Ssc lower lhs jaw prognosis

FormerMember over 5 years ago

2 replies
83 subscribers
1738 views

Diagnosed November 2018, extensive treatment chemo, chemoradiotherapy ended 3 May, cancer back within period of effectiveness after then. PET, MRI scan and biopsy further confirm recurrence. Months given but could be offered immunotherapy to extend to maybe a year or so. Surgery never an option due to size of tumour.

Scared atm, but plan have to be made and the world turns. 50 btw so feel a bit angry and robbed.

Immunotherapy-

1. Could take up to three month to take effect, if effective at all. Dependent on individual, side effects etc. Any other people's thoughts or experiences pls.

2. Quality of life must take precedent. Tumour aggressive and i don't know what i will be like if immunotherapy takes.on average 3 month to work if effective.at all.

3. Talking to social worker from McMillan tomorrow, who has been superb throughout my journey btw. Want to discuss palliative care with her and arrange wills through mcmillan. Anyone experience of this please?

Peoples thoughts and experiences and words greatly welcomed, plus anything I've not thought of.

Happily married with son 20 and daughter 17 for additional info.

Many thanks

Alan

Sunflowers15 over 5 years ago

Hi Tugwilson, sorry to read of your situation. My husband is in a similar situation, however a little further along in regards to treatment options. He has had immunotherapy - nivolumab after 6 months of chemo, surgery not an option to him, given incurable prognosis at diagnosis. He was given approx 3 months in Feb 2018 after immediate growth on finishing his chemo, the situation very bleak, he was in a bad way. Then he was offered nivolumab, we could see the benefits after its first administration and things improved from then. He was able to have it for two years dependant on growth and toxicology but after 9 months he developed a rare side effect to it hence it got stopped. Miraculously his cancer has now been stable for 9 months. Quality of life and side effects much much better than on chemo and quality of life now quite good, however he does still sleep a lot and tires easily, his body weakened from all the treatment. Macmillan nurse has been wonderful and has been there when needed in the past in regards to pain relief etc. At current not needed but we know who to call in the future when needed. Wills etc. All sorted not through Macmillan but a solicitor - not too expensive. I'm aware the immunotherapy does not work for everyone and when my husband was offered it I was dubious as he was so so frail and poorly at that time but we took on the view they wouldn't offer it unless they thought it had a good chance of working and they thought it was in his best interests. It worked so well for him, he wouldn't be here without it. It has allowed us to have more precious time together, he is in his forties, we have two children under 10 and an adult child, together since our teenage years. If you do decide to give the immunotherapy a go I hope it works as well for you as it has for my husband and gives you good quality precious time with your family. Again I am so sorry you are on this journey. Wish you all the best and good luck.

FormerMember over 5 years ago in reply to Sunflowers15

Hi Sunflowers

What a wonderful and upbeat story. Many thanks for your reply.

On that basis, it gives me incredible hope regarding the immunotherapy, and nivolumab is the drug suggested for me should we chose to go ahead.

Many things to think of of course in the meantime.

Thank you again and blessings on you and your family

Alan

More from this forum

Ssc lower lhs jaw prognosis