I am following SOC treatment here in Canada. I have come to the point where I am in serious pain due to the metastatic disease in and around my lower back. I have been on chemotherapy for 11 months and PSA has been climbing up to over a 130. I was hoping for a trial but it seems like it could be too late. At this point I need to manage the pain as I have no other treatment options. How do I navigate this situation with the health system in Canada. Is there any other guys out there that are in this position?
Thanks
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Islandboy2021
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Hi. I’m in BC also. I had quite a bit of bone pain and was prescribed hydromorphone by my family doctor. Worked well and still on it. It does cause Constapasion , so will have to manage that.
Unfortunately my brother has the same situation in Vancouver. His MO told him there is not any clinical trial available in Vancouver now. I don't understand it. The medical team have to do something . They should look for any clinical trial in other provinces in Canada and even in US. My brother has an appointment with his MO in 3 weeks I think. He wants to ask for any other option outside Vancouver.
I too live in Canada (British Columbia). There is a trial at the BC Cancer Agency in Vancouver investigating Actinium, an alpha radiopharmaceutical. The trial is called Trillium and is being sponsored by Bayer. I believe the trial will soon be recruiting. If you live elsewhere, type in “clinical trials.gov” and search under 1) metastatic prostate cancer, 2) currently recruiting and 3) your area and see what might be available. There is a private company in Burnaby that is offering Lutetium-177 a beta pharmaceutical that has been approved by Health Canada for men who have previously had chemotherapy. Good luck! 😉
I registered with BC Cancer in Vancouver at the beginning of the year so I could get on the waiting list for one of these trials. They have been waiting for me to complete the chemotherapy treatments. I do have an appointment with BC Cancer at the end of November. I am wondering if there is a chance that I will not be accepted if my disease is out of control. I can barely walk now as the tumour burden is affecting my lower spine. The only option I had was chemo even when my PSA kept rising.
My brother just finished his second line of chemo which was Cabazitaxel and it didn't work. Now they offer him radiotherapy for pain and they said they don't have any other plan for him right now.
You probably need an advocate. Mine was my medical oncologist in Abbotsford who knows many of the key doctors (like Dr. Kim Chi) at the BCCA. See if you can get some help from your medical oncologist In moving your name forward. Unfortunately, it is the squeaky wheel that is often the one that gets accepted into clinical trials. Be a pest! Good luck!😉
if you do start hydromorphone to manage your pain, as davebliz mentioned …. You will have to manage your constipation issues with that medication . I’ve been on hydromorphone for years now and I have a lot of experience of what works , very successfully, for me.
Also , in my pain management regimen, I use the less powerful ( but very effective ) and less issues with withdrawal .. norco , hydrocodone ( Vicodin) for my daily management and only use the 4/5X more powerful hydromorphone for break thru pain.
Either drug will likely require constipation management.
There are dozens of pain meds and management scenarios, this is what works for me. Always work thru cancer care doctors / pallitive care team , of course.
I’ve tried a number of laxitives and what I use at any particular time depends heavily on what my opioid intake is and the kind of opiate at the time. Currently I’m using senna plus stool softener / laxitive. I take 4 pills every morning after breakfast. When you take it regulates when you go. You work out your schedule to fit your own needs.
As long as I’m “ regular “ I leave things as mentioned, but if regularity slows or I stops then I take a dose of MOM ( milk of magnesia ) to clean things out and reset my regularity. Metamucil works the same for many / most people. You adjust your Senna intake up or down just to the point to achieve a comfortable regularity.
Regularity is VERY important. If you don’t go properly, you can build up / hold fecal material and left unattended this material WILL cause toxic bowel shock , make you horribly sick, and can send you to the E.R. . …. Speaking from personal experience. For me 4-5 days without a large volume BM is waiting too long and is risky.
If you are taking “ starter “ amounts of opiates, then you need less Senna , the larger the doses of opiates the greater amounts of Senna required. Start off with, say, two pills and work from there.
There are untold variations on this regimen and many laxitives. What you ultimately use will depend upon your preferences / comforts.
As with everything like this, “ always “ talk this over with your pcp or pallitive care physician / medical team.
Once initiated, this bowel maintenance will seem routine/ unnoticed. I have one of those 7/day pill holder boxes that I load up weekly, including a BP med and BG med for convenience. I set a reminder alarm on my smart phone for 10:30 a.m. to remind me to take them. This for production / bm by late evening.
Just a hint: many doctors are always looking for reasons to stop your opiates. Complaining “ much “ about your regularity or just mentioning bowel blockage might cause them to stop your opiates. It’s very dependant upon the individual doctor.
Just IMHO, zillions of variations and laxitives exist, this is what I’ve worked out with my medical team. Works excellent for me and is very comfortable.
I currently take 60 mg of morphine every day for chronic low back pain. It works great. No issues with constipation now, but I used to take Miralax PEG powder in water.
I don’t really have a team. I am tying to connect with the oncologist and ask these questions. I will have updated CT and bone scans done on the 21st October. I would assume that they could radiate the problem spots. I had a spot radiated on my ribs last year. Is there some areas that are too dangerous to radiate?
I think they are much better at targeting these days. I had my prostate radiated at the beginning of this and had no problems with my surrounding organs.
I have similar PC profile as Islandboy2021. Just starting pain management last couple months due to bone pain. I've found that I've had to migrate to taking pain meds prophylactically to get in front of the pain outset as I don't know when a new pain cycle will occur. I've been using Ibuprofen and Acetaminophen with 5mg of Oxycodone (immediate release) when severe pain erupts.
What's your experience in dealing with pain? Use drugs when pain erupts or in advance?
As some of you might know waiting until severe pain erupts results in a tough ride until the meds kick in. Not particularly interested in making Oxy my friend but on the other hand it does do the trick.
I guess I have been lucky as I am just starting to have serious pain other than last year I had a bad spot on my ribs that I had radiated. That rib pain was caused by lifting and twisting at work. The lower back and leg pain I have now was also caused by lifting and twisting at work. I am just getting some pain medication prescribed now.
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