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Pain Management after Chemotherapy

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Brand new to this discussion board, my boyfriend Joe has recently been diagnosed with stage IV Tonsil Cancer. He has just completed his 2nd treatment of induction chemotherapy of Cisplatain, Taxatore & 5FU. Both times after treatment ended (4 days later because of the 5FU taking 92 hours) he is in agony at the tumor site. He has taken everything imaginable for pain management and nothing helps. My question is...is this pain common for others and has anyone found anything to ease the pain?

SASH's picture
SASH
Posts: 276
Joined: Apr 2006

I would suggest contacting the doctor and asking for something for the pain. You need to make sure that what he is taking doesn't interfere with the chemo. They normally know what works and what doesn't. They might suggest something over the counter or they might suggest a prescription. Always check with the doctors before taking anything, including vitamins.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Welcome. Sorry you have found yourself here and your boyfriend is dealing with so much pain. My partner was diagnosed with Stage IV SCC HPV16+ primary site left tonsil. He had a great deal of pain in his throat and ear. We took the surgical approach first and cut as much out as possible. He just finished 6 weeks of chemo and radiation. The thing that helped him the most for pain was a Motrin based drug. He had a motrin/codiene combo that nipped the pain quite nicely. However, Motrin is a no-no prior to surgery and also a no-no during chemo therapy in that it can mask fever which is a reportable problem.
I agree with SASH, speak with his doctor. Today's medicine is very advanced and there are many options now to deal with pain.
Stay on these boards to answer questions, get support, and LEARN!!
Kim

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Yes- get thee to a Dr. The body has enough to deal with, as is, and the stress of pain might be hindering things all the more. Hydrocodone helped me a lot, along with the Magic Mouthwash. Your Drs. really should have been involved with this quite some time ago.

kcass

grateful1
Posts: 81
Joined: Jun 2010

i have inoperable aggresive thyroid cancer but i have a lot of ear pain--and neck...is ear pain associted with oral cancer tho--i fear that as i have many irritations in my mouth as i have had dental appliances since i was young. good luck and thanks

tonyanddenise's picture
tonyanddenise
Posts: 70
Joined: Jun 2010

I have only completed 1 dose of cisplatin/Taxol. no Fu5. one week of radiation.
I did have a Radical neck dissection of the left side and a tonsillectomy. I am T1N2BMO.
I am not having additional pain. I am assuming Joe has not had surgery? The surgical sites seem to take a while to feel good again. The folks here that reccomend coming back are giving you good advise. This is a good place with kind and intelligent people. And then there's me!
I'm still learning. Call or see your medical oncologist. please.

Greg53's picture
Greg53
Posts: 830
Joined: Apr 2010

Rita,

Sorry you find yourself on this site, but welcome to our group. There have been several threads in the past about what pain relief medicines worked for everyone, from liquid morphine to Fentanyl patches. But I agree with the others that this is definitely the doctors call, especially since Joe is still in treatment. In my team of 3 docs, my ONC took the lead on pain management and it took a few tries but he was able to get me on something that worked finally. You might want to check with all of your docs and let them know your situation and make sure they are talking to each other also.

I was SCC right tonsil with mets to lymph nodes on both sides of neck. Had rad neck dissection and tonsillectomy followed by rad/chem (different than Joe's - I had 3 treatments of Cisplatin). If Joe did have tonsillectomy I can relate on the pain. The tonsillectomy for me was the worst in regards to intense pain and it took a couple weeks and several different drugs til I got that pain under control.

Find out which of your docs handles pain management and make sure he works with you on it.
Good luck and hope pain subsides soon.

Positive thoughts coming your way!
Greg

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Good Morning everyone…Thank you all for the kind words and encouragement. In my haste to ask my question I didn’t explain his situation fully. The docs have given him pain meds…Percocet, Dilodid, Fentanol Patch, Liquid Morphine. The one thing that helps the most is Ibuprofen probably because it is an anti inflammatory. Percocet worked at first, Dilodid made him sick. This time he used the Fentanol patch with a small amount of liquid morphine for ‘breakthrough’ pain. The pain starts after the chemo is done and lasts about 5 days (I think it’s the chemo reaction to the tumor because it has visibly shrunk).
He is not a candidate for surgery; the main tumor is in his left tonsil and wrapped itself about the jugular vein and is sitting against his caroided artery. He has a small one on the right tonsil. Docs are trying to make it smaller for the radiation oncologist.
I just wanted to know if this happens to someone else and if anyone had any suggestions to ask the docs for pain relief when it happens. He hates the patch and the morphine.
Thank you again everyone...it really helps to read all your threads and to see how helpful everyone has been! Nothing is more informative that someone else who has 'been there and done that'. I have bookmarked this for Joe when he is feeling better so he can see all the positiveness and the light at the end of the tunnel.

