As some of you know hubby has been having sore throat, hoarseness and then difficulty swallowing started. I wondered if it was a little early, but since it is so variable and since several started as he did I wasn't unduly concerned. I think I have also mentioned that hubby does not ask questions or communicate with the doc(s), which is why I try to go every time. I missed the last two RO appointments due to issues with my son, so today I went back. I had some normal prognostic, treatment type questions and then I finished and said ok, now what do you recommend to help with the side effects and he's like (in a surprised voice) - what side effects? Shouldn't have any yet... I'm like well I thought he was pretty on track based on my support group. He said are they getting radiation on their throat and I said I would assume yes based on the type cancers they have.. He said Dan is not getting the throat - he is getting parotid area down the neck, but not directly on the throat. It may get some "off-fall" as we progress, but not this soon. Dan's symptoms are hoarseness (2 weeks +), sore throat (3 weeks +), difficulty swallowing (few days). He took antibiotics for a week (last week) - no change. And choking mucous. RO was concerned and wants us to see our ENT for a scope ASAP - he stepped into the hall and called him while we were there. We have an appointment Thursday morning.

On the physical exam he can't see anything in Dan's throat, just a little redness. He gave us Diflucan just in case.

Since they have told us this is a very aggressive form of cancer and the fact that it was in multiple lymph nodes is not good - I am course a little panicked by this.

Michelle-
I had radiation to the parotid gland area and the neck on that side but I had all the same side effects as others- sore throat and mouth, mucous, etc. I was on a liquid diet by week 3.
Maybe this doc has not seen a lot of salivary cases and he's surprised. Also your husband is having chemo and that can cause mouth sores which make it hard to swallow and eat.
Please try not to worry too much, Thursday is almost here. Hang in there!
Melissa

Michelle- My husband had radiation to one side of his neck and he also got the symptoms you are mentioning. It also seems like they had them on the same timeline. Try not to panic. These side effects are so individual. The doctors make me angry when they say that they are not caused by the treatment. My husband is exhausted from the treatment he's getting and his oncologist told him it was not a side effect of the Erbitux yet when I went on the website, it was listed as a common side effect. I go with my husband to his appointments because he doesn't listen very well either. Hang in there, Sue

Thanks ladies for the quick responses. As you guys know this whole "thing" is just so frustrating. Isn't it funny that I'm praying this is radiation side effects - what a bizarre thing to pray for, but in this scenario I would much rather him have a few months of hell then have more cancer!!

Sue you are so right about the docs - Dan has a BP problem and I read that Salagen causes high BP, I brought that up today and he's like no - not after the first week and if he's having BP issues still then he should go back to PCP.

Thankfully this is the RO and not our primary MO whom I love! And I really really like our ENT so at least we'll be in good hands on Thursday.

Oh he also tells me today definately Adenocarcinoma and not Acinic Cell and 4 lymph nodes - not three. Can you say frustrated!!!!

Michelle,

I'm surprised that your RO didn't scope him right there. I can't remember one time out of the 30 or so times I've seen my RO that he didn't scope me and as far as I'm concerned he described more and seemed to know more scoping me than my ENT, AKA Dr Death, ever did.

I asked him and he said he could do it, but he thought Dr. Bowman was better at it???... That's funny you say your ENT, AKA Dr. Death - that's my feelings on our RO :-)

Michelle, David,

While I know that our RO was very good at the radition treatment stuff, I never felt like he was skilled at the H&N diagnostics. Remember David, you are seeing an RO who only does H&N treatments and Trotti is very thorough with his exams and scopes.
That is why we go back to a CCC (Moffitt, where David goes) for all our checkups but took treatment locally with blessings from Trotti and team. That is the beauty of a CCC...all the docs coordinate.

More pressure on you Michelle, to keep the lines of communication open with all these different specialist and like you, we had a wonderful MO whom I looked to for most of Bill's problems (I could email him anytime and usually had an answer within 30 minutes.)

Get used to frustration Michelle..it goes with the territory seemingly and especially for those of us who are detailed oriented and want logic to reign.

