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La fundación de colangiocarcinoma (CCF) ahora ofrece servicios de traducción en Español. Por favor publique sus preguntas en Español y un intérprete le va responder.
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Pretty much every treatment is different. My husband didn't have a lot of nausea but he did his nausea meds regularly after chemo. As a nurse this is a trick we did with our chemo pts. I made sure he took his Zofran (ondansetron) three times daily for two days and then he also had dexamethasone he took twice daily for two days. Finally he had prochlorperazine he took as needed. His biggest issue was tiredness.
This is a disease of ups and downs unfortunately. I know of when my husband was battling it seemed like we took two steps back for everyone forward. In fact I know I called it a roller coaster at one point too.
My husband did GemOx too and while he didn't have much neuropathy the cold sensitivity got to him. It seemed to stick with him even after he stopped.
I can say that makes sure he's not over doing it on the days he feels good. Some people have a tendency to push to hard on good days because they feel good then pay for it. As for the nausea make sure he is taking anti-nausea meds around the clock. If the doc wrote three times a day as needed then take three times a day instead of waiting for nausea to hit to take. Like pain meds anti-nausea meds work better if taken before the nausea hits.
Hugs and hopefully the bumps flatten out.
I wish I could take the private jet everywhere. I love flying but hate getting crammed all together with people. They told me how expensive it is to fly it and I will never be able to afford it in this lifetime.
Actually Marion I "borrowed" it from someone else. Dr. Rocha actually came down and had fun with the karaoke. He was amazed at what a lively group we were. I told it him it was like diabetic camp for kids.....no one was different. Everyone could just be who they were not "that person with cancer." It was great to meet you too.
Thanks everyone. It is good to be back.
Hi All -
I have decided I am in a place where I can rejoin you all. I have missed all of you but had decided it was time to back away from some stuff.....unfortunately you were all part of it. I now have decided I am better prepared to be a good advice giver.
Life has as always taken some bizarre turns. I quit my job of 16 years as a home health and hospice nurse a month ago and have taken a new job in a new area for me.....it's completely different but will be fun. I am now working for a local cataract and laser institute as a prepost-op nurse. It is a great company to work for and I am so lucky to get the job. I will be the travel nurse which means I will get to go to all 17 of the sites we have....and the fun part is some of the sites are quite a ways away...I will be flying to these sites....in a private just no less, no commercial flying for me.
I have worked on my house getting many of the things done that needed....new windows, new siding, new doors inside and outside, new paint outside and some inside, new gutters and new furniture....among other things. I also traded in my cute little "race car" as my grandson said for an SUV which I felt was better than a car since I cannot have my husband drive any more. My daughter and son-in-law (plus my grandson) will be moving to Louisiana in July and I will get another grandchild in September...woohoo!
I guess that a synopsis of where I am. I did make it to Salt Lake this year for the CC conference and got to meet so many people in person finally which was awesome. The best thing ever was I got to have a beer with Mark's surgeon as he was there two of the three days. For some reason that almost seemed like some closure for me.
Love you all and look forward to "seeing" you all.
I don't want to hear that Lainy....it's been raining for two days straight. But the frogs are out so I think Spring is close, I hope.
Wow, wow is all I can say. I bet Lainy has some ocean front property in Arizona she would like to sell.
Thank you Lainy,
I have been up to no good mostly....haha. Actually just trying to get my life back in order after Mark. It's been a rough few months but I am alive and well. New job and new goals in life and now it's time to get back to what I really love doing.
Happy Valentine's memories to you too!
So sorry, sounds like you have gone through a lot. And sorry about the transplant but I think it is so great that your wife was such a great match. I wonder what the odds are of that.
I can understand about the drain too. They pulled my husband drain as we were walking out the door at discharge. By the time we got home it had drained through everything absorbing in the car. I ended up having to place a urostomy bag (similar to a colostomy bag) and he wore that for a almost two weeks afterwards....at one point it was draining a liter a day. I called the surgeon and he said Oops! We must have pulled the drain too soon. Must have been plugged instead of done. Haha was all I could think.
The other thing I can add is lots of protein.....helps with healing but also with keeping the clear part of the blood in the blood stream.
Wow Lainey, sounds like I missed a lot in my absence. I will have to read through and see what all you have gone through.
Hugs to you,
Welcome to the family here. Sounds like you have been through so much with all this. I think it sounds very good that you were able to have the surgery and now there seems to be nothing there. I guess that no news is good news.
Welcome to the best little family no one really wants to be a part of. You will find tons of support here and lots of information. Remember there is no such thing as a silly question around here.
My husband had an extra-hepatic tumor. He had surgery first with a liver resection with a left lobe and caudate lobe resection. He had a heptaicojejunostomy with roux-en-y.....they removed all of the bile system including his gallbladder and then brought a portion of his small intestine up to replace that. He had many nodes removed with that of which one was positive but he did have extension along nerves and the lymph system. He had negative margins on the second try.
They are always pretty complex surgeries. The biggest thing I can say is lots of protein (unless doc has said not to) to assist with wound healing. If you are having trouble eating proteins you may need to try protein drinks and such. Also take things slowly. Keep moving but don't overdo it.
