| | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Not too much to do about "maintaining the port." During treatment, the infusion nurses do all that is needed. When treatment ends and before you choose to have the port out, it simply needs to be flushed about every 6 weeks.
Bill still raves about how nice it was to have that port even for routine bloodwork.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hi Jeff, I also had the 5x/wk-Amifostine. Is your mouth very dry? My RO said I may not see the results for 2-4 years after treatment! My mouth is still very dry-I take water with me all day, home or going out. How long did you have the port in for? My RO says needs to stay in until @least 6/20/10 (2nd yr aniversary) Thanks! Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | I had a PEG put in after the first two weeks as I had a pretty severe reaction ( mouth sores, etc. ) to the radiation. I "only" lost 25 lbs. and found it a lifesaver for pouring down calories, nutrients, and medications when throat conditions only got worse. Good luck on your decision and with the remaining treatements. You have LOTS of company here.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Feb 2004 Posts: 598 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2004 Posts: 598 | Mouth gets dry, but water does fine. Keep in mind I had both sub-mandibular salivary glands removed in the neck dissection, so my issues are not only due to radiation. I am about 2.3 years out from end of treatment, and some things get better(taste, dry mouth), others get worse (neck & shoulder muscles), but all in all not too bad.
Jeff
SCC Right BOT Dx 3/28/2007
T2N2a M0G1,Stage IVa
Bilateral Neck Dissection 4/11/2007
39 x IMRT, 8 x Cisplatin Ended 7/11/07
Complete response to treatment so far!!
| | | | | Joined: Oct 2009 Posts: 1 Member | | Member
Joined: Oct 2009 Posts: 1 | hi guys my dads having his op on monday the doc said they were going to remove half his face dont know how to feel dont wana cry dont think ill stop anything advice anything you could say would love to here whats the best thing i can do for him | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Stara,
I responded to your PM so look for it.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | All
Stanley is a colleague of mine, and I'm the "friend" who suggested he come to the OCF. I have been staying in close contact with him as he enters the toughest part of his treatment this week. He's a very, very sick guy right now...I will update everyone as I hear of any changes.
BTW...............it's been WAAY too long since I've posted, and it's good to be back home!
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hey Wayne,
Great to see you back here. Hope YOU are doing well.
Since Stanley hasn't been back since he first posted, I assume that he must be feeling pretty lousy. Hopefully, he can get back here to soak up some of the good advice posted above.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Jerry
Good to see you too! Im doing well, hope the same is true for you.
All, Stanley is a VERY sick guy. He was hospitalized following his chemo treatment again, last week, and this week is entering his 4th week of rad. Today was another day in hospital for him so that they could rehydrate him a bit. I'm hoping to hear from him or his wife later today, and will try and keep everyone up to speed
Lastly...I hope EVERYONE is doing well! We have been very busy over the past year battling the beast, with an Uncle and an Aunt losing their fight, and my Father in Law now in hospice, with his battle coming to an end as well. My thoughts frequently turn to my friends here at OCF, even though time seldom allows me the luxury of getting caught up
Wayne
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | So sorry to hear about your friend Stanley and your relatives. It boggles my mind how many people I hear about almost daily coming down with some form of cancer.
I hope you hear some good news about Stanley and that your FIL is comfortable.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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