Biopsy

Hu Bridgetb. Oh no fingers x it’s nothing. That’s right we usually can’t have radiotherapy in the same place. There are a few thoughts that because the treatment is so targeted it may be possible if in another area close by. Lyn mSophie66  has had radiotherapy twice with a gap of  8 years from memory it was still in the jaw area but opposite side.,

The next course of treatment could be immunotherapy which is having good results for many reoccurrences. .Keep,in touch and understand what your hubbys initial thoughts are   but please talk it over with consultant if the news isn’t good.,

Theres certain criteria to be met to have immunotherapy it’s all to do with PDL scores ask  hubbys consultant,if need be. 
hugs Hazel 

bridgetb said:

im sure i heard that rt couldnt be done twice in same area.

No it can't as it would destroy his jaw but it is possible if there is another cancer some distance from the original.

Hazel has mentioned immunotherapy which is something to discuss with his oncologist 

Let us know how he gets on, fingers crossed and hugs

Hi Bridgetb. I am so sorry to hear that your husband may have a potential new cancer. I had jaw cancer and in 2013 had a right mandibulectomy and 6 weeks of radiotherapy. In 2019 I had a new cancer in my upper left jaw and had a maxillectomy and another lot of radiotherapy. It is correct that you can't have more radiotherapy in the same area. I only had it because it was on the other side of my face and was very targeted. When I got another occurrence in my right upper jaw and had another maxillectomy I could not have anymore radiotherapy as I had my quota already on the right side. However all has gone well and I am doing fine although with a few challenges around eating. 

I would recommend your husband goes with your consultant's recommendations. I have and I am glad I did as I am still enjoying my life and new experiences. It seems tough at the time but is worth it. I was 59 when I started treatment and am now 71 so definitely lots of life after treatment. 

Best wishes to you and your husband.

Lyn

Hi Hazel , thank you so much for replying and its on the same side they reconstructed 2 years ago. I certainly will be asking the consultant questions and praying its not back. Its taken him all the time to get himself back to as normal as he can. The eating was the biggest issue because limited teeth but finally got him eating more normal food so i am hoping this doesn't set him back with that as he can be so stubborn. I dont give up though and what ever this is hopefully nothing we will get through this. Thank you xxx

Hi Dani , thank you and is immunotherapy like chemo where they hook you on to a machine ? Xx

Hi Lyn , thank you and remember speaking to you before. Its taken him 2 years to finally get him eating properly and he says its hard with limited teeth and he has salviation problems and said that makes it hard as constantly running. Gp gave him amtripatline ( excuse spelling as thats not right ) . This helped dry the mouth but caused him to have really bad mood swings and so aggressive which hes is not as normally very chilled. Fingers crossed this is just a precaution but am prepared if its not and been through this before so can do this again together . Hope your well xxx

bridgetb said:

Hi Dani , thank you and is immunotherapy like chemo where they hook you on to a machine

Yes but the infusion takes only 30 minutes. It's given every three weeks 

Although there have been some very good outcomes with the most common drug which is pembrolizumab it isn't curative. For those few who respond well it's given to keep the cancer stable. We have a forum member who is actually NED over a year after a two year course finished.

Hi Dani , thank you and gives us options if needed xxx

Hi Bridgetb. I am very well now thank you for asking. Just living my new normal but getting on O.K with that most of the time. I go through stages of very dry mouth and then sometimes a large amount of saliva that I have to wipe up constantly. It can be frustrating as your husband has found. Not sure which is worse the dry mouth or the overly moist one. Eating is much harder with limited teeth and good on your husband for getting back to a fairly normal diet. I'm afraid I have not achieved that after much trial and error. Still on puree and don't think that will change although I am getting a good repetoire of food sorted out now. Have you discussed with your GP the issues around the mood swings your husband has? Maybe there is another type of medication he could try. Maybe the GP does not have the experience around this issue and your consultant may have come across this issue more and have some different solutions. I know my GP has limited experience with my issues although she is supportive and tries hard. I get the best results chatting to my consultant.

Lyn

There is some research into using Proton Beam on a reoccurring site having had conventional RT.  The benefit is that it is much more targeted than conventional RT so it can minimise the subsequent damage.

There are a few current research papers (in trusted medical publications) that support this, but I am not sure how widespread the understanding of this in the UK is. UCLH seem to lead here, but it looks like private treatment rather than NHS.

Also this is an interesting article from where I was treated.  Not Proton, but was used to help someone with recurrence. 

www.uhs.nhs.uk/.../head-and-neck-cancer-patient-treated-with-innovative-radiotherapy-technique-in-uk-first