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#120072 08-06-2010 11:14 PM
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jennie Offline OP
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So Im not finding much information on this site about cerebellum cancer. Erik has been through 2 rounds of tongue cancer in the past 4 years (seems to pop up at the 2 year mark each time)and at this latest 2 year check up, the doc noticed speech changes. His tongue is sluggish. Went in for a PET the next morning and by early afternoon, had a call from the doc that his cerebellum was positive. (and a lymph gland too- but dont know where- doc lost us on "brain") So anyone know if this is somewhat common? I know the brain must be more susceptible to it- being so close- but anyone know outcomes? Actually I know statistical outcomes- anyone come out with a good outcome?


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
jennie #120077 08-07-2010 04:18 AM
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I can not answe your questions, but wanted to tell you I will put you on my prayer list.


Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
Joined: Jun 2007
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Jennie, Im sorry to hear of your husbands latest results. PET scans are known for false positives. Is your husband being treated at a cancer center?

Im sorry, I dont know stats. Im not one who pays attention to that info. Im a 3X in 3 yrs cancer survivor, the stats are against me and I probably shouldnt be here. Thats why I ignore the numbers.

A second opinion at a major cancer center is a good idea.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Jennei- So sorry to hear of this news. Have they identified the tumor and it's size? Hopefully they could operate and remove it. Definitely get some advice and make a decision on treatment as quickly as you can.

Praying for a positive outcome from this.

Sending you love and strength. K


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #120091 08-07-2010 03:50 PM
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Posts: 235
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Jennie, I can only imagine the level of fear and anxiety you are feeling right now. We just had weird results from my husband's biopsy and I just made myself crazy looking for outcome, results ,etc.
Christine's words were just helpful to me as a reminder that each case is very different.
Have they told you what they are thinking in terms of treatment???


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
SusanW #120130 08-08-2010 09:49 PM
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jennie Offline OP
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He had a contrast MRI done on Saturday and we are expecting results tomorrow.(Monday) Of course the doctor is being cryptic until the MRI results are in. He has only told us that this is very serious. I totally agree with you Christine- statistics are for other people- because so far Erik has blown the statistics-
Waiting and only having part of the story is soo hard. This is when I realize that no matter how far away from the disease, (2 years again) it has a vice-like lock on our lives.
Oh and a side note about CCC's- Erik is being seen in a very good practice that advises only with three other CCC's tumor boards and follows their recommendations. He is also followed by a doc at Fred Hutch in Seattle. So we believe we have some of the greatest care available in Spokane.


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
jennie #120155 08-09-2010 03:23 PM
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Hey Jennie, wondering if you got the results and any other info yet? Just wanted you to know I was thinking about you.

Glad you feel so confident about the MDs. It really helps to know that a competent, caring team is behind you.

Last edited by SusanW; 08-09-2010 03:24 PM.

CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
SusanW #120200 08-10-2010 10:34 PM
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Jennie- Thinking of you and hoping the MRI went alright.
XOOXO Kate


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
misskate #120564 08-17-2010 09:24 PM
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jennie Offline OP
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MRI results came back NO CANCER!! This was fantastic news for us! The PET came up positive in his cerebellum because he had a small stroke. We are pretty much the only people alive who have reason to celebrate a stroke. He has ventricular stenosis to his cerebellum, doctors believe that it is because of the radiation to his head and neck (oh that darn radiation)- He will see a neurologist this week and we will see what he thinks should be done- so onward through this little detour in our crazy and unbelievable lives. Thank you for the support- once again - Grateful for OCF.


Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads.
Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol-
3rd reoccurrence 5/18/12- partial glossectomy
jennie #120565 08-17-2010 09:29 PM
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SwEET! that is fantastic news!


Mark, 20 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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