kvolland

Forum Replies Created

Viewing 15 posts - 1 through 15 (of 645 total)
  • Author
    Posts
  • in reply to: Side affect on 3rd chemo session #91652
    kvolland
    Member

    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.

    Hugs, KrisV

    in reply to: Need advice on the ups and down’s of CC #91574
    kvolland
    Member

    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.
    KrisV

    in reply to: Hello CC Family – Update #91626
    kvolland
    Member

    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!

    in reply to: 3rd strike on surgery. No transplant. #91639
    kvolland
    Member

    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.

    Hugs,
    KrisV

    in reply to: Hello CC Family – Update #91624
    kvolland
    Member

    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,
    KrisV

    in reply to: new member first post #91582
    kvolland
    Member

    David,
    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.

    Good luck,
    KrisV

    in reply to: Introduction #91630
    kvolland
    Member

    Karol,
    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.
    Good luck,
    KrisV

    in reply to: PTC/biliary catheter placement #88693
    kvolland
    Member

    Lee –
    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.

    KrisV

    in reply to: new to the disease and to this link #88812
    kvolland
    Member

    Diane –
    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.

    KrisV

    in reply to: new to the disease and to this link #88810
    kvolland
    Member

    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.

    KrisV

    in reply to: PTC/biliary catheter placement #88690
    kvolland
    Member

    Lee –
    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;
    dazoo3563@comcsat.net.

    Hugs and Love to you both,
    KrisV

    in reply to: PTC/biliary catheter placement #88687
    kvolland
    Member

    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.

    Hugs,
    KrisV

    in reply to: PTC/biliary catheter placement #88683
    kvolland
    Member

    Lee –
    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.
    Hugs,
    KrisV

    in reply to: New Diagnosis: Faith Hope and Love for Mom #88566
    kvolland
    Member

    Dear Jason –
    So sorry you, your mom and your family have to go through this. It is a very rough disease on everyone involved as many of us on here can attest to. Having a good doctor that is willing to explain things is imperative.
    As far as bed side manners I have to answer for that. As a nurse I see doctors in an even worse light because there are many that will treat their patients fairly well but then treat their nurses like crap. I will not see a doctor that treats anyone that way. It does not take that much to just put the smile on at be gracious. I do it all the time when dealing with patients.
    As for palliative care, I can answer questions that you might have. I have been a home health and hospice nurse for years so feel free to ask away. As for the nausea without a doubt treat it like pain and stay ahead of is so taking the medications regularly is optimal. Often constipation can happen with taking nausea meds and with narcotics so it is good to have a plan for that just in case. I usually recommend a combination of stool softener and senokot but talk to your doc they may have others they prefer.
    Glad that she is home from the hospital. Home is where we do that best.

    KrisV

    kvolland
    Member

    Michelle –
    Sounds like you guys have a plan. Mark was on blood thinners through about half of his 6 months of chemo due to his clot after surgery. We didn’t have any issues other than he got nose bleeds off and on but they usually stopped without an issue.
    Weight is always an issue. Mark was 245# when he had his surgery. He got down to about 190ish after surgery then leveled out finally at about 210# after just chemo. When he did the chemo (5FU) with the radiation he got down to 158# but like I said he had rare and severe reaction to the chemo….they told he could stop but he refused. We got him back up 210 after that. We did a lot of protein shakes. And you might out GNC or other health food store for flavored protein powders….we used several different flavors in his protein shakes.
    KrisV

Viewing 15 posts - 1 through 15 (of 645 total)
©2017 - All Rights Reserved, Cholangiocarcinoma Foundation