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.