| | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) |  "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | I still think your wonder woman. Even wonder woman is allowed to be human at times. You'll get through it and we are all here to support you. Don't ever forget that x
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
radiation 13/07/2009 x 7wks
chemo 15/07/2009 x 3 Cisplatin
last TX 28/08/2009
25/11/2009 PET-lymph node activity.
08/01/2010 CT Scan-ALL CLEAR
03/03/2010-Peg removed
01/2013 left side of Jaw removed and replaced with pectoral flap.
23/12/2020 scan show lesion in tongue
01/2021 SCC stage 3 base of tongue diagnosed
01/03/2021 chemotherapy started.
17/03/22 lost the battle. Missed dearly
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Oh Wendy...you are my sweetheart:) You are bestest cyber friend ever!! Your vote of confidence means a lot to me.
Steve...was your friend saying it shouldn't be hard to stop opiates? I'm not sure if I understood you correctly. Thank you also for your encouragement. I appreciate it very much.
Today has been another good day....I took half a pill this morning and the other half a little while ago. I think I should make it through the night again. I'm also weening off Lexapro and I'm feeling some depression. Has anyone tried St. John's Wort? I've never tried it and wondered if it works?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Suzanne, You will get through this. You are a strong woman. I am thinking of you and know that you can kick this. Good luck!
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: 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 | IMHO all of you ladies that endure this treatment and continue to post to help others are WONDER WOMEN.
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: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Suzanne,
Yes both my Oncologist and pharmasist frieds said in theraputic situations, i.e. non recreational use, you should not have bug problems, taper taper taper.
ask your doc today
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Where is Gary when we need him? One should NEVER cut a patch as it could kill you. Gary posted on this a long time ago. I don't remember the reason why but one should not do it. The correct way to do this is to step down to lower dosages. Please do not cut patches.
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Well Steve...I would have to beg to differ...I was taking it under the supervision of my doctor and pharmasist and it's very hard to stop.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Well said David. Caregivers are the heros for putting up with us. We are like the pup on the end of the leash, just give us a little breathing room and we will be fine.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Lets not forget our Wonder Men!!!! Jim....David...Charm...Jerry you have ALWAYS been a huge help to me since my days as a newbie. I would really love to have an OCF event where we could all meet. I always end up telling someone about "my friend" (fill in the name) from OCF.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hi Suzanne,
Maybe I was lucky! or not enough time, it was only about 8 weeks
Steve
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
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