Disappointing Appointment

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Comments

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #22
    Sundanceh said:

    The Air Just Went Out of the Room....

    Hi Chels:)

    I'm disappointed right along with you.  Steve has taken a harsh beating and I was optimistic as well that some kind of surgical intervention would be done.

    This is hard news.....I went from High to Low in a complete free-fall with your update.  Just saddens me to see people I care about getting hurt so badly when they are trying so hard.  Makes my stomach tie up in knots.

    That's a tough combo of chemo alright...I know that TaraHK did this one I believe and experienced some positive response, but I don't want to speak for her. 

    Your guy is hard as nails and I so much hope that this new plan will yield the expected results this time:)  You both deserve some good news!

    For what it's worth, give Steve my best....we're in your corner and wish we could do more.

    It's just so upsetting to watch all of us having to suffer so much. 

    I'm just about to finish up this post and was higher than a kite.....then I read the reality of what's happening to my friends and want to just hit the Delete key on what I wrote.  It just seems so not important anymore...

    Glad to be here 'listening' with you...

    Craig,
    I think you took the
    Craig,

    I think you took the news as hard as Steve and I. I am starting to become really familiar with that air being sucked out of the room feeling. I have acquired numerous new skills over the past two years. For example, I can determine the tone of the appointment within three seconds of walking into the doctors office. There seems to have been so much bad news lately. But I have also learned that as bad as things seem, they can always be worse. Just focusing on the positives right now.

    Still so happy about your great news. How nice for someone so talented to work so hard and finally be recognized for their efforts. Take that Dr. Phil.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #23
    Maxiecat said:

    I am sorry...but at least it

    I am sorry...but at least it should like you have a plan and they are hopeful.  Does that chemo cocktail come with one of those little umbrellas that they usually put I tropical drinks?

    alex

    Alex
    Ha ha, yeah doesn't that
    Alex

    Ha ha, yeah doesn't that sound like a delicious cocktail. Lol. A solid plan in place does help.

    Thanks
    Chelsea
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #24
    annalexandria said:

    I wish the results had been better, Chels-

    I've had a couple of these "worse than expected" scans, and it sucks.  I guess the one thing I would say is that it sounds like you have a great team who are not giving up on Steve, and in my experience with doctors the "c" word doesn't get thrown around lightly.  If they think there is still hope for a cure for Steve, I would try to put trust in that for now, as best you can.  It's not easy, I know.  Sending strength your way~AA

    Thanks Ann. I don't think
    Thanks Ann. I don't think there is a hope in hell of Steve being cured. The Ottawa team would say that it is highly inappropriate for Montreal to mention cure. But this is why we prefer Montreal. They aim high. I love their attitude and fighting spirit.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #25
    Annabelle41415 said:

    Sorry

    Sorry you didn't get better news.  I'm hoping that his new treatment works better for him and his next scan shows a big improvement.

    Kim

    I hope so too Kim. The side
    I hope so too Kim. The side effects should be quite brutal. Hopefully it will pay off with good results.
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #26
    maglets said:

    sorry

    ah so so sorry about those results Chelsea.....indeed i know you must have hoping for so much more.  I do agree with the thinking that the cure word is still wonderful .....glad it is still floating around the room.  Sorry too that you now have this added to Montreal ....what a blessing to have fresh opportunities though.....

     

    sending love to you both, mags

    Thanks Mags. It is nice to
    Thanks Mags. It is nice to have a fresh team with fresh ideas. Steve is worried about hurting the feelings of the old onc. I have told him, she is not our BFF. This is not personal. These are life and death decisions. We have to go with who we feel will provide the best options. I do get what he is saying as we do have a good rapport with the current onc. But, overall we are comfortable with the idea of moving on.

    Chels
  • jen2012
    jen2012 Member Posts: 1,607 Member
    #27
    Chelsea71 said:

    Wow! I wasn't expecting so
    Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

    The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

    Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
    skills. These hobbies keep him sane and occupy a lot of his time. So I am
    worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

    Thanks again to everybody for the support. Don't know what I'd do without you guys.

