Discussion Board Forums Introductions! My Introduction

Viewing 15 posts - 16 through 30 (of 405 total)
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  • #80522
    middlesister1
    Moderator

    Great update- I love seeing posts like this to start my day :)

    Keep up the good work!

    Catherine

    #80521
    mattreidy
    Participant

    I just completed Keytruda infusion #20 today (Jan 11, 2017). All is well. Looking forward to the conference this year! -Matt

    #80195
    iowagirl
    Member

    Matt….the chart is very, very interesting…..seeing this as a graph really brings it home. Keep making that flat line stretch out. This makes me so thrilled for you. You are definitely a lucky/unlucky guy……and for now….please keep it that way. Love seeing this.

    Julie

    #80219
    mattreidy
    Participant

    I’ve finished my 17th Keytruda infusion this week and continue to be “NED”, as we say.

    Here’s a chart showing my CA 19-9 cancer marker history since diagnosis Dec 2013 thru my last infusion on 11/9/2016.

    As a reminder, I started Keytruda in Oct 2015, prior to that I had IMRT radiation, prior to that I did a bit of gem/cis chemo, and prior to that I had a resection.

    You can clearly see the effect the original resection had for about a year, then recurrence, then a roller coaster with chemo, another surgery, and radiation, then skyrocketing prior to Keytruda.

    I am “the luckiest unlucky guy I know”…

    -Matt xo

    Screen_Shot_2016_11_10_at_5_08_35_PM.png

    #80218
    mattreidy
    Participant

    Just a suggestion that “Hopeless” start a thread for their introduction, comments, updates, and advice… I’d rather not mix it in with mine ;) Thanks!

    #80127
    marions
    Moderator

    Hopeless…..I understand your frustration and my heart breaks for you. I would not wait for a referral but rather I would take your wife to the Princess Margaret Hospital ER, now. She is in pain and the PM has an excellent hepatobiliary department.
    Good luck and many hugs,
    Marion

    #80126
    hopeless
    Member

    for the ones interested…..

    I can post about Canada also but will it help me atm?
    no

    this is England versus Germany……

    why does it work in Germany?

    http://www.dailymail.co.uk/health/article-2421781/Father-cancer-given-8-weeks-live-NHS-given-clear-surgery-Germany.html

    #80128
    hopeless
    Member

    Hi Debnor and Lainy.

    Debnor. I did not manage to transfer my wife yet to PM.

    I checked it out and she must be referred.

    Lainy. I am sorry that I did not have the time to read your entire story but yes, my wife is a brave woman. I am very lucky to be going to my 25th anniversary this month.
    unfortunately confronting this situation.

    The surgeon requested a small bowel flow through exam which I am almost positive will show that she has some sort of blockage due to adhesions from several surgeries.
    At the same time the same doctor that performed the test is in line with our thinking that she has a high chance of having cancer due to the bile duct and pancreas strictures.
    nevertheless he had to perform the test but he will mention his opinion in the report.

    She was in a lot of pain today and it was an exhaustive day for her.

    I can take her to PM hospital ER but like I said the triage may not lead us to the right direction.
    I am going to try and convince this surgeon to refer her and transfer her directly to PM.
    Not sure if this will happen.
    If it doesn’t I have to decide with my wife as to how we are going to make that happen.

    I know already its going to be horrible because she will be in too much pain.
    The pain she is experiencing is not related to her adhesions pain.
    She never ever had RUQ pain. We all know our bodies and when something is different it means that it is different.

    What frustrates me the most is that in Canada we are at the mercy of the system.
    I cannot pay to get her seen somewhere like PM faster .
    I call the system a conarchy. a mixture of communism with anarchy.
    its not free(we pay hefty) taxes as I mentioned before and we are prisoners of the system.
    we cannot just choose who to see in a fast manner or at least try to get an appointment faster.
    I myself had to wait 3 months for an MRI of my heel. 3 months.
    I could have gone to buffalo and get it the same day for 1k American.
    I am tired today. I am trying but the system is barring me from moving.

    thanks for hearing me

    good luck to all and my best wishes to all.

    hopeless

    #80129
    debnorcal
    Moderator

    Jaime,

    I am so glad you were able to find a way to get your wife treated at Princess Margaret Hospital. I am in the states, so no experience with the Canadian socialized medicine system, but others on this board have spoken very highly about PM. I am so sorry that, in addition to your wife having this awful disease, she has had to endure such poor medical care. However, as you know, it’s so important to get patients seen by the CC experts, and thankfully, you have made that happen. The PM doctors should be able to guide your wife to the most appropriate treatment. I’m hoping things start looking up for you and your wife.

    Debbie

    #80137
    lainy
    Participant

    Jaime, you Never have to apologize for anything on this Board, that is why we are here. I am still wondering what would happen if you just showed up at the Hospital in Emergency in Toronto. Or can you even do that? A little hint for you…..it is good to hear your wife is so strong which is all the more reason for you to match her strength. My Teddy used to tell me that he wanted me to be strong as he had steeled his mind for what was and what may be and he could not do that if I was not strong too. Man, that is what really pulled me through those 5 years. Never knew before, the strength I really had.

    #80138
    hopeless
    Member

    Hi Lainy.

    Thank you very much.

    Actually the strong one is my wife.
    I just sift through all that I can.
    I hope that maybe more members read my posts and provide some helpful insight.

    I have several names already on my list but the problem is to get to them .In the meantime the clock is ticking for too long.
    I am very scared because of that and then it may be too late.

    once again thank you so much for accepting me as a member and once again my apologies for letting things off my chest.

    all the best

    #80132
    lainy
    Participant

    Jaime, good going! It is generally slow here on Sundays but I am sure you will get more responses. Also you are on your way with getting names and next step is to get her in there!!! You never know how strong you are until “strong” is the only choice you have!

    #80131
    hopeless
    Member

    Hi Red.

    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 barbaric

    #80133
    red
    Participant

    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,
    Red

    #80135
    hopeless
    Member

    Hello Lainy.
    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.

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