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Joined: Apr 2010
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Netsky Offline OP
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I am caregiver along with my sister and aunt to my wonderful Dad. Posted 2 weeks ago under New Here. With heavy heart I have to report the SCC is back mets to skull and bilateral lymph nodes of neck and below sternum. Surgeon suggested pallative care and hospice . oncologists started tx of rad and chemo. My dad has deteriorated so rapidly. PAIN SPEECH SWALLOWING It is devastating to him and all of us and horrible nerve pain as it attacks the cranial nerves and larger tumor is surrounding the carotid artery. Anyone with experience with this out there? Does the rad and chemo reduce the pain? We wanted him to accept and move in the direction of hospice for comfort and peace but he has fight still left. Despite all the pain. Also, this is hard to ask but what can we expect at the end? I understand the nature of that question i can be reached by private e-mail let me know. ....just want him to go to heaven peacefully . Want to be prepared. THX in advance-Netsky

Last edited by Netsky; 04-22-2010 07:49 PM.

Caregiver to Dad. 8/09 Stg 3 SCC of buccal mucosa.
T2N1M0 extracap spread
Surgery/RX complete 12/09
Reoccurrence 4/10 Stage 4 Mets to bilateral nodes & base of skull
40 rx & 2 rounds cisplatin
Hospice 7/29/10 .....died holding my hand 8/4/10
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I am so very sorry to hear of what your Dad is going through. Hopefully someone here has some experience in dealing with that level of pain. I will keep you all in my prayers.


Donna,63, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV.New primary R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 11 yrs from 1st dx, 7 yrs since 2nd dx. Surviving isn't easy,but grateful for EVERY day.Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL!
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It is irresponsible for his doctors to allow him to be in such pain. This is completely unnecessary and unacceptable. You need to get them on the phone and call them on the carpet. You have to be the advocate here and get what he needs to bring this under control . The ability to do so exists.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Where are they radiating?

I agree with Brian, get the pain meds that take him out of it.


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.
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Sending you a private message.


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
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Netsky Offline OP
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Thank you all for imput sand advice, He is on percosset and Xanex also decadron to reduce swelling. But this barely takes the edge off. He hates that it makes him doped up and by his own doing doesn't take what is actually allowed wants to be in control and he is losing control if that makes sense. They switched to LORTAB yesterday. David they radiating the large tumor that is wrapped around the carotid artery, the 3 nodes on the neck and below sternum. Said it is a shot to get him more comforatable. Meanwhile his voice is disappearing-I am worried that he won't be able to communicate esp with brain involved- and now speech I've had other family members die from cancer but never seen an end like this-F%^&$&* horrible. That's why i would like him to do hospice -we did it for my mom and she went peacefully surrounding by loved ones.


Caregiver to Dad. 8/09 Stg 3 SCC of buccal mucosa.
T2N1M0 extracap spread
Surgery/RX complete 12/09
Reoccurrence 4/10 Stage 4 Mets to bilateral nodes & base of skull
40 rx & 2 rounds cisplatin
Hospice 7/29/10 .....died holding my hand 8/4/10
No smoke/No smokeless tobacco
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Posts: 697
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There are patches for pain, too. Keep calling if your Dad does not get relief on Lortab. Sending you hugs and good thoughts. Keep posting. We wan't to know how you are doing, too.

Anita


Anita (66)
CG to husband, Clark, 76,
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
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I am sorry you are going through this. I will pray for you and your family.


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: Sep 2009
Posts: 148
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So sorry for your Dad & all the family. My aunt was put on constant morphine to be pain free. She only responded to music, you could tell she was hearing it. I hate to see your dad go through radiation, he is a real fighter. I just lost my Dad on 2/15/10. So all I can say is spend every possible moment with him. He will always know you are there & you will come to treasure these moments. Again, so sorry for what you all are going through.


BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"

*** Admin update --- Dianne has passed away on August 25, 2015 ***
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Posts: 595
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Sorry for your Dad, find a second Doctor and get him help with his pain!!! Semper-Fi Bob


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 !!!
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