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Lymphangitis carcinomatosa

5 REPLIES 5
BoxerMum
Member

Re: Lymphangitis carcinomatosa

Kate

 

I'm so glad that you had a positive hospital experience and that they got plenty of fluid off.

My drain no longer produces any fluid so I want to ask about having it removed because it's just a potential source of infection. 

It sounds as if you're doing really well and you don't sound low to me. I understand your tearfulness at not being able to do anything, especially when we've been so active in life before all this. 

Stay well, Alison x

kater4
Member

Re: Lymphangitis carcinomatosa

Hi Alison 

I am back from Guy’s hospital now and have a drain in situ.  They managed to drain nearly 3 litres from surgery and post op and then another 400 mls before my discharge so they have left it in for the District Nurses to manage any further drainage.  The consultant said that they hope that as my lungs are kept drained then the lining will stick so no pleurodesis procedure as such.  I was hoping to be coming home a new woman health wise but now know to expect a long and slow recovery for my lung.  So I am tearful again this morning as I feel sorry for myself as I can’t do much at all indoors or out.  My husband is very pleased I am home but to be really honest I was happy in the hospital.  It was a lovely ward as hospital wards go and I had plenty of company as well as privacy if I wanted it.  I enjoyed not being the only sick person around and I could look after the other ladies.  My husband is wonderful and supportive but he does fuss over every cough or twinge I have and he is going to be out at work all week anyway.  

the consultant said she does not know what caused the pleural effusion.  It could have been the steroids I have been taking for the undiagnosed (?lymphangitis).  She said there was no obvious signs of infection or cancer that she could see but will wait for biopsy results to find out.

 

sorry I sound so low.  I am always worse in the mornings and I don’t want to be telling my husband that I would rather be in hospital than home!  That would be awful wouldn’t it?

 

wishing you well yourself 

 

kate x

BoxerMum
Member

Re: Lymphangitis carcinomatosa

Hi Kate

I hope you have had your procedure and all has gone well.

When I first had the drain (around September) it was quite painful for around a week but since then I don’t really notice it that much.

I was in hospital in November for a drain where they inject drugs in through the drain (sorry I forget what it’s called!) to breakdown tissue & release the fluid from the effusion. They got around three litres off me and have since been on steroids & now capecitibine and my lymph area and breathing have improved.

I had my cape dose reduced again last week (on account of my ever decreasing weight) but have felt better since and seem to be able to eat a bit more. 
I think if they get the dosage right it makes a big difference. So I know exactly what you mean about feeling rotten & wanting to cry. 

Let me know how the pleurodisis goes when you get a chance.

Alison x

kater4
Member

Re: Lymphangitis carcinomatosa

Hi Alison 

 

thanks for getting back to me.  Since I first posted I have completed 2 cycles of capecitabine but had to stop as I developed pleural effusions that needed intervention.  I am currently waiting to be admitted to have drainage under GA +/- pleurodesis and may need a pleural drain left in.  Should be happening Thursday.  Very encouraging to hear that you are surviving the statistics!  How do you get on with the pleural drain?  How are you doing in yourself?  I am usually a fit and active person and it makes me cry how poorly I feel right now.

 

kate x

BoxerMum
Member

Re: Lymphangitis carcinomatosa

Hi

I was diagnosed with lymphangitis carcinomatosa in Jul 2020. I agree it’s difficult to find much info and any news online is grim.
I was reading about a prognosis of 3 months and each month that passed I realised that was probably an out of date  statistic.

I am currently on Capecitebine and feel my breathing has improved and I’m waiting on a scan to confirm if it has shrunk the lymph involvement. I have a semi permanent pleural catheter in my left lung to keep my pleural effusion to a minimum. I’ve also had double pulmonary embolisms so am actually amazed I’m still alive given the 3 month prognosis I was expecting!!

 

I hope you are now receiving treatment that is working for you, please let me know how you’re doing if you can.

Best wishes 

Alison

kater4
Member

Lymphangitis carcinomatosa

Hi has anyone had experience of lymphangitis?  I have been under the respiratory team for symptoms of shortness of breath and intermittent chest pains worsening since March this year.  In the meantime SBC diagnosed in my chest wall and probable in my right supraclavicle lymph node ( diagnosed September). The respiratory team always dismissed the possibility of my chest symptoms being due to cancer and I was given antibiotics and then steroids for a diagnosis of organising pneumonia.  These drugs have had no effect and now the oncologists are involved it looks like the opinion is that my chest symptoms are indeed due to cancer.  I am due to start capecitabine in a week or so and hopefully this will help.  The possible diagnosis my oncologist mentioned was lymphangitis carcinomatosa.  I have googled it and it looks grim.  I am triple negative.  Has anyone got any experience of this?