Initial treatment not completely successful and no longer curative

  • 17 replies
  • 36 subscribers
  • 1403 views

Hi, sadly my husband’s post treatment PET scan result showed cancer remaining in neck lymph gland and 2 lesions in the liver have been highlighted. Nothing picked up in liver previously. Primary back of tongue had gone and some neck lymph glands reduced or gone. 
Uncertain future with further chemo to hopefully shrink or slow growth, not the result we hoped for. Husband was otherwise fit and healthy 53 year old,  I am wondering if anyone else has had similar results following the initial chemo / radiation treatment and how you are getting on. 


  • Hi   So sorry things have turned out this way. Have you asked about immunotherapy? There have been some good results. Anson is a member here though he doesn't post much any more. He has done OK on immunotherapy and has a blog about it https://ansmackay.wixsite.com/uclgeography/blog It might be worth reading

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi thanks for replying, immunotherapy has been mentioned but he’s not sensitive to a PDL 1 test that was carried out. Not completely sure what this means. The chemo he’s having is Carboplatin and Fluorouracil just hoping it does its job. Really positive reading Ansons blog, they have mentioned immunotherapy after chemo so trying to be positive just hard getting over initial results. My husband is looking the best he has, eating and drinking more or less back to normal after initial treatment last Aug/Sept and slowly gaining weight after losing 3 and 1/2 stone. 
    Thanks x

  • Good luck to you both. Let us know how you get on if you feel up to it 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Good luck from me as well. Am sure if yiu. Messsfe Anson via tge blog he will answer any questions yiu may have. 
    Hazel xx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi! We have just had results back too showing cancer remaining in the neck and lymph glands. Hubby had treatment June 2022, chemo and radio therapy. This time last year we were told all was looking clear. Today just been told it’s palliative care with immunotherapy. Because of where the cancer is there is no hope for surgery so just hoping the immunotherapy keeps it at bay. Meeting with the oncologist next week so keeping everything crossed 

  • I am so sorry to hear that, it’s so hard finding out when they have been through so much with the initial treatment. I’m hearing good things about immunotherapy so hope it goes well. Stay strong and let me know how he gets on x

  • My husband is in a similar position. It has come back at the base of his tongue despite surgery, chemo, radio. He’s about to start cisplastin, flouracil and cetuximab. He’s in so much pain currently so I’m just really hoping that it starts to shrink it and he gets some quality of life back. I’ve asked for a second opinion/referral to Royal Marsden as I think they are trialing/using a newer immunotherapy drug. We’re only in our early 40s with two young children so praying for a miracle to be honest. I hope your husband responds well.

  • So sorry to hear you are going through this. Will keep you both in our prayers 

  • Hi Daffodil24 Sorry to hear about your husband . I am in a similar position as your husband , I had been given all clear in 2021 after treatment all clear again after neck dissection which they couldn't remove all the cancer in 2023 , Now back in neck, tumour 8.5 cm in  liver and both  lungs . Besides all that I am fine  as just had my second chemo and one more to go before they scan me and say yes or no to continue  or just go home . The oncologist did say usually they would just send me home but because I am fit they are treating me with Chemo same as husband. The idea is to shrink or stop the tumours please God All the Best Regards Minmax

  • So we had the meeting with the oncologist today. Hubby will start immunotherapy, he will attend once a week every three weeks with a view to keeping the cancer from growing/spreading. The treatment (pembrolizumab) will last for up to 2 years or for as long as it is effective or he can’t take anymore. The list of side effects is pretty long but mostly everything on it can be combated with other drugs. This time three years ago he never even took paracetamol and now facing cocktails of drugs! He has also been given the option to be part of a study for BNT113, some sort of vaccine that would run side by side with the three weekly treatment. Because he isn’t in any pain and his quality of life isn’t impacted at the moment there isn’t the same urgency to start the treatment unless he does the study in which case they will want to start as soon as possible. 

    either way, not sure what happens after 2 years and didn’t think to ask at the time! Back next week for the treatment schedule then it’s a case of keeping everything crossed!