Topic: Not giving up!
My husband is not giving up until this cholangiocarcinoma is conquered.
29+ months and going strong!
My greatest prayer is for those battling this disease is that it can be cured
and people are restored to full health.
Without a doubt we know this….
Jesus the divine physician is healing Michael. It is Jesus who provided the talented medical Doctors, wonderful nurses, staff, medicines, funding and facilities for Michael’s treatment and care.
He has been beyond generous with accommodation, surrounding us with family & friends , and
dear ones who pray for us.
Jesus is looking after our needs.
His love knows no bounds!
Turn to hm when you are in your darkest hours, when you feel weak and when you feel there’s no hope.
Jesus is filled with compassion, love and mercy.
Life with Jesus is never boring if you trust and believe.
Patients, caregivers and the medical community should know the name of Jesus
My husband has had all three pillars of traditional Western cancer treatment:
Surgery, ( double gastric bypass) chemotherapy and radiation more specifically Proton Therapy.
Truthfully, it has been a multidisciplinary team of doctors and specialists that have been instrumental in keeping my husband alive from this lethal and aggressive cancer.
Together we ‘re better!
The chemotherapies Mike has had include the first line of defence which was Gemcitibine &
Cisplatin over a period of three months 2014. It failed.
Being disenchanted with what the BC Cancer agency provided I pursued Proton Therapy treatment with an exceptionally brilliant doctor at Scripps in San Diego
Dr Huan Giap along with his stellar nurse, Angie and all the team there.
Mike received pencil beam proton therapy treatment at their new facility in October and November 2014 over a period of five weeks in the healing sunshine of Southern California. There was no money or funding provided for this rare cancer so we paid out-of-pocket.
Mike was also sent to an oncologist at Torrey Pines, Dr. Darren Segal and was put on Xeloda
His platelets tanked on two treatments and so we just continued with Proton Therapy alone with bloodwork and weekly visits to the oncology at Greens Hospital.
At that time , I asked the oncologist in Torrey Pines if he had heard of Keytruda or Pembrolizumab which he had not.
After we finished proton treatment we returned and pursued naturaopathic treatment from Dr Lorne Swetlikoff which was totally new to us. We embraced it and have never looked back!
Once again this was not funded.
In February 2015 outr Hipatabilary surgeon
Dr A Buczkowski took Mike’s case to the tumour meeting at the agency to see if he was a candidate for resectioning and surgery. It was declined.
The tumour markers started to rise in the spring of 2015 and a cath o port was put in Mike’s chest in June 2015 as the veins in his arms were wearing out.
Working with our oncology team Dr Paul Klimo and Dr John Yun
it was decided to try a new chemo Abraxane which was not funded again for bile duct cancer,as well as ,5FU worn over a period of 48 hours in an IV infusion system.
Michael had other medical issues dealing with stents being replaced from plastic and finally to metal in June 2015.
In addition, Mike was battling kidney stones and needed several ESWL treatments.
Our life consisted of a daily Doctor dance ;sometime seeing two or three doctors in one day.
It is worth mentioning, Michael developed a metastasis in his abdominal area in June 2016. Thanks to the talents and gifts of the physicists and nurse Angie and Dr. Huan Giap
at San Diego Scripps proton therapy Center this second tumour was zapped by Dr.Giap ; which will be the title of my children’s book!
Dr Giap (yap) gave me a zap!
And we travelled to Rome and on a cruise with our dear friends
walking on holy ground in Rome, Corinth, Ephesus and through the holy doors of extraordinary divine Mercy in Italy. (August-September 2016)
Mike ‘s story is very lengthy ( as there’s more to share…
Like endocarditis that he survived Iin October 2012)
and for the sake of keeping ithis short I will say that
Michael is now on the immunotherapy
Keytruda or Pembrolizumab thanks to our exceptional oncology care at Richmond Hospital with Dt John Yun , his nurse Lisa and with the support of Dr. Klimo.
We have tried various treatments including hyperthermia
I need to mention that all our MRIs have had to be privately paid.
We are thankful to Dr Raj Attariwala for his incredible gift of radiology and reading scans.
