| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
It is with a very heavy heart that I bring this sad news to my fellow OCF members. One of our long time active members passed away suddenly on Monday. This man was admired for his integrity and was well respected in everything he took part in. He didnt do anything half way. Over the years, he spent countless hours volunteering and helping others here on the forum. He assisted me with projects and was always willing to lend a hand to help spread oral cancer awareness.
Words seem inadequate to express the sorrow felt by the loss of Tom Baker, known to most forum members as Charm2017. I am certain Charm will remain in our hearts forever, never to be forgotten just like his posts will live on.
While no death is easy, this one especially broke my heart as Charm is a dear friend of mine. I had the pleasure of meeting Tom at the first San Antonio OCF walk. After the walk Tom and his lovely wife Bev showed me the Alamo and the riverwalk. We had a wonderful dinner along the river talking and laughing for hours. Last September we all got together again at the NJ OCF walk. I will always cherish these wonderful memories of a great man.
The world will not be the same without Tom Baker. Our dear friend is no longer in any discomfort or pain now, rest in peace Charm.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | The obituary will be in the Washington Post either Friday or Saturday. Charm has already been cremated. A funeral mass will be on Monday, May 6 at 10:00 a.m. at St. Agnes Church, 1914 North Randolph Street, Arlington, VA.
The family wishes asked for donations to the Tom Baker Memorial Fund in lieu of flowers. The memorial page is in the process of being made and will be available very soon.
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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | I am shocked and so saddened by this news. What a wonderful man Charm was! I always looked forward to his posts and many times communicated with him by PM. He told it like it was. I loved that about him. He never sugar-coated anything. He inspired me to think about things differently. God, I will miss him so much. My heart breaks for Bev and his son. And for you, too, Christine, as I know you had a special relationship with Charm and Bev. Thank you for sharing this with us. I am stunned.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | 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 | I'm very saddened by this loss. During my short membership, Charm and I had a few debates, I guess the way he and I are, but we always assumed our support for one another, and never held grudges. I was always worried about Charm, especially during his hospitalizations, and when not hearing from him, and looked forward to his return with his posts, debates, and on point research. I only hope to emulate him in life, but there is only one Charm! Rest in peace, my friend.
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 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 | What sad and tragic news. When we lose a member of this family I think it takes a piece of our hearts along with them. Yes, Charm was certainly a unique and very special person indeed. He had a way to make everyone's life just a bit brighter no matter what he was facing personally. We are all enriched from having crossed paths with this wonderful man. May you rest in peace Tom.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I am saddened beyond belief. Thank you Christine, for letting us know. Please give our love to Bev.
Kathy and Kevin
Last edited by KP5; 05-02-2013 06:23 PM.
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Feb 2012 Posts: 151 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2012 Posts: 151 | I will miss his fighting spirit. He was an inspiration to so many as he battled the third time. My prayers are with his family.
Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Oh, no. I am so sorry to hear this. I always enjoyed his incisive posts (and always got a laugh out of his frequent edits to "tone it down" -- indicative of his great passion to help others afflicted with OC). I can only imagine what it must have been like to go up against him in court or across a conference table! My condolences to his family. Back in June 2010, Charm posted on these pages an essay that he had submitted to the Washington Post's Health section -- and that the paper had published -- about his "new normal" when it came to his enjoyment of food despite having a PEG. He noted in his comments that "I'd give the direct link but that would reveal my 'secret identity'" -- since apart from a very few initial posts, where he signed off as Tom, he was known to us only by his OCF name. In his honor, I'm posting that direct link to his Post essay here.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | 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 | Christine, I forgot to thank you for the news and to tell you I am so sorry for your pain.
Ed
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: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | I am beyond sad at Tom's passing. I will need some time to process this. He was a friend and many times, a saviour for my soul. Words cannot express how much I will miss him.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Terrible news! I always believed that he will be able to come out of last recurrence.
May his soul rest in peace. We all will miss his guidance and support.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | 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 | I too am saddened beyond belief. What an inspirational man Charm was. He was definitely a role model for me.
I always looked forward to his posts and the very " black and whiteness " of them.
Tom, you will be greatly missed. At peace.
Bev, what a wonderful Wife, Partner,Soulmate, Caregiver, Supporter you have been to Tom. I wish you strength for the coming days, weeks, months to come.
