October 30, 2016 at 9:13 pm #80131
thank you for the warm wishes and the sense of urgency.
Yes. It is a shame that the system is at this stage.
The Hippocrates oath the doctors took when they graduated turned into a hypocritical oath.
I am in the process of trying and transferring her to either princess Margareth or Toronto general but
the only thing holding her up is a PICC line where pain meds and other meds are being administered (Ondansentron, Benadryl , gravol, etc)… She cant function without that.
I am trying to expedite her transfer tmrw when the office opens at PM or TG… there is a triage nurse I can try to connect to and provide her all docs at hand…
I am tremendously scared that once she gets out of the system to go back into it is another nightmare…this was tried and you have no idea how dreadful it was for 12 hours in a crammed ER she remained until being transferred back to the original oncology surgeon.
this time I am keeping her in the system as much as I can.
I can try to see if this surgeon transfers her directly to PM.
my kind and humble thanks
People are dying in hospitals here or left for dead in hallways while the Government and its propaganda machine creates an international illusion to other countries.
this is not her first rodeo.
She is also a case study for endometriosis stage 4 . in the beggining the surgeons said that she wanted “attention” until an appendectomy was performed and endometriosys was diagnosed through pathology… Its barbaricOctober 30, 2016 at 8:55 pm #80133redSpectator
Oh my goodness!!!! I can not believe the pain and suffering both you and your wife have been put through. Your story is just incredible and I can’t fathom how awful the last three months have been for you. However, you certainly are in the right place here to get help and recommendations from those who have been through similar experiences. What a shame that the Canadian system has so mistreated your poor wife. Unfortunately, I have no advice but I second Lainy’s suggestion that you get your wife to a hospital in Toronto as soon as possible. The best way to get a handle on this nasty and ugly carcinoma is to nip it in the bud, so to speak. Therefore, the sooner that she can be properly diagnosed and a plan devised for treatment, the better. I firmly believe that time is of the essence and so I will pray that you can get her admitted as quickly as possible. Please keep us all posted on what happens and know that we are thinking of your both.
Kind thoughts coming your way,
RedOctober 30, 2016 at 8:52 pm #80135
thank you for the kind words and the support this great family gives to each other.
I will try to copy and paste the entire post and place as a new post.
If I cant do it please let me know how to do it.
Yes. Princess Margaret and Toronto general have the most experienced doctors for this dreadful invisible and disguisable as a chameleon disease.
I already gathered several names from both hospitals .
the problem is the Canadian system .
Good luck to all here fighting for their own and their relatives.October 30, 2016 at 6:32 pm #80136lainySpectator
Dear Jaime, Welcome to our remarkable family and the best place to be for CC support. I am wishing that we can help change your name from Hopeless to HOPE and MIRACLES! Yes, this is the scariest of scary Cancers and I am so sorry for the way your wife has been treated or should I say NOT treated. You are thinking good when thinking of getting her to Toronto. Please know that once she is with the proper and best Doctors and treatment begins your fright will turn to fight! Not sure how your system works there but can you just take her to the Hospital in Toronto to Emergency and then hopefully they will admit her to the hospital from that point instead of waiting for more Doctors and tests. She should be in a hospital and if getting her in through ER (Emergency) is the way so be it. I believe the hospital I am thinking of is the Princess Margaret.
Will someone verify this hospital for us, please! It is well known for treating CC.
Jaime I would also ask you to copy your post and repost under Introductions as a new post or I am afraid it will get lost in the shuffle. Wishing you the very best and please keep us updated.October 30, 2016 at 7:25 am #80134
As you can see by my nickname I am hopeless.
hopeless with the Canadian health care system and hopeless with all the doctors that since May have misdiagnosed and mistreated my loved wife.
Not to mention how the majority of nurses and triage personnel treated her .
The so called “Universal and socialized medical system in Canada WHICH IS NOT FREE (we pay on average CAD 12500 dollars per 2 adults in a study through our overall taxation.
