| | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | OP  "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | A dear friend of mine has been diagnosed with a large, inoperable brain tumor in his cerebellum. It has already started affecting his motor functions (balance).
Do any of you know of any similar forum to what we have here that specializes in brain tumors or brain cancer.
I have received such unbelievable support from OCF that I'm sure hoping something exists that can help him and his family similarly.
thank you all
Tony G
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Tony, So sorry to hear about your friend. Try ACS forums http://csn.cancer.org/
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | A little update on friend:
They went to MD Anderson for diagnosis, found 3 primaries in his brain. He's too weak for simultaneous chemo and rads, so it's rads only, chemo later depending on how he tolerates.
He's pretty devastated besides being very weak and having loss of motor control. All he wants to do is sleep, which I expect is just an escape. His wife is similarly devastated. She's trying to show strength, but it's taking it's toll, especially since she lost both her parents in last 5 years.
Fortunately he has a veterinarian brother who has taken on role of advocate. He's the one researching everything and educating the whole family as no one else is in the right frame of mind to do so. He goes with him to all appointments and treatments.
The patient is my son's father-in-law. Needless to say, with me having OC at same time, both son and daughter in law are pretty worried about their dads. It's made my son take a much more active role in keeping up with my treatment and how I'm doing.
Thank you guys for being the wonderful OCF support group that you are. I would be lost without you.
Tony
Last edited by n74tg; 11-06-2013 05:24 AM.
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Sorry for your friend. Try The Brain Tumor Foundation, and National Brain Tumor Society. They have links to on-line groups.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Okay I know this sounds all hocus pocus.
a super healthy diet - including flax. Ground fresh flax added to smoothies and foods. Seriously I know it really does sound hocus pocus, but I am one of the advocates of a healthy diet, because it can't hurt and may help. Under no circumstances take this to mean that this is a replacement for actual conventional treatment. A good diet, combined with certain foods will actually help build his immune system for what he is about to tackle, and help support his normal body functions. When I was looking at ways to help post treatment someone sent me a link to something that talked about a healthy, alkaline diet, fresh flax, minimal sugars, and freshly prepared foods (no toxic chemical stew foods (processed) etc... they had a lot of success with adjusting a person's diet, to help the body fight cancer.
Again - conventional treatment is primary. But with the support of a good dietician, a holistic approach to treating this may help. (and frankly MD anderson is the best place to be as they do offer this holistic approach)
And to the people reading this shaking their heads - this is NOT an alternative therapy. A healthy diet is one of the building blocks of life. I'm simply suggesting he adjust his diet to a lot of leafy greens, fresh veggies, high protein grains and seeds, less sugar, and less/no processed foods/chemicals. High protein will help with healing. Do talk to the radiation specialist as they will have a list of foods/vitamins that are counterproductive when going through radiation.
Finally, wanting to sleep/decreased consciousness, may have a lot to do with the location of the tumors.
Multiple brain tumors to me sounds like mets. Is he a lung cancer patient possibly? And maybe doesn't know it?
best of luck with your son's father in law. hugs
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Oct 2013 Posts: 559 Likes: 1 | My friend passed on Tuesday. Though I don't know the details yet (have to talk to son first) I'm suspecting he may have given up the will to fight.
When I know more, I'll report.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good
| | | | | Joined: Sep 2013 Posts: 94 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2013 Posts: 94 | So, so sorry to hear that Tony.
36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound
| | | | | Joined: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Tony, I'm so sorry to hear your news. So sad for his family.
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | So sorry to hear this news about your son's father-in-law. It sounds like you have a wonderful family. I hope that the closeness you all share will help you to get through the difficult days ahead.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Nov 2013 Posts: 18 "OCF across the pond" Member | | "OCF across the pond" Member
Joined: Nov 2013 Posts: 18 | So sorry to hear about your friend, Tony.
Best wishes to you and your family
Cheryl
Cheryl aged 50. Long time smoker but quit 4 years ago - rarely drink alcohol
Referred oral health 17th Sept '13 -
Incisional biopsy right tongue 23rd Sept '13
MRI 30th Sept '13
Confirmed invasive moderately diffirentiated SCC 2nd October 2013 - Chest Xray and MRI Clear
Surgery planned 12th Nov '13 Partial glossectomy, neck dissection, flap from forearm.
Surgery cancelled - non-availability of HDU bed
Surgery resceduled 18th Nov '13
Fighting fear on a daily basis but keep smiling.
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