LOL!
I just mistyped *pain pump* as *pain pimp*.....that made me giggle.
Anyways....
...after some discussions with my husband, my parents, and some friends, I came up with a list of about 20 or so questions for my pain dr, so that we could all better understand this pain pump and how it would affect me. I thought it might help to have this information here, so that others who might be pondering the same scenario would have a better understanding of what this device entails.
As always, please don't take my information as the end-all-be-all. This is not meant to replace conversations with your doctor regarding your specific condition or situation. All of this information is specific to my situation, meaning that answers to the same questions might get a different answer from a different doctor or in a different situation.
There, I think I covered everything. So, here goes.
One of the questions I had was regarding the medications available for use in the pump. Dilaudid is the initial drug of choice for my situation, as I am already currently taking it orally, and it's working. There are other medications that can be used if the dilaudid doesn't work, such as morphine and another drug that I can't remember the name of. Good news is that, because the amount of medications that I would start out with is SO low (1/100th of my current dose), there is room to increase the amount of pain medication. There is also a way for me to administer a bolus shot of medication (basically an addition shot of pain meds through the pain pump via a beeper-sized remote control I would carry with me at all times). I can also use oral breakthrough medications if the pain level gets high enough. The goal, however, would be to wean me off of the oral medications.
I asked if medical marijuana was an option to help control my pain, and it is. I am going to start that conversation with my doctors, as both Levi and I are very interested in pursuing this as an option. I don't know how this will all play out, but I will keep you updated.
Once I am fully healed, there will be no limitations on my activity. However, during the 4-6 week healing process, my activities will be severely limited. I won't be able to lift anything, including laundry or groceries (isn't that a shame?), do any activity that causes me to twist (i.e., vacuuming), or sleep on my stomach (which is fine - I'm a side sleeper anyways).
The unit and tubing *can* become dislodged, however, in all his years of doing this, he hasn't seen one. There are two fail-safes for each connection to ensure this doesn't happen. The procedure to reconnect anything would be an outpatient procedure.
I/we were concerned with how the medications are processed in the body, and whether there would be any potential damage to the liver and/or kidneys. Because the doses are so small (again, it could be 1/100th of what I'm currently taking), the risk is fairly low. However, my team is constantly checking me for that type of stuff, so any issues would be found and addressed before they became a problem.
I was concerned about whether this pump would restrict what chemotherapy options I have available to me. This came up because my doctor specifically mentioned that Avastin wouldn't be an option until I was fully healed, because that chemotherapy inhibits the creation of blood vessels. I asked if there were any other conflicts, and there aren't. Since I'm allergic to Avastin, this is a moot point for me.
In my research, there are many references to a "trial period" with this device, wherein I would potentially stay in the hospital overnight and a temporary cath line would be inserted into my spine. Medication would be delivered to the same area that and basically tested to see if that would be effective. My doctor is willing to do this, on an outpatient basis, but his concern is that, if he gives me a certain low-ish dose to start with during this trial period, and (because it's too low) it's not effective, I could be unconvinced that this would work when, in full practice, it would work just fine with a slightly higher dose. Made perfect sense to me.
This unit would not, in any way, hinder my ability to get MRIs, CT scans, etc.
In a traditional chemo pump, the catheter that extends into your neck can sometimes get a scab-like covering over the end of the cath, making it difficult (if not impossible) to delivery meds/chemo or to get blood return. I asked if this could happen with the pain pump. My dr said that it *can* happen, but that it takes a few years (4, he said) for this to happen, and he's never seen it occur.
I asked if he was the only dr onsite that can access the pain pump, refill my pain meds, etc. He is not - his PA (whom I absolutely ADORE) is also trained to do this, although he would have to be involved in any changes to dosing or meds.
One of the concerns that I had was whether this procedure requires a flushout period for chemo or my current pain meds. The good news is that it does not. Whew.
The last questions was whether the body can reject this pain pump as a foreign entity and cause issues. It can, but again, in all his experience, he has never seen it happen.
So, with that, I have a much better understanding of what this pain pump is, how it works, and how it will affect me. I feel much more confident that, once I reach a point where this is an option, I can move ahead with this procedure with no questions.
The good news is that, with this slight increase in my meds (as of last Friday) I am feeling much better. My pain is much more controlled, and I am feeling less overall pain, which means I am also taking less of my breakthrough medications. This, my friends, is a good thing.
For now, I am going to stay the course on my current medications, pursue obtaining my medical marijuana card (it's legal here in AZ), and consider all of my options moving forward.
Let me know if you thought of any questions that I should ask my doctors about this pain pump. I'm very interested to hear what your thoughts are.
Anyways....
...after some discussions with my husband, my parents, and some friends, I came up with a list of about 20 or so questions for my pain dr, so that we could all better understand this pain pump and how it would affect me. I thought it might help to have this information here, so that others who might be pondering the same scenario would have a better understanding of what this device entails.
As always, please don't take my information as the end-all-be-all. This is not meant to replace conversations with your doctor regarding your specific condition or situation. All of this information is specific to my situation, meaning that answers to the same questions might get a different answer from a different doctor or in a different situation.
There, I think I covered everything. So, here goes.
