About Me

Hello!

Welcome to our love story. This blog was started to chronicle our experiences living with a terminal cancer diagnosis, and as a newly married couple. This is the history of our experiences with Bile Duct cancer treatments including gem/cis, keytruda for immunotherapy, clinical trials for cancer, and my experiences with being a full time caregiver and loving partner to a man going through this terrible diagnosis and disease.

The focus of the blog has changed now to dealing with my grief after losing my husband to bile duct cancer, and my continued journey learning to live again after this devastating loss.

11 Comments

  1. My sister was diagnosed with intrahepatic cholangiocarcinoma over 3 yrs. ago. Pretty much nothing has worked. A trial @ Dana Farber for a drug that targeted her mutaton did nothing! I must say it’s been tough. . .she is extremely thin now. She is starting a new trial, but doesn t sound as promising as Keytruda. I see your husband has MSK. . .want to know if that is only way u get in trial. I looked the trial up and the qualifications seem unclear. Where in Philadelphia r u going? Who is the Dr. Thanks so much. So excited for u and hubby!!

    • Hi Jeanne,
      First of all, I’m sorry to read about your sisters cancer. It is so hard,and you have my sincere sympathies.My husband is going to the University of Pittsburgh, the Dr is Dr Lee. The reason Mike qualifies for this clinical trial is that he has the misfortune to have a genetic mutation in his DNA. He is missing a repair gene in his DNA. The Keytruda has responded very well to people with the MSI (micro satellite instability) tumors. Has your sister undergone genetic testing?The syndrome Mike has is called Lynch Syndrome.He had no idea until he had the genetic testing that he has this.He does fit the profile though. People with Lynch have multiple cancers (he had pancreatic cancer at age 30), cancers of the GI, history of cancer at a young age,and it is hereditary. Has your sister tried gemcitabine/cisplatin? Mike also did a trial of that,it was an oral chemo that helped for 5 months.Good Luck to you,and your family!Keep in touch!

      • I just conferred with my hubby,and I misspoke. The gemcitabine/cisplatin is protocol. He had that as a standard treatment. The actual trial he finished before immunotherapy was trametinib.This worked for 5 months.Hope this helps!

  2. Hi Anne,
    So glad Mike is progressing in the right direction. My sister right now is taking Keytruda, off-label. She was about to start a new clinical trial a couple of weeks ago, but they would not continue with her because of her low sodium levels (it was a drug that targeted a mutation [ IDH1] that she had). We still have not received the results of testing for MSI, because Memorial Sloan Kettering can’t get their acts together. They pretty much washed their hands of my sister, if you know what I mean. Based on a good deal of data, anecdotal info. and recommendations from some doctors, my sister just started with her first infusion of Keytruda. Some data shows that even patients that are not MSI positive, can benefit from the drug. Anne, it is so hard to see her so weak and so thin. I pray it works as well on my sister, as it has been on Mike!!! Chemo., kinase inhibitors, dendrite therapy, etc. did not do the trick. I hope one day when Mike and my sister are up to it, they can meet. Right now, I appreciate the support in this small community of cholangio. survivors and caregivers. My best, Jeanne

    • Hi Jeanne,
      I read your post yesterday as Mike underwent treatment 8 at Ohio State. I prayed for your sister that the treatment works,and I pray for you and your family. You are so right, it is so hard to see our loved ones suffer,and so thin.I have read that this treatment does work for other patients, so don’t give up! Thank you for keeping in touch. Anne

  3. I really hope to connect with you both. We are in California and my mom will be starting Keytruda in the clinical trial at Stanford in the next few weeks. She’s had multiple surgeries over the years, chemo and has hope that Keytruda will be of assistance for her biliary duct cancer too! It’s great up hear Mike is doing better, he will be in my prayers! We too, have lynch, msh2 deletion, what type does mike carry?

    • Hi Monica,
      Mike has the MSH2 mutation also. This treatment has saved his life! I am very hopeful for your mom that she has the same results that Mike has had! Thank you for touching base!Anne

  4. Hello,
    I have intrahepatic cholangiocarcinoma (still have a hard time pronouncing it). I am alone, mostly (no spouse; kids grown), battling this disease.
    What I lack in support, I am overloaded in spunk and a will to live.
    I’m not sure if I have been genetically tested (is genemic testing to determine the primary, the same as genetic testing?) at Cancer Centers of America/Philadelphia. I was diagnosed 6/10/15, and my last scans in 12/2015 said : “minimally improved.” My tumor markers were the lowest they have ever been. Halleluia! God is good.
    My questions to you…..is there a website or phone number that you can share for a clinical trial for Keytruda? I have had 14 chemo (Gemzar & Cisplatin) treatments, so my oncologist at CTCA is getting ready to switch gears to other treatment (probably radioactive beads or ablation) when I travel back to Philly next week for scans and treatment).
    Please pass on any sources that have helped you and Mike.
    I am on this journey with God directing my steps, very scared.
    Thank you from my heart,
    Dorothy from Coral Springs, Florida

    • Hi Dorothy!
      First of all, my heart goes out to you. This terrible disease is so awful, and I encourage you to reach out to your children, and any support that you have. We all need support in our lives, and of course you are scared. This disease is very scary. We went to this site when we were looking for clinical trials Clinical Trials Put Keytruda in the search bar, and I found 225 trials. In regards to genetic testing, you are looking to see if you have any genetic mutations that would make you eligible for the trials. Mike did another trial before the keytruda. Also, are you on facebook? We have gotten a lot of support in some of the cholangiocarcinoma groups.Facebook group This one is particularly helpful. My advice to you is talk to your oncologist, and ask him to try to find you a trial, and what you can qualify for. You don’t have to go through this alone, we are all with you here. Anne

  5. I have a melanoma story that may be of interest to your readers. After my wife was diagnosed with metastatic melanoma in her lungs, she started treatment with Keytruda in October 2015. After 3 months of treatment her 1.5 cm diameter melanoma tumor totally disappeared (within resolution limits of a scan). We also took a probiotic (Ultimate Flora) which contained 3 species of the bacterium Bifidobacteria during part of her Keytruda treatment. These intestinal bacteria were shown by Gajewski’s research group in the U. of Chicago (Nov 5 Science magazine) to strongly suppress melanoma in mice. Further, when these bacteria were used in conjunction with Keytruda, the melanoma was totally eliminated in the mouse study. However, we cannot, from a scientific standpoint attribute our remarkable treatment results to the probiotic, we believe as do others that the results in mice is highly significant (the mouse model was used originally for judging the likely effectiveness of Keytruda in humans). I learned recently that human trials are scheduled with these bacteria this year for melanoma patients. Taking this or other probiotics with Bifidobacteria is a low risk, and possibly beneficial supplement for melanoma treatment and other possibly types of cancer.

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