| Joined: May 2008 Posts: 73 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: May 2008 Posts: 73 | Hi Sophia,
ITS NEVER TOO LATE ! Just hang in there and please DONOT give up , even though your docs might say wat not but Your mind is the biggest doctor and it has been proved that ur brain can cure biggest of the deseases. Just be positive !
I'll pray for You...
- Avinash My Father, Age 59, T2N1M0, Stage 3, smoker left 5 years back, casual drinker , NACT with TAXOL +5FU+Cisplatin x 2, and 70 Gy in 35# from 03/10/08 to 04/26/08, no surgery, After Chemo cycles tumor reduced 60%, Cancer Free now !
| | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2007 Posts: 104 | Sophia, the patches will offer some relief, try them please. You need some relief from the pain. Go in with a list of questions and hand it to the Nurse, ask her to sit with you and have her write or the Dr. write the answers on the paper next to the questions. This way they HAvE to give you an answer to each, and you can take it with you to re-read. Course, sometimes we don't really want the answers in some situations. But, I know when I worked as a Nurse, this would 'make' the Dr. respond to each question and not avoid it. But, get relief from your pain as quickly as you can, it will help you be able to sort things out if you can get relief. Linda
Jordan's Mom. Linda She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Sophia-
I agree with Bailey4 that you should try the patches and then take something else (liquid oxycodone or something similar that you can put in your peg tube if you have one or can take by mouth more easily and use this for breakthrough pain). I can't really answer your question about chemo but a close friend of mine has pancreatic cancer and surgery was not an option. He has used chemo to try to slow the growth of his tumor and has done quite well. He has had to be very aggressive about pain management and about managing side effects from chemo (e.g., nausea, fatigue) and he relies on his partner to be his advocate. He has sought second opinions about other chemo protocols (esp. if his current one stops being as effective which apparently happens often or sometimes the initial protocol is not effective). I imagine you are so tired and overwhelmed so that is where you really could use a strong and persistent family member or friend to understand all of your concerns and wishes from you and then translate them along with you for your doctors.
My thoughts are with you as you have been through so much- Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | sophie
as part of my job at the hospice i was researching directories of information.
i have found the following three addresses.I dont know if they will be of any help,but here they are. HHELLENIC ASSOCIATION FOR PAIN CONTROL & PALLIATIVE CARE ANAVISOU 8 190 -10 KALIVIA THORIKOUATIKI 0030 299 48439
HELLENIC SOCIETY OF PALLIATIVE SYMPTOMATIC CARE. LEFKON OREON GERAKAS
0030 6936718181
UNIVERSITY OF ATHENS PAIN RELIEF & PALLLIATIVE CARE
27 KORINTHIAS AVENUE ATHENS 11526
30 210 7707669
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Sophia, I hope that by now you have received more help from your doctors to ease your pain.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013. Support OCF
| | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | Dear Malka, I feel desperate. my pain is stronger, my strengths had all gone away and the swelling are up to the nose. i can't talk anymore and it is so hard to deal with all this. my oncologist told me to try a chemo, i will but i don;t know how i would be after that. nothing seems that can take this swelling go away. this road has no return, it's a dead-end.
sophia
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Sophia,
I am so sorry...you need better pain management. Is there anyone you can call to help you fight for this?? I know you feel there is no hope but there has to be someone that can be an advocate for you and at least get something to alleviate your pain.
Sending thoughts and strength you way,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2007 Posts: 104 | There has to be someone to help you. Let's put our thinking caps on. Again, try talking to the Nurse at Dr.'s office?
Jordan's Mom. Linda She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | Did anyone see my message?I researched greece and posted three places that offer pain managemant.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | yes, Cookey i did see your msg and pls forgive me that i forgot to thank you. i will have my family ask about these. today i am going to visit my Dr. because most of the area from the nose and down is swollen and under my eyes there are swelling like sth has bitten me. i asked my Dr. to prescribe me an oxycodene pain killer to ease my pain as you advised me. he told me that things, as you can all understand are very difficult and uncontrolled. he doesn;t think that the chemo has a lot to offer, but perhaps is the only thing that could help a little. yes i know that if this torture lasts another couple of days i must get into hospital. i just feel that nothing can be done any more, i started cortison again but can;t take more than 5 days. everything shows that i lost this battle, i don;t have any other weapons left to fight any more. i just wish this swelling to go away & feel released even for just a little. i am afraid that if i go to the hospital i will never return home and that;s sth i don;t want to happen.
sophia
| | |
Forums23 Topics18,199 Posts197,006 Members13,186 | Most Online614 Jul 29th, 2024 | | | |