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Old 03-01-2010, 11:02 AM   #1
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New here - cancer patient w/questions on Fentanyl patch

Hello All!

I'm new here and this is my first post. I'm happy to find this board, but sad to read some of the horrible experiences you all have had with your pain.

I was diagnosed about six years ago with Stage 4 Breast Cancer with metastasis to just about all my bones. It is an extremely painful condition which I have been trying to manage for several years now. The good news is I am still alive - the bad news is I am in so much daily pain. I have been taking Oxycontin 100 mg twice per day along with Oxycodone for breakthrough pain (now up to 45 mg a day).

Last week all of a sudden my pain started going through the roof so I ended up in the ER (that's another bad story). Anyway, they decided to change my meds to the Fentanyl patch 75. They told me to get the Mylan type as it sticks better, so I picked it up at the pharmacy.

I have been reading around on this site and here are my questions:
  1. I am still in pain so I'm not sure the dose is correct. Or could it be that I got the inferior product?
  2. For those of you who have tried different ones what is your preference and why?
  3. Does the headache ever go away?
  4. I have very sensitive skin - which will be the kindest to my skin in terms of the adhesive?
  5. Do you feel that the patch is better for your pain management as opposed to orals?
  6. Do you specifically work with a pain management specialist? My oncologist has been handling my meds up til now.
I appreciate any input you guys can give me as this is all new to me. I just want to live my remaining days without horrible pain. I don't know if this is even possible. My heart goes out to you who are dealing with similar situations. Thanks for listening.

 
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Old 03-01-2010, 12:21 PM   #2
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Boxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB UserBoxerluver HB User
Re: New here - cancer patient w/questions on Fentanyl patch

Hi Ray,

I am sorry to hear of your situation. I had stage 3 melanoma and now have an auto-immune disease. I have been on the patch for years and find for me that it is a huge help. First off let me start with your questions. From my own experience and from what others have said, Mylan is not the best option. Many of us still had pain and it did not work as well at all. The patch comes in two forms, the kind where the medication is actually on the adhesive like the Mylan and the resevoir type where the med was in a gel that was kept in the middle of the patch. That was the kind I used, brand or generic. The brand, Duragesic has now makes their in the adhesive and that is the one I use now. I have had no problem with it at all. The other option that helps is to change the patch every 48 hours instead of the 72 hours often prescribed at first. Many patients noticed that the pain began to come through by the third day so many docs have them change their patch after 2 days instead of 3. If that's happening you can tell your doc by the third day the pain is getting back up there and the patch is not covering it.

As far as the headaches go, they should go away after awhile. Many narcotics cause headaches, it just depends. I personally get them with Dilaudid. If they don't go away at first I would ask your doc if it's OK to take an aspirin, tylenol or ibuprofin and see if that helps. I do get one every once in a while and I just take a few aspirin.

Having sensitive skin can be a challenge. What my doc suggested was I spray Flonase where I am going to put the patch, let it dry and then out on the patch and cover if you need one. My patches stay on without a cover although I have heard the tegaderm covers are good. But the Flonase stops the skin from getting red and itchy. The covers can be tough on the skin though.

As for your last two questions, yes I definately feel the patch is better pain control than the orals. Plus I like not having to take all the pills. As to whether to go to a pain management doc, that would depend on how your oncologist is doing with your pain control. If you don't think he's listening to you or hesitant to increase the meds when they are not covering the pain then a pain management doc might be a better choice. Not all pain management docs prescribe pain meds, many just do shots and the like so you want to get a referral from one of your other docs. Do you go to a cancer center? They usually have their own pain docs there. Mine does although I go to a different pain doc an hour from me. It just depends on the relationship with your oncologist. It certainly wouldn't hurt to look into a pain management doc and then decide.

I think that's about everything with the patch. Make sure you stay away from heating pads or at least make sure the area with and around your patch doesn't get heated. I just stopped using them altogether. And you shouldn't let your bath water get too hot. Other than that it's a great pain med. I hope I answered everything but if I didn't I'm sure someone will.

