Pain control

Curlyn

Hi Everyone, I'm new to the forums and posted about a week ago. My biopsies were inconclusive and the cancer grew in my neck for a year prior to selective neck dissection which basically removed everything but internal carotid. Surgeon said I had high 80 s chance of survival with chemoradiation, but first TORS to remove primary, which was less than 2mm. I was always an avid gym goer who took care of myself so dealing with the numbness, cut nerves, trap muscle pain from sa scarifice ( which is now trying to contract halfway up the back of my head!), swallowing problems, lower lip dysfunction, and now tongue numbness from TORS, has been a whirlwind punch in the face. But despite all this, doing the the exercises since day one, staying active, I'm finding that the pain has been unbearable. I awake in the morning trembling with it. Everywhere. And I'm not in any mood, regardless of outcome, to do chemoradiation thus increasing my concurrent agony. Can anyone please tell me what they used? I'm on Tylenol and the odd ibuprofen. Life is a misery..(I apologise for this post but I'm totally worn down mentally, my family are worried but don't understand- truly thought I'd be gearing up to fight the the fight if my life at this point but the pain is incessant).

Curlyn

PS. And being strapped down

PS. And being strapped down to the table with a mask on, when you have swallowing problems and polyps is terrifying. I never am able to sleep on my back because can't breathe.

soonermom

Pain

I am so sorry.  Have you had a very frank conversation with your treatment team about your pain level?  Again, I am so sorry for you.  All I can say is don't make a decision about further treatment without a focused attempt to deal with your pain.  While you are in pain is not the time to make such a critical decision. Doing what is needed to slay this beast of a cancer has to be your main focus and you can't do that when you are struggling with pain.  Please don't minimize how you are feeling and talk to the treatment team.  I assume you are at a major Cancer Center for treatment?  I found my husband tended to minimize his side effects, including pain during clinic visits. They should also be able to offer you ways to deal with your concerns about the radiation masking etc. I am so sorry for your difficult journey.  Please hang in there.

Curlyn

soonermom said:

Pain

I am so sorry.  Have you had a very frank conversation with your treatment team about your pain level?  Again, I am so sorry for you.  All I can say is don't make a decision about further treatment without a focused attempt to deal with your pain.  While you are in pain is not the time to make such a critical decision. Doing what is needed to slay this beast of a cancer has to be your main focus and you can't do that when you are struggling with pain.  Please don't minimize how you are feeling and talk to the treatment team.  I assume you are at a major Cancer Center for treatment?  I found my husband tended to minimize his side effects, including pain during clinic visits. They should also be able to offer you ways to deal with your concerns about the radiation masking etc. I am so sorry for your difficult journey.  Please hang in there.

Thank you Soonermom, I speak

Thank you Soonermom, I speak c them tomorrow. It's a major center. They want to hurry treatent now but I will talk to them. Making appt c my doc tomorrow too. I just wondered what others were put on for pain. 

SuzJ

Sorry

I was given pain meds, but got by with Tylenol mostly

 

I have Tramadol, and Hydrocodone, neinther of which I took more than 5

Curlyn

Happy to say that I had a

Happy to say that I had a good discussion c the team today and they agreed that I needed something stronger to curb the pain and help me to sleep. I felt totally supported, am feeling better, and am hoping to get through treatment now. Thanks.

Klingels

Pain

My husband has had an excessive amount of pain as well. He was using morphine. It stopped helping after awhile. He was prescribed the fentanyl patch, but was too concerned with the side effects to use. He finally stopped using morphine due to all the side effects he was having. He still is experiencing pain, but it has lessened. This journey is harsh. He is 9 weeks post treatment and just starting to eat small amounts of food through his mouth.

Curlyn

I haven't started

I haven't started chemoradiation yet, maybe next week. But first night's sleep I've had in months and I'm able to eat now. What a relief! I hope your husband continues to progress.

Bionicguy

Painmeds helped get me through it

I had 42 radiation treatments. It all went well until they got the part where is felt like they had used a bloe torch on my mout and thoat. Honestly my mouth and troadt looked like raw hamberger. I was on fentyl patches, hydromorphoine and dilauded. I also had some liquid morphine for "breakthroug" pain. i didn't know at the time what that was. but I found out pretty damn quick. It sounds like a lot of drugs, but tapering off went pretty well following treatment. My only advise is don't get into a situation where you have nothing avialable when you need it.

