1. < Pancreatic Cancer

39 year old brother

Posted by nikki345 @nikki345, Apr 14 5:02am

Hi all.

My brother has just turned 39 years old and has been diagnosed with Stage 4 pancreatic cancer a few days ago. He has been given 3-6 months to live. The cancer is 5cm in the head of his pancreas, and has also metastasised to his liver I believe as well as several peritoneal lymph nodes - although the medical team are not sure about the lymph nodes at the moment. (this is a medical negligence case which we will be dealing with separately)

This was a huge shock for us and we are completely devastated. He has a 5 month old and 5 year old too.

He has received no treatment thus far. His cytology report was inconclusive and he therefore had a liver biopsy to determine the tumour type. We will then look to start chemotherapy asap. He also has a PET-CT scan scheduled for next week. We've also looked into and started some alternative therapies too.

We are feeling so lost. I wanted to know if anyone please please has any advice regarding next steps/what we can do to fight this? We are more than happy to pay/go private/go abroad if this will help. We are based in the UK.

Any support would be greatly appreciated.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

gamaryanne | @gamaryanne | 3 days ago
In reply to @mnewland99 "Thank you, Joy. It’s always unsettling to get bad news. My theory is that only reason..." + (show)
@mnewland99

Thank you, Joy. It’s always unsettling to get bad news. My theory is that only reason I could be on gemzar since January of this year was due to the fact that I had radiation treatment last October. 6 months after last radiation treatment was April 14 and then I took 1 session off to move. Gemzar alone was not enough to keep my cancer at bat is my theory. I had a guardant 360 test that only showed very minimal evidence of TP53 that was noted as most likely benign. Probably, for now only choice is to add back abraxane - maybe at a lower dose than before. There’s no way my current Dr will do that - he’s legitimately fixated on me going on the incoming trial for 6236 which doesn’t address TP53, so I once again have to go shopping for a new oncologist. Thank you for your kind sentiments and please keep me in your prayers.

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Have you met with Cedars Sinai yet? Over a year ago I met with a wonderful doc there that had fellowed with well known doc at Johns Hopkins, Dr Laheru. He turned me on to a clinical trial. Also, a short distance from you is Dr Erkut Borazanci. Excellent in this field, well known. I have met with him and hope to fly out to see him in June. He is in Scottsdale and associated with Honor Health Institute as well as TGEN.
My son’s family was at the Anaheim Purple Stride and we had a great team at our Atlanta Purple Stride. Way to go!!!
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1 reply
marienewland | @mnewland99 | 3 days ago
In reply to @gamaryanne "Have you met with Cedars Sinai yet? Over a year ago I met with a wonderful..." + (show)
@gamaryanne

Have you met with Cedars Sinai yet? Over a year ago I met with a wonderful doc there that had fellowed with well known doc at Johns Hopkins, Dr Laheru. He turned me on to a clinical trial. Also, a short distance from you is Dr Erkut Borazanci. Excellent in this field, well known. I have met with him and hope to fly out to see him in June. He is in Scottsdale and associated with Honor Health Institute as well as TGEN.
My son’s family was at the Anaheim Purple Stride and we had a great team at our Atlanta Purple Stride. Way to go!!!

Jump to this post

Thanks gamaryanne! Is that you with your arms outstretched? If so, you look great! How did your son enjoy walking in the rain??? Mine walked with me and never complained once and he had no hat or umbrella. I appreciate the suggestions. Cedar Sinai would be my choice, but it’s just too far to drive for me every 2 weeks. At this point we don’t know where the growth is. I was told back in January that the areas in my liver were inflammation, but it’s hard to tell from my recent CT reading but whatever it is is actually decreasing. Dr going to ask tumor board if he can order a MRI (I don’t understand why he has to ask them and I couldn’t ask because dr perturbed with me for not wanting to go on clinical trial right now. Peritoneal areas need MRI to see better, he says. I’m closer to UCI and I was going to post my question on this forum to see if anyone knows of a good oncologist there. Are you talking about g about the RM clinical trial? I thought that didn’t work for you? You look like you are doing great - keep up good work!

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marienewland | @mnewland99 | 3 days ago
In reply to @joiedevivre "@mnewland99 You are always in my prayers." + (show)
@joiedevivre

@mnewland99 You are always in my prayers.

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Thank you, Joie! You and husband are always in mine, also. Praying for a cure.

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brad2531 | @brad2531 | 3 days ago
In reply to @shelleyderish "I’m so sorry , my husband 67 was diagnosed the same He was very fit and..." + (show)
@shelleyderish

I’m so sorry , my husband 67 was diagnosed the same He was very fit and positive, he passed after 5 months

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Shelley, I am so sorry for your loss. I too have suffered the loss of my husband, One thing that really helped me was a book "How to go on Living when someone you love dies". Not to read cover to cover but pick and choose the parts that apply to you. I lost the balance of my mind for a couple of years, then slowly began to piece together my new normal. Anti-depressants helped, also taking some classes at the local community college -- ballet, weight lifting, photography. You have been through hell and you have kept going. Best wishes for a good new normal.

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carlajones101 | @carlajones101 | 3 days ago

My brother in law 56 coughing, wt loss CT scan (pancreas tail) liver bx shows metastasis (adenocarcinoma), port, genetic studies and starts chemo tomorrow. All shocking very depressing but hope is for immunotherapy. Read about it at Sloan kettering. Get to a high volume center. Praying for all!

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