Hello from someone Stage 4 GEJ cancer undergoing treatment

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Hi, 

I'm new to posting here but have been lurking for a while since being diagnosed back in November last year. I just wanted to introduce myself Slight smile

I have stage 4 cancer at the gastro oesphagusus junction and that had spread to liver, lungs and lymph nodes by time of diagnosis. I had no symptoms until about 2 months beforehand, when I started getting back pain and then some bouts of reflux. The doctors seem to think that being an otherwise fit and healthy 39 year old helped my body cope until the advanced stages of the disease.

I had 6 rounds of CAPOX on a 3 weekly cycle which I found tough with nausea and fatigue, especially the last two cycles. I am also eligible for immunotherapy due to PDL-1 status and have Nivolumab. At the end of the 6 cycles I was shown to have a partial response, with the lungs and primary tumour in the oesphagusus basically being clear and my liver showing some reductions. 

I am now on "maintenance' Nivolumab and a scan last week showed stable disease. However, I've started to notice an increase in pain over the last few weeks, which seems to be my body telling me differently. Immediately after chemo stopped I was largely free of pain, but it is now quite pronounced in my back and chest again.I'm hoping to talk through this with my oncology team on Friday.

Good luck and best wishes to everyone else on their journeys through this cruel disease.

  • Hi Jaypoole

    I am sorry to read of your diagnosis, but wanted to welcome you to the forum, as difficult as it can be, I am pleased that you have reached out here.. I see you also posted on another page, and have already had a response. 

    I think you are right to be concerned about the increase in pain over the past few weeks, and it is important that you speak to your MDT, give your chemo nurse a call and let them know what is going on with you.   

    Do you know which type of cancer you have, is it an adenocarcinoma? 

    It is encouraging to read that you are able to have immunotherapy under PD-L-1 status, this is likely to offer you greater success if you are able to cope with the treatment they offer.  Do you have a picc line or a portacath for your treatment? 

    From your post, I have not been able to determine whether you have any problem with food, but I was wondering whether you had looked into foods with antioxidant properties?  

    I have a blog you can read if your are interested, you can access it by clicking on our picture and clicking on the Facing the future together link....  to get the full story you have to read from the last page as the newest post is always on top. 

    My husband who is HER2 positive, but was originally told that he negative, has been living with his incurable condition since May 2000... There is always hope, and I wish you every success. 

    Lowe'

    Call the helpline for free on 08088080000, 8am to 8pm everyday.
    Tomorrow is not promised but it always has potential. Aim for your potential!
  • Dear Jaypoole84. When you said you have been ‘lurking’ for some time, it really struck a chord with me as I was very much the same when I was initially diagnosed last May. I kept in the background for a long while. However, during this time, I found the various posts very beneficial as it made me feel I had a connection with people who I didn’t know, but understood. I also had minimal danger signs (swallowing food felt uncomfortable but only happened occasionally). 
    I hope you are okay. It is great that you have had a good response and are on ‘maintenance’ and I hope that you can get reassurance on Friday. Good luck and keep on posting. With best wishes, Julie 

  • Thanks Lowe and Juie for your welcomes and it's nice to meet you both. As you say, it's great to talk to people who have some understanding. I will definitely check out the blog.

    My cancer is an adenocarcinoma and all my treatment so far has been through a canula. Currently it is once per 4 weeks. 

    I have never had any swallowing issues to date, with my tumour growing outward rather than blocking the oesphagusus. I now notice some minor gurgling in my throat and stomach on occasion, but I'm not sure if that was present before. I haven't really adapted my diet, apart from now taking a vitamin D supplement and turmeric and ginger shots that my wife makes for me.

  • Hi Jaypoole84

    My husband has had more back pain since chemo 5 and he suffered bad with fatigue too, I wonder if it's to do with the body being battered from chemo, my husband was hoping the back pain would get better after chemo stopped.

    Let me know what your oncology team say on Friday.

    Angie