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

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

My RO was very stingy with pain meds as well. I had much better luck speaking with the MO for those. The MO is typically the PCP when going through treatment.

I was given a figure of less than 5% for unknown primaries. No, they don't know what area to radiate, although in my case they did suspect that the site might have been the back of my throat, so they radiated everything from the bottom of my earlobes to my armpits. This was XRT not IMRT.

Take care,
Eileen

Anne, my cancer had metastasized to two of my left neck lymph nodes. They irradiated everything from my jawline to my clavicle on both sides to be sure. Guess they figured that would take care of the primary (?) as well as any rogue cells the scans and triple endoscopy didn't reveal. In any event during my neck dissection my surgeon found no growth beyond the nodes - no extra-capsular spread I believe is the term - which in turn led my MO to conclude that radiation alone would do the trick without chemo. For which, needless to say, I was grateful.

As far as the PEG/no-PEG issue, my RO suggested to me before we began that if I applied myself she thought I could get through it without one. As I'd just had a major complication during the second surgery (the dissection) in which my neck began to swell and bleed in Recovery, necessitating a quick return to the OR for an emergency tracheotomy, and which my surgeon surmised might have been caused by a bad reaction to anesthesia, I was understandably a bit reluctant to go under again right away for the PEG procedure.

Once I got deep into treatment and discovered how nearly impossible it was to swallow even liquid nutrition I kind of wished I'd gone with the PEG and damn the torpedoes. But of course it was too late by then. I would advise anyone entering a course of RT to this part of the body to seriously consider the PEG!

And Eileen.... interesting that you heard 5%. It's always possible that my brain was asleep the day my doc gave me the higher figure.

D Who Is Not The First D

David,
I was given that 5% number in 1997. It may have increased since then, but I doubt it is as high as you heard. I was told it was rare. I also had no chemo and no peg.

Take care,
Eileen

The figures for an unknown HEAD AND NECK primaries are very very low but for cancer in general they are quite high.

The radiation plan is developed by mapping the nodes with SCC and adjacent nodes in those node chains back to all probable primary drainage sites. Then "fields" were established for the probable primary sites and those fields received Radiation along with the nodes.

MD Anderson CCC has led in the research and development of the treatment protocol for unknown OC primaries and recently found HPV as a major cause, so NCCN guidelines now require testing of the lymph nodes for HPV.

Don, read your post with interest. There seem to be similarities between our cases, with a few key differences (I'd had my tonsils out as a child, also had no PEG). I however had standard IMRT to your Tomo... which according to what I've read is state of the art.

How did it affect your swallowing, etc.? I've still got a lot of dry mouth 10 months after the end of RT, although it certainly has gotten better (I'm guessing somewhere in the 20-25% range, near as I can estimate). But I'd heard that Tomotherapy was much better at sparing the parotids. I also got a bit thyroid zapped (my TSH was measured most recently at 6.35) so I'm taking Synthroid now. Did your RT affect yours?

Should be very interesting to see how this disease is treated in 10 years!

Thanks,
David II

David II,
I was told it takes a year or so for the salivary glands to fully heal. It does seem that point&shoot IMRT is initially harder on them.

For me dry mouth is not an issue and it was never real severe. In most cases Tomo's fan-beam arc delivery will spare all the salivary glands (with proper planning of course). I had a paper on how they do this, but I can't find it, so as best I recall the trick is to keep 75% of any Salivary gland under 20gy.

My TSH has not significantly changed, but I do have some throat constriction (noticeable when I eat rice or peanut butter). Otherwise I don't seem to have any significant side-effects.

The tonsillectomy was the worse. They really took a lot of real-estate. Thankfully I was hospitalized.

Don, glad to hear you're doing so well, side effects wise. Or non-side effects as it seems to be. I had heard about the Tomotherapy but went with what was available here. Hindsight and all...

Like you I have the throat constriction/esophogeal narrowing. Last summer there were also a couple of occasions where a web grew across it and blocked it quite extensively. I still go in for dilation every few months, which doesn't seem all that uncommon from what I've read here.

Good luck to you and continued good health!

D2