| | Joined: Mar 2009 Posts: 48 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Mar 2009 Posts: 48 | So I have posted a few times, each time hoping that it would be the last, that my Mom would miraculously be cured of this wretched disease. However I could not have been more wrong.
Thursday my younger sister went to see my Mom and found her unresponsive. After 20 minutes of not being able to rouse her, she called 911. She was taken to the hospital where we were told that her liver and kidneys were not functioning properly. She was admitted into the ICU and was monitored overnight.
I spoke with her MO this morning. She was scheduled to see her to get the results of her bone scan from last week. I told her that not only would she not be in to see her today but that she was admitted into the hospital last night. She gave me results of the bone scan...DEVASTATING!!! The cancer has spread to her skull, sternum, ribs, pelvis, and legs-just to name a few. She stated that the best course of action at this point would be to sart hospice. Total punch to the gut! She told me that my Mom was terminal in January-I didnt know that. She said people just dont live with this type of cancer. She said that it would be a matter of days because her body was starting to shut down.
I have such a wonderful family and a great support group, I just felt the need to post. You all know the struggles that my Mother has been through and this site has been such a crutch through this entire process!
Colleen
26
Mom 48 diagnosed Sep 08 Stage IV SCC
full glossectomy, neck dissection traech and peg Nov 08
35 radiation treatments and 3 chemo
Mar 09 mets to lungs
Started Erbitux 3/09/09
06/26/09 mets to rib
Stopped Erbitux 6/26/09
Start erbitux/taxol 7/06/09
Started Hospice 7/24/09
Passed away 8/09/09
| | | | | 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 | My heart goes out to you Colleen. Please feel free to lean on us when you need to - we are here for you. Spend as much time with your Mom as you can. Even if she appears to be unconscious, she can likely hear you.
We are very proud of you that you have been able to put your own fears aside and be there for your Mom.
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: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Colleen I am so sorry to hear of the decline in your Mom's condition. I trust that Hospice will be able to provide good symptom control for your Mom and supportive care for you and the rest of your family. May you all find the strength and courage to face each day.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Colleen- take my advice and spend the time just BEING with your mom. Don't worry about anything else right now. I'm sending you positive thoughts and strength.
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: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | Colleen, I am sorry you and your family has to go through this...Be with your mom...and remember usually the last thing a peron looses is their hearing...no matter what talk to your mother...
be brave...
(((hugs)))
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
| | | | | Joined: Aug 2008 Posts: 100 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Aug 2008 Posts: 100 | Coleen, so sorry to hear what you, your mother and family are going through. You are so right to call this a "wretched" disease, it causes so much suffering for so many. Try to find comfort knowing that many will be sending thoughts and prayers your families way. Although it will be difficult, try to value the time you have remaining with your mother. I am sure in the future you will cherish these memories however painful they may be now.
God bless you and your family.
Tom-CG to wife, Pam 46@dx
Stage IV Tongue Cancer T2N2C
Dx 6/08, Surgery 7/08, 3 nodes positive
9/08 33IMRT/7Carbo/Taxol
4/09 node biopsy positive, mets to lungs/stomach
5/09 Cisplatin or Cis/Alimta study
6/09 Cis/Taxotere
9/09 Taxotere
1/10 Xeloda
3/10 Cetuximab weekly
6/29/10 lost battle
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Colleen, I am so sorry that this is happening to your family. Im at a loss for words. This was quite a shock to read your post. I will keep you and your mother in my prayers.
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 | Hi Colleen,
I'm so sorry to hear about your mother. That is devastating news.
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: Mar 2009 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2009 Posts: 48 | It was extremely devasating. The one thing that I have noticed throughout this process is that the doctors may have given up hope in January but my Mom never did. I admire her for her strength and have told her that. I appreciate all of your kind words. It really helps to know that people are thinking of my family and I. Take care everyone!
26
Mom 48 diagnosed Sep 08 Stage IV SCC
full glossectomy, neck dissection traech and peg Nov 08
35 radiation treatments and 3 chemo
Mar 09 mets to lungs
Started Erbitux 3/09/09
06/26/09 mets to rib
Stopped Erbitux 6/26/09
Start erbitux/taxol 7/06/09
Started Hospice 7/24/09
Passed away 8/09/09
| | | | | Joined: Feb 2009 Posts: 88 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2009 Posts: 88 | Colleen,
So sorry to hear the news about your mother. Now is the time to spend as much time as you can with her and just love her, sit with her and hold her hand. She knows you're there . My prayers and thoughts are with you, your mom and family. God bless.
