"rjollie" Re your brother with EC-Can you send me a pvt message

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1

Hello again -

I took a great amount of time giving you some additional info, and once again my message keeps getting BLOCKED!  Perhaps you would just like to communicate via private regular e-mail.  However, the info I provide here is valuable to others as well.  Sorry this site cannot get the software program "FIXED' so that it will consistently accept postings with web link addresses. 

Loretta Marshall

Comments

  • rjollie
    rjollie Member Posts: 9
    #2
    Hi Loretta

    I just sent you a reply before I saw this post ! It is very important to put information out here. That's how I came to find this site, you and all the other members. I can't even recall what I typed into Google to bring me here but I am sure happy about finding it.

    So, I did have a few other questions based on what I read somewhere within this discussion group.

    They did not supply my brother with a 'stage' saying they did not know. They are trying to arrange an appointment at  Dana Farber with Dr Scott Swanson sometime next week. They said regardless of if he gets a consultation or not next week, he will be starting chemo the following week (may 23rd). He meets with his primary care Dr on Monday and has a chemo port put in on Wednesday.

    Okay, so here are my thoughts or questions (and I might be a bit fuzzy from reading so much!) :

    I am concerned that EMMC did not do all the testing necessary for him to get a decent consultation. I would hate for him to go unprepared and find out that he needed more information before they could speak to him. In speaking with him he said he liked his gastro Doc. I asked if he would phone him  on Monday and make sure the Dr looks over what was done at EMMC. If something is missing he can have it done locally.

    I am also concerned that chemo would be started without him having a definitive stage . From what I've read (this might be the fuzzy part) the chemo is based on the stage. In other words, they pick certain drugs (and doses) for different stages. Is this correct ? If so, I would hate to see him start on the wrong foot with that treatment. I'm also wondering if this is true for radiation as well (though I think not).

    We talked about him going to meet with Dr Luketich as well. He's very impressed with Dr Luketichs technique and thanks you so much for supplying so much information (and links).

    I have to run for now. It's lunch time for Mom !

    Thanks again Loretta

    rjollie !

  • rjollie
    rjollie Member Posts: 9
    #3
    Just popping back in !

    I will post on the other thread

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    #4
    rjollie said:

    Just popping back in !

    I will post on the other thread

     

    HER2

    Hello,

    You mentioned that HER2 testing is an option for your brother.  It should not be optional.  It should absolutely be done.  If he is HER2+, it means a couple of hugely important things.  It means that he has a particularly aggressive cancer, but also that there is a a treatment that can really increase his chances at success.  Please do not blow this off like the docs seem to be doing and do not put it off.  The treatment is done at the same time as his regular chemo, so a delay won't be helpful. 

    Wishing you guys the best,

    Ed

  • rjollie
    rjollie Member Posts: 9
    edited May 2016 #5
    Deathorglory said:

    HER2

    Hello,

    You mentioned that HER2 testing is an option for your brother.  It should not be optional.  It should absolutely be done.  If he is HER2+, it means a couple of hugely important things.  It means that he has a particularly aggressive cancer, but also that there is a a treatment that can really increase his chances at success.  Please do not blow this off like the docs seem to be doing and do not put it off.  The treatment is done at the same time as his regular chemo, so a delay won't be helpful. 

    Wishing you guys the best,

    Ed

    HER2 , Ed

    Hello Ed

    Thank you for your input ! I just spoke to my brother and he said he is absolutely demanding this test . I've made some calls for him this a.m. feeling like we really need to be proactive . So, I've phoned Dana Farber and UPMC to get the ball rolling. Based on my conversations, I told my brother that he probably could hold off on getting the chemo port put in. DF might be able to see him Friday (big might) but most likely next Monday. UPMC might be able to get him in next week ...but seems more likely it will be the following one. So, my point to him was why have something inserted when it will be another several weeks before chemo is to begin.

