Good vibes

Good vibes indeed, and it is  good to hear he is doing so much better now. Things at times do seem to take a long time in getting better, but our body does have a lot to repair and get over.

Regards Ray.

Lovely news ricoshay! Firstly no need to apologise at all, we are here as and when needed, glad your OH is doing so well. Guinness sounds like a great shout (in moderation obviously), wish someone had suggested that to me.

Good luck with the PET, sure all will be well and great you had a good experience with the team in your area. We are very lucky that "bad" news in our little section of the community is rare, plenty of niggly nasty stuff which can't be underestimated but proper bad outcomes are very much the exception rather than the rule.

Onwards and upwards to you both.

Hi ricoshay

well done to both of you for getting through it all 

it’s a long slog but daily baby steps get you there  

keep fighting and keep well  

Good evening ricoshay, as Mike says no need for apologies as we all know on here how time-consuming and difficult this journey can be, so well done in getting through it all as I,  remember what a struggle it was for you both. Must say I have enjoyed a few glasses of Guinness, my mum once told me that stout was encouraged as it added iron? Not sure about today's doctors, but I always did what my mum said :)  we are pleased the community helped and was of some use to you, we will be here if you ever need us in the future. Fingers crossed for Mon and Wed, best wishes, take care.

                                                                                                Chris xx

I can confirm what Chris says about Guinness - when my mother first qualified as a midwife in the late 1950s, it was still prescribed to nursing mothers because of the high iron and B vitamin content!

Glad to hear you OH is doing well and feeling much better. I can empathise as my OH is just over 13 weeks post treatment chemo radiotherapy for oropharyngeal scc with a large lymph node. Sounds like we had a similar journey so I know it’s not been easy, also like your OH still have issues this end with dry mouth and all the similar side effects that people report on here. 
 We are waiting for post treatment MRI results in fact hoping to get a call from the specialist nurse later today to feed back from the MDT meeting they are having now!!! Has a bit of a shambles of a follow up appointment on Wednesday when we saw the oncologist who said she couldn’t tell us anything as the scan report wasn’t back! So waiting for a verdict today!

hope the scan and results goes well at your end , good luck!

L

Good news Bluebird. It’s still a devil waiting for those results isn’t it? Fingers crossed. I had an MRI at 12 weeks as well but the results weren’t reported to my oncologist by the time my next appointment rolled up. I had to sit there while he told me he’d looked at the scan but the report wasn’t back. I could have strangled him! So he said, “Have a look at the scan and see what you think?” So we looked at it together and the tumour was gone!

Thank you that Sounds very similar!!! Enormously frustrating!

Now been told today that the primary is gone , which we are very happy about! However the lymph node has question mark over it, they are not sure if it is necrosis or still active cancer in the lymph so now having a pet scan at the end of December to try and work that out! Fingers crossed the cancer is gone and it’s necrotic, they said the necrosis self resolves if it’s just that, anyone else had that experience?

L

Hi Bluebird. Yes - I had the same! The waiting is agony. The MRI often doesn’t show complete response to treatment at 12 weeks - there is frequently “uptake” of the contrast dye injected into the lymph nodes of the neck. especially HPV +ve cancers which are more likely to have a better outcome but are slower to show the response. The Oncologists know this, but don’t bother to explain to us!

So here’s the information I wish I had had before I walked into the room to get my MRI “result”,12 weeks after treatment, and which may be helpful to you: - “although the vast majority of tumours respond well and you are likely to have no further disease, there is a roughly 60% chance (yes you read that correctly)that the MRI won’t show this at 12 weeks! “ You are then sent for A PETscan which is far more likely to confirm whether cancer is still present or not. By now you are shattered with worry that the treatment hasn’t worked right? Well please dont be. The odds are very much in your favour, but the communication skills of many MDT members are poor. They have no understanding of the fear & emotion that patients and families suffer when there is uncertainty.

So enjoy your current situation of primary definitely gone, and the likelihood that lymph nodes also fine - they just don’t show it on MRI, but the PET is highly likely to confirm.

Hilary

Hilary

Thank you!!! That is so reassuring to hear and you are so right, they clearly don’t understand the enormous turmoil you are in having got to that point at the 12 /13 week follow appt to get the results . We finally got in to see the oncologist after 5pm on Wednesday to be told they couldn’t give us the results as the report wasn’t back, I could see the scan on the screen and having a bit of experience at looking at scans, although definitely no expert, I could see a worrying feature , which I know now to be this lymph node they are questioning. 
so we left in utter turmoil and then finally got the result from the nurse yesterday afternoon. Rollercoaster doesn’t begin to describe what we’ve been through the last few days. 

really reassuring to hear you had the same , really appreciate you sharing that information. And yes it was HPV 16.  So everything to hope for now, 

L