Lynch Patient w/ Stage IV Met to Lymph starting treatment w/ nivolumab (Opdivo)

wheresgrant
wheresgrant Member Posts: 8
edited December 2019 in Colorectal Cancer #1

Hi all... it's my first time posting here and 4 months ago I thought I would never be on a Cancer Forum again posting a diagnosis... but here I am. 2nd time colon cancer battler (the first diag was Oct 2009 Stage IIIC spread to 5 lymph localized. Last Spring my mom got her 2nd diagnosis in 26 years. She's 75 and thankfully she had a small Stage I tumor. But she was diagnosed with Lynch as a result. They got me to a colonoscopy fast. My first diagnosis was 10 years ago at 39 and caught me off guard. I had a left-hemi partial colectomy... and started 12 round of FolFox 6 (oxy, leucovorin and 5-FU). It took me years to recover but I kept up with my scans and checkups. It was advised I'd get a colonoscopy 1x every three years and then 2 years and then move to a 5 year schedule after 7 years cancer free. That was the plan and I stuck to it. Imagine my shock and dismay when I came up positive in July. My last colonoscopy was Jan 2016. In July my CEA level and scans looked good (CEA was 2.4 and scans showed nothing remarkable). We waited a month to run some additional tests to see whether I could still support some colon. Everything looked good and we scheduled a resection for early Oct. 

 

However, scans and bloodwork prior to the surgery showed something alarming. In 6 weeks my CEA jumped from 2.6 to 6.7 and two retroperitoneal lymph nodes increased in size. I had surgery a week later... the pathology showed 13 out of 21 nodes positive. And two of the retroperitoneal nodes were positive. But the margins weren't clear. My oncologist a specialist in MSI-H HNCCP Lynch Syndrome.  She suggested that Folfox6 is impossible for me... from a resistance standpoint and of course damage. So she's suggested to start on immuno therapy: nivolumab (Opdivo). I have the 1st round next Tuesday, the next in round in late December and then I'll start 1x per month for 2 years. The assumption was there are no mets anywhere on my body but I certainly have cells growing inside. Yesterday I tooka C-Scan and now it's spread to 8 retroperitoneal lymph nodes. 

 

I have more I can share.. I just wanted to see if there are other Lynch survivors here and see what treatment was like? Especially ImmunoTherapy like Nivolumab or KeyTruda I'm optimistic but I also understand the challenges I face.    I'd like to be aware of the complications that may lie ahead

 

Thanks-Grant

 

 

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Welcome Grant

    I am so sorry to read your post.  Recurrance is such a gut punch, and after so long, it must be even worse. 

    I know we have members who have posted abou Lynch, so I hope some show up soon to offer support.  I just want to welcome you here to the forum that nobody wants to join.  I hope between surgeons and Oncologist, they get you sorted. 

    Stick with us and we will stick with you. 

    Tru

  • wheresgrant
    wheresgrant Member Posts: 8
    #3
    Thank you so much for your

    Thank you so much for your warm welcome. I've learned so much over 10 years some the hardway... I'm happy to be support to others as well. 

     

    The interesting thing to note is that this is not a reoccurrence. My oncologist corrected me about that.  It was my assumption that both my mom and mine were reoccurances.The unfortunate surprise of Lynch is that my first cancer was cured. This is brand new cancer. With Lynch men have a 60-80% lifetime risk of developing colon cancer... again, and again, and again. My first GI doctor told me I would probably get it again... at 80. LOL  Boy was he surprised. So was I. This is brand new cancer... but I feel comfortable and confident with the team I've got now at MSK in NYC. They are amazing and specialize in this genetic deformity. 

     

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Welcome and I'm so sorry

    I'm sorry that you are going through this once again.  It's got to be terrible having another diagnosis that far apart, plus having the Lynch syndrome.  Although I'm not able to help you with the Lynch answer, there are others here that have commented previous on here. 

    I'm also sorry to hear about your mother and hope she is doing better.

    Wishing you the best.

    Kim

  • KitKat3
    KitKat3 Member Posts: 17
    #5
    Lynch

    Hi and sorry your going through this again. I was just diagnosed with colon cancer and lynch syndrome. I just had a right hemi colectomy and full hysterectomy (due to Lynch diagnosis) on Dec 3. Waiting for next steps. Sorry I cannot offer any input but just wanted to let you know your not alone and wishing you all the best.

     

  • Twinzma
    Twinzma Member Posts: 236 Member
    edited December 2019 #6
    Opdivo/not sure about Lynch

    Not sure if my husband was tested for Lynch or not...Something we have on our list of questions for the next appointment. He has been on Opdivo for a few months and so far no new side effects have come up. Actually he is doing better than he has since February! The first scan since he started it was VERY favorable, the most amount of response he has had. Prior to starting Opdivo he had new mets in his lung and duedom those have disappeared. Most of the liver mets have shrunk in half (he has 30) and the main tumor in the colon shrunk by half. His lymph's are smaller as well. What hasn't shrunk is stable. His CEA came down more since the CT scan....so hoping that this means it is continuing to work. The next scan will be done the first week of March. We are encouraged but guarded......since nothing else was working really. He had Y-90 and some did die off but those darn liver mets of his are relentless! I hope that you have great success with it.

  • wheresgrant
    wheresgrant Member Posts: 8
    #7
    Twinzma... I'm so glad to

    Twinzma... I'm so glad to hear about your husband's progress. I finished my 2nd treatment with Opdivo last week and I'm pretty fatigue and exhausted but overall it's still more manageable than Folfox. I would imagine he must have either tested positive for Lynch or he's been found to have MSI tumors. I really hope this treatment continues to help him. 

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