37 year old with locally advance pancreatic cancer

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37 year old with locally advance pancreatic cancer

by vanessab on Fri Jun 14, 2013 02:19 PM

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Hi,

My brother is 37 yrs old and was diagnosed with localy advance pancreatic cancer in November 2012. He has an unresectable mass encasing the supior mesentric artery. He was initially treated with 6 cycles of FOLFIRINOX and had only a modest response. He was never hospitalized or had any infections while FOLFIRINOX.  He was then treated with chemoradiation.  At which point a CT scan relvealed nothing new.  There is no evidence of distant metastasis.  

At this point his oncologist has told him there is nothing else he can do for my brother except continue to monitor him until progressive disease developes and then attempt further chemotherapy with Gemzar and Abraxane.

my brother has been without any treatment for about 5 weeks now. His dr did not give any other options. We live in miami and are looking for a second opion but have no clue where to begin. We are also trying to see if there is any possible way for him to be seen at either MD anderson or John Hopkins, we are waiting on insurance.

Any suggestions??  He is only 37 yrs old and there must be at least some other tretment he can try.  Unfortunatley his oncologist is of no help.

Vanessa

RE: 37 year old with locally advance pancreatic cancer

by mavcav on Fri Jun 14, 2013 06:59 PM

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I am so sorry to hear about your brother!  He is so young, but unfortunately, cancer does not discriminate on who it attacks.  I am a bit shocked by the current oncologist and his method of care.  I would most definitely check into a better facility as it sounds like you are.  You might also want to check into CTCA, but of course that is also a waiting on insurance thing.  We don't go there as we have a great oncologist where we live, but I know there are others on here that do and are very happy with the facility.  For your brother's oncologist to just stop any treatment when there is still evidence of PC just makes no sense to me.  Obviously it is great that there is no evidence of distant metastasis, but I still don't understand where this "doctor" is coming from.  Best of luck to you and your brother and I so hope you hear back soon on one of the facilities you have checked into.

RE: 37 year old with locally advance pancreatic cancer

by jdlinder on Fri Jun 14, 2013 07:56 PM

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Hello my sister also has pancreatic cancer she is 42. She is 7months with this disease and going GREAT!!We live in ft lauderdale and we actually work with two Doctors Dr Israel wiznitzer at university of miami in plantation and Dr Ben Chue in Seattle. Both are amazing!!  google Dr Ben Chue. We first started with Dr Roche lima at university of miami but felt Dr Chue was more of a fighter. Good luck with your brother.

RE: 37 year old with locally advance pancreatic cancer

by livewell on Mon Jun 17, 2013 04:12 PM

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Hi Vanessa,

First let me start by saying I'm terribly sorry to hear about your brother!  The good news is at 37 years old he should have a lot of fight in him! 

Has he considered holistic approaches?  There is a great place in Clearwater, FL that I think you may be very interested in seeing.  It's called Utopia Wellness.  Dr. Garcia has helped a ton of patients cure cancer of all types!  In addition, I've heard the treatments really help a lot with symptom management and overall well being! You should be able to do this on top of the chemo treatments, just give them a call or schedule a consultation.

As for other chemo options, you could consider IPT (Insulin Potentiation Therapy).  With IPT the insulin works on the cell membranes and allows chemotherapy to target cancer cells. Thus, it is the chemotherapy that kills the cancer cells, however, because of the insulin, the amount of chemotherapy needed is greatly reduced, meaning the side-effects of the chemotherapy are greatly reduced. Thus, the chemotherapy is much more potent (thus the word: potentiation), much less chemotherapy is needed, and far less side-effects are experienced.

Regards,

Mike

RE: 37 year old with locally advance pancreatic cancer

by PunkyD on Mon Jun 17, 2013 09:06 PM

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Dear Vanessa,

So sorry to hear about your brother.  Please don't despair or give up.  Definitely seek as much information as possible and available options.  My mother was on Gemzar and Abraxane which was quite effective.  I also know that there are many amazing oncologists at John Hopkins.  I'm sorry I don't have more concrete info, but just wanted to let you know that you are definitely not alone, and there is always hope.  

PunkyD

RE: 37 year old with locally advance pancreatic cancer

by vanessab on Tue Jun 18, 2013 01:57 AM

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Thanks so much for the information.  I looked into Dr Chue it sounds promising.  My brother has an appointment tomorrow with another dr.  But we are definielty keeping all options opened.

Vanessa

RE: 37 year old with locally advance pancreatic cancer

by Dlynn1210 on Tue Jun 18, 2013 02:22 AM

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On Jun 18, 2013 1:57 AM vanessab wrote:

Thanks so much for the information.  I looked into Dr Chue it sounds promising.  My brother has an appointment tomorrow with another dr.  But we are definielty keeping all options opened.

Vanessa

I don't know what insurance you have but one of the greatest things about CTCA is their handling all of that for you.  They discussed everything with us on the phone and then handled the insurance directly themselves before making an appointment for me.  I was the caregiver for my husband when he had lung cancer and keeping up with the insurance was a total nightmare.  I was on my own entirely.  I couldn't believe that I never had to submit one bill or fight one fight against the insurance company, CTCA did it all for me. 

I had a different type of cancer but I went through treatment with someone that had a reoccurence of pancreatic cancer - and it had spread by the time the first cancer hospital where he was treated realized it.  They gave him no hope of seeing Christmas just four months away so he came to CTCA.  Dan did pass away 2 1/2 years later but he saw one son graduate from college and the other get married.  His wife was forever grateful for those 2 1/2 years.  As one person said, you want a fighter in your corner - whoever that may be.

Diana       

 

RE: 37 year old with locally advance pancreatic cancer

by maxxschiken on Tue Jun 18, 2013 01:51 PM

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It sounds like your brother is NED (No evidence of disease) and the mass has become scar tissue after 6 cycles of folfirinox in addition to chemoradiation.  I don't know of any oncologist who would abruptly stop all treatment if there was still evidence of disease.

My wife was diagnosed with inoperable stage 4 adenocarcinoma pc with metastisis to her liver in July of 2011.  Her tumor was 5cm at diagnosis and she had two spots on her liver measuring less than 1cm each.  After 6 cycles of folfirinox the 5cm tumor became 4mm and the two spots disappeard.  After an additional 3.5 cycles of treatment, the 4mm tumor became scar tissue and the liver continued to  be spot-free and functioning as a normal healthy organ and stopped all treatment last year in June of 2012.  

For the last year, her CT scans and blood work to monitor her liver and cancer antigen 19-9 have all been stable to date.  It is entirely possible your brothers pancreatic cancer responded very well to both the chemo and chemoradiation.  

My wife is doing just that with traveling and is currently back to her fitness levels prior to diagnosis.  She does cardiovascular, strength endurance and weigh lift training 3 hours a day, sometimes 6 days a week since last year December.  You and your brother should be rejoicing and living life while on this break from treatment.    

RE: 37 year old with locally advance pancreatic cancer

by eternalife on Tue Jun 18, 2013 02:01 PM

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Hello Maxxschiken,

So glad to hear your wife is still doing great and living life.

One day at a time is important.

Best

RE: 37 year old with locally advance pancreatic cancer

by mebenz31 on Wed Jun 19, 2013 03:00 AM

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Vanessa,

  Your brothers doctor is an idiot, you can't wait around to see what pc will do... I'll tell you what it will do, SPREAD. Your brother needs a new doc one who will fight, what kind of insurance do you have that you have to wait to hear from them before going to an oncologist? It's crazy....

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