    He is seeing his primary care Dr today and asking him to order PET, ENDO ultrasound, and HER2. UPMC was phoning his Dr as well to request these tests (though she did say he might need to sign a release form ).

    So thanks to this site and all the valuable information found here I feel like we are taking control of some things.

    Best to you as well Ed

    rjollie

     

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    edited May 2016 #6
    rjollie said:

    HER2 , Ed

    Hello Ed

    Thank you for your input ! I just spoke to my brother and he said he is absolutely demanding this test . I've made some calls for him this a.m. feeling like we really need to be proactive . So, I've phoned Dana Farber and UPMC to get the ball rolling. Based on my conversations, I told my brother that he probably could hold off on getting the chemo port put in. DF might be able to see him Friday (big might) but most likely next Monday. UPMC might be able to get him in next week ...but seems more likely it will be the following one. So, my point to him was why have something inserted when it will be another several weeks before chemo is to begin.

    He is seeing his primary care Dr today and asking him to order PET, ENDO ultrasound, and HER2. UPMC was phoning his Dr as well to request these tests (though she did say he might need to sign a release form ).

    So thanks to this site and all the valuable information found here I feel like we are taking control of some things.

    Best to you as well Ed

    rjollie

     

    rjollie-Medi-port is OK-BUT I suggest chemo on "HOLD" 4NOW!

     Good morning “rjollie”

     Looks like your brother is finally “getting in on the act”.  After all, this show is all about HIM.  May I suggest something?  I would not object to having the medi-port put in because it will be necessary for chemo treatments even though he doesn’t know yet whether or not he will be a candidate for surgery.  That will be dependent on the stage of cancer as to whether surgery is an option.

     Might I suggest that since your brother is going to be traveling quite a distance for either consultations with Dana-Farber or UPMC, if it were me, I would NOT want to start chemo treatments at this time?

     Chemo response could be very debilitating and it would make traveling very difficult.  All of us who have had chemo know that what I’m talking about.  Those who “get by” relatively unscathed are in the minority.  Nausea and fatigue are normal companions when chemo starts.  And then the other docs might want to start your brother on a different chemo regimen.   Even though he can have the chemo administered at home and then travel to another place for “hopefully” the surgery, it would be good to have the 2 bigger and better medical facilities coordinating the treatments from the beginning.  Your brother might NOT feel like traveling once the chemo starts!

     And your brother should have a copy of these reports and scans in hand when he goes.  Sometimes the forwarding of reports in a timely manner to the newer facility who needs them seems to “fall through the cracks.”  They’re not always operating with the same sense of urgency and sometimes things are treated as a “routine” request.

     So not only would I ask for a copy ASAP.  I would want the name of the dept. or the person who is handling the request from UPMC, for instance.  I would call them after the tests are done, and ask if the records have been transmitted.  Usually it’s only a couple of days before my scans are read and analyzed, even though I wait around for a copy of the disc the day I have a scan.

     Yes, you’ve got to be the ”patient, the advocate, the mediator, the doctor, and the office manager” all rolled up into one.  This is what it often takes to be on top of this cancer even though you wish you never had heard the word Esophageal!  YES, WE’RE IN A HURRY.  But sometimes the old adage, “Haste makes waste” is appropriate.  And in this case, I would try to speed up the consults on the other end, and “hold off” on starting the chemo in the next couple of days, even though  I “personally” know how eager your brother is to “get on with it!”  I also know what it feels like to not be able to walk up and down the driveway twice without giving out of breath!

     All the best,

     Loretta

    P.S.  On second thought, he might do just as well to hold off on getting the Medi-port as well.  It's a quick procedure anyway.  Both my husband and I had our medi-ports put in one day and started the chemo a couple of days later. 

    Another PS - I'm always thinking of one more thing I needed to say.  If your brother is due for a dental checkup, or needing dental work for any reason, Now is the time to get dentist's work done prior to chemo treatments.  So be sure to tell him that as well.  And I have much more to say about chemo treatments but today is not the day I have to do that. 

     

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