| | Joined: Aug 2013 Posts: 144 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Aug 2013 Posts: 144 | It has been a while since I have been here. A lot has happened, I found out that I have Ehlers Danlos. I wish my mom would have explained that here and mine "double jointness' HAS MUCH MORE OF AN IMPLCATION THAT A WIERD HYPERMOBILITY OF MY FINGERS. It can and does cause fluid to very easily move from intravenous to subcutaneous area. My neck dissection back in 2012 would took away one of my jugulars, the left. Noqw my head is the size of a basket ball (it also causes cartalige and bone to be hyperstreachable. my working jugular, somewhat working is leaking into my head. sloswly. Luckily my spinal fluid is leaking from my nose from all the pressure. this is keeping me from dieing from cranial pressure. One of the worst things is that when I cry it just makes it worse (the pressure, somehow. I don't want to tell my mom that the birth defect that she gave me is going to be my demise. But cant a good hospital put in a drain or something. My HMO (Kaiser) will do nothing but give me mesds. should I go to CTCof A thanks for any replies
. 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: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Shawn, my heart is just breaking for you. I am so sorry that things have taken this turn, and in less than a year! How I hate this %&! cancer for what it has done to you.
I don't have an answer to your question about CTC of A, but the UC Davis Cancer Center is very highly regarded. The specialists you need may not be oncologists for this Ehlers Danlos syndrome, but they would know who to refer you to. In fact would it be possible to just go to the UC Davis emergency room? I agree that it seems crazy that Kaiser isn't offering you any options.
I am praying that you stay strong, no matter what comes --
(((HUGS)))
Lynn
Last edited by Mamacita; 03-14-2014 10:37 PM.
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | 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'm so sorry to read your news sunderwood. This disease just sucks.
I have no idea of exactly what you at going through but my heart is with you.
Have you got adequate pain killers? I imagine you must have severe headaches with the pressure build up. If they have told you that you only only have a short time left have you contacted Hospice for help..
In my prayers,
Tammy
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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Wow... I am speechless and so sorry.  I wish there was something more they would do for you... Perhaps they're worried about putting in a shunt or something as that could leave you open to infection and cause another whole host of problems. I know that makes no sense, in light of what you are facing but the medical establishment sometimes does nothing as a course of treatment. They could possibly have prolonged a friend's life two years ago by simply putting in a peg to help maintain her weight so she could go through a third round of chemo, but they dallied about until she'd lost too much weight for the treatment. They deliberately did this. I understand that sometimes they think they are helping by not prolonging the inevitable but this should be the patient's choice. I am hoping for a miracle for you and that you are comfortable. Please know that you are loved. 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: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | I'm very sorry to hear this Shawn, and your suffering. I wish they could do more for you, if not Kaiser, maybe another hospital can, besides CTCA. My thoughts are with you.
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: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Shawn,
I am very sorry to hear about the problems you are now facing. I never heard of Ehlers-Danlos before, but I did a quick web-search and there is a Ehlers-Danlos National Foundation and some info on the Mayo Clinic website.
If it was me, I wouldn't take no for an answer. You need to advocate for yourself and seek treatment elsewhere even if you have to travel. If you haven't done so already, do research and make lots of phone calls. Perhaps a family member or trusted friend could help you with this.
Wishing you the best.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | 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 | I was wondering how you were, Sean. I'm so sorry to hear your latest news and the prognosis. I can't imagine how you must be feeling, both physically and mentally.
I don't know what I can do from here but if there is anything you think of, please message me.
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: Aug 2011 Posts: 269 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2011 Posts: 269 | Glad I pm'd you, something inside must have prompted me to do so. Wish I had the perfect words. Praying for a miracle. Praying for peace. xo
Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | (((Shawn)))
Thinking of you
praying for you.
Peace
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
| | | | | Joined: Oct 2013 Posts: 58 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2013 Posts: 58 |
8/2013 dx sarcoma lft mandible 10/22/2013 fibula free flap with mandiblectomy, peg,tracheotomy, 11/8/13 trach removal, 2nd mandible sx 12/13, 35 IMRT 1/2014.4/2014 chemo x6 only tolerated 3. (Seizures) repeat fibula free flap 1/2016
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