#91997 03-17-2009 04:20 PM | Joined: Mar 2009 Posts: 6 Member | OP  Member
Joined: Mar 2009 Posts: 6 | Husband is in hospice. Since Dec. 19, he has had rad. neck diss. on right side, totally diseased inside, lost muscle, vein, tissue, nerves. Tumors back within 1 month. IMRT and Cisplatin Jan. 19 - both ceased on Feb. 20. Right side of face, neck, head, front of throat 100% tumor covered. Has lost 35 pounds, can't talk, frail, PEG 100%, hand tremors, constant fatigue, tumors breaking open and oozing, now on oxygen, sleeps most of time.
We have 2 teenage boys watching this--who knows what this is going to continue to look like day by day?
Last edited by Pete's wife; 03-17-2009 04:42 PM.
| | | | | Joined: Feb 2009 Posts: 20 Member | | Member
Joined: Feb 2009 Posts: 20 | I'm so sorry to hear this. Was your husband just diagnosed in December? I wish you and your teenage boy's the best.
Kelli | | | | | Joined: Mar 2009 Posts: 6 Member | | OP Member
Joined: Mar 2009 Posts: 6 | Diagnosed in Oct. spot under tongue, partial gloss, partial neck dissection Oct. 6. Lymph nodes clean, new tumors detected in early December, radical neck diss Dec. 19. | | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | I am so sorry about what you are going through. Watching something like this is the hardest, I am thinking of you at this time.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Im very sorry you are going thru this. Wishing you strength in this difficult time.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | So sorry to hear this news. This time is so hard. I will be thinking of you and your boys.
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: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | Nothing else that can be said, I'm sorry it has come to this.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | | | | Joined: Mar 2009 Posts: 4 Member | | Member
Joined: Mar 2009 Posts: 4 | My heart is with you - weeping.
| | | | | Joined: Mar 2009 Posts: 6 Member | | OP Member
Joined: Mar 2009 Posts: 6 | My husband was never a smoker. He has also battled lung disease in the last 3 years. The medication that suppressed his lung scarring has shut down his immune system. Drs. have not seen such aggressive cancer take its toll so quickly. I am grateful for Carepages.com for being such an awesome support vehicle for us. My husband's name is Pete Greve.
I am devastated. | | | | | 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 | This cancer is horrible and we all share your grief.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Mrs Greve,
I am so sorry for you and your family. I will keep you in my thoughts and prayers.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Jul 2006 Posts: 388 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 388 | Please know that no one understands what you are going thru more than this group of uplifting OCF members. You know you have us in your corner with strong and caring support thru every step. Talk to us anytime you need to, knowing we are always here for you. Warmly, JaneP
Husband: 3 SCC gum and cheek cancers 2002, 2005, 2006: surgery only. Scans clear after removal of small, well differentiated, non-invasive cancers. No radiation. 4th SCC lip diagnosed 4/13/07 - in situ, removed in biopsy. More lip removed 2/8/08 - dysplasia. 2 Biopsies 3/17/09 no cancer (lichenoids)
| | | | | Joined: Mar 2009 Posts: 23 Member | | Member
Joined: Mar 2009 Posts: 23 | My heart is heavy reading your story...my father had lymphoma over thirteen years ago, and watched him go thru that. Now i am my mom caregiver and reading all this, makes me wonder if it all worth the pain and agony....she is in rad treatments right now. 14 to go...she is getting peg tube today....hopefully releave the pressure of eating .....
my heart is heavy and my prayers are with you hun,honest to goodness for you and your family!! | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | There really not a thing I can add except your family is in my prayers . Geez, I am tongue tied here for lack of words.
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: Jan 2009 Posts: 62 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 62 | I am so sorry you and your boys are going through this. You guys have the toughest part of these horrible cancer situations. I'll be praying for your strength at this time. Carol
DX 6/05 Rt Tonsil SSC advanced to lymph node. Stage 4b. RND, took tonsils, strips off the back of tongue, throat and nose. 19 lymph nodes removed only 1 bad. Once healed, 7 weeks of treatment including 35 IMRT, 7 Cisplatin, 7 Erbitux and 35 nasty Amophostine. Almost 11 yrs out now. Woooo Hoooo!
| | | | | Joined: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Our thoughts are with your family at this most difficult time.
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: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I'm so sorry for what you're going through. I totally understand because I have just been through this myself. I have three teenagers who watched their father die from this horrible disease in a slow and torturous manner. Let me just say that they are probably stronger than you are right now. Someone said to me that as long as Mom holds up-the kids will also. I feel like they are getting over it faster than I am at this point. We were married for 20 years-not all peaceful but good for the most part and I feel like I lost a part of myself. Let me know if I can help in any way.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi there- I am so sorry that you are enduring this right now. I wish there was something that could change it.
We are here to support you and provide a shoulder to lean on.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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