    Chelsea

    i"m glad that Steve is

    i"m glad that Steve is feeling better about things.  It sucks having this stuff hang over your head.   Seems like he is a fighter though, so I hope between his determination, the doctors skills and Bravo's bravery you quickly see better days.

    NICE vacation plans!  So happy that you guys are doing something fun.  Enjoy it!!

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #28
    wolfen said:

    On Hold

    Chelsea,

    So sorry for this latest news. Let's just believe that the liver surgery is "on hold" and as soon as these pesky lung mets are under control, the surgery will be "on" again. The dang road just seems to be filled with so many boulders.

    Wishing you both the strength to keep climbing over the boulders and onto a clear highway of success.

    Luv,

    Wolfen

    Thanks Wolfen. Nice to hear
    Thanks Wolfen. Nice to hear from you. Hope all is going as well as can be expected in your life. Nice of you to be thinking of others while your dealing with you own grief.

    Chelsea
  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #29
    tachilders said:

    Well, my oncologist at NW has

    Well, my oncologist at NW has agreed that it might make sense to test my mets for KRAS and BRAF, so now I just have to hope they kept enough of the omental tumors that they did biopsy (to make sure they were colon cancer) to do the testing....

    Tedd

    Good luck Tedd. Hope it
    Good luck Tedd. Hope it works out. Would be nice to have some new options. Sure shows that we have to do our homework. Can't just sit back and assume the onc are doing all that they can.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #30
    Chelsea71 said:

    Wow! I wasn't expecting so
    Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

    The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

    Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
    skills. These hobbies keep him sane and occupy a lot of his time. So I am
    worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

    Thanks again to everybody for the support. Don't know what I'd do without you guys.

    Chelsea

    Whooo Hooo

    That's right, go to Vegas and you two have a blast!!! The helicopter ride and all sound like fun, and by golly I think you both need a lot of that right now.

    His cocktail sounds like quite the mix, I glad he's strong and can handle it, with you beside him, helping him, he'll do fine I'm sure.

    And his own mouse! That's so very cool that they are going so far in helping to find out more about his tumors. I just love that they can give more hope and are able to go the extra mile!

    I know you feel disappointed in the outcome of the visit, but I think they are going to be trying very hard and I'm glad that you have found a team that is aggressive and that you both like.

    When in Vegas forget about the cancer and just enjoy the heck out of your trip, I'm so glad you are going.

    Winter Marie

  • renw
    renw Member Posts: 282 Member
    #31
    Chelsea71 said:

    Good luck Tedd. Hope it
    Good luck Tedd. Hope it works out. Would be nice to have some new options. Sure shows that we have to do our homework. Can't just sit back and assume the onc are doing all that they can.

    If you are game to try new

    If you are game to try new options, I just came across one. Daily IV of a sugar substitute. It is taken up by cancer cells just like glucose, but can not be used for energy eventually killing the cancer cell. Becomes more effective when combined with insulin after the IV. I will have more info next month, but I suspect that it is 3-bromoperuvate. The doc claims to have cured 2 patients who were classed as incurable one after 3 months of treatment, the other needed 11. but as with everything, proper studies are lacking so who knows.

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #32
    renw said:

    If you are game to try new

    If you are game to try new options, I just came across one. Daily IV of a sugar substitute. It is taken up by cancer cells just like glucose, but can not be used for energy eventually killing the cancer cell. Becomes more effective when combined with insulin after the IV. I will have more info next month, but I suspect that it is 3-bromoperuvate. The doc claims to have cured 2 patients who were classed as incurable one after 3 months of treatment, the other needed 11. but as with everything, proper studies are lacking so who knows.

    Sounds interesting. Yes, we
    Sounds interesting. Yes, we are interested in trying new options, at this point. More info would be great. Thanks a lot.
  • Nana b
    Nana b Member Posts: 3,030 Member
    #33
    tachilders said:

    Well, my oncologist at NW has

    Well, my oncologist at NW has agreed that it might make sense to test my mets for KRAS and BRAF, so now I just have to hope they kept enough of the omental tumors that they did biopsy (to make sure they were colon cancer) to do the testing....