I am going further to say because of the CAP (doctors malpractice insurance )which ironically is little known by the Canadian population as a not for profit organization protects them from malpractice with OUR tax dollars and some payment from their own pocket.
The Nurses association is just as powerful to do and undo whatever the heck they want and keep their wallets fat with taxpayers money and also stay untouchable.
Yes ladies and gentleman CAD 12500 dollars in taxes for a collapsing system.
I am sure my fellow Canadians will bash me for the above statements. nonetheless it is the reality, not a fantasy and neither a fiction.
Her story is ongoing and it all started with an acute abdominal pain and severe pruritis for which her and I thought was an allergic reaction.
After an injection of epipen and a trip to our small town hospital inside an ambullance , her never ending nightmare and horror story starts.
in a nutshell on day 2 after a battery of blood work was performed and ALL her liver panel functions showed numbers that were through the roof she was transferred to a larger hospital in Hamilton l. At that hospital the initial resident had an excellent plan that never took place, (that man one day will be an excellent doctor but he was shut out of the treatment)
They would do an MRCP on the following morning and further blood-work would be performed along the way.
Then I ask all the members here. did that MRCP ever happened until she was discharged?
After 13 days in the hospital vomiting pure bile and not eating with 3 antibiotics being administered to her and just an ultrasound that could see absolutely nothing they finally decided to perform an ERCP.
ERCP done. sphyncterectomy done. result. bile duct dilation.
Did the doctor request to do a follow up? NOPE.
They went on to discharge her with elevated liver enzymes, pain, jaundice but offered her an Xray. How kind of them.
we immediately called her previous surgeon that performed her cholecystectomy and on we went to see him in less then 5 days.
first exam : blood work and an MRCP with Gadolinium.
Since the exam was performed at night and my wife has severe allergy to IV iodine the Gadolinium was not administered because at this particular hospital they did not want to take the chance of an allergic reaction.
result. a pancreas cyst on the head area.
back to the surgeon and he asks to repeat it with gadolinium this time no matter what. Its a hospital she has an allergic reaction then have to take care of her he said.
Its a hospital he said. we are here to treat people he said.
in the meantime we requested the ERCP specialist to see her.
how long would you people think it took for an appointment with this doctor after basically begging to see her? 30 days.
In 3 days her previous gallbladder surgeon obtained another repeat of the MRCP.
how is that possible if the system is the SAME FOR ALL?
either way. the MRCP as we would know lit like a Christmas tree showing an anomaly in the distal area of the bile duct plus a better view of the pancreatic cyst.
now going back to the ERCP doctor consultation. Actually it felt more like an INSULTATION , untill we showed her the MRCP result which WAS DENIED AT THE HAMILTON HOSPITAL SINCE IT WAS CONSIDERED A WASTE OF RESOURCES. Yes. welcome to the socialized and well managed Canadian health care system .
THEN this doctor face jaw fell and SHE actually turned yellow. from treating my wife like trash at the appointment she goes and says. “Oh . i am so sorry” furthermore … she arranged in less then 24 hours a stent placement by another doctor” if I can call him that” and a series of blood exams plus an FNA for the cyst and a brushing pathological study.
WOW one would say. that’s fast. not really.
all this was done under intense stress and lack of care for a human being.
It took another surgeon (not oncologist) to point to her that HEY are you really looking at what you need to look for? NO.
over 3 months went by for ALL the above to happen through basically a battle with the system and abusive doctors nurses and the list goes on.
at the end of the whole ordeal…. FNA NEGATIVE .
Brushing : Atypical ductal cells with mitotic figures. suggesting follow up with clinical findings.
after that has any of the doctors did anything else?
symptoms remained. RUQ pain persists , elevated ALP, pruritis and more loss of weight.
On we go to a larger center in Mississauga where she was submitted to a spyglass exam: inconclusive
MRCP : the doctor is not worried about the cyst… yes that is what he keeps saying
Distal area of bile duct: remains dilated.
In his initial consultation and just based on the initial exams presented to him he wanted to perform a whipple procedure RIGHT AWAY, meaning on the following week….. well…. he changed his mind.
