| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) |  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I have sent you a private message (PM) a while back. Please take some time to review it and read thru the link. It contains important info, including how to add a signature. This is a very important tool in helping us to help you.
To get your messages, look next to the "My Stuff" tab, towards the middle of the top. You should see a tiny flashing envelope. Click in the envelope and you will get your messages.
As far as adding supplements to your diet, its best to check with your physician and use caution. What works for one person may not work for someone else. Your doctor has your complete medical history and knows you best. The doc also knows what things can interfere with your treatment and possibly cause a severe reaction. Even some vitamins are to be avoided during treatment as they can cause some serious problems with diluting the strength of treatments.
Best wishes!!!
ChristineSCC 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  | | | | | Joined: Mar 2014 Posts: 6 Member | | OP Member
Joined: Mar 2014 Posts: 6 | Hi all
would like to understand why some doctors want to leave the port in place for 2 years and some offer to take it out 2 months after completing treatment.Any thoughts?
Thank you!
51 years old brother
Dx 10/13 ,HPV+ tonsil T1 N2 M0
3 surgeries 11/13 (no clear margin)
1/14 started rad:70Gy and 3 cycles of cisplatin
finished treatement 3/14
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | I had to keep mine until I got my final PET scan. My MO explained that they wanted the port available if my scan showed any remaining cancer (which would then require more treatment, including more chemotherapy.)
I had it removed as soon after my clean scan as I could arrange it, 10 days.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Mar 2014 Posts: 6 Member | | OP Member
Joined: Mar 2014 Posts: 6 | Hi
Just wanted to post how helpful this forum is.In June my brother had a PET SCAN.It came back suspicious in throat and lungs.They did 3 biopsies in throat and gave him a course of antibiotic for the lungs to see if it will clear hoping that it was just an infection in lungs.Of course it was stressful to think that he could have a recurrence so soon after finishing treatment.Well it was helpful to see in forum that often the PET SCAN gave false positive.I kept repeating it to my brother and the family over and over until we got the results back and we were very lucky because when the results came back it was indeed a false positive!
Thank you for the informations!
51 years old brother
Dx 10/13 ,HPV+ tonsil T1 N2 M0
3 surgeries 11/13 (no clear margin)
1/14 started rad:70Gy and 3 cycles of cisplatin
finished treatement 3/14
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 |
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 |
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: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Huge sigh of relief for you all. Fantastic news. Thankyou for sharing.
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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