| | Joined: Mar 2013 Posts: 23 Member | OP  Member
Joined: Mar 2013 Posts: 23 | Hi Everyone,
Round and around we go again.
Last Thursday, we went to Baltimore for Jack to have port removed as he's cancer free (Yippee!) which was fine and also to have another esophageal dilation. (Previously, his main problem with not being able to swallow was due to strictures on the voice box but surgeon said with speech/swallow therapy this would improve over time). Well, this time, Jack's throat was closed at the top so surgeon decided to do another Tread procedure where they use a flexible scope through the stomach tube and at the same time go down the throat and meet and open up the throat. During surgery Jack's stomach collapsed and he had to have emergency surgery to repair that leaving him with a 4 inch scar and pain and a hospital stay for two nights. He came home Sat and again it's been really rough. He was back to working in the pms and we thought the worst was over and surgeon would resolve swallowing problem. No! He has to wait for stomach to heal then go back for Tread procedure on Nov 14 and have esophageal dilations every two weeks to keep throat open so he can swallow.
I am beaten down and so depressed and exhausted and it's so hard to keep upbeat and cheerful and positive when I'm feeling like this. Jack is back to being very depressed again and just sits in the same chair watching hours of television. I have to muster up every ounce of energy for myself and him! Boy! When does this end? Every time you think things are getting better something else happens. Jack says he feels like he's being punished. I said (I hope I was convincing enough) that it's another lesson in life for us and it's just another set back and we'll get through this too. Cancer Free is a Big Deal! Now on to Swallowing. Please!!!!
Sorry, I just needed to vent.
Pamela
Pamela (57) Caregiver to husband Jack (68)
2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+
3-8-13 PEG, Port for Chemo, Biopsy BOT
3-22-13 Start Cisplatin 1X Wk X 5-6 Wks,
3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX)
5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
| | | | | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | Vent away Pamela, I am sorry to hear that just when things were looking up, Blamo! well I hope that he heals quickly.
Shawn U.
. Radio/Erbitex:(35/6.) .6/13 RSSC with met.to left neck.9/11/13 MND with left tonsil removal.9/18/13 margins failed, .Dx Terminal. 10/22/13 Dx.StageIII Lymphedema. Carboplatin/Taxol, cancer progression,WECF
3/14/2014 given 2 weeks, 3 maybe. All the veins in my head are slowly leakinging due to Ehlers Danlos syndrome. lucky thing is that my spinal fluid leaking out my nose is slowing the build up of pressure in my huge, huge head. you would not believe.
| | | | | Joined: May 2013 Posts: 185 Likes: 3 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2013 Posts: 185 Likes: 3 | Agree with Shawn - I think we have all faced setbacks and somehow we stir up the drive to press through but not without some grieving. You made it through cancer and you will make it through the swallowing. Best your way
Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
| | | | | 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 | So sorry Pam but you do have a place to come and scream all you want. We listen because we all have been thru crapolla with this cancer.
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 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 hope things get better in the future with the next tread, and dilations. I never had them done, so can't say. Recovery can take a while, even up to two years or more in some, and hopefully this soon shall pass.
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 | Things will improve hopefully. Unfortunately his body really has gone through the wringer and for some people it just takes longer to heal. Patience my dear, and revel in the fact that he is now cancer free. ;o) 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 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 | Pamela, I am so sorry that you have come up against a bump on the road to recovery. My husband's esophagus is totally closed post treatment and we have been researching TREAD and CARD. So, I believe I understand how frustrating it is for you. Hang in there. Hopefully things will get better when his stomach scar has healed. As a caregiver myself, I know what a rollercoaster ride it is to watch a loved one go through all that.
Last edited by gmcraft; 10-10-2013 12:51 PM.
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: Oct 2013 Posts: 2 Member | | Member
Joined: Oct 2013 Posts: 2 | Pamela,
Without the support from people like you, people like me would not be here. Thank you for being there and carrying the load we are not able to.
Jim, age 72
12/95 Biop on 55th B-day
12/95 Dx: SSC - BOT; no smoke/chew, only very occasional alcohol
1/3/96 Start 35 days XRT
1/5/96 Chemo #1 (Cisplatin + 5FU). burn blisters internally from mouth to other end
1/8/96 Hospitalized; lost +20#'s over wknd; lost 2 days XRT
1/11/96 PEG: stabilized wt loss @ -30#; no eat/talk 5 months
2/22/96 End XRT
QOL, all things considered, FANTASTIC!!
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