kvolland
Forum Replies Created
-
Posts
-
Kris – I have no wonderful words of wisdom for you. I suggest listen to what the doc says then make the decision with all the facts in mind. I agree with Lainy though, make a list of the pros and cons and that will help you see the best decision for you.
Will keep you in my thoughts tomorrow.KrisV
I would definitely go with the power port especially in light of further contrast needed for CT scans. My husband had a power port and it was so great for chemo and the contrast. His port is out now (he had issues with sepsis NOT related to the port but they needed to take it out anyway) and now the CT scans are pretty rough. The veins get fragile as the chemo goes on so it gets harder to start and they blow out easier. Treatment two weeks ago they had to move his IV line in the middle of treatment due to pain. And then yesterday they started his line sent him for the CT scan and the vein blew when they did the contrast. Made a HUGE lump on his arm and was burning and sore all day. The IV they started for the infusion worked all day but it’s hard, hot and sore today….needing to keep hot packs on it all day. He was thinking about the port again but with only five doses we are going to hang in there.
KrisV
Mark was the same way after surgery for several months just the smell of coffee made him sick and this was the man who drank 2-3 pots a day prior. He’s back to drinking some now but only about 1/2 a pot and using creamer now. And when I told him about the coffee enemas he laughed.
KrisV
Tiff –
I had a pt years ago doing the alternative medicine for her breast cancer and one of the treatments was coffee enemas. I was flabbergasted at that. I actually called the practitioner to see if maybe she misunderstood what he said. He gave me all kinds of information about how it worked clearing toxins from the system but could give me no scientific studies. I felt so sorry for her because when she finally decided that it might not be the best route it was too late. I know that there are complementary medicine that may go with traditional Western medicine…massage, acupuncture, biofeedback, etc and that diet plays a big role in our lives…..but coffee enemas. I am with Lainy…..I can’t drink it either and as far as anything else….KrisV
Also I would like to put my two cents in….from Portland to Seattle is not that far and we have had wonderful care at Virginia Mason in Seattle. Great surgeon there and great oncologist. We could not have asked for better care. They have been on top of everything and so far everything has gone well.
And I guess I am with everyone else, I have not heard great things about CTCA and since CC is such a rare cancer I would be very reluctant to go somewhere where they hadn’t seen a lot of them.
KrisV
Patricia –
So glad you made your choice. It was your decision and we know you made the right one for you. Sounds like you and my husband will be on opposite schedules. His 7th does is tomorrow. We always bring plenty to do. Tablet with several books on it. Snacks, water and juice along with headphones and some tunes. I also make sure that we have a “go-home bucket” just in case we have issues one the way home (it’s a 2-3 hour drive for us). I have a basin in case he get sick, a package of babywipes (to clean up if needed), a couple extra waters, a bottle of Ensure and any as needed meds (anti-nausea, pain meds, etc) so that the trip home is smoother. I also bring him an extra blanket and pillow for on the way home since he is almost always cold and tired.
Keep us posted on how you do and I will be thinking about you on the 14th.KrisV
Deedlebug –
So sorry that things have gone the way they have. I guess the question I have has to do with Palliative care versus Hospice. I know we have both programs at work and the Hospice team is more aggressive with end of life care versus palliative care. Should be the same thing you would think but the rules are different for one versus the other and hospice is often more responsive with medications and other treatment.
The problems with any disease affecting the liver is that it is the mechanism to clear waste products out of your body and it metabolizes all medications to get them out of the body. Sometimes with oral pain medications or even the stuff like Haldol is the body is not clearing them right and so they build up and contribute to the confusion. You may ask them for another route for medications such as a pain patch that gets more medications into the blood without as much build up. Still goes through the liver but after it does take affect.
The Haldol may not be the only drug you need too. If you don’t feel like the Haldol is working even with using the Ativan then keep talking to your team. There is a lot they can do.
The other thing you might want to explore is if you have a local Hospice House so that if you are not able to keep him at home, you have a place to take him which will keep both of you safe.