Tammy and Kris.
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!
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | I, along with many others I'm sure, kind of felt he was invincible...I am so sorry to hear of this news.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Oh no . . Oh no. . . ! I'm so sorry to hear this sad news! I had so hoped and prayed that Tom - our much loved "Charm2017" could be with us much longer to continue to share his uniqueness with us. I always looked forward to his posts, and the inimitable way he had of expressing himself. I loved his directness, his humor and the love for his family that came through loud and clear. I so wanted to meet him and Bev some day. The tears flow now, and my heart breaks for all of us and especially for Bev and all of Tom's family. Thank you, Christine for letting us know about our dear, dear Charm. He will be with us always in our hearts.
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: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | I'm so sorry to hear this. Sad for his family and for us all.
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: Apr 2012 Posts: 111 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2012 Posts: 111 | What a shock. I am so sorry to hear this. I really thought he would be indestructable. Charm has been so much part of this forum with his wonderful posts. He will be much missed by all of us but I feel especially for Bev and everyone close to him.
Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
| | | | | 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 |
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 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Jul 2009 Posts: 453 | I am so sad to read this. I always admired Charm so much, for the support he showed Steve and I, his fighting spirit and most of all the love he held for his wife. Earth is a much sadder place without him here but heaven is so much better with him. Love to you Charm and to your family xo
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone
No surgery
Teeth removed 06/07/2009
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.
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | In the short six months that I have been a member of this forum, Charm was the beacon for me. I looked forward to his every post, sometimes for the knowledge, sometimes for the humour and always for his unique outlook. He embodied the fighting spirit that we all so badly need in this battle. I am heartbroken.
My condolences to his family and to Christine for her loss of a dear friend.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | I am saddened beyond belief. Charm never suffered fools gladly, and always knew how to put things in perspective. RIP "OldFrack". You have made an impact on so many lives.
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful to be alive.
| | | | | Joined: Jan 2011 Posts: 123 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 123 | I am so sad to read this! Having lost Ken suddenly as well it is so hard to comprehend how they can fight so hard and still leave so suddenly. My thoughts and prayers to Bev and the rest if his family and to everyone here who got to know Charm - it is a sad day for all if us.
Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | I'm so deeply saddened by this news. Thank you Christine for sharing this on FB, I often don't get on here anymore. Charm was just that....a charming individual. I enjoyed getting to know him and Bev in San Antonio, he truly was a great guy with so much heart and knowledge. He will be missed.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jan 2009 Posts: 476 | WOW - so terribly sad. It's so sad and difficult when we loose one of our beloved members here. Tom (like you Christine) dedicated so much of himself to all of us here that a HUGE void will definitely be left behind.
Christine I'm so sorry for the loss of such a special person in your life. My heart goes out to Bev and Tom's entire family.
Heaven is definitely a brighter place with Tom's presence.
Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Rest in peace Charm. A giant among men.xxx
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Christine: Now I know what your Facebook message was, and I am so terribly, terribly sad about Charm. I know you are destroyed by the news, but thank you for telling us. Charm was the NO. 1 FIGHTER in our group, and everyone will miss his wise advise and posts. May he rest in peace now and forever.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: May 2012 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 114 | So terribly sad to hear this news. My heart goes out to all who knew and loved him.
Amy CG to mom Janet - diag w/ early SCC 8/11-surg w/ rad neck dissect & graft from arm/thigh 9/11-evid in nodes tx 6 wks rads (5/wk) w/cistplatin (1/wk for 6 wks) began 11/11-wk or 2 break 12/11 due to severe side effects-done 1/12- 3/23/12 mets to liver lung bone-hospice 4/7/12-lost fight 4/22/12
| | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Charm, of all the online friends I have you touched me the most with your heartfelt passion for living the right way, speaking the truth, forget the sugar toppings. I will truly miss you my friend; I was just so worried recently as your posted dwindled, knowing they reflected your true health condition.
Gdd Bless by dear friend,
don
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: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | I am so shocked and grief-stricken to hear this news. Christine, I express my condolences to you because you, especially, knew him well. I also express my condolences to his beloved, Bev.