Welcome!!
Melyssa

 
Old 03-01-2010, 09:19 PM   #3
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Executor HB UserExecutor HB UserExecutor HB UserExecutor HB UserExecutor HB UserExecutor HB User
Re: New here - cancer patient w/questions on Fentanyl patch

Quote:
Originally Posted by ray of light View Post
I'm new here and this is my first post. I'm happy to find this board, but sad to read some of the horrible experiences you all have had with your pain.
Welcome to Healthboards. This is a great site where many people with very diverse backgrounds all come together to help provide support and guidance to those in need. I hope you find your time here beneficial.


Quote:
Originally Posted by ray of light View Post
Anyway, they decided to change my meds to the Fentanyl patch 75. They told me to get the Mylan type as it sticks better, so I picked it up at the pharmacy.
Did your Doc still give you something for BT pain? I hope so because it's an important part of pain management.


Quote:
Originally Posted by ray of light View Post
I am still in pain so I'm not sure the dose is correct. Or could it be that I got the inferior product?
When changing from one med to another, there can be some transitional issues and can take a bit of trial and error to get the dose right. Fentanyl is the strongest pain med out there & Docs have to be very careful with the fent dosages because it is so potent. Thus, protocol calls for very conservative initial dosing until the Doc and patient can zero in on the correct dosage. How long have you been on this patch?


Quote:
Originally Posted by ray of light View Post
For those of you who have tried different ones what is your preference and why?
Sounds like you've read some of the older threads / posts about the Mylan patch. A fair amt of people have complained about it, but most of the complaints have been from those who have used another brand of patch and then switched to the Mylan. Many do say it's the weakest and this concept rears it's ugly head the most when jumping around from one brand to another. As long as you only use one brand and find the right dose, you should be fine.

Conversely, there has been excellent feedback re: Watson and Duragesic. Sandoz is another generic and it's ok. The other two are definitely better. "Duragesic" is the brand name, so in order to get insurance to pay for it, your Doc may need to write "DAW" (dispense as written) or "brand only" on the script.


Quote:
Originally Posted by ray of light View Post
Does the headache ever go away?
Yes, once your body adjusts, it should go away. If not, then fent may not work for you.


Quote:
Originally Posted by ray of light View Post
I have very sensitive skin - which will be the kindest to my skin in terms of the adhesive?
Honestly, I think they are all about the same. I had good luck with the Duragesic sticking well, but I also had issues getting the glue off afterwards. Good adhesion means lots of glue. This was part of the regimen I did not like...Plus it itched quite a bit and I was always aware of it & etc. I'm just not a big fan of the patch concept as a med. But, it did work pretty well for me.


Quote:
Originally Posted by ray of light View Post
Do you feel that the patch is better for your pain management as opposed to orals?
The good news is that your Doc has lots of options. Can you take oral morphine? If so, it tends to hold the patient very well re: the constant pain, and then something with some punch for BT pain. I've tried them all, and oral morphine works best, IMHO.

I've had much better luck with Oxycodone as a BT med than a LA med. The OC just didn't hold me like it should. It was the worst performing, with the patch being in the middle.

Something you may want to talk to your Dr about for BT med is a product called "Actiq." It's fentanyl in a lollipop and works extremely well. I use it for my pain and it works in less than 5 minutes....Sometimes as quick as 2 or 3.

It's horrendously expensive, and it's only approved indication is cancer pain. Thus, your insurance should pay for it and it if so, it would be a regular co-pay. Many people have been using it for all sorts of pain and because the indication is only for Cancer, many insurance carriers have used it as an excuse to drop coverage (unless the person has cancer). IMHO, it's the best med on the market for BT pain. It's very quick acting and also moves through your body quickly....Much more so than normal pain meds. Thus, some people need a bit more than other meds. Fast in=fast out. We can discuss in more detail if you're interested.


Quote:
Originally Posted by ray of light View Post
Do you specifically work with a pain management specialist? My oncologist has been handling my meds up til now.
I'm not sure it matters, as long as you think you're getting good care and your Doc is compassionate. If not, then I'd jump in a heart beat. PM is serious business and I for one, don't have any patience for a Doc who isn't compassionate.