My thoughts and prayers are with you. Any questions just ask.KrisV
Patti –
I am with Lainy on this one. I have been a nurse for twenty years and have never seen anyone cured by some of these alternative treatments. I would offer that if it sounds to good to be true then it probably. I know we get stuff from family and friends that this or that can cure his cancer or his diabetes. For awhile it was aloe vera juice then cinnamon. The other concern that I have with some of these is that they may interfere with your chemo or other medications that you take as the interactions of many herbal medicines or alternative medicines have not been studied.
That being said however, remember it is your life and your disease and if you want to try something then it’s your choice. I would just talk about it with your doctor first so it doesn’t interfere with anything.
And I know I opened a can of worms here again.
KrisVWow Lisa you have been through the ringer lately. Sorry that it has been that way but sounds like things are going better now. Keep us posted and will keep you in out thoughts.
Hopefully your insurance kicks it in gear. I know we never had a hiccup with ours but my employer also owns my insurance plan so they’re a little better at it, I guess. Although we did renew insurance for next year and they wanted additional information this year to make sure my spouse really was my spouse….guess the almost half a million they have spent on his makes them want to see if he can be bumped off my insurance. There was nothing they could do.
Good luck and hopefully things stay positive.KrisV
Tiff-
Sending good thoughts your away about the scans. Hopefully the labs will point in the right direction for the fatigue.KrisV
I can’t really speak for myself but as for my husband he does overlap some of the risk factors that you have.
He has been chronically about 40# overweight the last few years.
He is a type 2 diabetic taking insulin and meds for it.
Not super active although is job does keep him moving but not enough to count as exercise.
Never a smoker and never really had any GI problems (that is me). Alcohol intake was moderate prior to the surgery and none now.
He does not really have a stresfull job or a high stress life…he’s pretty easy going mostly.
The docs relate his cancer to radiation he had as a young teen for his Hodgkin’s lymphoma. His radiation field overlaps the area where is tumor was removed so that’s what they are thining it is.Sometimes I think it’s just really BAD luck. I mean this is his second cancer in his life and then we also dealth with my 20 year old having Thyroid cancer at the same time my spouse had his diagnosis and our 30 year had NO risk factors for that.
KrisV
Lainy – It wasn’t a big bubble to burst though….I only eat it once in awhile since I am just not a fish person….seafood much more but still only in moderate amounts. The mercury is pretty scary. We used to go fishing in Eastern Oregon with my mom and step dad but it was catch and release only partially because we won’t eat it but also the mercury levels in the reservoirs over there are off the charts because of the gold mining.
I know there are certain foods I stay away form because it bothers my IBS and since my gallbladder came out a few years ago anything greasy gives me grief.
It really reminds me a book I read in nursing school years ago and I can never keep a copy of it because I loan it out and never get it back. It’s by a nurse and it’s called “The Sorcerer’s Apprentice and Other Medical Miracles” by Sally Tisdale. She worked a dialysis unit for years and went through dietary limitations that kidney failure patients go through and it gets to the point where they can eat or drink nothing….so the menus might be a good idea.That was a good one Gavin. One step closer to finding something….a cure, a test to diagnose early or even just a reason why people with no risk factors are getting this. And why in heaven’s name it’s getting more prevalent.
It’s as I always say, the next GREAT breakthrough in healthcare is just around the corner.
And I have to say I am glad the only fish I like to eat is tuna from the can.KrisV
Sheedy – So sorry for your loss. And you are right this is a horrible disease. You are in my thoughts and prayers.
KrisV
Crissie –
I agree 100% with Lainy. I would want to talk to the doctors before any procedure was scheduled, even to just know risks and possible side effects if nothing else. And why they decided to do it now if it’s been there all along. During part of the workup for my husband’s surgery they found a “spot” on his right kidney. The urologist came and spent a lot of time talking to us about what he thought it was and the different routes we could take. The decision was really taken from us when his surgery went to 14 hours long and they couldn’t even go look at it. Now we just follow it wit his regular CT scans for the CC. I would ask a lot of questions. I guess the biggest on we asked was given the CC diagnosis would treating the kidney change any outcomes….we were told probably not. So we just watch.
If you are not comfortable with you doc or what they are telling you shop around for another one.KrisV