Charm and I were diagnosed with recurrences about the same time last summer. He told me that he was very competitive and wasn't going to take this lightly. We had an agreement to cross the finish line together, holding hands. He held me up when I needed it, going through rads and chemo for the first time. Afterall, he was an unfortunate expert.
In our later interactions, we would do more PMing to check up on each other as neither of us felt much like posting. I knew he was not doing well from what he told me, but I had no idea how badly he was doing. I think he spared me his problems so as not to scare me.
Well, Charm, dear buddy...I read this news and let out a huge gasp, so much so that my 4-year-old daughter came running over to see what was the matter. We were not ready to lose you, especially without saying "goodbye", but as always, you did things on your own terms. That was one of your most admirable qualities, among many.
I know you will be watching down on us, dear friend. You will always be remembered, never forgotten.
I love you, you stubborn "old Frack". May you be at peace now, with only joy and no sorrow. I'm so glad we met.
Love,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | What a beautiful message, Kerri. Charm will be proud
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Charm's family has asked that instead of flowers that donations be made to The Oral Cancer Foundation's Tom Baker Memorial Fund. There is a photo of Charm and his lovely wife Bev. I took this photo last September at the NJ OCF walk hosted by Susan Lauria. Charm especially loved being among his fellow OC survivors as is evident by the smile on his face. Tom Baker's Memorial Fund
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: Apr 2009 Posts: 329 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | I'm very sad to hear this. Yes, Charm was one of a kind. I would always read his post he was an interesting man. My condolences to Bev. RIP Charm....
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | To Charm - You Just Give Me A Reason
Right from the start
You were a thief � you stole my heart
And I your willing victim
I let you see the parts of me
That weren�t all that pretty
And with every touch you fixed them
You just gave me a reason
Just a little bit's enough
Just a second, we�re not broken just bent
And we can learn to LIVE again
It�s in the stars
It�s been written in the scars on our hearts
We�re not broken just bent
And we can learn to LIVE again
***
Thank you Charm for all you have given to me and to all of your OCF Family. Words cannot express how much you will be missed. Rest in Peace my dear friend.
***
(Thanks to Pink for unknowingly letting me paraphrase her new song 'Just Give Me A Reason'. I am sure she would be proud of its use)
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Apr 2011 Posts: 131 "OCF across the pond" Senior Member (100+ posts) | | "OCF across the pond" Senior Member (100+ posts)
Joined: Apr 2011 Posts: 131 | I feel sad......charm was like a constant on the site for me from the first time I joined and when ever I needed to feel confidence in getting better.
He was a good soul and will be missed xx
Scc nasal cavity /hard palate
Surgery removal of septum and roof of mouth 15/3/11 cl margins
Rt and cisplatin 6 weeks starting 24/5/11
Obturator
Age 45
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | A beautiful picture of Charm and Bev, Christine. I know that makes you feel good and bad when you look at it, but thanks. I donated (I think) to his Memorial that you furnished. At first it wouldn't accept me, then it did. I know everyone is devastated about this because Charm was such a big part of this Forum. How sad.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Apr 2009 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2009 Posts: 104 | So many will miss him here.
GM, for John who has SCC Rt tonsil with 3+ nodes, Stage T1 N2b MX; surgery 04/09; Rad X 33 completed 7/14/09...f/u imaging and scopes looking good as of Feb 2011
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 |
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I like Donna needed some time to process this sad news after reading it 24 hours ago.
Charm joined 7 months after me and right from the beginning his posts were so rich in both humour, accurate and well-informed information.
My sincere condolences go to Bev, his family and friends. Also to you Christine and all the other survivors who got to meet him on the OCF walks and those that got to know him through the forum.
Thank you also for the link to the lovely photo of Tom and Bev.
How wonderful that the proceeds of his Memorial Fund Donations will go to the Oral Cancer Foundation. I will be doing that today.
His posts will live on for all of us here and inspire and inform new members in the future.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | RIP Charm......condolences to the family.....
Thanks for posting on FB Christine.
CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | there are no words.
All I can do is join the hundreds of others to voice my gratitude for Charm's support and wisdom over the years. Charm's posts allowed me to help Alex at a time when he was overwhelmed with fear and the enormity of what he was facing. Whilst Alex would not always heed the warnings and advice of the healthcare workers or myself, he would always listen when the conversation started with "Charm says ..."
