#75480 06-11-2008 07:03 AM | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | hi everyone, i just wanted to let u know about my current, not very promising situation. i tried a chemo scheme, that is done with a catheter and the platinum drug is being infused through both carotids arteries, but in significant larger doses than intravenously. said it was very promising, but nothing done with me. i should have repeated a second time, but took me a long time to recover. now i am standing helpless with both sides of my neck swollen & stiff sth that gives me such a hard time to breath, even if i leave the trach open, a lot of pain from the jaw up to the ear and with no idea of what to do. i really don't have the strength to be reradiated and i think that my physical condition could not stand it. i can't sleep at all at night because i can't turn from neither side, and because all this swollen area is in a lot of pain. i have never before such a serious & stiff swelling. it is like sn trying to choke u. my Dr. seems that has accepted that there is no turning back and just wait for the inevitable. what can i do?
sophia
| | | | Joined: Oct 2007 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2007 Posts: 104 | Sophia I am sorry to hear of all you are going through. Is there the option of a second opionion with another Dr. If not your present Dr. should be connecting you with palliative care team to control your pain and other distress. Medication is available to do this and also possibly palliative radiation or steriods to reduce the swelling. Keep on that Dr. to get you the help you so desperately need.
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: 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 | I sure wish you could get another qualified opinion. I'm pulling for you so please don't give up hope.
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Sophia, Good for you for at least trying the chemo. I'm sorry it hit you so hard. I may be misunderstanding what you're saying about your situation, but you say it seems your doctor has accepted there's no turning back--does that mean he has clearly told you there is nothing else he can do that will help you? I think you at least deserve to know whether he thinks there is nothing more he can do that will be of help instead of judging that it "seems he has accepted" it.
I mean, maybe that is something that doctors don't feel obligated to do in every country, and it used to be true here that often doctors would not tell patients when they thought theere were no more medical treatments that would work because they were uncomfroatble talking about death.
And you also should be able to get some kind of help if you are in pain no matter what your doctor thinks about whether there are more treatments that would help. Are there hospices in Greece? If so, is there a hospice near you? They are often better at making sure patients are not in pain than doctors.
You have fought this disease so hard, I wish there was soemthing else you could do, but mayeb it's time to fight just to be treated respectfully and as though pain control is very important right now.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | Nelie, my Dr. told me that there is no surgery option any more, and that if i could the only thing i could try is chemo. But i am not strong enough to deal with side-effects right now. he is just giving me some pain-killers that work only for a couple of hours and then again the pain comes back as strong as before. the trouble is that i can only take these pills twice per day. i also take cortison pills for a period, helping a litlle as the swelling don't go away completely, and then when i stop back to being swollen increddibly. no hospices available for cancer patients at Greece, only two public hospitals that treat cancer patients and you have to wait so long to be accepted because of the large amount of patients. and the whole system is so bad that you really feel awful being there. i don't even want to think about this!
sophia
| | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Have you asked your doctor what the best result from the chemo would be? Is it just something that will add a few weeks or months anyway? I don't blame you for not wanting to think about the whole thing.
It seems to me there must be SOME way to get better control of your pain. I am SO so sorry you are going through this Sophia. I wish there was something else I could do for you. You are in my thoughts and I hope you keep posting here when you can.
Nelie
Last edited by Nelie; 06-12-2008 03:53 AM.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | he told me to do the chemo for maintance, don't know if this is the right word, and don't know exactly what that means. i just wanted to ask you if you have heard of similar cases and what is best to do. what would you reccomend? till now the chemo hasn't shown any results, you think it could do it now? do you have any input if glands are chemo sensitive and in which drugs? till now i have used Erbitux, carboplatin, taxotere with no result. i know that my thoughts are in a mess, but what is your opinion?
sophia
| | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Sophia, I wish I could give you some good advice but I honestly don't know what I'd do in your situation.
I DO know if I were in your shoes I would want to know very specific info. about how much, on average, that specific chemo regimen has been shown to extend the life of people in my situation. 1 month? 6 months? A year? Two or three years? Then I would try to think hard about the trade off--X days of feeling siock from the chemo for a probably X days more life and see if that seemed worth it to me.
I really feel for you and how hard this decision is for you after all your battles. Do you have family around you to support you through this time?
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Sophia, I have been thinking of you and am so sorry to learn of your suffering and your uncertainty in regards to further treatment. I echo Nelie's questions and hope that you get more satisfactory answers from your doctors and that they can give you better pain relief. My prayers for you from across the seas, Malka
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 | thank u very much for your support & good advice. my Dr's don't give satisfactory answers even if i ask them to. i don't know if that is cause they are not sure or just cause they don't want to upset me. the next pain killer that i can use are the patches. but i don;t think that even that could do much cause my main problem is all this discomfort that i feel from the jaw area down the neck, it is so stiff and so swollen that i can't breath. for that i am searching for a solution that i can;t find, how could i do or take to make this swelling less, i know that i can;t get rid of it. but have u heard of anything that could ease this situation? Nelie i have a family, taht are very close to me and really help me, but these last few days i can't even talk to them because i feel so uncomfortable & my pain is so strong. all kind of mixed up emotions, and also anger because i think the Drs could have done a better job and could have helped me more through this hard time! thank u all,ur advice helped me many times and i learned things from u that no Dr. have ever told me! if i knew all of u some years before, I am sure that things would have been much better for me now! thank u all & god always be blessing u.
sophia
| | | | 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
| | | | 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 there is no need for thanks,it was the least i could try to do to help,i was just concerned you hadn't seen the message.As for the swelling,i have to just say that robin's whole face and lips swelled up to huge proportions,and his treatment was 8 mg perednisolone in the morning.this reduced the swelling after 24 hours,it was unbelievable.The minute they tried to reduce the dose the swelling started to come back.Why cant you take it for more than 5 days Sophia?.Rob was on it all the time.
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 | thanks for telling me that, today i have to see my Dr. and i am going to ask him. if this an option for me it would be great, because this swelling is so unbearable!
sophia
| | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2007 Posts: 681 | Sophia, I am praying that the information from Liz will help you. Malka
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: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | You're in my thoughts and prayers too, Sophia. I am praying you at least get some relief from the pain and discomfort.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | Joined: Jan 2008 Posts: 41 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2008 Posts: 41 | you are all so caring & sweet. thank u very much. my Dr. doesn;t want me to take cortisone each day. i had some blood tests done today that showed very high levels of transaminases maybe cause of these pain killers that i get. tomorrow i would try to do another chemo hoping to reduce the size of the tumor. i'll let you know how it went. all your prayers, all your support, your advice are so important and very much appreciated. thank you all, and i hope the best for all of you.
sophia
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