Hi all
I am wondering if anyone here has had Nivolumab? My husband's oesophageal cancer is now incurable, and he has secondaries in his lung. His lungs have a lot of fluid in them, and he coughs terribly, coughing up phlegm etc.
He is restarting treatment on Monday, but we are a bit confused about what is being planned.
He was originally (2 wks ago) consented for chemo treatment with Carboplatin, but then when he went today for the prep discussion, he was told he was going to have Nivolumab. We are confused as to whether he will have having both drugs (his treatment booklet only mentions Nivolumab).
Nivolumab seems to be associated respiratory infection (he was also told this today when they were consenting him for it), but it seems mad to give him a drug linked to respiratory infection when he has lungs full of fluid and is coughing up large amounts of phlegm already?
I know the only thing to do is to talk to the unit and to get clarity about what happened to the plan to give him carboplatin. Has the plan changed, and why? Or will he have both?
I know no one here will have he answer to these questions, but if you have had experience of Nivolumab, esp if you have secondaries in the lung, I would be very pleased to hear about your experience.
Thank you in advance
Hi Creina
How has the treatment gone today, did you manage to get any answers to the questions you asked above?
My husband is on a different immunotherapy drug, he has secondaries in lung, lymph nodes and liver and he has reacted well to it. But I don't know enough about Nivolumab to make comment here.
I do hope that he is doing ok, and that the treatment was agreed if appropriate and went ahead as planned.
Lowe'
Hi Creina
So pleased Dal's story gave you some hope, please feel free to message if ever you need to.
It is understandable that your hubby will feel tired after his treatment, and as much as possible it would be good if he can force himself to do a few bits, even when tired. I know that sounds strange, but Dal is convinced that it stops him being miserable... maybe that will be the same for your husband if he ever begins to feel low.
Dal does not have the "heavy phlegm and fluid" that I know some people experience with an OC diagnosis, he has occasional phlegm and he has a current inflammation on his lungs which we hope won't be too of a negative, this causes a little more coughing is something that we are working on ourselves whilst waiting on the call tomorrow to find out exactly what it is and what they are going to do about it. What do you have in place to help your hubbie with his?
We have not had a palliative care assessment, I don't know whether we should have done, or what they involve.... but I hope that it was of benefit for you and your husband.
All the best to you both also, fingers crossed his treatment starts to quickly help him feel at least a little better to begin with, then go from strength to strength.
Thinking of you
Lowe'
