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Need Feedback on Pain Issue Anyone? Thanks :)

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Hey all.

Tim here :)

My last rad was 1/20/12 and I had no surgery or platinum chemo. Only Erbitux.

I got off all pain meds about 2 months ago. Had feeding tube removed 1st week of June.

Got a very good PET/CT scan May 6, 2012 got a good scope / finger exam on June 9, 2012 got a good scope / finger exam on July 1, 2012 and I even was seen by my ENT only on July 19th who did no scope but did do a finger exam and of course looked in my ears, nose and throat.

On each visit since about mid-June I have expressed that I have had a pain in my throat, but all looks good, so they are aware of the pain complaint. The pain scale has moved up gradually from a 3-4 on the scale to now a 6-7 on the scale.

On that note, though I am very "pro-active" about being diligent and looking out for recurrence, I'm really not concerned that it is recurrence, but just could really use some pain relief.

The pain is located on the other side of my tongue (my primary tumor was on the left side) but not at the base more at the side where your teeth come togther. The sharpest pain (like an alcohol wipe on a cut) is from behind and above the Uvula(sp) that thing that hangs down in your throat (which mine hardly exists anymore). The pain is up to a 6-7 on the pain scale and is now wearing me down. The ibuprofen I take (4 / 200mg) at one time only lasts a little while and I have been taking up to 8-10 of those a day now for at least a week. I started gargling with Tyl PM this past week and that seems to do better, but none offers pain relief for very long.

I just came from my primary yesterday (at the request of the oncologist office) to see if I had thrush....primary said he does not believe it is thrush but he said it does look "a bit red and raw" in the area where I say the pain is.

My right nostril is also very sore, clumped up with gunk. Primary gave me a perscription for my nostril (ointment).

Primary said he believes it could be post-nasal drip which is just irritating the situation of post rads thus causing the pain.

It is dry and hot up here where I live, in the middle of the forest, 5,200 feet up and I have been working A LOT at the hotel which I manager and I am talking non-stop.

So here are my questions (sorry I give so much detail).

Why is the pain back so intense and persistant now? (after I was able to get off all pain meds)
Should I look for recurrence and push harder for more tests?
Is this one of those normal come and go post treatment side affects?
Has anyone had the pain go away only to return months after the pain orginally left?
Did I get off pain meds too soon?

He also prescribed me Narco 5/325 but I have not filled it yet because I don't like the way it makes me feel afterwards. It's wonderful med for pain, but then as it wears off I feel like I have a hangover. Certainly don't like that.

Thanks all. As always I appreciate the feedback, well wishes, prayers and shared experiences you all give on this forum. They have always been helpful.

Best,

Tim

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

but it is not likely cancer. red and raw looking, with pain on the scale you are describing is a significant finding. No offense intended to the PCP, but he is in over his head in your case. He has likely never seen a single patient like you before. Your ENT oncologist should examine you. He is the one with the expertise in this area. Not the rad onc or med onc doctor. It isnt that unusual to have problems like u r describing. I notice my throat is sore now. It really wasnt when I finished my rads five months ago,this is rather a development of the last month. In my case, I think it relates to hot and dry. And rads, of course.

be well

Pat

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

Always appreciate your feedback ...you just speak "plain vanilla" ...which is a good thing (and that's a Southern term which is a compliment) ...

I have a appt with the ENT on the 19th of this month ..I saw him on the 19th of July and described the pain (it has worsened) and he did do a exam...said if the pain persisted he would scope me next visit but his finger and "eyeball" exam he said looked good. Figures this would be the one visit he did not do a scope, but he said no need to if my oncologist did a scope July 1 (and this was my visit with him July 19th)..but I still prefer my ENT to do the scope.

I will also add I felt a little like cattle my last ENT visit ..I arrived 45 min. early and they called me back almost directly....when I mentioned I was early his nurse said "it's okay, I'm trying to load up the offices so I can get him (ENT) out early today" and of course when he came in I got to see him all of 6 minutes (I actually timed him)...and felt a little frustrated with that since I was telling him I was "hurting" and he said we will scope next time if it still hurts.

But I have learned in the medical field (not all the time) you some times just have to live with things like that.

