dukenukem
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I’m taking a diuretic (100 mg spironolactone / aldactone) every other day (prescription is daily) and it seems to be helping. Onc is concerned it may increase potassium when combined with my high blood pressure med lisinopril. Blood work yesterday showed no problems with potassium – will keep it every other day and check again in two weeks. Pregnant look is gone, but still a little tummy fat. Lost about 4 pounds since i started taking it.
Duke
Do you have any company or government funded disability payments?
I was on gem only after months of carbo/gem. It was two weeks on and one week off.
Duke
My leftover liver biopsy material from my initial diagnosis was used by the Mayo Clinic for their studies. I had to have a lymph node removed. But, since I had already met my max deductible for the year, there was no cost to me.
Duke
I found it more interesting in what she did not cover – like, what to do with ICCA after gem/cis and those overall survival rates.
Duke
Push as hard as you can. There are numerous examples here of going to a second, third, fourth onc before getting a good answer. Blunt fact: your mother’s life is at stake here. What would she do for you?
I’ve run into the “able and willing” issue here. Some oncs stop at conventional treatment. Others, generally those with greater experience, have the knowledge when to push for non-conventional treatments and have the status with insurance companies to get it approved for payment.
I was stamped “palliative care” right from the start. Only when I pushed did I get genomic testing. That’s what is leading to a clinical trial when my FOLFOX6 no longer works.
Duke
I’ve had four infusions with a pump now. I was concerned at first about sleeping, but it turned out to be a non-issue. I can sleep on either side or my back without problems. Just have to be aware when you roll to move the bag with the pump. Biggest issue I had was with a curious kitten who was drawn to the port and wanted to paw and nibble on it and the tubing.
If you have troubles sleeping, use a recliner or a comfortable upright chair, probably getting short naps throughout the day. You will get used to it and then getting back to a bed will be a treat.
After the treatment the nurse gave me the instructions on what to do if there were leaks. Make sure the pump is put in a zip-lock bag before going into the carry bag.
Another very important thing: If there are problems, get to the oncology department if possible. Most ERs have no experience with a pump and port and if they start messing with it, you have a significant chance of getting an infection. If there is a leak of some kind, you can always stop the infusion. For off-hours, you will get an emergency number for the pump company who can help you over the phone. This was the scariest part, but should not be an issue. Make sure you pay attention to the nurse’s instructions on this.
Interesting that the treatment will be over the weekend. They will start the infusion on Saturday and remove the pump on Monday?
Duke
I had a little nausea a few days after the first tow rounds, then nothing later.
For me, the steroids wired me. I typically take a nap in the afternoon then I’m up all night – like until 6 or 7 am. ( I spend a lot of time catching up on posts here.)
(I’m the opposite of Julie.)
You definitely want to take the anit-nausea med before there is a problem. If I waited until I was nauseous I could not keep it down.
Your mom may develop a numbness in her toes (neuropathy). It’s not painful, but you should be aware it might happen. Amount depends on the person.
I always bring snacks. Aimee even goes out to the nearby ChicFila to get me chicken strips and fries while I’m in the chair.
You’ve got to drink lots of water to flush the chemo out. Try to get into the habit of getting a drink every time you pass a faucet. Room temperature flat ginger ale is also good.
When you get home, it might be easier to “graze” frequently on small amounts rather than taking large meals. You’ll figure that out.
Ditto on having something to do while in the chair. I read or go on-line with a tablet, or just rest with my eyes closed.
When I was on carbo/gem and later gem only, they used my veins. When I went to FOLFOX6 I had to have a port. One important thing about a port is the skill of the nurse preparing the infusion. Some have the “touch”, others don’t. When you find one who is good, insist on having that person in the future. It makes all the difference in the world.
Light-hearted attempt at humor.
Patient: “Doctor, after the chemo will I be able to play the piano?”
Onc: “Other than a little tingling in your fingers, you should be able to play just fine. Why do you ask?”
Patient: “I can’t play now but I was hoping that would change.”
ba-dump-bump chingDuke
Let’s see what my nephew answers before we jump to conclusions. But if he does, Mama Lainy is within her rights to demand a new picture.
Duke
Interesting links. My onc said she would just withdraw fluid with a needle. That does not seem to be the conventional method.
She prescribed a water pill but the onc at the Cleveland Clinic suggested I not take it unless things get worse.
Duke
No sure what FoundationOne charges over there, but they charged me $5800.00 which was paid by insurance.
Duke
I agree with what Marion said about reading the scan. I just had a second onc and radiologist review my CT scan from last Friday and they basically came up with a complete reversal of the prior scan. No big deal until you realize it completely changes my treatment options.
True story: My wife and had just come home from a sonogram of our first child and showed he Polaroid to my father who was staying with us. We didn’t tell him what i was. He looked at it and said, “What is it? Looks like a dog in a field.”
Duke