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED Still underweight
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 |
I am very sad to hear this. My sincere condolences to Bev and the rest of his family and friends.
Karen
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | Joined: Dec 2012 Posts: 17 Member | | Member
Joined: Dec 2012 Posts: 17 | Because I could not stop for Death,
He kindly stopped for me;
The carriage held but just ourselves
And Immortality.
We slowly drove, he knew no haste,
And I had put away
My labor, and my leisure too,
For his civility.
We passed the school, where children strove
At recess, in the ring;
We passed the fields of gazing grain,
We passed the setting sun.
Or rather, he passed us;
The dews grew quivering and chill,
For only gossamer my gown,
My tippet only tulle.
We paused before a house that seemed
A swelling of the ground;
The roof was scarcely visible,
The cornice but a mound.
Since then 'tis centuries, and yet each
Feels shorter than the day
I first surmised the horses' heads
Were toward eternity.
--Emily Dickinson
Thanks, Charm, for your experience and expertise, courage and camaraderie, and friendship to friends you never met.
"I have always depended on the kindness of strangers."
Blanche, Tennessee Williams' "A Streetcar Named Desire"
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Charm's death notice, which includes the link to donate to the memorial fund, is in the Washington Post today.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | Joined: Jun 2011 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jun 2011 Posts: 54 | Sorry to hear that this fighter is gone. RIP and condolences to the family.
Age 44. Diagnosed at 34 (2006) with T1N0 SCC tongue on right side. Neck dissed & 6 weeks Radiation. 30% tongue removed. Never smoked;
2nd recurrence 1/2013 on left side. Surgery to remove 2/2013 forearm flap/neck dissec T1N0; brachytherapy 4/2013;
3rd recurrence 11/2015 mandibulectomy for jaw bone cancer Stage IV/no lymph node involvement
| | | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2012 Posts: 214 Likes: 1 | What a loss, RIP my freind. Not many get to touch as many people as you. I love his last post. Here one for you.
Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | You're one of the toughest and most honorable men I've ever had the privilege of knowing and you changed my life for the better my friend. Even though sick and ailing yourself, after multiple rounds with the beast, you should me how to handle myself and keep pushing forward, to keep fighting for your family. I'm a better man for knowing you and I will miss your wisdom and attitude everyday, I'm truly thankful for the time we had together Old Frack. See you when I get there brother.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I am in tears reading this. He was a big help to me during my treatments. I am in shock. I need to apologize the I not here much anymore. I need to make it a point to come post more often.
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: Jan 2009 Posts: 225 "OCF across the pond" Gold Member (200+ posts) | | "OCF across the pond" Gold Member (200+ posts)
Joined: Jan 2009 Posts: 225 | Words fail me. This is so sad. Rest in peace Charm. My thoughts and prayers are with his family. We will light a candle in church tomorrow.
Girlfriend to Martin 49 years old at diagnosis
Diagnosed with SCC unknown primary June 2008.
Cancer found in single node Stage N2A (3 to 6cm).
Tonsilectomy 16th june, Radical modified neck dissection left side 30th june.
30 TX radiotherapy ended 9th October
First comparative study scan came back clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just haven't been able to find the right words after finding out Charm has passed. This is one guy I know we will miss very much. It won't be the same with the Fracker and his emails. I felt close to him and the words he would send me. Even when he 1st came into the forims and I thought he was a lady. Damn I felt dumb until he emailed me and laughed along with me,. He told me I wasn't the 1st to mistake him and laughed again. Sure will miss you Charm.
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | To those who may have missed the Washington Post's obituary for Charm here is the link. I know it would mean alot to Bev and their son for Charm's fellow OCF members to sign the guest book. It does take some time for the posts to appear but at this time there are only 7 entries. Lets show Charm's family how loved and respected he was by taking a minute to sign his guest book. Thank you!!! Tom Baker's Guest Book (for Charm)
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: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | | "OCF Canuck" Supporting Member (50+ posts)
Joined: Jan 2013 Posts: 57 | Very sad news I will miss his always interesting posts and courage that has helped me and so many others cope with this terrible disease and the side effects of treatment to try and cure ourselves of it, charm was a caring person who helped many through their diagnoses and treatments,
truly one of a kind...rest in peace Charm
46 yr old non smoker moderate drinker
Lump on neck
Dx branchial cyst by fna mar 2012
Op to remove dec2012 biopsy back hpv 16 scc
Starting rads jan 31 no chemo docs say?