This is what the view out the front door looks like at my house. Lawn is dead. The sky should be bright blue, the haze is from fires in Canada and Eastern Washington. This might be what it looks like some years at the end of August. It's crazy.
That sounds like such a great idea. I really miss the rain....I actually am having to water my flowers although my roses look terrific this year....no mildew or rust this year.
I am really hoping to be doing at least a little bit of traveling once Probate is all done. And don't get me started on that. I would love to come visit you in the winter. Perfect time for me to be down there.
I will trade you. We have had no appreciable rain since the beginning of June. My yard is yellow and dead....except the weeds of course and it seems like half the state is on fire. I would welcome a little snow or even some rain right now. Today is a relatively mild 89 degrees on my back porch.....has been hotter than 95 with some triple digits thrown in here and there.
Nothing against Arizona Lainy but if I wanted to live there I would move there.....of and it's a dry heat. UGH! I am so over it and we have two more months to go.
Hi all -
I just wanted to post a picture of Mark's final resting place. We scattered his ashes in the aspen grove pictured below. Where the bright green forms the point of a vee, he is just on the other side of the trees there. In the valley below is a large reservoir that we fished in a lot over the years. The clearing is an area where elk, deer, bears, cougars and many other critters can be found. He will be able to hunt forever. I felt a sense of peace with it and really feel that he is happy with my choice.
Hi all -
I just wanted to let you know what I have been up to. I am a part of these discussion boards and a couple of FB groups for cc. I noticed that the spouse of those who have passed seemed to struggle more in the groups with people still fighting. I was having trouble expressing my feeling because I didn't want to be Debbie Downer for those who are still fighting. I just left I was floundering with these groups. So I started a FB group for widows, widowers and people who have lost their significant others. It seems to have been a hit so far with 30+ people is just 24 hours. I would like to invite anyone on here who has lost a spouse or significant other to join us. I would like to keep it to spouse and significant others because I feel that as spouse we go through our grief a little differently and have different issues to deal with. Here is the link:
https://www.facebook.com/groups/1647285 … ment_reply
I just want to let all know that I started a new Facebook group for those of us who are Widows and WIdowers from this disease. I have been a part of several FB groups but really felt the need to start something just for those of us who lost spouses. So far it seems that it is hitting a need for many people. So if you feel the need, please join us and I provided the link.
https://www.facebook.com/groups/1647285 … ment_reply
I am with you. I really hope that it works for your husband. I know when they first did it for Mark it did help some. He had the option to has his left in and got home but he didn't want to. He hated it because it hurt so darn bad. Maybe he would have stayed longer if he had but he wouldn't have been happy about it. It is so hard. I have my fingers and everything crossed for the two of you.
You have to go where you are comfortable and that is the most important thing. I live halfway between Portland and Seattle and the last thing I wanted to do was drive either direction. We have a cancer center in our town but it's so small and I knew they wouldn't have a clue and certainly could not do my husband's surgery. We went to Seattle for treatment. That meant a 2-3 hour drive up there and what could stretch into a 4 hours drive home - so dependent on what traffic was like.
I did it for 2 years and for a 6 week period of time, it was daily M-F for his radiation. I would not change one moment of that either. Often times he slept but more often he was awake and we talked.....about everything and probably more that we had in the 11 years of marriage before that.
I wish you such good luck with your trial.
Dear Diane -
Welcome to the best little family that no one wants to be a part of. Sounds like you have actually done so much of the hard work already. And great news that you are able to get into a trial. I know that you are good hands at Memorial-SloanKettering. I hear wonderful things about that center.
Good luck and keep us posted.
My husband's was only on the Left. The initially did a needle drainage of the effusion to look for cancer cells but found none. He did 10 days of IV antibiotics at home after that. He truly felt fine and other than some breathlessness especially at night. We went back a few days after the antibiotics were done and they found it had the effusion had returned. The next day they went in with a small video camera and biopsied the site which was now a mass then drained the effusion and the the pleuradesis which is the talc in the space to make the pleural stick to the lung. He had a chest tube in for 3 days then out it came. We went home 4 days after the surgery. He was on oxygen now though which was new for him. We did find out if was the return of the cc. And he did unfortunately pass away a few days later.
I will say that his was a very unusual case and VERY surprising to all of his docs. They all said it does not go where it did. My husband also had significant underlying lung issues from previous radiation to his chest as a teen. So there were a lot of other factors in this too.
Lee, please feel free to email me if you wish. I am more than will to help and guide. My email is;
Hugs and Love to you both,
Oh Lee, I am so sorry, I know exactly what you are going through, having done this exact same thing with my husband just two months ago. I wonder is it in his lungs or actually the the pleural lining around his lungs. My husband had it on his pleura after being told it never went there. I think it might be time for a frank discussion about what your husband wants out of life. Does he want to stay in the hospital or does he want to go home for care? Also talk about quality of life versus quantity of life. These are tough decisions to make and I wish you the best as this journey continues.
Please feel free to ask any questions.
So sorry to hear of the change in your husband. It's hard to deal with stuff like that. I wonder did they do general anesthesia for the placement. My husband just did a local and some pain meds for his placement. I know that plleural effusion can be a result of anesthesia. Sounds like docs have a good handle on it now.
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