jackson1

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  • in reply to: New to this forum #69751
    jackson1
    Member

    Get a second opinion. My friend was diagnosed about 60 days ago. His first doctor said it was inoperable and chemo and paliative care was his only option. Through this site I found Dr. Selby and USC/Keck and Dr. Selby said it was absolutely operable and he operated. Today my friend has no “visually detectable” cancer. They are giving him one round of followup chemo, just to be cautious, but there is no sign of cancer. For a doctor to say “inoperable,” and not to even suggest the patient get a second opinion, is so wrong–and it happens all the time apparently. That has been my biggest surprise throughout my friend’s experience. Needless to say, get anogther opinion, particularly with an oncologist and a surgeon who see lots of CC patients. It is a fairly exotic, and some doctors simply have more understanding, resources and options than others.

    in reply to: Having surgery tomorrow #70116
    jackson1
    Member

    Good luck Mary. You are in my thoughts and prayers.

    in reply to: Lauren’s Surgery #70183
    jackson1
    Member

    I’m so happy to hear that Lauren had her surgery and is recovering. My friend went through all the same things–extreme pain, extreme weakness, tubes everywhere, no appetite, discomfort from morphine, etc. I think it’s very common from this surgery, so don’t worry. It all passes. But I should tell you that even three weeks later, my friend still feels sharp pain at odd times, and is still using a cane to walk. I’m told it really takes a good six to eight weeks to get back to normal, and I believe it. (He also needed two stents, and that prolonged his recovery.) I pray Lauren is past the worst of it. I’m glad she’s strong and determined, and she’s certainly lucky to have a mom like you by her side.

    in reply to: This Site Saved My Friend’s Life #69335
    jackson1
    Member

    Thanks Marion, you’ve been so wonderful and I meant to thank you by name. Your replys to my posts have been so helpful and informative, and really did guide me to Drs. Selby and Lenz. Like I said earlier, I can never thank you enough. God bless, J.

    in reply to: Long Term Survivors #69320
    jackson1
    Member

    Thanks so much. I’m sure there are others, even that we don’t know about, and all stories are appreciated. They all give hope. Thanks again everyone, J.

    in reply to: This Site Saved My Friend’s Life #69332
    jackson1
    Member

    Thank you Lainy, Mark, Gavin, Randi, and Pamela. I’ve read so many of your posts I feel like I know all of you. I wish you all happiness and recovery for you or your loved ones, whichever the case may be, and I’ll keep ckecking in, just to see how you’re doing. My friend knows of this site, but this whole experience has been so terrifying for him that he’s “assigned” the research to me, so I sort of monitor it and report back to him. Hey, that’s what friends are for–especially at a time like this. Take care everyone, I’ll be back soon. I appreciate you so, J.

    in reply to: Clean scan today- almost 2 1/2 years #68770
    jackson1
    Member

    Congratulations. So happy for your success and look forward to reading your positive posts long into the future.

    in reply to: Finding the right surgeon #66943
    jackson1
    Member

    Congratulations–what a wonderful success story. I wish all the outcomes were as positive. Maybe one day…

    in reply to: Surgery or Chemo #68996
    jackson1
    Member

    The surgeon has spoken with the oncologist and apparently the oncologist now agrees with the surgeon that they should “go in” immediately.
    It was a bit unsettling that there was a disagreement, but the surgeon was VERY confident and apparently the oncologist came around; it is the situation Pam referenced above.
    My friend really hated the first round of chemo. I think the thought of getting the cancer out quickly and not having to undergo months of difficult chemo is almost irresistable.
    I hope he’s choosing the right path. It’s potentially a life and death decision of course. Thanks for all your input. It really gives me perspective.

    in reply to: 6 Years and Doing Great! #68710
    jackson1
    Member

    Congratulations, you are an inspiration.

    in reply to: Lauren is finally getting what we have hoped and prayed for. #68827
    jackson1
    Member

    Wonderful news! Wishing Lauren a speedy recovery and may her success inspire others to get many opinions and never give up and never stop fighting. Lauren is lucky to have had you as her guide Pam, and when you both get on the other side of this terrible experience, may you have a lifetime of health and happiness and laughter and love together. You certainly deserve it.

    in reply to: Dad’s progress #68979
    jackson1
    Member

    Kathy, just a thought. If you are near The Cleveland Clinic why don’t you pursue another opinion about surgery. You may find another surgeon there (not an oncologist) who feels he can do the surgery successfully. I just found this to be the case in with my friend in Los Angeles. One oncologist said “inoperable,” and a leading surgeon has said just the opposite. Frequently doctors will disagree, and since surgery is the key to survival, it would be worth a second opinion if you ask me. The surgeon Dr. John Fung at The Cleveland Clinic has extensive exprience according to this site. Perhaps consider calling him…and I pray for your father’s recovery.

    in reply to: Question about Mayo Scottsdale #68784
    jackson1
    Member

    Thank you so much for your posts Marion and Kris. I read your link with great interest Marion, and your input on having multiple doctors was very helpful Kris. I so appreciate it.
    My friend saw Dr. Selby today and it was a very positive meeting. He feels my friend may be a candidate for surgery, and sooner than later. He needs some confirmatory data, but we are cautiously optimistic.
    I have to say that the people at USC, both Dr. Lenz, Dr. Selby and their assistants have been absolutely wonderful, patient and explanatory. I can see why they are so highly thought of here.
    They just might save my friend’s life, and if that is the case, I will never be able to thank everyone on this site whose posts directed me to them. I will be grateful to the day I die, and I mean that.
    You are doing such an invaluable service here…you are truly angels for the support, knowledge and comfort you provide. Now I only hope I can report good news tomorrow. Say a prayer please.
    Best, J.

    in reply to: Question about Mayo Scottsdale #68781
    jackson1
    Member

    Sadly Dr. Lenz cannot take on new patients at the moment, but he agreed to monitor my friends treatment, and in fact he suggested a couple of modifications to the chemo protocol, and asked for three additional tests. What a great guy–I was thoroughly impressed–and as others have noted, his assistant Taline is truly exceptional as well.
    My friend sees Dr. Selby Monday and I hope he is optimistic about the possibility of a resection. Does anybody have any input as to the parameters that make resection possible? I know adjacency to major blood vessels is a factor. I assume metastases are as well. Any input would be appreciated…especially if it helps me get through the weekend. Thanks, J.

    in reply to: Lost my father to cc on 12/08/12 #68863
    jackson1
    Member

    I’m so sorry. The speed in which this disease can act is just startling. My heart is with you. I hope with time your memories of the happy times displace these difficult ones. God bless, J.

Viewing 15 posts - 1 through 15 (of 19 total)