If you read these boards enough, you'll see that many people have had to go through many Docs to get one that works for them, so you are not alone in that regard if you decide to move. However, if your Oncologist is taking good care of you and is aggressive in his PM approach, then there is little reason to change.

Best of luck to you, and I'd be happy to answer any questions you may have.

Regards,

Ex

 
Old 03-02-2010, 09:23 AM   #4
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Re: New here - cancer patient w/questions on Fentanyl patch

Hi Boxerluver and Executor,

Thanks for the warm welcomes! I'm not sure how to do the quotes thing, but I will try to answer your questions.

It sounds as though the brand is the best, however it's a very steep co-pay for me so I was hoping to make one of the generics work. So perhaps I should try Watson next?

I have only been on the patch for a week. I'm not sure which type they had on me in the hospital, but I've been on the Mylan since last Friday. It is not covering my pain which is breaking through all the time. I am continuing my Oxycodone for breakthrough at this point. Executor - thanks for the info about oral morphine - I will keep that in mind. It doesn't look like the Actiq is covered on my plan unfortunately.

My oncologist is definitely compassionate and that's why I've stayed with him for six years. However, he is pretty far from my home and I've been considering changing to someone closer. I didn't know if it was better just to go with a pain specialist, although I'm sure that the oncs are pretty well familiar with pain.

This patch stuff is all new to me and I like to do my research so I really appreciate your input. I'm surprised there have been almost 900 views on this thread and only two replies. Oh well. I would love to hear from anyone else out there.

Wishing you all a pain-free day. Thanks again!

 
Old 03-02-2010, 12:29 PM   #5
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Executor HB UserExecutor HB UserExecutor HB UserExecutor HB UserExecutor HB UserExecutor HB User
Re: New here - cancer patient w/questions on Fentanyl patch

Quote:
Originally Posted by ray of light View Post
Thanks for the warm welcomes! I'm not sure how to do the quotes thing, but I will try to answer your questions.
You're very welcome.

To put something in quotation, hit "quote reply" in the lower right hand side. You'll see "QUOTE= persons's handle & etc" at the beginning, and then "/QUOTE" at the end. Instead of the ", you use [ & ]...I couldn't use the [] in my example because it would have put that material in quotes rather than paragraph form. Anything in between the two quote bars will be in quote. If you want to quote more than one thing, you'll need to copy and paste. You need one set for each quote.


Quote:
Originally Posted by ray of light View Post
It sounds as though the brand is the best, however it's a very steep co-pay for me so I was hoping to make one of the generics work. So perhaps I should try Watson next?
Many insurances will pay for brand if the Doc puts "DAW" or "brand only" on the script. You might inquire with your plan or ask your pharmacist. When the Doc writes this, he's ordering brand only due to it being medically superior for your particular situation.

Of the generics, I recommend Watson, then Sandoz.


Quote:
Originally Posted by ray of light View Post
I have only been on the patch for a week. I'm not sure which type they had on me in the hospital, but I've been on the Mylan since last Friday. It is not covering my pain which is breaking through all the time. I am continuing my Oxycodone for breakthrough at this point. Executor - thanks for the info about oral morphine - I will keep that in mind. It doesn't look like the Actiq is covered on my plan unfortunately.
I'll bet Actiq is covered since you have cancer. You might want to check. For almost all plans it's a "PA" drug or prior authorization required.


Quote:
Originally Posted by ray of light View Post
My oncologist is definitely compassionate and that's why I've stayed with him for six years. However, he is pretty far from my home and I've been considering changing to someone closer. I didn't know if it was better just to go with a pain specialist, although I'm sure that the oncs are pretty well familiar with pain.
If you decide to switch to a PM Doc one day, I would recommend your Oncologist refer you to someone...Maybe even have him call that Doc in advance. I say this because PM Docs are all over the board in terms of their theories & etc. Some are very aggressive in the prescribing while others are not. I recommend this thread that discusses the different types of PM Docs:

http://www.healthboards.com/boards/showthread.php?t=694491&highlight=Chroni c+pain+-Frustration

Post # 3 in the thread.

