Immunotherapy

Hi Michael,

That sounds really encouraging. Have they booked you in for a scan prior to seeing the oncologist? 
I like Dani’s idea of measuring the node.
I don’t have anything visible to measure but  I’m booked in for a scan on 28th Nov. This will be a few days before my 3rd cycle of treatment.

I had my 2nd round on Wednesday with the combo injections in my both my legs. Talk about make your eyes water! I’m only just managing to walk around this morning without immense pain. It feels like I have hot concrete slabs in my legs so it’s been rest, ice packs & paracetamol for me. No pain no gain I suppose/hope?

As for the Cemiplimab, I’m the same as you and remain side effect free at the moment.
Stay safe,

Fi

little-fi said:

had my 2nd round on Wednesday with the combo injections in my both my legs. Talk about make your eyes water! I’m only just managing to walk around this morning without immense pain. It feels like I have hot concrete slabs in my legs so it’s been rest, ice packs & paracetamol fo

Crikey that sounds challenging ! 
I hope you get to feel better soon. 

Hi  my husband is about to start with the same drug after neck disection and then scc tumour removed from tongue just been told its back in the other side of the neck and on spine and lung ..my husband is also trialling the hpv16 vaccine along side the cemiplimab

Hello Cissy, sorry to hear your hubby is going through this again. The side effects for me remain minimal.  At the beginning I had a little stiffness in my arms/shoulders and the HPV injections were painful so the Oncologist thought I had the real deal and not the placebo. I do get a little tired. I'm just over half way through.

I wish your husband well.

little-fi 

Thank u ..I have been reading about the cemiplimab it has shown good results so feel so much better than we did this time last week ...so is yr cancer primary or secondary and am I right in saying yr tumors have stopped growing? my husband had the secondary removed first as they couldn't find primary ..then primary showed its face so that was removed so now the 3 new lumps neck spine and lung have spread thru lymph nodes it has not responded to radio or chemo previously so this is why he is on the trial we just hope he gets the real deal of hpv16 alongside the cemiplimab

Hi Michael I'm waiting to start Immunotherapy too following a recurrence of my oronasalpharyngeal cancer. 

I haven't had a start date yet but maybe we could go on this journey together ?

I've heard of amazing results for head and neck patients, let's hope that's how it goes for us.

Trish xx

Sorry Michael, just noticed your post was a year ago, how have you got on xx

Hi tilly ...yr cancer position sounds horrendous so sad to hear its back fir u too...r u starting on cemiplimab is yrs hpv related too ? 

Hi Cissy, Primary was in my tonsil in 2014. I had chemo/radiation and was cancer free until a routine scope 18 months later gave the oncologist concerns. Ct scan confirmed it was back with a vengeance. 10 hr op to remove back & right side of throat and base of tongue in Sept 2016. Feb 2020 Ct scan showed tumour in right lung. A long story but bottom line was that because of Covid I was lost in the system caught between 2 hospitals and during that time it had grown & also spread to lymph nodes in the centre of my chest. Surgery was no longer an option.

I started Cemiplimab a year ago and tumour had shrunk considerably & was stable until last couple scans showed it had started to grow again. I'm now in the middle of having radiotherapy in the hope that it will reduce the tumour and nodes and kick start the immunotherapy again. They're are still pleased with the results and said it's just a blip!

I'll be glad when the radiotherapy is over - last day next Tuesday. 

I hope your husband gets the hpv vaccine too! 

little-fi x

Good luck Tilly mint 61 with your immunotherapy when it starts. 

little-fi x