I asked him one time that if he see's 50-70 patients a day (his scheduler slipped up and told me that when I asked one time) and he does surgery the first two hours most days, that leaves him about 6-8 minutes per patient every day.. is he sure he has enough time to care for me as I need....he looked a little odd at me (like I was maybe not suppose to ask that) but then he said he was sure he did. I said okay, I'm counting on you. :) Maybe time to bring that up again.

Thanks again Pat.

Tim

katenorwood
Posts: 1817
Joined: May 2012

Tim,
It's very normal for us to relate intense pain to recurrance. But it sounds like your oncs are on top of this. I agree that you should maybe get back in to your ENT. He/she would know more about these issues and scribe something to help ease the pain your dealing with. I commend you on wanting to drop off pain meds....but saying this ASK them if they think it was too soon. Also what can you do to bring a little moisture into your environment ? You sound like a hard worker, but remember you have to take care of you first. I hope these issues resolve asap for you Tim. Good luck and keep us posted please ! Katie

Sam999
Posts: 305
Joined: Mar 2012

I am 5 weeks post rads but have soreness in throat which gets worst if i talk too much or do not keep it moist by drinking water. Most likely your problem is related to hot weather and too much talking. But as others suggested best to get it checked by expert doc. Is it possible for you to take some time off and try no talking?

Sam

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

..I do work about 60 hours a week (by choice) and as a manager of the hotel(s) and the RV Park I talk an AWFUL lot ...if my posts are any indication on how much I talk....that's probably a bad thing. :) :) Ha! I absolutely love what I do and it is our busy season.

The pain has / had gotten so bad lately ....I was just wondering out loud if anybody else had it come and go so far out from tx. As I said I am 6 months out.

Wife certainly agrees with you all ... I talk too much. :)

I was thinking...we do not have A/C in the house and at night we sleep with the windows open, to start, then when I make my regular trip to the bathroom in the am I usually will close our bedroom windows. Wonder if that is causing some issues? Forgot about that.

Anyway...thanks for the feedback. Sam, thought about taking some time off....but it just never seesm to work out for me. May have to though.

Best,

Tim

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I do dislike the pain meds....Narco really works well...but the down after the med wears off makes me feel soooo blahh.

...as for moisture.....I did order that stoppers mouth spray...that came in a couple of days ago...seems to work pretty good if I spray a half dozen sprays every two hours ....maybe that will help. ;)

Tim

hwt's picture
hwt
Posts: 1881
Joined: Jun 2012

Probably a good sign that no one here seems to have had similar symptoms. Is is possible to have your ENT appt. moved up from the 19th by calling and telling them the pain you mentioned on last visit has worsened. Assume the hotel has air conditioning??? What about spending a night or two there to see if a/c helps out. Maybe delegate a bit of the talking for a few days if that seems to worsen the symptoms. Grasping at straws here. You are always so helpful to others, wish we had an answer for you.

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Hi Tim,

Let me be right up front with you, I have no ideas about what’s causing the throat pain, but I did like it when you called your Uvula that thing that looks like an upside down thumb, at least I thought you did. I am sorry if I put words in your mouth (especially now with everything going on in there). To be honest, I never thought you talk or write too much, I always figured you have things to say and you truly do have a nice way of writing your questions, comments, advice and your spirtualality (I think I made that word up).

I hope your throat quest leads to a good, quick answer. It seems you listed a boat load of doctor visits during the past 2 month, but I agree with Pat and you need to see the ENT (sounds like he needs the work).

Mentioning your ENT reminded me of the day (December 23, 2011) when my ENT confirmed I had cancer. I had the Jugular Vein dissection already and my wife and I were silently holding our breath for good results, as we patently waited in the exam room. There was shuffling out in the hall as the doctor came in and broke the news. (Now here’s the part I thought was funny) As we left the exam room , there were three students, doctor assistants, or someone, each with their ear pressed to the door waiting to hear my reaction and see my reaction (why else would they be there). Anyway, it was a nonevent, you and Pat just made me think of it and I want to be a man of many (good) words like you.

Feel better soon,

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

or maybe they wanted to see how the doc did on his delivery of such news...LOL :)...not all docs have the best delivery do they?