Now he doesn’t want to do it at all.
and bedridden she remains and now i am trying to transfer her to Toronto .
ITS been 6 months since the horror story started and thousands of dollars spent in repetitive exams at no avail.
there are more details but since I have been lurking and reading very interesting posts from people that are going through this EVASIVE AND CHALLENGING carcinoma to be detected, here is my wife that MAYBE is in the early stages of the disease and no surgery on the way to PREVENT this DREADFULL AND LETHAL disease for which ONLY 3 to 4 thousand cases are diagnosed in the USA which has a population of 300 million people?
imagine us Canadians with 30 million people only.
sorry for the ranting , misspelling etc.. but I needed to let this off my chest.
I read a lot about bile duct and pancreatic cancer that I almost look like ELI which carried his suitcase with information. I think that Eli’s wife was properly taken care in Ottawa slow move but taken care off although she was diagnosed.
my wife remains undiagnosed and that is why I believe that the doctors are being negligent.
we know the severe risks of this surgical intervention but the rewards are higher if the pathology shows CC or shows nothing. She can live with that.
thank you for listening.
any, but any ideas or help are more then welcome.
from a hopeless husbandOctober 29, 2016 at 1:50 pm #80139herculesModerator
Matt, a big high five on your incredible results with this trial drug, I hope there is more positive news with You and others. Here’s to your continued success, PatOctober 29, 2016 at 1:20 pm #80140redSpectator
Wow, what a story!! I have just spent time reading “your story” from your first post to this last one. I so admire your bravery and strength. You are an inspiration to all who are in the same boat as well as to care givers. Thank you so much for your honesty and encouragement that no one should ever give up but should always push forward.October 29, 2016 at 3:10 am #80142marionsModerator
Matt……Some days are simply better than others – this is one of those days. Congratulations.
See in in February.
MarionOctober 29, 2016 at 12:03 am #80141darlaSpectator
Thanks for this awesome update. So happy for you. Also nice to see that big smile on your face.
DarlaOctober 28, 2016 at 11:22 pm #80143debnorcalModerator
Your post brought a tear of happiness to my eyes. I am so very thrilled that you continue to be on a positive trajectory – may it continue indefinitely!
Thanks for taking the time to post updates of your success. You are such an inspiration to so many of us. You sound and look great!
Mike and I are hoping to make it to SLC in February. If so, we’ll see you there.
DebbieOctober 28, 2016 at 6:33 pm #80144mattreidySpectator
Quick update. I’ve now completed 16 infusions of Keytruda and had scans in mid September. No evidence of disease! CA 19-9 is between 9 and 12 and scans are clear.
I will continue to take the Keytruda until Mar/Apr 2017 which will mark one year of NED.
Life has never been better. I will be speaking at the CCF annual meeting in Feb 2017 to share my story to offer hope to others.October 17, 2016 at 1:06 am #80125dkillion10Member
Matt – A quick note to say THANKS. Your commitment to share the details of your journey has benefited many … including me. Similar to you, I’m facing recurrence and determining the best treatment path. I have documented your history and excited to share with my Oncologist tomorrow. Without your frequent/detailed posts, I would be lost in a sea of uncertainty. Best wished to you and your family! – DennisOctober 9, 2016 at 4:16 pm #80130lornakSpectator
Thanks for sharing your story. My father’s tumor has the same mutation your tumor has and he has been getting Keytruda (also free). We are very hopeful and your story provides a lot of inspiration.August 2, 2016 at 4:41 pm #80520debnorcalModerator
So glad to see you continuing to feel well and enjoying your summer with your family. Thanks for posting the cute pic of you and Your son. Dylan looks so sweet!
So glad the Keytruda continues to work well for you & hope that it continues to do so indefinitely!
Thanks for popping in to post – enjoy the tail end of summer!
DebbieAugust 1, 2016 at 10:05 pm #80519marionsModerator
Matt….so thrilled to hear of the spectacular results and thanks so much for the attached, cute picture of two happy people.
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