No treatment yet and mis diagnosis

Hi Sharon1 , your husband's condition sounds a wee bit like mine. I had tonsil (HPV) cancer that was treated with chemoradiation therapy. But within a year or so, lots of new tumours were found across both my lungs. At first they thought I had an aggressive new cancer, but tests then showed that cancer in my tonsil had in fact spread. 

I've recently finished a 2-year course of immunotherapy (pembrolizumab) and luckily I responded really well to treatment, and my tumours have either shrunk or have disappeared. I'm still stage 4 of course, but what was once a <1 yr to live diagnosis now has a much better prognosis.

If your husband has the right biomarkers, immunotherapy might help him a lot. But note that while Pembro has been a game changer for some people with head and neck cancer, it comes with its own risks, which can be very serious.  

With regard to the size of the tumours, if they are under 10mm, then they post little risk, but greater than 10mm, then they pose concern.

As your husband is relatively healthy, I think his oncologist should at least be checking that he has the right biomarkers for immunotherapy to work. That alone would be worth getting a second opinion on. 

I hope this helps. I Also kept a blog on what happened to me, and you can find that here (I"ve highlighted the post with immunotherapy only) https://ansmackay.wixsite.com/uclgeography/post/immunotherapy-the-revolution-in-cancer-treatment

Best, Anson

cc: Beesuit  

Hi Anson

Thank you so much for your reply .

I have read your blog too . It’s really helpful and informative. We were given the lengthy handouts about immunotherapy and it’s many side effects.

The oncologist did say he would be eligible for immunotherapy . I’m assuming a blood test he had determined that ?

He just said as the tumours have not grown significantly since May, it was advised to not start anything yet . He just kept mentioning not curative etc . It felt like he was writing him off but I rang the nurse afterwards who assured  me treatment would be offered should things change for the worse on his next scan (10-12 weeks time ) . As I mentioned the biggest of his tumours is 13mm,

Did you have any side effects with immunotherapy ?

Thank you again 

Sharon 

Thank you Anson. 
I’ll update the link in my lexicon you posted too 

Thanks Anson for a clear concise explanation. 

You are an inspiration to many of us. 

hugs Hazel 

Is there many side effects with immunotherapy, my husband is going to have it, hoping it won’t be too hard on him as he’s been through so much.

Hi, I think that for most people side effects are relatively mild in comparison to say chemo. Common side effects include fatigue after infusion, but also gut problems as well, maybe skin rash too. On the week of your husband's infusion, he will need to have blood samples taken to make sure his cell counts are OK, and he will likely get a telephone call to ask if he is OK with symptoms etc before being allowed the next infusion, At least that was my experience over two years. 

But, and there's always a but.... some people may experience a very bad reaction  to the drug, and may even develop what is called a serious adverse event. These can be severe enough to have him taken off the treatment. You will be told what to look out for by the oncologist. Here's a good list https://www.cancerresearchuk.org/health-professional/treatment-and-other-post-diagnosis-issues/immunotherapy-and-its-side-effects#immunotherapyaccordion1

So that part I'm afraid is not very predictable, but overall, it is not common.