kvolland
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That’s a really good one. Summarizes everything very well. Wish I had seen something like this in the very beginning.
KrisV
Ah, Betsy I am so sorry that your daughter lost her battle with this awful disease. It was great that you were able to be there for her through all of these last three years and to be with her in the very end.
Take heart that she will always be with you in spirit and rely on those good memories through the years to get through these times.
You and your family are in my thoughts and prayers.KrisV
My husband’s tumor was into the edge of the portal vein but had not wrapped around it. They were able to resect a small potion of the vein out.
I wondered but I never asked our surgeon because it wasn’t an issue but I don’t understand why they can’t resect on a regular basis….with the vein or the artery. They put teflon grafts in all the time and they can do bypasses with harvested veins…..I think of aortic aneurysms and the telfon then use to repair that so I don’t see why they can’t just cut out the bad section and replace it.
I know on my son’t thyroid surgery they took out 5 cm of his internal jugular vein because a lymph node had grown into it and they just stitched the two pieces together.I guess I should have asked. If anyone knows the answer, let me know. I would love to know.
KrisV
Sister –
In our case they do blood work before every dose. So far all the blood work has been great. We are doing a scan next Friday just before round 6 of chemo. I know that everyone’s protocol is a little different so I would ask.As for the nausea we haven’t had a lot of that but I can give you some hints that might help. First off – what meds is your sister on? We have Zofran (ondansetron) and Compazine (Prochlorperazine) along with Dexamethasone.
He takes the Zofran and Dex twice a day for two days after chemo then the Compazine every 6 hours. He can take the Zofran up to once more if needed. If she’s not already doing something like this then I would talk to the ONC about getting going on something similar. If she’s already doing this then it going to be figuring out when she CAN eat and getting as many calories in as you can.Try waiting 30-60 minutes after taking anti-nausea medications before trying to eat. This gives them a chance to work. Also take them as needed at the very first sign of nausea before she throws up.
Foods that are high carbohydrate such as pastas, bread and potatoes are easily digestible so that empty out of the stomach faster. Red meats often have a heavy metallic taste for people with chemo….if she has that I would avoid them. Chicken seems to go down better. Stay away from heavy spices as bland works better. It sometimes is a matter of trial and error. The biggest hint I can give you though is NOT to eat a favorite food if there is any nausea – it won’t be a favorite food if you throw it up.Something like protein shakes in small sips may help too. We used frozen fruit, a couple of scoops of ice cream, vanilla yogurt, protein powder and then enough milk or Ensure to make it a milkshake. You can make them any size and keep smaller sizes in the freezer. GNC (our local health food store) has a bunch of different flavors of protein powder. We used unflavored that I hid in almost anything from yogurt to cottage cheese even mashed potatoes and soups then we used Cookies and Cream for the shakes.
Hope this helps!
KrisV
Surfer1 –
Belated welcome to the group. Glad to hear that it was caught so early. We looked back through my husband’s labs and his liver function had been slightly elevated for about 5 years and he had an ultrasound around three years ago and no one saw the mass in his bile ducts. So I say you are VERY lucky to have such an on the ball doctor…..not saying that ours wasn’t on the ball because I agreed that they were elevated because of a couple of his diabetic meds. It wasn’t until the jaundice that we really knew anything was wrong.
It’s great you are hooked up with a good team and as everyone says, get multiple opinions especially with this type of cancer.
Here’s hoping to a successful resection. My husband’s was extrahepatic – Klatskin’s tumor and even though it was into the vein they were still able to do a resection and took about 60% of his liver…..and Yippee, it grows back and according to the surgeon only takes about 6 weeks.Look forward to hearing how things go!
KrisV
He’s been on it every other week since Aug 9th. We had to push one dose back since he was in the hospital the week before for a blood infection. And they told us 6 month total of chemo so we are looking at stopping sometime in February. Next Friday after the blood draws we get our mid-way point CT scan finally….although I don’t think there is anything to see….I hope not. The surgeon was pretty sure they got it all with surgery.
I wish we still had the port in but they pulled the port after the last blood infection because they thought that might be the cause….still not sure but no more infections. He’s got so many scars on his belly and chest now….looks a road map to nowhere.
KrisV
Sister –
My husband is 5 rounds into GEMOX treatment and doing very well with it. I know our oncologist said they were getting better than average results with it which I took as a good sign (I didn’t really ask what average was since I didn’t want to know). The cold intolerance is really his worse side effect. Of course we are going into winter so he’s having to dress warmer, wear gloves and a hat. He also cannot get into the fridge or freezer so I do that. The other thing is drinking cold fluids – everything has to be room temp or better and don’t drink it too fast. He has not had but one bout of nausea because he decided he didn’t need his nausea meds since he wasn’t having any (typical man, I think)
The only other issue he has with it is terrible night sweats for about 3-4 days after dosing. We just make layers on his side of the bed with towels and sheets so when he sweats he can just take the damp stuff off and move on to something dry. I did put a waterproof pad under his side of mattress cover to keep the bed itself from getting damp.
