn’t it? But I reassured myself that there are many, many treatment options for us these days. I have been really well on my treatment so far and I know my doc will do her best. I’ll let you know how I get on tomorrow. Sending love and hugs xxx

Debra

Hi,   I was diagnosed with lymphangitis carcinomatosis around the same time - Nov 2020 and also absolutely scared of what lie ahead.  It is currently just in my right lung with no sign of spread yet .

I was first put on capecitabine but taken off it because onco thought it was causing heart issues .  Now on Palbocicilib with monthly hormone injections .   Although the Palbo (Ibrance) has helped stabilise me I am still coughing and wheezing.   Have had BC since 2011 with 3 local recurrances ( which apparently is unusual) - mx no reconstruction, but now its gone into the lymph nodes of the lung .  

There doesn't seem to be a clear picture of how to treat this - onco keeps saying that when one drug stops working we switch you to something else and there are a lot of new drugs coming onto the market .  However, I;m not full of confidence as this seems quite rare and outcome not good .

I;m 56 with girls age 18 & 20  and would love to hear from anyone going through the same diagnosis .  X

Hi HeidiW, a recurrence is always scary. I am also on Palbociclib (and Letrozole) and my situation is similar to yours. In Dec. 2020, I was diagnosed with  secondary breast cancer in my left lung (with pleural infusion= liquid in the pleura) and in the lymph nodes. I too was told that this treatment usually works well and that when it stops working, there will be something else. I chose to believe them, although at night I am often anxious. I am 60 with two grown up children and was hoping to live well into my 90s!

Hi. So lovely that you reached out. Despite fighting this for 10 years I’m a newby to the forum.
Have your symptoms improved since you started on palbo?  I’m tolerating it well but not the improvement I’d hoped for and think the anxiety and stress adds to the SOB  

X

Hi HeidiW

sorry to hear you’re also going through this diagnosis. Since my post in Nov 2020, I had 5 cycles of pacitaxol and my lungs are completely clear now thankfully. All signs of cancer in lung has gone according to last scan.  I have now moved onto Letrozole and palbociblib and my tumour markers are still decreasing although I still have small swollen node in armpit but this is still decreasing as well. I’m praying that this drug combo keeps working as long as possible. 
I think we can only trust in our Oncologists and have faith in the drugs working...which they are for you, so this is a good thing. But  I completely understand your worries.....it was definitely the worst winter of my life...

Take care and let me know how you’re getting on

A xx

I just finished my 4th cycle of Palbociclib and so far far it doesn't seem to have had an impact. After decreasing over the past two months, the liquid in my lungs has actually increased and the cancer markers haven't decreased. Wonderful to hear from madds14 that it can work so well. Let's hope!

Hi Madds14 and Veronique,   I feel much less alone with this already - thanks .   After my heart problems on the capecitabine my onco put chemo on the table - gem carbo - but having been through chemo twice already with v bad side effects I lost the plot so they switched to Ibrance with Falsodex injections . 

My main issue is that they were not convinced it was the cancer back but a viral pneumonia plus a blood clot on the lung plus palsy of the right vocal chord.   Have been referred to Respiratory to have a look and neither respiratory or oncology are not 100% sure .   Can you tell me exactly how your onco diagnosed you both and did it take a long time ?  my cancer markers were not up and I have no tumour just the coughing and SOB

I was warned tho that the Ibrance would take at least 3 cycles for any improvement.  So hang on in there Veronique as i think I have improved on the Ibrance but not as much as I had hoped and slowly .   

Also very very reassuring that the Taxol drastically improved your lung Madds14 - how did you cope with this chemo ? The Palbocicilb has been very easy to tolerate and I too am hoping I can be on this for a while now .  Yes, this winter has been testing to say the least.

Take care and look forward to hearing from you .  Heidi

"Interesting" that they are not sure it is cancer...I guess that might be good news? In my case it was clear as they did a biopsy and analysis of my pleural infection (water in lungs) and they were both cancerous. I too find Palbociclib OK - am just easily tired, have very dry skin, thinning hair and a constantly dripping nose (not sure why), but nothing compared to the FEC chemo I had before. Hang in there and take good care.

Yes, interesting but frustrating - I think because of my history they are more in the onco camp. Plus I think that after such a long time ( I started with symptoms last March just as Covid kicked off ) it can't plausibly be anything else.   Made me laugh re the dripping nose - mine hasn't stopped dripping for about 8 weeks plus also very tired. 

I make sure though that I get proper sleep and keep my anxiety down which I am positive helps the breathing and coughing - my breast nurse lets me have free access to sleeping meds ......  

I am definitely hanging on - it has given me a boost being in touch with you ladies .  X