#58438 05-30-2006 05:15 AM | Joined: May 2006 Posts: 10 Member | OP Member Joined: May 2006 Posts: 10 | I mentioned last week that I was having problems getting adequate pain control medicine from my surgeon. (I had surgery for partial glossectomy and selective lymph node dissection on May 10th and I am still having pain basically on the entire left side of my shoulders and neck.) My surgeon had sent me home with oxycodone and I had a severe allergic reaction to it, and then sent me via mail a presciption for percoset, and I had a similar reaction to that. When I called, they suggested I try them with Benadryl, which I did, all to no avail. I even tried using it with Claritin, but that didn't help the itching, or the fact that the pain medicine really wasn't doing the trick.
I called my surgeon back today and explained my problems and his nurse asked me what kind of pain killers I had used in the past. I told her that I had used some heavy painkillers in treating migraines, but that I didn't think that the Stadol would work for this kind of pain because it wasn't really meant to be used over and over again. Other than that, I had not really had a lot of different kind of pain meds. The nurse said she would call me back. When she did, she basically told me that all he could recommend now would be Celebrex or Motrin. I have used both of those things in the course of treating migraines in the last 20 years, and they are a step down from the drugs he was giving me to start with and I said as much to the nurse and that I didn't think they would come close to dealing with my pain levels. She pretty much said sorry, that was all they could offer. I asked if I should call my oncologist to see if he could offer anything and they said, "Yeah, you might want to do that."
Right now I am so mad I could just stamp my feet like a little kid. Not that it would do any good. Is there anything else I can do in this instance? Anyone have any suggestions. I put a call into my oncologist, but it didn't really sound like I was going to make any headway there either. It is just unbelievable to me that in my situation who has a history of being able to take pain medication for years without abusing them is now put in the position of having to justify their use in another application.
I also realized after reading the online article about Candida that I have a major infection going on in my mouth and that I did in the hospital, too. When I asked the nurse about it and whether it was what my Mom used to call "thrush," she just said she didn't really know what to do about it, but I could probably just rinse with the mouthwash they had given me and it would be fine.
I am wondering now if the pain I am experiencing in my throat could be from the Candida? I have a real problem swallowing, but it seems to just be on the left side of my mouth, on the same side that I had surgery on my tongue.
Any further thoughts on the subject would be appreciated.
RLM | | |
#58439 05-30-2006 08:52 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Candida can be really painful. I ahd a bad case a few months ago and my pain levels went through the roof. Does the mouthwash you have have Nystatin in it? If so, it should help get it under control (you can also get lozenges you can suck on to help control it).
As for the pain relief, a medical oncologist should be able to find a pain medication, or combo. of medications, that works for you. Migraine pain is pretty different from the pain you have now, though, and you might find that Celebrex helps more than you might think it would. Still I would definitely go to the oncologist, who should be used to treating some very severe pain, and also should be aware that pain meds don't usually cause addiction when they're used to treat this sort of pain.
Good luck.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#58440 05-30-2006 01:26 PM | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Mar 2006 Posts: 99 | I can't believe a nurse or a doctor would see that you have thrush and not give you Diflucan or Nystatin to treat it. Along WITH the painkillers. The nurse in the hospital should hsve reported it to the DR. When my husband has the thrush his pain level is ten times worse. You really need to get it in control. I would get more persistent about it. You should not have to suffer this way...Good Luck
Kerry/wife of stephenm StageIV - Base of Tongue T4N0M0 XRT x42 / Taxol and Carboplatin x4 Tx. Finished 5/08/06
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#58441 05-30-2006 01:26 PM | Joined: Mar 2006 Posts: 99 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Mar 2006 Posts: 99 | I can't believe a nurse or a doctor would see that you have thrush and not give you Diflucan or Nystatin to treat it. Along WITH the painkillers. The nurse in the hospital should hsve reported it to the DR. When my husband has the thrush his pain level is ten times worse. You really need to get it in control. I would get more persistent about it. You should not have to suffer this way...Good Luck
Kerry/wife of stephenm StageIV - Base of Tongue T4N0M0 XRT x42 / Taxol and Carboplatin x4 Tx. Finished 5/08/06
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#58442 05-30-2006 03:06 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | RLM. Oxycodone (AKA Percocet) is indicated for treating moderate to severe pain. I can't even imaging the nightmares I would had with had they not given me Duragesic (Fentanyl) 72 hour pain relief patches. The percs are good for breakthrough (although morphine is better - its faster acting). Your oncologist should be managing your meds.
Thrush can be fatal if it gets away from you and goes systemic. They've got to get on that right away. You don't EVEN want it in your esophogus or stomach
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#58443 05-31-2006 07:51 AM | Joined: May 2006 Posts: 10 Member | OP Member Joined: May 2006 Posts: 10 | Thank you all for the information you offered. The mouthwash they gave me to use doesn't have nystatin in it or anything to treat Candida. It is just the same stuff you get after you get a biopsy to keep your mouth extra clean, kind of a chlor-hexadrine wash. Anyway, I will try and again to put a call my oncologist and see if they will respond to my call about this. I waited to hear from my oncologist all day yesterday and heard nothing. I really don't know what to do now. I am not due to see them for three more weeks, but I know I can't endure what is going on with me right now. I feel like I am left to deal with all of this on my own, no rehab for my shoulder and neck stiffness suggested, no pain relief, nothing, and I am just getting more and more depressed. | | |
#58444 05-31-2006 08:26 AM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2005 Posts: 624 | Dear rlm --
If you did not hear from your oncologist (or the oncology nurse) then call the patient support person at the hospital and make some waves.Every hospital has some sort of social service person, someone who deals with complaints or concerns, etc. -- if only for fear of malpractice suits -- and you or your caregiver need to involve them. You have a potentially serious infection which can affect your treatment outcome, not to mention your well-being, and it is not being treated. That is pretty close to malpractice in my book. Not to mention no effective pain relief!
If you have a GP (family doc) call him or her and try to get them to intervene as well.
Good luck, be forceful -- you have to be your own advocate in treatment and sometimes -- you have to get pretty aggressive about it!
Gail
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#58445 05-31-2006 11:23 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | RLM,
I have to agree with Gary and Gail. This lack of responsiveness on the part of your doctors about your pain and thrush is simply unacceptable. I had some bouts with thrush when I was going through radiation and I know the pain was truly awful until I got hold of the right medication.
If your doctors haven't dealt with this, get in touch with people higher up the chain in your hospital -- department heads, the president of the hospital, whoever it takes to get some action. This can't wait until your next appointment.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#58446 05-31-2006 03:54 PM | Joined: Feb 2004 Posts: 218 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Feb 2004 Posts: 218 | RLM, As Gary and Cath say, don't take no for answer if your pain is not being adequately treated. Thrush is a fungal infection and needs to be treated immediately. It is relatively straightforward treatment when caught early. There are a variety of anti-fungal drugs that can be used including Nystatin and Diflucan.
If you don't get satisfaction, consider switching doctors, and get a second opinion in the process. I found that sometimes I had to be obnoxiously pushy to get what I considered appropriate treatment. Seems to be part of the journey. Good luck, Sheldon
Dx 1/29/04, SCC, T2N0M0 Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions) Dx 3/15/2016, SCC, pT1NX Tx 3/29/16 Surgery
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