Hope Dan's problems are explainable...I really do think it is side effects of his treatments...sure sounds like it.

Hugs, Deb

Michelle,
I have been on BP medicine since I was 24 and took Salagen during treatment and for two years after. It had no effect on MY BP whatsoever. Maybe the stress of his treatment is doing it. It is no fun being strapped to a table with a mask on your face every day. Do you know what his BP used to be BEFORE he got this diagnosis? If he is like my husband, he probably hasn't seen a doctor in years. Here's hoping this is radiation side effects.

Take care,
Eileen

I have to agree with Deb,
although my RO looked as the damage unfolded she never scooped.... Neither did the MO. In contrast the H&N surgeon did and kept them informed. I guess the situation is different if you have a H&N specializing RO.....

M

At Moffitt the only doctor that didn't scope me was my MO. It didn't matter if I saw 3 docs in the same morning, they all would weight me; take my temp; take my BP and scope me. The Chief of H&N Surgery, who was my "primary" doc at Moffitt (he did an exploratory to find my primary, BOT), would always hook his scope up to a monitor and explain what we were looking at which was very cool.

That is cool David.

We've got good doctors here (all from UAB CCC) and our oncology nurses are trained there as well. And they do communicate alot - always stepping out to call the other while we wait and usually start the conversation with I talked to ENT or RO or Oral Surgeon, etc. and I always take copies of the notes from each visit to give to the other guy and each time they have already had them. They also talk back to their colleagues at UAB regulaarly and my MO is the Research Director here, not that that has helped with this crazy rare cancer, but he knows what's out there and they guys that are doing it.

I just have to have faith that we made the right decision being treated here. I don't want to beat myself up about it and Dan really really really wanted to stay here in town so here we are. And honestly when we scheduled the initial surgery (parotidectomy and ND) we thought it was benign so I really wasn't thinking ahead to all this kind of stuff.

We'll get to the "bottom" of this new issue tomorrow morning and move on to the next step from there. I'm worried, but I'm human - so what can I say :-).

Oops - forgot to reply to the rest of yall. My brain is out there today - my little boy is wide open this afternoon and keeps distracting me.

Thanks for the hugs Deb - I am praying for the side effects!!

Eileen - your right had not been to doc much at all. His normal since I have been paying attention is 145/99 and would go up a little from there. His father has heart issues - so PCP put him on BP meds, but last Friday it was 170/100. He said no pain, no stress, etc. but obviously there was something or it wouldn't have been that high. I forgot to have them check it yesterday and asked him to have them check it today when he went for radiation (I'm sure he didn't), but we'll be at the doc tomorrow and the Cancer Center on Friday so I'll see what it says then. I also heard that Cisplatin can lower your BP so I'm a little apprehensive for the PCP to increase his dose.

Yeah Markus - my RO is not a H&N guy. There is not a specialist in Montgomery.

Thanks guys - I really appreciate all of your support!

Michelle: Go by your pharmacy and pick up a digital bp cuff AND a new digital (ear is preferable)thermometer, if you haven't already....that way you can take 'home' readings and note any obvious changes...best of luck to you two tomorrow.....

Lois

Great news, Dan is fine regarding the throat issues. ENT scoped it this morning and found no masses, no cysts, no sores, no thrush, etc. It's just red and irritated. He believes it is reflux - the LERD kind and that the radiation has irritated it so now it is bothersome. It can actually cause every symptom Dan is having - who knew?!?! He prescribed Nexium. Evidently you can have reflux and not even know it (silent type) and then when something triggers or irritates it - here you are. We are very very happy, because in the scheme of things this is NOTHING compared to what we were afraid of.

Lois - great idea! I'll do that hopefully this afternoon.

Thanks for all your positive thoughts.

Wow, great news. Hope things continue in a more positive light.

Michelle- Thank god. Good news for once!

Michelle-
Phew! I got reflux shortly after finishing radiation, I'm on medication for it and it hasn't bothered me since. Funny how when you're dealing with something like cancer, you are glad to hear you have reflux!
Melissa