We have many other Drs and medical staff to thank as well.
He noted in the MRI from October 2016 that there was a blockage in the metal bile ductt stent and thanks to Dr Charles Scudamore at VGH he cleared it with yet another ERCP.
Our story is far from over.
We firmly believe it is under the divine physician ‘s care,
prayers and love of family & friends that Michael is here to
testify and witness.
I have always stood by the name…
He is still here and active.
The only place he’s going
Is on more trips!
Yesterday he rode 4 miles on his bicycle…. In Kauai.
Believe in the mercy and grace of God
For with Him
Not one thing
Do not be afraid.
Together we ‘re better!
Love and prayers.
Topic: Hello, I’m here for my mom
Thank you for letting me join this group. I am here to help get information for my mother, age 59, who is battling stage IV Cholangio. She is currently being treated at the James/OSU, but we are exploring other options. Her mass was removed in late February, but she had several complications after and two emergency surgeries left her with a horrific open healing stomach wound that is taking months to heal. She has spent the past months recovering at home. Two weeks ago her scan showed new spots on her liver. Chemo is supposed to start this week (she was going to do GEM/CIS but her bilirubin is too high and they are now looking at 5FU & oxaliplatin) but I’m here to learn about other treatment options….to me it just sounds like the chemo would buy her some time. We are waiting on results from the genetic testing on her tumor. I appreciate all of you for sharing your experiences as we try to navigate the best options for her.
My wife was diagnosed with Hilar CC last November. She had 4 infusions of gemcitabine and cisplatin. She then had radiation 5 days a week for 5 weeks along with 5FU administered 24/7 using a fanny pack. This did not shrink tumor (it has remained mostly unchanged) that is involved with the arterial blood supply enough that the surgeon would recommend resection.
On 8/10/16 she had her first infusion of Keytruda. She experienced no side effect until the 5th day when she had some general joint pain along with some mild intermitting right lower stomach pain. For the last couple days she has had mild persistent back pain in the region of her kidneys.
I am posting this an example of one patients early response to Keytruda and also to ask others to share their experience with this drug.
My wife just finished 4 infusions of gemcitabine and cisplatin over the last 7 weeks. A new CT scan showed her hilar CC mostly unchanged by the chemo. Oncologist suggested radiation and 5FU going forward.
We found a clinical trial at Sarah Cannon institute using REGN2810, which is an anti PD-1 inhibitor much the same as Ketruda. In fact the oncologist said all the PD-1 inhibitors are pretty much the same for as their effectiveness.
It can be combined with radiation and or certain chemo drugs.
Here is a cut and paste about it:
]REGN2810 is a type of drug called a monoclonal antibody. REGN2810 is a fully human monoclonal anti – PD-1 antibody (a type of protein) that works by blocking the programmed death receptor 1 (PD-1), a cell receptor on immune cells that is involved in preventing the immune cells from destroying other cells. Blocking the receptor is expected to help the immune cells attack the cancer cells. This study is being conducted to test the safety of REGN2810 and to see if blocking PD-1 with REGN2810 will help the immune system attack the tumor, and to determine whether combining REGN2810 with radiotherapy and/or cyclophosphamide is safe enough and if it can help to improve tumor shrinkage.
Since this trial has been going on for about a year at several different locations, I was wondering if anyone here ahs any knowledge about it.
My husband had surgery 3 years ago in February 2013 removing half the liver, gall bladder and reconstruction of the bile duct. Some lymph nodes were shown to be infected in biopsies done at surgery. No Chemo or Radiation was deemed necessary at the time. We were told it was not cured and would reappear at some point. Two years. later in February 2015 there was 2 tumors discovered in the Celiac region. Due to the location, radiation was not an option. He started Chemo with Gemzar and Oxiplatin and ended up in the hospital a few times. Then he had Gemzar with Xeloda with side effects of Hand and Foot syndrome and mouth sores. The Xeloda was reduced but side effects still bad. He now has a port due to his veins wearing out and the next step may be 5FU. The tumors are small and have not increased in size or number.
We were wondering if anyone had it metastatsize to the celiac region?
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