Take care,

Ex

 
Old 03-02-2010, 06:56 PM   #6
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Re: New here - cancer patient w/questions on Fentanyl patch

Hey Ray of Light,

My doc puts medically necessary on my scripts and my insurance pays and it is only a middle tier med. If you are going to go with generic then Sandoz, Watson and Actavis are options. I personally had a bad time with Actavis in that it did not cover my pain from the day I put it on.

I wouldn't know your co-pay, but Actiq should be covered with your cancer. I am on it with my cancer. I would think you would need something stronger for breakthrough than the oxy.

I go to a cancer center and I think I mentioned that they have their own PM department. I am blessed to have a great PM doc that was referred to me so I stayed with him. I would assume your onco would be familiar with the meds but I'm sure he can recommend someone good.

Take care
Melyssa

 
Old 03-03-2010, 08:48 AM   #7
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Re: New here - cancer patient w/questions on Fentanyl patch

You received great advice before me, but I just wanted to add that I am very sorry that you are suffering and I hope that you get relief soon...
Blessings..
Madison

 
Old 03-08-2010, 03:25 AM   #8
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Re: New here - cancer patient w/questions on Fentanyl patch

Welcome to the boards! I am fairly new here as well but have found a home among people here who have wonderful advice and whom I can go to for help and comfort as well. I am so sorry about diagnosis and I am sending all of my positive thoughts and prayers your way! I do not have alot of experience with pain management yet but I do know that you would most probably benefit from a pain management specialist. I cannot believe you dont have one by now! They will for sure be able to help you get your pain under control by finding what works for you I am sure! Just wanted to send a quick note to say hello and welcome and that you have come to a wonderful site here with people who really care!

 
Old 03-08-2010, 11:59 AM   #9
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Re: New here - cancer patient w/questions on Fentanyl patch

Hey Guys,

I haven't been here for a few days - just wanted to check in. Thank you all for your caring replies.

Executor: You seem to have alot of wisdom and I appreciate your input.

Boxerluver: I'm sorry that you had to deal with cancer too. The fright of having cancer plus the pain really puts one over the edge.

Madison and ajosli: Thanks for the warm words. At least someone out there cares.

So I saw my Onc on Friday. He said my dose on the patch was definitely too low so he upped me. I picked up the Watson generics and I must say these things are huge to put on a small body. Also, after a week and a half I am still experiencing the daily headaches, some depression, and overall a crappy feeling from this med. I've just made the decision that these are not ideal for me. I called my doc and he is going to put me back on Oxycontin at a higher dose and three times a day. I hope this will work! He also told me that the fracture won't heal on it's own as there is a tumor sitting on the break so I am looking at radiation. Nothing is easy. Thanks for listening everyone.

 
Old 03-08-2010, 08:14 PM   #10
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Re: New here - cancer patient w/questions on Fentanyl patch

Quote:
Originally Posted by ray of light View Post
Also, after a week and a half I am still experiencing the daily headaches, some depression, and overall a crappy feeling from this med. I've just made the decision that these are not ideal for me. I called my doc and he is going to put me back on Oxycontin at a higher dose and three times a day. I hope this will work!
Sounds like the fentanyl just doesn't agree with you. The "headache" is a tell tale sign. Not every med works for every person.

Have you and your Doc discussed at all the prospects of trying oral morphine as your LA med? Some people are allergic to it, and thus can't use it, but oral morphine is very different from IV morphine in a hospital....Hospital issues is where many people have had issues with it.

I've tried the patch and OC, and IMHO, oral morphine is the best LA med. It holds one the best between doses, warding off mini WDs and does a great job of dulling all the constant pain. It can be a bit sedating at night time, but in my case, that's a good think because it helps me sleep through the night....I had issues doing such with both of the other LA meds. A good night's sleep is imperative, IMHO.

Best of luck to you with your new OC dose....Keep us posted.

Regards,

Ex

 
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