Nivolumab immunotherapy treatment

That is very reassuring. Fingers crossed for a good result. Thank you for sharing xx

Hi there...sorry to hear your husband has joined the club and hope you find the information that abounds on this forum helpful.

My husband was diagnosed end of January 2022 out of the blue,  with T4 N3 M0 cancer of Hypopharynx ( wrapped around a carotid artery in his neck ) and could only have a small dose of  palliative radiotherapy to, hopefully,  give him an extra few months to live. Original prognosis was a few weeks! 

He then became a candidate for immunotherapy ( Pembrolizumab) and has had 7 infusions so far ...6 weeks apart. He did notice swelling in the cancer area (but no pain) after the initial infusions but this has gone now. He does describe his neck twitches where the cancer is,  after the infusions. He has also experienced some mild  neuropathy in his fingers. Otherwise he is lucky to have no other affects. He looks well and  eats fairly normally.....does find swallowing softer foods easier and has to grind his medication ( previous condition) to take with milk.   So in some ways feels lucky he had no surgery or chemo. He uses a nebuliser ( 2 or 3 times a day)  to help break up phlegm in his throat and finds this helps. 

So even though his consultant has been loathe to indicate any reduction in his tumour,  he has seen fit to ok the ongoing treatment. We feel lucky that immunotherapy has given us more time together and will take any extra months available......an extra year so far!

I hope you had a good result from your last consultants appointment.

Hello Mynydd

thank you for sharing your husbands experience. It’s great that it has given you more time together. Long may it continue.

As an update to my husbands journey, After the first infusion of nivolumab 5 weeks ago, my husband had 8 days of mild diahorrea, and some swelling in his face, throat and tongue, on the left side where the cancer is. The swelling hasn’t got any worse, or any better. The consultant said it’s impossible without a scan to know if the swelling and pain are caused by cancer progression, or it could be from the radiotherapy treatment, lymphoedema, or immunotherapy could be causing it. They didn’t see the benefit in scanning until he has had 3 or 4 infusions of immunotherapy. The swelling means he can’t eat any foods, and is only living on Fortisip drinks, but thankfully his weight is holding steady. 

Last week he had his 2nd infusion, he has one every 4 weeks, and no side effects. In some ways you do worry that there are no side effects as I have read a couple of reports that those who do have side effects get better results, but equally I’ve read other reports where there have been excellent results without the side effects. So until there is scan, after the 3rd or 4th treatment we won’t know. Unfortunately he still has pain on the side of the cancer, the left side of his head/face, so this is difficult to deal with and a worry that perhaps it’s not working. I tell myself that maybe the pain is caused by antibodies attacking the cancer, but no one seems to know, or is willing to commit. The pain is proving difficult to get under control and he gets very little sleep despite having morphine and Pregabalin. In some ways it’s still early days for the immunotherapy treatment so we keep optimistic that a corner will be turned soon. I hope the first indication of treatment working is pain reduction as that would be a great improvement in his quality of life. On a positive note, a test was carried out on his initial biopsy, to see if his cancer may respond to immunotherapy and it had a score of 40. Apparently if the score is between 0 to 20, it is less likely so fingers crossed. I’ll let you know. 

Thank you to everyone sharing their journey as it is a great source of information and very reassuring.