Finished mar13
Pet scan june 30 NED :)))
Back to work and enjoying life
Checkup aug 12 all good
| | | | | 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 | I have no idea what to say, and there is no way to alleviate the grief many including myself are feeling. I know many of the olds timers here are horribly affected by his passing, but make no mistake he will be missed by all....  hugs and love and RIP charm.
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: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 | for tom's family, christine and ocf friends, my deepest sympathies. sadly i read this the day my mom had a (surprise) cancer surgery at the same ccc my dad now celebrates 2 years out, and it reminds me how important it is *where* you are treated and knowing as much as possible.
charm's voice was spot on, no bs...i liked it even though it scared me into learning more.
there are a few good things about this experience. you see the best in people. it humbles you. you cherish time.
Last edited by Caco; 05-06-2013 08:25 AM.
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2008 Posts: 246 Likes: 1 | I have cried as if I knew Charm personally, and in a way, I guess we all did. He was brilliant, helpful, and clever on this forum, as I'm sure was true in all aspects of his life.
Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | I keep coming back here to feel the caring we all had for Charm and for any comfort we can give to each other. Charm helped us and inspired us all in so many different ways. His passing leaves a void . . . and a reminder to hold our loved ones a little closer and as Caco says . . to cherish time.
Still, a voice inside of me keeps crying out. . . . Charm! you left us way too soon!
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: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | We lost one of the very best.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Bev has asked me to post this thank you on the forum..... I write this with a heavy heart. Finding the right words has been difficult. I am so devastated over Tom's death. I had hoped that he could have hung on longer even though I could see that he was spending more and more time in bed. Hope and a lot of denial!!!
My son and I have been walking around in a daze this past week. My future daughter-in-law was our rock this week. She got the ball rolling and did everything that needed to be done. We are so thankful and grateful to have her in our lives. I was with Tom at home while we waited for the paramedics to arrive. I was able to hold him, kiss him, comfort him, and tell him what a wonderful husband and father he had been to myself and our son over the years. I wasn't sure if he could hear or understand what I had just said, so I asked him if he heard me and he shook his head yes. After the paramedics took over that was my last contact with him. His lungs had filled with blood and he had stopped breathing. I watched the paramedics in the back of the ambulance trying to keep him alive with CPR. Tom died shortly after we arrived at the hospital.
His funeral mass yesterday was beautiful and gave us all a sense of closure. I feel that Tom is in heaven now and at peace. No more illness and constant pain and worry. The night before he died neither one of us slept well that night and each time we wokeup we held hands until we both fell back asleep. Tom put up a courageous fight for 5 1/2 years. I admire him for that. I don't know if I could have done what he did. I know that a lot of that ability he had to maintain a positive attitude and keep fighting especially during his third round of treatment came from all of the wonderful love and support that he got from our OCF friends. I am so grateful that he had all of you and I thank you all for your constant support . He not only fought to stay alive for himself and his loved ones here at home but for all of you too on OCF. He cared a great deal about being a positive influence for all of you so you all could fight back too. It meant a lot to Tom to be able to reach out to all of his OCF friends and give back his love and support too for all of you.
Tom and I have shared many tears over the years for the passing of other OCF members and also for all of the other members dealing with difficulties and heartaches as well as their families. We enjoyed meeting other OCF members at the Oral cancer walks and have cherished their friendship and support. Even though Tom and I would have liked to get to know more members of OCF personally, I still feel like you are all part of my special family. My heart goes out to all of you on OCF too because you've all lost a special friend and his love and support. I want to thank you all for your donations to the Tom Baker Memorial. I hope that one day in the future we will be able to prevent other people from having to endure the same ordeal that we have all had to suffer through as an oral cancer patient and the oral cancer caregivers. I want to thank the other caregivers on OCF too for your support for me and our family members (my son, future daughter-in-law and myself have read your online words of support in the guestbook). I was Tom's caregiver over the years and I know how difficult, stressful, as well as how painful emotionally it is see a person you love have to endure so much pain and disability. Many of you have lost your loved one too so I know I'm not alone. I feel for the first-time caregivers who are just joining OCF. It's scary. Hang in there.
