Whenever I read comments here, and talk with others who are or have been receiving cancer treatments, I realize how lucky I am with the care I have received. Both my RO and my MO insisted I get a PEG, and they made it clear that if I needed pain medication I should have it! Everyone that I had to deal with during my treatment was kind and caring. This is a big shout-out to the wonderful people at the North Coast Cancer Center in Sandusky, Ohio! What an amazing group of folks!

Hi All,
Well, we had some success today with the clinic counsellor, who agreed that the comments made to us by this Dr. were unhelpful and unsupportive. I think she was rather shocked, although not entirely, as she knows the three throat ROs quite well.

She agreed that we don't need the worst case scenarios and threats every time we see this Dr. It's not about hand-holding, just a bit of encouragement. Also, there are clinic guidelines to be followed and this one Dr. does not make all the decisions about any patient's care.

She is working with the MO and the psychiatrist to find a way to minimize the effects of the dexamesathone and is going to run a bit of interference for us to find out if we can make a change to one Dr. that she thinks might be more suitable.

She also reassured us that Gordon's not having any more "trouble" with the treatment than other patients that she sees, and that many have the same side effects at this stage that he has now. She said he's doing fine. She also said there are many things to be tried before treatment would be discontinued, so at least we feel we won't be cut loose and Gordon left to die.

You really do have to be proactive these days and fight for your loved one (and yourself) when necessary. We both feel a bit better about the whole thing, although we know the next 4 weeks will be very tough. Maybe tonight, we'll both get some sleep.

Thanks for all your support,
Anne

Remember the squeaky wheel gets....

I think if you took a poll of everyone that has ever been on this site they would tell you that they also had to speak up during Tx. I also don't think it matter whether you are being treated by your local ENT or the best CCC.

Other than telling newbies to eat, drink and get to a CCC I think the next most popular advice we offer is to "tell or question your doctor" about this or that.

A piece of advice, never give up hope! My mom had a surgeon that was awful to talk to, he made us cry every time we were near him. She couldn't tolerate water, at all! I believe it has to do with the alkaline levels, try fiji if your hubby wants water. My mom drank pepsi and ate oreoes the entire time she was going for treatments-not suggesting to do this, just stating a fact. Her weight went down, she tried to lie by putting little stones in the pockets of her clothing--the medications she was taking made her a little goofy at times. I should go back and read what I wrote, I haven't done that in years. Her situation with the surgeon was so out of hand that we spoke with our social worker, she helped immensely. Everyone is different, even our doctors perspectives. My mom uses lidocaine as needed, has since RT started and she began having issues. She had an ng tube temporarily right after surgery, all along I was told a peg would benefit her by everyone here, but her oncologists seem to think she was ok. She was ok, she could have been stronger by getting proper nutrients. If you want to read about an arrogant doctor, read my first few posts. I was overwhelmed.

Now the Donna that posted this is the fighting Donna I have come to know and respect.

Anne, I have one full and one 3/4 full bottle of viscous lidocaine left over from my treatment. If you have a prescription for it I'd be happy to send it to you, just send me a private message.

And I heartily second Markus's comment about painkillers. If your husband needs them he should get them. Period, end of story.

David 2

(note to Brian: if you need to delete this post or need me to amend it with anything further, please let me know)

Hi All,
Thanks to the Counsellor, we are getting a new RO. Gordon is 3 1/2 weeks in and has yet to lose any weight.
Thanks to David 2 for the offer of the viscous lidocaine - we do have some on hand. David 2, where was your primary site? Gordon's is HPV 16 related.
Biggest difficulty is getting Gordon to use new medication. His mouth pain has just now increased after the cisplatin last week, and he's dragging his heels about using the tylenol 3 (worried about constipation, has a bad internal hemorrhoid etc.). I'm trying to convince him that pain control is our priority and the T3 will likely take care of any pain from the other end (oh, the irony) and we can deal with the constipation anyway. OCPC types are very hard to convince of anything!
Anne

If Gordon wants to talk (or you for that matter) let me know and I'll give you my contact numbers. See my Signature Line

Anne, in my case they never did find the primary. Although this disconcerted me when I was first made aware of it, both my RO and MO told me that not only was this not uncommon in head and neck SCC (I seem to recall a figure of some 30%, perhaps even more), but that - and this seemed paradoxical - I could expect to do better for it. I'm sure the more learned types here can enlighten you further about this apparent contradiction. In any event it seems clear (and forgive me if I'm repeating something said in earlier posts) that HPV-caused SCCs respond better to radiation therapy than those caused by the more historically conventional smoking (especially) and drinking etiology.

Courage to you both (and painkillers to him!)
D2

David2,
This does seem strange - how could they radiate the right area without knowing where the primary site was? Obviously you have done well, which is wonderful. Yes, I did know that HPV responds better to radiation, as our surgeon said, if you have to have neck cancer, this is the type to have. How did you manage to avoid the PEG?
Anne