Hi,
After another visit with our RO today, both my husband and I feel upset and
somewhat hopeless.

Two weeks ago this Dr. told Gordon that if his weight went down too
far, treatment might have to be discontinued. We thought at the time
that the Dr. was trying to scare him into eating, but it turns out that Gordon had a reaction to the dexamesathone and went manic for a day, then crashed
for a couple of days, during which time he had an aversion to food, so the "scare tactics" weren't really necessary.

Today when we went in, he said he'd never seen anyone have the
difficulty with treatment this early as Gordon is having, and started
to go into the whole "we'll have to discontinue treatment if you
can't take it" routine again. I pointed out that he had already said this to us once before. He then said sometimes the chemo has to be discontinued.

I mentioned that Gordon had a reaction to the dex. and all this Dr.
would say is that sometimes it intensifies what's already there in the personality, and that sometimes elderly patients have a psychotic episode
but not someone in our age group (late 50's).

The Dr. said that usually people don't start Tylenol 3 with codeine
until week 3 and I pointed out that we *are* in week 3. And Gordon
is managing with extra-strength Tylenol at the moment.

The Dr. also said he doesn't like to use a feeding tube because patients
get dependant on them and then can never eat again!

Gordon has now had 13 radiation treatments and 1 chemo. His tongue
is sore and he has a couple of canker sores on the tip of his tongue.
He also has a sore spot at the back of his throat and the inside of
his cheeks are sore. He finds drinking water first thing in the morning
difficult. Is this unusual for someone part way into week 3? Is he
really that unusual for this week of treatment?

We are not getting any encouragement or support from this guy.
You'd think his approach would be more along the lines of -
OK, we'll try this and see how you do, and then if we need
to, we'll try this...you get the idea? But no, he jumps right
into the worst case scenario - treatment could be discontinued
and then supposedly you'll die.

Other staff, such as the nutritionist, nurses and counsellor are
more encouraging than this, and say it's going to be tough
but we'll get through it.

I don't know what to think and wonder if what the Dr. is
seeing is Gordon's psychological difficulties with the treatment,
rather than where is is physiologically right now.

It's not great to come home feeling like this, when the whole
treatment is such an enormous challenge in every way to
begin with!

Thanks for listening...Anne

Anne

First of all, I am very sorry that you and your husband are dealing with this disease. Secondly, the Doctor sounds like a jerk.

I started to get all the horrid side effects from radiotherapy after the 10th treatment. Everybody is different.

Having radiotherapy following surgery can also cause additional problems with swallowing and ulcers in the mouth and burns on the skin. It can vary dramatically.

I would speak with another Doctor at the hospital and hopefully you will then get the assistance and support that you both deserve.

Karen

This guys attitude about the PEG is just wrong.... along with his attitude in general. There is a somebody above this guy. I would have a conversation with whomever that is. You don't need a guy with an attitude that you have to deal with in addition to everything else on your plate. Every treatment facility has at least an ombudsman to help you deal with issues at the institution like this.

Minor point - when you post you do not ever have to hit the return key unless you wish to start a new paragraph.

Anne,
Keeping in mind that everyone is a bit different.

After rad 13 I noted that my taste bud were really going haywire and everything was tasting bad (including water). Although I was still eating by mouth, I was just eating soft food, drinking grape juice and ensure and contemplating switching to my PEG because of the awful taste.

I was having to see two nutritionist a week (Tues & Thurs)and they were watching my calories like a hawk (the calories were a lot easier to keep up with once I went on the PEG, but I held out as long as I could because I had "PEG phobia").

I had no significant pain but there were some small bumps in my mouth and I had mucous and a frog in my throat.

Shortly thereafter they found I had Thrush, but overall I was still fine.

I would suggest you ask for a second opinion about getting Gordon some kind of feeding tube or a PEG. It sounds like he is already having such a hard time and the real hard times haven't yet begun. Also discuss this with your nutritionist - they do have influence.

I am sure your RO realizes what is coming and is himself very worried.

Thank you all - we're so discouraged and disheartened. It's a tricky business to get another opinion in a clinic like this, but I will talk to the counsellor about it, as we're seeing her together tomorrow. It's interesting that Karen had bad side effects after week two and Don didn't. Thanks Karen, for pointing out that side effects can be worse after surgery, as no-one at the clinic has mentioned this yet, and Gordon just had surgery in January.

I would not allow this Dr. to discontinue treatment, if it comes to that, just because he doesn't "believe in" the PEG and would definitely demand another opinion about it under those circumstances, and maybe even before that.

Gordon is eating soft food (shepherd's pie with gravy, asparagus tonight) and I think the biggest problem is that he really can't taste anything. However, without the Tylenol, and the Magic Mouthwash I think it would be too painful to eat.

I will look into the ombudsman issue, as that might be the way to go if the situation continues and we can't get some help from the counsellor.

Sorry about the previous post. Will try to remember not to use the return key unless I want a new paragraph.
- Anne

Elianne
that RO is an ass. You should not have to put up with this "Dr. Mengele"
This is not about who can stand this ordeal without painkillers, there is no prize for that. As far as the peg is concerned, this is simply not true. Without starting another PEG war, there are many of who have benefited from having one and used it when they had to and then got rid of the thing again.

You might want to consider viscous lidocaine, it worked wonders for me for a time

M

where in Canada are you?

Hi Markus,
Oh, our RO doesn't "believe in" lidocaine either! No PEG, no lidocaine (although
he did prescribe some and we have it on hand) - just discontinue the treatment.

I understand that doctors are not really there to hold your hand and are trying to save your life, but it takes the same length of time to say something positive and encouraging as it does to say something negative and threatening. Why do they seem to find this hard to understand?

We will use the lidocaine and the T3/Codeine as soon as we have to. He did say to use the latter as soon as it was necessary (ie. when there is an increase in pain level).

We are in B.C., by the way. And yes, he's an ass.

Thanks for all your helpful comments, Anne

Week 3 I felt rotten! I had all of the effects Gordon was having but a Dr. who prescribed me pain meds and had me on a feeding tube so I could get the nourishment I needed to fight this.

I'm so sorry your Dr. isn't so understanding.Its important to eat something everyday if possible to keep the esophogus from tighteing up too much and to keep the ability to swallow in tact-- this is true but without an appetite and the nausea side effects its a monumental effort to get enough calories into the system every day.

Talk to the nurses. They might be emphathetic understanding and knowledgable on what to do.

While Markus and I have disagreed in the past about the proper attitude and psychological impact of PEGs, his post here is spot on. He doesn't brag about it, but he is a prominent Cancer specialist/researcher/professor and his advice here is very well grounded.
If you cannot ditch this RO, enlist another doctor's help to prescribe proper pain medication or even prescribe a PEG. I often asked each of my three doctors for the same thing if one of them said "no". Heck, even your family doctor can prescribe percocet and fentanyl patches.
Charm