    Tedd

    I wish him well.   Take care. 

    I wish him well.   Take care. 

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #34
    Hi Chels,
    So nice to hear

    Hi Chels,

    So nice to hear that you're going on vacation!  It's just what you both need, fun, relaxation and some one on one time.  Very happy for you!   :)

  • LindaK.
    LindaK. Member Posts: 506 Member
    #35
    Chelsea71 said:

    Wow! I wasn't expecting so
    Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

    The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

    Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
    skills. These hobbies keep him sane and occupy a lot of his time. So I am
    worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

    Thanks again to everybody for the support. Don't know what I'd do without you guys.

    Chelsea

    VEGAS!

    Have a blast, sounds like an amazing trip!  My husband and I went there for our 25th anniversary and had the trip of a lifetime, so glad we have those memories.  Enjoy all the shows, scenery inside and out, it's beautiful there.

    Enjoy, enjoy, enjoy...

  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    #36
    Chelsea71 said:

    Wow! I wasn't expecting so
    Wow! I wasn't expecting so many responses to my post. Thank you so much for all your kind words.

    The positive side of all this is that Steve will now be treated at a new hospital by a new oncologist. He will now be treated in our neighboring province where they seem to take a more aggressive approach to cancer treatment. I couldn't help but be impressed by this whole mouse idea. Hopefully it will work out. It is very important when doing the biopsy that they extract a piece of the tumor that contains active cancer cells. Anyways, I really like this hospital (McGill Health Care Centre) and I like the team of doctors.

    Steve seems to be feeling better about it all. He was pretty discouraged the first couple days after learning about the progression. Talking about not renewing his magazine subscriptions etc.... It was upsetting to see him in this state of mind. He has always been so positive. I do worry about the Folfirinox. Mostly because of the Oxilaplatin. He plays the guitar and puts together model planes and has many other activities that involve fine motor
    skills. These hobbies keep him sane and occupy a lot of his time. So I am
    worried about how the neuropathy will affect his quality of life. We booked a trip to Vegas. We leave on Wednesday. Going all out. The helicopter ride over the Grand Canyon, Crisscross Angel, Cirque de Soleil etc... It may be a while before he feels well enough to do a trip like this. I feel that we just can't put these things off anymore.

    Thanks again to everybody for the support. Don't know what I'd do without you guys.

    Chelsea

    Sorry

    Sorry you received this challenging news but I am glad that you have a plan in place.  I keep your family in my thoughts.

    Enjoy Vegas.  What a city!  Hopefully you will see Cirque du Soleil "O".  It's been years since I saw it but I can still see the images in my mind and hear the music in my ear.  Loved it.

    Amy

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member
    #37
    mom_2_3 said:

    Sorry

    Sorry you received this challenging news but I am glad that you have a plan in place.  I keep your family in my thoughts.

    Enjoy Vegas.  What a city!  Hopefully you will see Cirque du Soleil "O".  It's been years since I saw it but I can still see the images in my mind and hear the music in my ear.  Loved it.

    Amy

    What great timing. We were
    What great timing. We were just discussing which Cirque du Soleil to see. Based on your recommendation we will see "O". Steve is now ordering the tickets. Thanks for the tip.

    Chelsea
  • barbebarb
    barbebarb Member Posts: 464
    #38
    LivinginNH said:

    Hi Chels,
    So nice to hear

    Hi Chels,

    So nice to hear that you're going on vacation!  It's just what you both need, fun, relaxation and some one on one time.  Very happy for you!   :)

    Chelsea
    Chelsea -I dont post as much as I'd like to but want you to know I am thinking of you and your husband.
    You are so supportive, caring and knowledgeable. I was hoping to hear he could get therapy or sir spheres treatment.
    I pray for all on these boards and my support group.
    Just wanted to offer support and understand the ups and downs of this disease.
    Sincerely. Barb

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