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I'm currently 8 weeks out from completing 6 weeks of radiation (no chemo), which was preceded by a double tonsillectomy, TORS surgery and a neck dissection. Toward the end of radiation I was given two prescriptions for Oxycontin (15mg long acting) and Oxycodone (5mg quick release). Techinically these are both Oxycodone, just delivered differently.

At the peak I was probably up to about anywhere between 80 and 115mg per day. As I progressed we started cutting back slowly to a point where I as at a fairly consistent dosage of 75mg/day. When I went for my six week follow-up after radiation, my doc suggested I ramp it down. Through a series of miscommunications on both our parts I went from 75mg a day to just 15mg for several days. He wasn't exactly clear on exactly how quickly to cut back and I jumped the gun. On my 2nd day at 15mg I vomited for the first time in 40 years (seriously... last time was 1979). All of a sudden I felt this overwhelming anxiety. I was extremely jittery and had a very difficult time sleeping, alternately sweating and getting chills.

At first I didn't know where these symptoms came from. It was my amazingly perceptive wife who wondered if it had to do with the change in my med dosage. A quick Google search of oxycodone withdrawal made the answer clear right away. I was suffering from opioid withdrawal. I went back and forth with my oncology nurse on the phone and she said the doc was recommending to stay at the lower dose (though I'm not sure he knew exactly how low I had gone). After a few days I got in to see my PCP and she said it was definitely withdrawal. She got me on a plan to maintain 60mg a day with both long acting and quick release. She also got me an appointment with the pharmacist at their office. When I met with him he gave me a much more detailed plan to go down from the 60 I was at to 30-45 or so over the course of two weeks. I saw a psychiatrist/therapist for help with the anxiety and he agreed it was a good plan. I was also given hydroxyzine and clonidine to manage the withdrawal symptoms.

I'm in the middle of the two week taper and things are MUCH better than they were. I still get some anxiety and some days are harder than others. But it's far more manageable. I'm meditating (which I've done for years anyway), getting out to do social things, and reminding myself that the main cause of these feelings is chemical.

When I met with my psychiatrist he noted that just this week the FDA issued a warning about getting off of opioid pain medications too quickly. They are making new recommendations for doctors and patients. Here's the link:

https://www.fda.gov/Drugs/DrugSafety/ucm635038.htm

I want to warn others to be advocates for themselves when it's time to reduce opioid dosages. Read the FDA info and be assertive with your docs that you want a plan that gets you off opioids but does not do so too quickly. As the FDA says, that increases the danger of serious addiction or replacement with worse alternatives. (Also, be very sure to keep up on your prescriptions and make sure they get refilled before you run out. A few days without could be awful, and not just because of pain.)

What I think people really need is a very specific schedule to reduce their dosage when pain subsides. If a doctor says "Start cutting back," I'd say ask for numbers/dosages and specific timelines. To me it would be easier and more clear if they put folks on an explicit schedule; Two Week Taper, Day One - Xmg total, Day Two - Ymg total, Day Three - etc. See if you can get your doctor be much more specific with dosages and timelines. Follow up with questions if you have them. Note that the FDA says some people may need to be tapered ny 10%-25% every 2-4 weeks and that even if you taper slowly there's a likelihood of experiencing some of these symptoms.

I mention this because I'd hate to see any other folks here get hit with withdrawal or addiction on top of the other issues that we're dealing with. And there are so many aspects we need to educate ourselves about.

I hope this is helpful to you. If you have any follow up questions or concerns to share, please post them and I'll address them as best as I can. I'm also curious if any others have had any similar experiences.

All the best in your recovery and health!

Brad

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Welcome to OCF, Brad!

Im very sorry to read what you have been thru! Being 8 weeks post rads, the worst is finally behind you. smile The recovery phase seems to take forever to get thru. As patients, we can never get well as quickly as we think we should. A complete recovery from oral cancer (OC) treatments takes a full 2 years. Patients in recovery can expect ups and downs plus an occasional set back. About all anyone can do to get thru it the easiest way possible is to focus on whats within your control... your intake! Even though you have already finished your treatments 2 months ago, theres still a long road until you hit the finish line. As you are recovering, on a daily basis you need at least 2500 calories and 48-64 oz of water to help your body rebuild itself. You may want to add some high protein whey powder to add more protein to your intake but check with your doc before making any changes or adding even something thats over the counter.

You certainly sound like you have learned alot about opioid pain meds. Thank you for giving everyone so much info about pain meds and info about discontinuing them along with a link to a reputable resource. Being new, you may not know our forum is made up of (OC) patients/survivors and caregivers who do not have medical backgrounds or degrees. This conversation is something we havent had much of on here but your post brings it out which helps to educate us all about a topic that many here should be aware of. OCF always advises everyone to seek out their own physician when it comes to asking individual case-specific questions or if they need more info.

Many OC patients/survivors and caregivers struggle with anxiety. Having anxiety is perfectly understandable after the barbaric treatments and major surgeries we have been thru. Many will need some help talking to a therapist and/or taking meds to temporarily keep their anxiety under control. Depression is very common among OC patients as well. Most treatment facilities have therapists or a specialist that regularly talks with cancer patients and/or caregivers to help them better adjust to everything they're going thru. Being diagnosed with cancer can be a traumatic experience by itself and for some it gets even more difficult after they hear those dreaded words... "you have cancer". Anxiety or any other mental/physical problem that comes up after being diagnosed is perfectly normal and is not anything to be ashamed of. Many have found help with coping just by using our online forum and interacting with other OC patients/survivors and caregivers. We all have been thru some very difficult days/nights. We thoroughly understand where everyone here is coming from, what they're dealing with and how hard its been.

Our site is made up of GREAT people from all over the world who have a common bond created by a horrendous disease. We're here to help each other to succeed and make everything as easy as possible. Best wishes with your continued recovery!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Brad, you are absolutely right about having a plan for stepping down. I was also glad to read that you got help from your PCP. Once the heavy duty treatments are over, most patients only get a monthly/three monthly call back to see their oncologist, but many patients still have issues which need to be taken care of in the mean time, between appointments. A good PCP can be a tremendous help. My husband relied on his all through. The PCP is much more accessible than the oncologist. It is really important for patients to keep that in mind.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Great information Brad!

The opioid usage after rads is my life right now so I understand your situation perfectly. I am right now 3 months out from ending radiation but have residual pain that has me stuck on oxycodone about 40 to 50 mg per day. Luckily, my rad onc. was USUALLY clear about 'cutting back' and I usually would follow up to get specifics on what she was expecting. I will say at one point I was trying to cut back too fast and my symptoms were stomach pain and up in the middle of the night out of no where needing to empty my bowels. Luckily, she had warned me to watch for warning signs of withdrawal while cutting back so I immediately thought of opioid withdrawal and went and took some oxy. Problem solved! But you have a good point, when they ask you to slowly cut back, well really we need specifics!!!


Good luck on your ongoing recovery!


Laura Age 40
Tongue lesion on left side grew and was hurting in mid-August
Dx as squamous cell carcinoma on 9.18.18
Left Neck Dissection and tongue surgery, lost a fourth of my tongue on 10.1.18, tumor had grown to a T3
Margins were clear except front section of tongue margin had three stray cancer cells that were not in the tumor
Additional surgery 10.18.18 to remove another cm near where the stray cells were found
33 radiation treatments from Nov 2018 through Jan 2019

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