One of the questions I had was regarding the medications available for use in the pump. Dilaudid is the initial drug of choice for my situation, as I am already currently taking it orally, and it's working. There are other medications that can be used if the dilaudid doesn't work, such as morphine and another drug that I can't remember the name of. Good news is that, because the amount of medications that I would start out with is SO low (1/100th of my current dose), there is room to increase the amount of pain medication. There is also a way for me to administer a bolus shot of medication (basically an addition shot of pain meds through the pain pump via a beeper-sized remote control I would carry with me at all times). I can also use oral breakthrough medications if the pain level gets high enough. The goal, however, would be to wean me off of the oral medications.
I asked if medical marijuana was an option to help control my pain, and it is. I am going to start that conversation with my doctors, as both Levi and I are very interested in pursuing this as an option. I don't know how this will all play out, but I will keep you updated.
Once I am fully healed, there will be no limitations on my activity. However, during the 4-6 week healing process, my activities will be severely limited. I won't be able to lift anything, including laundry or groceries (isn't that a shame?), do any activity that causes me to twist (i.e., vacuuming), or sleep on my stomach (which is fine - I'm a side sleeper anyways).
The unit and tubing *can* become dislodged, however, in all his years of doing this, he hasn't seen one. There are two fail-safes for each connection to ensure this doesn't happen. The procedure to reconnect anything would be an outpatient procedure.
I/we were concerned with how the medications are processed in the body, and whether there would be any potential damage to the liver and/or kidneys. Because the doses are so small (again, it could be 1/100th of what I'm currently taking), the risk is fairly low. However, my team is constantly checking me for that type of stuff, so any issues would be found and addressed before they became a problem.
I was concerned about whether this pump would restrict what chemotherapy options I have available to me. This came up because my doctor specifically mentioned that Avastin wouldn't be an option until I was fully healed, because that chemotherapy inhibits the creation of blood vessels. I asked if there were any other conflicts, and there aren't. Since I'm allergic to Avastin, this is a moot point for me.
In my research, there are many references to a "trial period" with this device, wherein I would potentially stay in the hospital overnight and a temporary cath line would be inserted into my spine. Medication would be delivered to the same area that and basically tested to see if that would be effective. My doctor is willing to do this, on an outpatient basis, but his concern is that, if he gives me a certain low-ish dose to start with during this trial period, and (because it's too low) it's not effective, I could be unconvinced that this would work when, in full practice, it would work just fine with a slightly higher dose. Made perfect sense to me.
This unit would not, in any way, hinder my ability to get MRIs, CT scans, etc.
In a traditional chemo pump, the catheter that extends into your neck can sometimes get a scab-like covering over the end of the cath, making it difficult (if not impossible) to delivery meds/chemo or to get blood return. I asked if this could happen with the pain pump. My dr said that it *can* happen, but that it takes a few years (4, he said) for this to happen, and he's never seen it occur.
I asked if he was the only dr onsite that can access the pain pump, refill my pain meds, etc. He is not - his PA (whom I absolutely ADORE) is also trained to do this, although he would have to be involved in any changes to dosing or meds.
One of the concerns that I had was whether this procedure requires a flushout period for chemo or my current pain meds. The good news is that it does not. Whew.
The last questions was whether the body can reject this pain pump as a foreign entity and cause issues. It can, but again, in all his experience, he has never seen it happen.
So, with that, I have a much better understanding of what this pain pump is, how it works, and how it will affect me. I feel much more confident that, once I reach a point where this is an option, I can move ahead with this procedure with no questions.
The good news is that, with this slight increase in my meds (as of last Friday) I am feeling much better. My pain is much more controlled, and I am feeling less overall pain, which means I am also taking less of my breakthrough medications. This, my friends, is a good thing.
For now, I am going to stay the course on my current medications, pursue obtaining my medical marijuana card (it's legal here in AZ), and consider all of my options moving forward.
Let me know if you thought of any questions that I should ask my doctors about this pain pump. I'm very interested to hear what your thoughts are.
Comments:
Carol
Pack Urban said...
I
hope you're feeling better about your choices.
If you decide to go with the medical marijuana, how would that be taken? Does it have to be smoked/inhaled or could you sprinkle on top of food?
It's something I've thought about, if needed.
If you decide to go with the medical marijuana, how would that be taken? Does it have to be smoked/inhaled or could you sprinkle on top of food?
It's something I've thought about, if needed.
July
18, 2014 at 11:45 AM
Do
the med marijuana, it will make your pain meds work better. You can get a
vaporizer to smoke it with.
July
24, 2014 at 5:10 PM
Try
magnesium oil spray ans renewing skin serum from www.bonnybath.com for the
erbitux side effects. Also stay out of the sun and away from heat.
September
1, 2014 at 6:49 AM
I
was diagnosed with stage 4 colon cancer Nov 2012. Since May 2014 I have been
receiving Erbitux every other Saturday. The magnesium spray got my amino acids
to a normal reading and the renewing akin serum reaaly helps with the dry akin
and rash. I wish you all the best!
September
1, 2014 at 7:48 AM
just
wanted to say thinking of you
September
8, 2014 at 5:39 PM