Curlyn

Thanks Bionicguy, i've only

Thanks Bionicguy, i've only just begun radiation. After two treatments the nerves are already acting like hot pokers in my ear and jaw. First chemo is today. I did get narcotics but they dont do much for nerve pain. Might ask about lyrica today. Good luck to you. For sure, I will take my meds. The disease was extensive in my neck, have to get through this.

lorijeannj

Curlyn said:

PS. And being strapped down

PS. And being strapped down to the table with a mask on, when you have swallowing problems and polyps is terrifying. I never am able to sleep on my back because can't breathe.

My husband had the radiation

My husband had the radiation techs cut around the nose of radaitaion mask so he could breathe because his tongue was so swollen and he panicked when placing the mask on.

His tongue is still swelling but was told it will go down after week 2 (we hope!).

As for pain, I am giving him 10mL of oxycodone (crushed pill into PEG) and ibuprofen before treatment, after and twice more before bed.  Alternate with tylenol.  Gabapentin helps A LOT with all the nerve issues (ear, head, etc.).

He states the pain is excruciating.  

lorijeannj

Curlyn said:

Thanks Bionicguy, i've only

Thanks Bionicguy, i've only just begun radiation. After two treatments the nerves are already acting like hot pokers in my ear and jaw. First chemo is today. I did get narcotics but they dont do much for nerve pain. Might ask about lyrica today. Good luck to you. For sure, I will take my meds. The disease was extensive in my neck, have to get through this.

Gabapentin might work for

Gabapentin might work for nerve issues.  My husband is taking it and all nerve issues subsided or went away.  It'sd the pain we are trying to get a hold of.

lorijeannj

lorijeannj said:

Gabapentin might work for

Gabapentin might work for nerve issues.  My husband is taking it and all nerve issues subsided or went away.  It'sd the pain we are trying to get a hold of.

New mask yesterday and all

New mask yesterday and all ack on track.

lorijeannj

New mask

New mask yesterday as the tongue swelled that much and pain was intolerable.  Back on track again.

lornal

Pain

Do whatever you can to get ahead of the pain.  Go stronger if necessary.  Staying hydrated also makes a big difference with pain as well. I think I had most pain killers that are out there.  Never really felt like they were working until I tried to get off - yeah they were working. 

Lorna 2007 & 2014

Curlyn

First week down. Good mouth

First week down. Good mouth care, lots of water. Ordered therabite for jaw stiffness and doing swallowing exercises. Gotta say I'm pretty nauseous today as i stopped the dexamethasone yesterday (start up again on Wed c chemo). Pain has been ok but need to stay on top. Good luck to everyone else who's dealing c treatment, post treatment, and this disease in general.

Dean54

Curlyn, I'm right behind you

Curlyn, I'm right behind you sir, had my first treatment today so will be following you for insight and advice since you are slightly ahead of me. Let's beat this!!

Curlyn

You got it Dean! We will get

You got it Dean! We will get through it.

MemphisTn

pain meds

the best prescription I actually used was Ativan. The ‘pain meds’ did little for me, after about week 3 of radiation i got the fentanyl patch, very low dose. Between the fent and the Ativan, the pain and attitude was better, though I only popped the Ativan as needed. I was a bad patient, between the oxys, hydros and all the other garbage they prescribed, I basically hibernated for 2.5 months. Let me tell you, no matter what, keep moving, the back issues and other physical affects of laying around are almost worse than the treatment. It stinks, it all stinks, from diagnosis to treatment, recovery, the whole process stinks, but, I can assure you with many others here, it’s a mental game. You can’t let yourself stay feeling defeated. There are plenty of us here, I’m only a year out, many are much longer, as living proof that you can and will power through. Take what works for you, don’t take what doesn’t, don’t hesitate to contact your clinic to let them know what you need or discuss any concerns. Yes, it all happens so fast, it’s hard to insure the best decisions are being made. I’d like to say it’s all out of concern for us pstir DT, but, cancer is big money right now in healthcare. So, never be afraid to get your answers first and know what your stepping into. I am the worst patient ever, if I can get through it, you can as well. Keep your chin up, rest when you need and take whatever is necessary to get to the finish line as best as possible.

 

Much love,

-paul

Curlyn

Thanks Paul, I am finding the

Thanks Paul, I am finding the reduced physical activity as debilitating as the treatments. Its all cumulative. As for meds, its been a juggling act but I think I'm on to a better combo.