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Thread: Scan Today

  1. #21
    Top User mccindy's Avatar
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    Jun 2013
    Location
    Eau Claire, WI
    Posts
    634
    You guys are right. I have Medicare so I think I have some leeway. I'm disappointed because the PA who was my biggest advocate (and the best listener) is on an extended trip to several other hospitals (some kind of traveling teaching trip) until 2019 so I'm stuck with my NO for now, unless I want to travel to Northwestern in Chicago. I've consulted with one of the other docs at Rochester in the past and he basically just deferred to whatever my NO wanted. I think if I have any more seizures before June I'm going to insist on an MRI.
    One thing I found concerning - I had the two MRIs prior to this last one done locally and then forwarded to her to read, and the local radiologist's interpretation is available online. I read both of them and he had stated on both of them that there was no sign of any progression. At Rochester they showed me exactly where on both scans they saw the growth starting on the first one and progressing on the second, so I have no faith in the local radiologists at all to read my scans. I definitely have to go to Rochester or to Northwestern.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

  2. #22
    Senior User
    Join Date
    Feb 2014
    Location
    Virginia, USA
    Posts
    485
    Sadly it really doesn't matter what hospital system you are in you always have to look out for yourself first and foremost. Good luck I hope you get some peace of mind soon regarding everything going on.

  3. #23
    Moderator Top User
    Join Date
    May 2011
    Location
    Illinois
    Posts
    789
    I know a good epileptologist at Northwestern if you need a name. Since she treated me, i haven't had any (even small) seizures.
    Nikos

    Glioblastoma IV, frontal lobe - Dx March 2011. Treated with standard Stupp protocol
    Recurrence August 2016 (at 5 years PFS). Surgery August 2016, rechallenge with TMZ with immunotheraphy (nivolumab)

  4. #24
    Top User David52's Avatar
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    Jan 2013
    Location
    Central Wyoming
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    821
    Maybe a time for second opinion at Northwestern, just to be sure we are where we want to be? I absolutely hate that your having to deal with this like this.

    Many hugs, much love

    David
    65 yrs old
    March 6, 2012: Diagnosed Anaplastic Large (T-) Cell Lymphoma, Stage 1 (ALK-)
    3 rounds of CHOP unsuccessful.
    Beginning mid-June, 2012, received 6 cycles of Brentuximab at Huntsman Cancer Institute, University of Utah. Pet scans after 4th and 6th cycles showed no evidence of lymphoma.
    Autologous bone marrow transplant in November of 2012.
    17 radiation treatments for "consolidation" purposes between Dec. 26 and Jan.17.
    100 day post BMT check-up (2/26/13): NED. Pet scan on 7/10/13: Still NED.
    One year post transplant check-up: Still fine; NED.
    18month post-translant scans, etc. All fine, save a bit of arthritis.
    11/14/14: 24 month post transplant check-up--still NED. Scanziety still sucks.
    5/15/15: No NED this time; reactive nodes in groin; scheduling biopsy.
    Relapse confirmed/ started every 3 week brentuximab
    Allo transplant in Feb 2016.
    100 day post transplant scans in June 2016 fine.
    1 yr. post transplant blood work fine; clean scan. No GvHD so far.

  5. #25
    Top User mccindy's Avatar
    Join Date
    Jun 2013
    Location
    Eau Claire, WI
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    634
    Quote Originally Posted by NikosF View Post
    I know a good epileptologist at Northwestern if you need a name. Since she treated me, i haven't had any (even small) seizures.
    Thanks, Nikos. I am waiting to see how things go in the next month or two (my mom's wedding is taking up a lot of time and causing some stress, lol). and if I start to have more seizures and my NO is unhelpful or unconcerned, I will be contacting you to get some names at Northwestern. I appreciate, so much, everyone's support.
    grand mal seizure leading to MRI discovery of a suspicious brain mass in left temporal lobe May 24, 2013
    99% resection of a WHO Grade II diffuse fibrillary astrocytoma July 11, 2013
    1st postoperative MRI October 11, 2013 - clear for any regrowth
    occasional complex partial and absence seizures
    Clear MRI September 2016
    Regrowth on MRI March 2017
    200 mg of Topamax daily

 

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