reacher
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We are in awe of the treatment my husband s getting at Scripps Proton Therapy Center in San Diego.
He will be getting proton therapy over five weeks concurrently with chemo called Xeloda.
I am documenting everything to share in Canada.
My husband’s tumour was discussed at Tumour Board two days after our arrival with four disciplines of Doctors….radiation oncology, medical oncology, surgical and gastro intestinal.
It was teleconferenced last week between Loma Linda, Johns Hopkins and Anderson.
We are impressed with Dr. Giap and Dr. Sigal.
The only hard part for us is we have no insurance since we are patients out of country.Marion,
Tell me more about the hipatabilary dept at Princess Margaret in Toronto.
Names woukd be helpful.Discovered Scripps Proton Health Center in San Diego.
Dr. Huan Giap is the radiation oncologist for proton therapy.Had a discussion with chief fund raiser with BCCA.
VERO costs $6.5 million to establish
Proton therapy cost $50 million to set up.Currently, Princess Margaret Hospital in Toronto is trying to obtain proton therapy.
I am hoping my husband will be a candidate for proton therapy at Scripps.
Okay!
So VERO may not be everyone.
I sent in over 75 pages of medical records on my husband to the University of Florida proton institute.
The pancreatic radiation oncologist, Dr. Charles Nichols said my husband is an ideal candidate for proton therapy radiation as opposed to VERO.
The cost is crazy expensive, with 33 treatments over 6 weeks in Jacksonville at the University of Florida.
Really big decisions to make regarding his health care.Has anyone heard of this institute, the oncologist and proton radiation therapy?
Dr Google calls it the Rolls Royce of radiation.Feedback woukd be most appreciated!
ReacherVancouver has proton radiation at UBC called triumf but they do not treat bile duct cancer.
http://www.vancouversun.com/news/million+needed+cutting+edge+cancer+equipment/10219692/story.html
Vancouver is fundraising for VERO.
The University of Florida in Jacksonville has VERO.
Dear Supermum,
I would like to share this radiation treatment with you if your husband is considered a candidate.
It is called VERO. Google it.
http://www.youtube.com/watch?v=YFoAC_nmPdgCurrently, there are only about 20 in the world.
I know there are two in Belgium and one in Milan.
In Vancouver, the BC cancer agency is fundraising to bring this high tech piece of equipment
to the city.My husband also has stage 4 cholangeocarcinoma radiating from the bile duct down and around an the SMA artery and left renal vein. He had a d double gastric bypass , as well as, these two tumours were clipped or marked in case radiation is used as a treatment.
Like your hubby, mine has had 4 cycles of cisplatin and gemcitabine.
He is to have a fifth cycle and his CT scan is Oct. 7!I hope VERO will be an option for both our sweethearts!
Prayers and love for all of you!
ReacherHas anyone heard of VERO?
It is a 6 D radiation machine.
Currently there are 20 in the world.
There are two in Belgium, one in Milan and none in the US.
Vancouver BC Canada is raising money to bring VERO to the city.
It costs over $6 million.
It is incredibly precise to radiate tumours considered unresectable.
Want to learn more about VERO!Just an update on my incredible 61 year old husband diagnosed with advanced unresectable CC stage 4 bile duct cancer originating in the duct and wrapping partly around the SMA artery and left portal vein of the kidney.
He is beginning his fourth cycle of palliative intent chemo using gemcitabine and cisplatin.
The side effects of this systemic treatment are fatigue, diaherrea, gas, hair thinning and some minimal pain.
We were shocked by the oncologist’s prognosis of his life in terms of months…6–11 months!!!
This was told to us without looking at his CT scan which is due this September.
He has not had a CT scan since his laparotomy in early June with a double gastric bypass and tumours being marked for possible radiation.
We were also told that since his platelets were extremely low cisplatin would be removed from his treatment. Apparently cisplatin affects platelets the most.
Isn’t cisplatin the key ingredient to shrink the tumour?
If his platelets reached 75 he could have 80% gemcitabine.
Needless to say we felt shocked, horrified and in disbelief.
We believe in the power of prayer!
In less than 5 days his platelets rebounded from 20- 118.
He got both IV bags of gemcitabine and cisplatin in chemotherapy yesterday.
His tumour marker went from 1.2 to 0.9We are not giving up but are determined to fight this cancer!
What would be the best most realistic news from the CT scan?
What can cure CC?
What is the chemo intended to do?
What would radiation hope to achieve?
Can the bile duct in the pancreas be removed surgically?
Are there other drugs out there being used to target CC?
If so, what are they?
Please excuse my spelling…flourisil IV, kepcetabine (oral), taxane?
Please help me think of other questions to ask the Drs from your experiences.I also am having problems navigating ths forum.
If you have words of wisdom or encouragement please send it to me…Reacher.
We believe in the power of God through prayer.
Need to be strong and remain hopeful.Please advise how to build platelets.
My husband’s were 22.
If they are at 75 on Monday Aug 18 he will start cycle 3 of gem/cis.
I appreciate this group and site so much.Dear Cazgirl,
My husband’s tumour is in the bile duct and proceeded downwards wrapping around an artery and left renal vein. During the laparotomy the surgeon marked the tumours just in case. Radiation can be used.
It is stage III.
Currently he is on chemo.
The cisplatin and gemcitabine are being used.
His platelets seem to tank about 7-10 days after his second round in a cycle.
The platelets were Low. …22
We are seeing the oncologist today.
We remain hopeful and strong that God will show mercy.
There seems to be three areas the cc can go to.
I think we are intra.
Praying for you.
Hugs,
ReacherDear Cazgirl,
My husband’s tumour is in the bile duct and proceeded downwards wrapping around an artery and left renal vein. During the laparotomy tge surgeon marked the tumours if radiation may be used.
It us stage III.
Currently he is on chemo.
The cisplatin and gemcitabine are being used.
His platelets seem to tank about 7-10 days after us second round in a cycle.
He was at 22. Low.
We are seeing the oncologist today.
We remain hopeful and strong that God will show mercy.
There seems to be three areas the cc can go to.
I think we are intra.
Praying for you.
Hugs,
ReacherDear Cazgirl,
I am so sorry to hear of the sudden and very shocking passing of your husband.
How did they determine he had cc?
When I mention my husband’s form of cancer to others they stare in bewilderment because they have never heard of it before!
Cholangeocarcinoma seems to be so rare.
My husband was diagnosed June 5th.
Please know I feel for you deeply and will pray for you.I realize every CCA case is unique and everyone responds differently to treatments, however, I am overwhelmed with sadness regarding life expectancy after googling information.
At 57 years of age I was dreaming of quite a different retirement in the future with my husband, children and hope of grandchildren.
I remain positive that my spouse will be on the outside edge of the bell curve and can live for many years.
