carol58
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Remember you’re not alone Sophie. The anti-nausea meds are essential and you can always ask to cut the dose if you have to. Keep us updated. Prayers and strength for you.
Carol
Sophie, Charlie’s Xeloda had to be reduced. So, if you’re really bad, you can ask about reducing it. I’m sorry you’re so sick with it. It is miserable.
Carol
Dear Patty, I’m so sorry your Mom is gone, but thankful it was peaceful like you said. That is a blessing to be free from pain. May God bless and comfort your family.
Carol
The caregivers spot now is all about after our loved one is gone. That is good and we will need that someday, but there’s so much in dealing with the day to day. Wish I could think of something to help other caregivers lives smoother and help with all the nightmares we encounter. OK, I’ll stop and think some more. Thanks!
Carol
Rick, thank you for all you do! Under Caregivers, would it make sense to have something like Financial Resources or Soc. Sec. Disability. I know a big part of our journey has included financial struggles over 14 months and I can’t be the only one. I’ve had to fight and learn along the way. Maybe something so it won’t be so hard for others. A caregivers venting place where we won’t be struck down with lightening if we utter a cross word about our loved ones? Oh, I forgot, I already do that anyway, don’t I? I’ll keep thinking.
Carol
Oh boy Marian, that’s a million dollar question. First, do you have a good family doctor locally that is yours and yours alone that you can talk to? He or she can often give suggestions and point you in good directions. Sometimes, it helps to talk to a therapist. I think Hospice offers a lot of counseling programs. This doesn’t mean your loved one is about to die, just help for those of us trying to hold everything together. If I’m not mistaken, I don’t think you have to pay at Hospice or very little. Also, if you need help with antidepressants or nerve/anxiety medication, your doctor should be a great source for that. You need a caring professional that you can talk about your life situation with that can offer ways to manage it. We can’t remain positive all the time and that’s okay. No, the cancer itself is not happening to us, but the effects of it threaten to eat us up too. As a caregiver you also have the weight of the world on your shoulders and there is help out there to lighten the load. You have to do this for yourself to keep your sanity. I was at the receiving end of some bad moods last summer with Charlie, but for some reason haven’t had a recurrence of that. Thank God! That drained and wore me out more than anything I think. I think I gave him a few “tough love” talks. He was mad, but got over it and after a while, I think I just wore him down with loving him so much, he just couldn’t resist anymore. Please keep us updated. Don’t let your loved one’s cancer take your life. Strength and prayers for you.
Carol
Jeff, was your cc found at an earlier stage and you were in your 40’s? I hope you don’t mind me asking.
Lots of wondering.
Charlie has always been a stick and he’s now even a slimmer stick, but I love him! He has good slim genes from his parents before him. He’s always been around his high school weight. I’ve often thought it’s too bad I couldn’t give him some of my extra ample padding. He’s got that skinny cancer look about him now. Wish I could fatten him up. Believe me, we’ve tried everything. His problem is he loses weight very fast after chemo when he’s sick and then it’s hard to regain what he lost when he’s feeling better. So he gets a little further behind each time. Strength and prayers to all.
Carol
Hi Sophie, Charlie is on IV oxaliplatin and oral Xeloda. He has a CT scan every 6 weeks now. The IV chemo is given every 21 days. I like this better than every 3 months for him because we’re trying to figure out if this chemo regimen is effective. So far, last CT showed tiny shrinkage in 1 tumor and stability in the rest, but the chemo itself is taking such a toll on him. Lots of big decisions need to be made this next CT. Keep on taking even if tumors are stable? Let Charlie have a break from all this? Hard questions we all have to face. Generally the scans every 3 months is a good rule to go by. Take care of yourself.
Carol
Lisa makes a good point too Sophie about the mail in prescription. Charlie’s Xeloda comes by Fed Ex from the Walgreen’s specialty pharmacy in Oregon. We can’t get it filled at our local store.
Carol
Hi Sophie, Xeloda is sooo expensive. Charlie has been on it for a while. That and the IV oxaliplatin seem to be holding things stable right now. Another scan to check in a few weeks. When our oncologist proposed trying Xeloda a while back, he had his staff people call our insurance and I think he dealt with the pharmaceutical company that makes it. Anyway, Charlie had to sign several forms. I think we got it on “compassionate use”. Otherwise, we couldn’t have gotten it either. I know it’s hard, but the combination of the 2 drugs seem to be showing signs of working better than just one. Don’t give up. Do you have anybody that can help you and be your advocate? Strength and prayers for you.
Carol
Dr. Benjamin Calvo performed Charlie’s liver resection last year at UNC Hospital. He was great. Thought it wouldn’t hurt to have some specific names while you’re researching.
Carol
Jolene, I’m so sorry you’ve lost your wonderful father. I pray that God will put his loving arms around you and comfort you and your family.
Carol
Mark, Charlie has been treated at UNC hospital in Chapel Hill by Dr. Hanna Sanoff. She is a wonderful and very knowledgable doctor. Kris (Devoncat) on the board has also seen her. I think I know how you feel. I didn’t think Charlie would make it to Christmas last year and here he is still going (not so) strong, but definitely still going. I hope this helps. Wishing the best for your Mom.
Carol
