April 18, 2017 at 12:52 am #94600marionsModerator
Fay….that makes sense. I am just thrilled to hear your Mom is having a good response to the long acting drug and use of the short acting for breakthrough.
Finally, she is having some relief.
MarionApril 17, 2017 at 4:41 am #94599
I forgot to mention we did have an admission recently (this was before we saw the pain specialist at the cancer agency this past week) and despite being there for 16 days, the pain team at the hospital was not able to fully treat her pain with an effective regimen. I think part of the issue during that admission was they were switching drugs around too frequently without allowing enough time for the drugs to achieve therapeutic concentrations before jumping to something else. And they scanned her multiple times but didn’t have anything new to share with us.
FayApril 17, 2017 at 4:37 am #94598
Dear CC Family,
I got glassy eyed just reading all of your postings. Thank you so much for caring, and taking the time to post your messages regarding my mom’s pain issues. I’m sorry for not responding in a more timely manner but I live in Seattle but was visiting my mom in Vancouver.
We did see a pain specialist this past week at the cancer agency who seemed keen on starting my mother on methadone – I was not keen on that seeing as how there are several other steps that we could try before going to methadone. Then the pain specialist suggested enrolling her in a lidocaine 10mg/kg SC (over 5 hours) trial and I am not keen on that either for the same reasons. Additionally, my concern is if she experienced side effects with the lidocaine trial that would delay further adjuvant therapy for the cancer itself. Maybe we will eventually get to having to resort to this, but we are not there yet.
NSAIDs are not an option since she is on full dose dalteparin for her bilateral PEs so bleeding risk is a concern if we added that. Her gabapentin is titrated to 300mg three times a day. And after going back and forth discussing various options with the pain provider, we decided to keep her on her long acting hydromorphone, but switch her short acting hydromorphone to oxycodone 10-20mg every 3-4 hours as needed. And I’m thrilled to say it seems to be working (at least for now), bringing her pain scale down to 0-3, for up to 6 hours, which is amazing for her. She even went out with her friends the other day which made me really happy since she is a social butterfly at baseline.
I will keep you all posted. The one thing I am realizing is that this is as you have mentioned before, trial and error. What may work for one person, may fail for the next.
I love my CC family.
FayApril 13, 2017 at 10:49 pm #94597
Here is an article that discusses visceral pain management, which you may find helpful.
-KarenApril 13, 2017 at 10:24 pm #94596April 13, 2017 at 12:23 am #94595marionsModerator
Fay.. Looking back at your posting you mentioned positive lymph node, positive margins, perineural invasion as well as tumor extending beyond the walls of the bile duct and into adjacent tissue. She also experiencing nausea and excruciating pain.
Given all that’s going on I would take my Mom to the hospital.
MarionApril 12, 2017 at 5:29 pm #94594gavinModerator
Sorry to hear this news about your mum and pain. Hard for me to give specific advice really but I have a few links that may be of use or interest to you and your mum. I hope that they help and that you can get some help with the pain for your mum.
I so hope that your mum can get some help with this.
GavinApril 12, 2017 at 11:25 am #94593lainyMember
Dear Fay, I am so sorry to read about all the pain your Mom is having. The only pain Med that worked for my husband was Morphine. Can you have her see a Pain Doctor? Once my husbands insurance turned down a PET and I found out that there were Imaging Companies here that would do a PET without Insurance for about 1500.00. Was ready to do that when the Insurance did come through after the ONC fought for us. Wishing your Mom the very best and hope they can settle this pain down!April 12, 2017 at 8:03 am #13201
Dear CC Family,
My mom is still in a lot of pain. She is on long acting and short acting hydromorphone, gabapentin three times a day as well as Tylenol as needed. Her pain is at the tumor site but radiates to the right side of her back. CTs so far have not shown very much however there is a ‘questionable area.’ The surgeon has ruled out any surgical issues. At times, on a daily basis, the pain attacks bring her to her knees. I would like a PET scan however getting a referral for that in Canada is painful. This is despite us willingly offering to pay for one but getting the referral is the rate limiting step. I asked for a pain consult and we have an appointment on the 13th thank God. My questions are :
1) if anyone has used a lidocaine patch as an adjunct and if you found it to be helpful?
2) Medical marijuana and what forms would be helpful? I doubt she will smoke it.
3) Muscle relaxants such as methocarbamol or cyclobenzaprine and if these are helpful?
4) Celiac nerve block and your experiences if you have had this done?
My overall impression is that her pain is more neuropathic in nature.
Any advice you may have is much appreciated.
Hugs from Seattle even though mom is across the boarder,
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