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

For some reason I had a sense from your intial post that Joe had not had surgery. And it was Mark's experience too, that while the tumor was still present Motrin, an anti-inflammatory, was the only thing that gave him relief. He too hated (and still hates) the narcotics. After he had the surgery THAT pain went away...and the post surgery pain began. (rough) We just asked the ocologist on his last day of treatment if Mark could resume the Motrin/codiene pain medicine...and the answer is still "No". Damn.
My guess is as Joe's tumor shrinks the pain will become less...but what to do in the meantime will have to be a conversation with the doctors. They have an arsenal of pain medications...but I know, like you and Joe, there is just something in the anti-inflammatory that does the trick.
I don't know where you live, we live outside of Philadelphia, and there is a surgeon (ENT) at the University of Pennsylvania Hospital that does TORS (Trans Oral Robotic Surgery). It is a robot that can do things the human hand cannot. Not everyone is a candidate for it either...and Mark had a consideration about his carotid that could have ruled him out...but didn't.
You sound like a great support to Joe, and getting information from those who have traveled this road before you can make you a great advocate.
My Best to you and Joe, and everyone here,
Kim

grateful1
Posts: 81
Joined: Jun 2010

my dr giv es me vicodin and it helps..anoher gives me liquid morphine--but i hate the taste. pain in my ear, neck, etc. was my first sign of cancer, i have had no trearment yet. they tried to take out my thyroid tumor but it was inoperable.good luck

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Hi Rita and welcome aboard.

I had a very similar reaction on the first round of chemo. I also had tonsil cancer with one lymphnode involved. Nine weeks of Cisplaten, Taxotere and 5FU (pumped). That followed by seven weeks of Carboplaten (weekly) and 35 daily Radiation exposures with Amifostine Injections in the stomach.

After the first week of chemo my tumor site also swelled up and was very inflamed. If I remember correctly, they prescribed Levaquin for me 3- 5 days I think, can't remember for sure. But that did the trick, swelling reduced and actually I don't think it happened again.

They removed the tonsils first thing before any treatment started. Leaving the tumor to react to the chemo and rads. The tumor noticably reduced after the second round of chemo, and was gone after the nine weeks (a CT confirmed that).

I also had similar pain drungs, but more for swallowing. Percocets, Oxicotin, liquid hydrocodone, and Raxanol (Liquid Morphine). I couldn't tolerate the morphine, it made me sick, and nothing for the pain.

When I couldn't swallow the Percocets any longer, I just dissolved them in water and chased the hydocodone or the magic mouthwash solution. This allowed me enough time to get down some water, Ensure Plus and jarred Del Monte Peaches...my main stays for about seven weeks during the end of the rads....

I would definitely touch bases with your MD's and discuss anything you feel is excessive or untolerable.

Best,
John

up2myneck's picture
up2myneck
Posts: 2
Joined: Apr 2010

I too had stage IV (the first time 2008). The cancer reoccurred March 2010 and has put me in the same position as Joe. I just finished 4 rounds of chemo. The tumor did not shrink
enough for surgery yet. Will have a CT 9/29/2010 and go from there!
I had hydrodone for pain the fist time. I'm now taking 1/2 a tablet of morphine sulfate IR
15 MG TROX. I found a whole tablet would make me very sleepy. The doctor let me cut it in
1/2. It took a while to get my pain medication right. I didn't like the feeling some gave
me. With pain medication, it can also make you constipated. This in turn can cause added
pain in the neck area. Bending, turning etc. also hurts.
Good luck Joe and Rita. Don't forget to drink as much fluids as possible! Everybody here
is here to help.
Ray

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Many thanks to everyone who responded. I have gathered all the information and I am armed for our next visit with the docs. We are blessed to have found this group! Rita & Joe

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

Many thanks to everyone who responded. I have gathered all the information and I am armed for our next visit with the docs. We are blessed to have found this group! Rita & Joe

Skiffin16's picture
Skiffin16
Posts: 8053
Joined: Sep 2009

Rita, you are already displaying one of the characteristics of a seasoned poster here, double posting.

It's easy to do because at times the site is slow, so you hit the post button more than once...next you have two or three or more posts....

Also, you'll have to get used to some of our humor....

Best,
John

Rita3710's picture
Rita3710
Posts: 14
Joined: Jul 2010

John, Too Funny...double posts...Humor is good....haven't had much of that lately!

Joe was admitted to the hospital yesterday...they think dehydration, but doing tons of bloodwork to rule out infection. He finished his 2nd round of chemo on Monday, but the rebound this time is slow and he got really sick Friday afternoon. He must be feeling a little better this morning because he asked me to bring in his laptop so he can read all of his sports & newspaper sites. I will know for sure he is better when he starts yelling about politics and sports commentators!

I am only going to click once this time!! :) Rita

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