He says so far its’ livable.Kris I am so sorry that you weren’t able to tolerate it especially the nausea. Goes to show how different all of our bodies really are.
KrisV
Sandy-
My husband runs a temp quite a bit with his Gem/Ox especially in the evenings usually right around 99.7 and a little lower, nothing over a hundred. He has had issues with blood infections but always they spike higher. I keep after him about his hydration making sure that he drinks plenty of fluids….water, juice, Gatorade (he does one a day since his sodium is always low) and any thing else I can get in him.
As for appetite, making sure every calorie counts. We did a protein shake that was frozen fruit, couple of scoops of ice cream, yogurt, protein powder and enough milk to make it a shake. He would have one of those a night. My son was healing from surgery and we even made jello from Ensure Clear or a protein drink called IsoSource that I found at Rite-Aid. I substituted the protein drink for the cold water. He really liked that.
Also you may talk to MD about something to stimulate the appetite. There are a couple of anti-depressants that can do that….one I see a lot of is called Remeron (mirtazapine) and it’s given at night to help with sleep some and then it stimulates the appetite. There is also Megace which is an appetite stimulant that is designed for cancer patients. I have seen it work pretty good for some pt. Of course with meds there are always possible side effects so talk to the doctor and see if something might work.Good Luck!
KrisV
I see that a lot…the overfill of bags with my husband’s chemo and I guess we are pretty lucky that we aren’t there any longer than we are. They draw labs, doc comes in after labs are back and writes the orders then the nurse comes back with oral meds (Zofran and Dexamethasone and Lorazepam if needed) and about a half an hour later then start chemo. They do a dextrose flush just before the chemo, in between doses and then flush when they are done. I guess we could be there a lot longer if they were doing more bags of stuff.
So far he’s always been well hydrated and numbers have been good….the white count is always a little high which makes the doc scratch his head and the doc was amazed that he hadn’t lost any hair yet (of course there’s not that much to lose).
Just ask lots of questions. The only thing I can think of is that the doc thought there might be issues if infused too fast the nurses found there weren’t any issues with it so it didn’t matter if it was infused faster.
KrisV
Tiffany –
Great article and such positive news. I had not heard the whole story before and it gave me goose bumps too. Love to hear it.KrisV
Danna –
I agree with Jason. A lot of it has to do with who is doing the infusion. My husband does Gem/Oxaliplatin and it can be 4 hours to 6 hours and it just depends on who does the infusion. The first two infusions were done through a port and were fairly fast but now that they have pulled the port and we do it through a peripheral IV, they slowed it down. I know that they Gem they try to do over 90 minutes and then the Oxaliplatin is over 2 hours. The math says 3.5 hours but it can be a lot longer.
We have some nurses who are just slow in getting to the pump with when it alarms and others that are fast.
I would say it shouldn’t matter as long as there are no symptoms but always follow your gut instinct, if you think it’s too fast, say something.KrisV
Sandie – So sorry to hear you are back on this roller coaster. My husband is about halfway through his treatment with Gem/Oxaliplatin. The only side effects he is really having are from the Ox not them Gem. He’s having really bad cold intolerance. The last couple of weeks he has run a low grade temp but feeling fine otherwise.
Good luck with your treatment and keep us posted.
KrisV
Absolutely wonderful news! I will keep everything crossed for you. Keep up posted. And your story will give hope to many young women who are out there.
KrisV
Very good, Jules. Even though we are not to the point where my husband is yet terminal (although we all are in a way), we are looking at things we need to tackle and want to try. They are simple to the extravagant but we are looking. We don’t call it a bucket list but the “Give it a Try List” and it’s stuff both of us would like to do whether together or with one watching the other….I would like to parachute and he says no way but he will watch. He wants to river raft some big rapids and I say hell no.
I am also looking at life differently all around. Does it matter if the house is spotless or the laundry all neatly put away? Does it matter if dinner is right on time? I ask myself a lot will this really matter even tomorrow. If it doesn’t then I let it go.KrisV
Betsy –
I am so sorry that you have had to go through all this. You are in the toughest position ever as a parent and a caregiver. I would suggest that you doubly make sure that you take care of yourself too. If you do not have help then talk to the Hospice Social Worked to see if there is some respite care available for you and for your son-in-law.
And as I said before just keep telling your concerns to your hospice nurses. They are there for you and to help deal with all those symptoms including the Nausea and vomiting. I know sometimes the lactulose can do that since it so thick and sweet. It will still work if you put it in something else like some juice or something like that and it might help better. Or just make sure she even has a few crackers in her stomach before taking it.Hang in there and keep us posted.
KrisV