Thanks too for all of the love and support from our special friends, Christine from PA (we hung out together at two Oral Cancer Walks) and Eric from Idaho (we hosted Eric at our home for a couple of nights and got to know him personally while he was visiting Washington, DC with Brian on business with NIH). This is getting long and now I'm rambling. Thank you all soooooo much. Life goes on and somehow my son, Tom, and I will find our way after our grieving period. Tom would want us to get back into life and find joy again.
Best regards,
Beverly BakerIf you would like to read Charm's obituary and sign his guest book, here is the link. There are only about 20 signatures on the guest book and about 17 of them are from OCF members. It takes about 24 hours for your message to appear. It means alot to Bev to see these messages so if you havent written yet, please try to soon. Tom Baker's Guest Book (for Charm)If you would like to read more in depth about Charm's life or to donate to the Tom Francis Baker Memorial Fund, here is the link. The Thomas Francis Baker Jr OCF Memorial Fund(Charm) Thanks to everyone who has taken the time to post on these threads. Im sure one day Bev will be able to come here and read all the kind messages everyone has written. She will see how much her husband was loved from people around the world. He touched thousands of patients lives and will never be forgotten.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Thank you, Christine, for posting that for Bev. It was wonderful and sad reading what she wrote straight from her heart. Please tell her how much we appreciate her message. Also, if you would, please post her address so we can send her a personal sympathy card. Bev is blessed to have you for her friend, and you are blessed to have her for your friend. Thanks again,
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,291 Likes: 1 | Thanks SO much for posting Bev's note.
I really miss the old Frack, preparing and posting message, excited to hear his response, but now knowing I won't see his messages pop up is really quite just plain sad.
don
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: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | I cant post Bev's address on the forum for privacy reasons. If there is anyone who would like to send her a sympathy card, send me a PM and I give you the address.
@ Julieann, I emailed you her address yesterday. If you havent received it please let me know.
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: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Thank you, Christine for posting Bev's note. How kind it was of her to think of us and to share with us the last tender moments she shared with Tom. I miss him so much.
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: 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: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Thank you Bev and Christine. I find it very hard to read all the sad posts without crying. Charm was so very close to all of us and yet, in life, he had only ever met Christine and EricS. I find that an amazing fact.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Feb 2013 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 78 | I'm very sad to read this. Though I did not know him in person, I feel you could get to know him through all of his helpful, colorful, and funny posts. You will be missed. My best wishes and regards to the whole family.
Andrew
age 25
early 10/12 - enlarged lymph node area
01/13 SCC of L tonsil, L BOT, 2 L lymph nodes
stage IVa, T2N2bM0, HPV+
2/13 2 doses cisplatin big bag, 2 doses weekly cisplatin + 35x IMRT
4/13 TX finished
7/13 PET/CT - NED!
| | | | | Joined: Aug 2011 Posts: 78 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2011 Posts: 78 | This is such sad news. My daughter I had the privilege of meeting Charm and Bev at the Andover walk last year. May you rest in peace & keep watch over Bev and your loved ones as they learn to carry on.
Sally
Sally, 38 years old
T1N0M0 Left Tongue Lesion, Moderately Differentiated
10 + year history Leukoplakia, Mild Dysplasia before cancer diagnosis 8/2011
Scheduled Partial Glossectomy & Neck Dissection 9-17-11
| | | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Geez this news brought a tear to my eye... something that I didn't even do throughout my wife's treatment.
Charm - you will be dearly missed.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | So sorry to hear of Charm's passing.
I tend not to check the forum as frequently as I used to and was bit belatedly taken back by this very sad news.
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
| | | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | I am so sorry to hear about Charm. And I want to say hello to everybody here.
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
| | | | | Joined: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2012 Posts: 162 Likes: 1 | Unspeakably sad...:( A very valuable voice has been lost.
Prayers for Charm's loved ones.
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | I think often of all of the gifts of knowledge Charm gave me over the time I knew him, the hope and laughter...the motivation as only he could deliver it. None of these things I will ever forget, and my heart hurts at his passing.
I miss you bro.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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