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 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.

I sure wish you could get another qualified opinion. I'm pulling for you so please don't give up hope.

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

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!

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

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, 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

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

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.

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...

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

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

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

Sophia,
I hope that by now you have received more help from your doctors to ease your pain.

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,

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

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?

Did anyone see my message?I researched greece and posted three places that offer pain managemant.

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.

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.

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,
I am praying that the information from Liz will help you.
Malka

You're in my thoughts and prayers too, Sophia. I am praying you at least get some relief from the pain and discomfort.

Nelie

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.