Thanks for the post ...I will get to the bottom of it soon...and yes, you noticed the number of visits did you? I keep them busy...some of that is my wife's fault though she would probably not admit it :)

Tim

PS And I did not put in the 3 ER visits (two infections for the stomach tube) and then a visit for an MRI of the head / brain...yep, I got one (a brain I mean).

Now I gotta figure out how to get the Oncologist to give me a scan of the lungs and not just the neck when I go in Monday for my 6 month CT of neck (neck only apparently) ... I keep telling him I want "eyes to the thighs" for a scan please..and he keeps shaking his head telling me no! Ahhh...I must be annoying.

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Tim,

I think they do “eyes to the thighs” don’t they. The reason I say that is they always seem to find a “warm spot’ right in my backdoor (if you know what I mean). So far, that warm spot has been nothing, thank goodness.

Best,

Matt

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

No, he said only the neck ....I don't think that is correct personally...I think why not eyes to thighs. However, I know we can't just go running amuck driving up healthcare costs ....but since I've already done that .. :) ....

I had a PET/CT 3 mo post tx. I have had a scope every month (and even more when I went in for "stuff" I did not know was normal)..I even had an MRI of the brain in May (severe headaches like I never had that would not go away) ...but of course no full body scan since the PET / CT.

I really don't know protocol ....but just prefer he do the eyes to thighs for good measure ...but maybe I am being to pro-active and unreasonable....I just don't know. It's obviously not an easy road to be on ..

Tim

boardwalkgirl
Posts: 263
Joined: Jun 2012

Have you tried using a cool mist humidifier? I sleep with one by my bed every night and I really think it helps. Might be worth a try

hwt's picture
hwt
Posts: 1881
Joined: Jun 2012

My CT w/contrast did include chest. In fact, I was a little surprised when they said I was scheduled for two, neck and chest. If it is a concern for you, tell your doctor that it is and ask for both. You are your own best advocate.

CivilMatt's picture
CivilMatt
Posts: 2900
Joined: May 2012

Tim,

If they don’t scan a person from top to bottom what good is the scan? Are they not looking under every rock for the possible reoccurrence of cancer? I know that health care costs control all my office visits and scans. When I dropped in on my ENT for a panicked visit at 2 weeks post, he agreed to see me next at 6 months (and he really is good, he said the onc would read the PET scan and relay information to him , if needed). I felt like I used up one visit covered by insurance. He did tell me, if anything came up to contact him. Then the chemo onc said (after reading the PET results) , that she did not think insurance would cover another PET at 6 months, but would cover a CT instead. My rad onc didn’t like any of what I told her and said she would look into it.

Maybe Pat could shed light on all these scans, there use and how often?

Like you more words, you bring it out of me.

Best,

Matt

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

you did get some great advice here and I too suggest you to be more persistent and you should require more detailed scan.
If I look at situation with my Dad he would never know all those details of his desease if I haven't searched entire internet and found this great forum. Doctors just tell him some facts without much details so I am more "the doctor" then they themselves :). He gets more info from me than from them.

So, be persistent, go there and be selfconfident and ask for detailed exam. And tell them honeslty how you feel and that you can't be reassured unles they do their job correctly.

I pray for you and strongly believe that all you have is just post radiation side effects. I read many times that they last for several months... People feel tired for a year post treatment. Let me advise you to not work that hard. Really! My colleague at work had cancer of the testicles on 2010. He finished his treatment (surgery and chemo) at the beginning of 2011 and returned to work in May 2011. He still feels tired and cannot work that much anymore. Although he IS working a lot, but gets tired quickly with some side effects of his tx last year. He is in his 30-ies with two young daughters. But he told me that he cannot work that hard anymore - his body just does NOT allow him that anymore.

I also got many advice from people that I know who survived cancer and told me that my dad will have to work less after he finishes his treatment. Just enjoy life with your family more, do not allow yourself so much stress and try to talk less to allow your mouth to heal. It's a long lasting proccess which will probably last for entire year. Everybody told me that after surviving cancer and that heavy treatment you are just not the same person you were before and you have to take care of yourself more.

My prayers are with you!

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