Bonnie
CG to daughter Brandy age 31 initial dx 10/06
SCC T4N0M0 with bone invasion upper maxillary
Surgery 10/06
CT's clear for 2 years
2nd recurrence - Laser surgery 1/09 dx
Tumor board - No surgery to invasive for QOL
35 IMRT 3/30/09 Completed 5/15/09
8 tx Erbitux 3/24/09 Completed 5/6/09
| | | | | Joined: Jan 2009 Posts: 216 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jan 2009 Posts: 216 | Colleen - I'm thinking of you, your mom and your family, and keeping you all in my prayers. ((((hugs))))
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: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Colleen,
I'm so sorry for you and your whole family. Don't waste a minute! Will keep you in my prayers.
Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Colleen, I am so sorry for what you are going through. Will keep you and your family in my prayers!
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: Mar 2009 Posts: 48 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2009 Posts: 48 | I am truly grateful for all of your thoughts and prayers! They seem to be helping. My Mom is in a wonderful facility with a wonderful/caring staff and great/compassionate doctors. She is comfortable and seems to be at ease about her current situation. She is awake and we have been able to talk and say all of things that need to be said. I really never imagined having to say these things, but I know that it will comfort me when I think of her. Thank you all again, keep sending those prayers so that my Mom can go peacefully!!!
26
Mom 48 diagnosed Sep 08 Stage IV SCC
full glossectomy, neck dissection traech and peg Nov 08
35 radiation treatments and 3 chemo
Mar 09 mets to lungs
Started Erbitux 3/09/09
06/26/09 mets to rib
Stopped Erbitux 6/26/09
Start erbitux/taxol 7/06/09
Started Hospice 7/24/09
Passed away 8/09/09
| | | | | 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 | If your Mom is alert enough and you find the hours are dragging a bit - remember the photo albums are a great way to relive happy times. People DO take pictures at happy times and if she has the energy she might be able to share some additional stories with you about the events in the pictures.
I know I hope that this is something I can do with my kids. Once I get the albums utd that is!
Time spent holding her hand and chatting is invaluable. I am so happy you are there for her. Sounds to me that you mom is at Peace. That is a glorious state of being. Enjoy it with her.
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: Sep 2006 Posts: 49 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2006 Posts: 49 | Colleen,
I trust you are finding out what angels Hospice nurses are. They were here with us during the suffering of our daughter's final weeks and each one of them was such a blessing. I'm so sorry that you are going through this - I know how horrible it is. I echo the recommendations of those above to just spend as much time close to your mom as you can. Hold her and tell her how much you love her == and how much you will miss her. She can hear you!
God bless you and your family.
Bonnie
----------------------------
Caregiver daughter Teri, age 43, mother of three, non-smoker, non-drinker, aerobics instructor, SCC 4/06 SCC lateral tongue, partial glossectomy, mod rad neck dissection, 35 IMRT; metastatic return 4/08 to lung, bone, kidney. 10 additional radiation to lung, 3 Docetaxel + Carbo, lost her battle on 9/29
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Always thinking of you Colleen.....
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: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Colleen,
I know only too well what you meant by "hoping for a miraculous recovery" because I am hoping that miraculously, this will never come back to haunt my mom again. I'm so sorry to hear about your mom and want you to know that I will be keeping you and your family in my prayers. A very old preacher once told me that you die when God is ready for you, not a minute before nor a minute after. Like some of the others have said, please use this time to spend with your mother and let the love between you just flow.
Nancy T.
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | NancyT,, that is one thing I believe in for sure, or I would have been dead a long time ago and never experienced OC. I will take the PC and whatever else gets thrown at me in the next few weeks and keep right on living and smiling.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | OOPS,, When God wants me, I will go without any choice , but not before.
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: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Colleen,
I am so happy that your mom is awake and you are able to share this time with her. Say whatever is in your heart, simply hold hands, crawl in next to her if you can...God bless you all.
I, like everyone else here,are with you in spirit.
Much love,
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Colleen, so sorry to hear about your mom after all she's been through and you too. This disease stinks!
Take care of yourself.
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2008 Posts: 238 | Hey, Jim. My sentiments exactly!!!
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Colleen, thoughts & love being sent xxx
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
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