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Stacie – We know well how quickly the good days can change to bad. I think one of the things we hate about this disease is losing the ability to plan. You just never know when a bad day will hit. We’re trying to learn not to look ahead, but we have to admit we miss the times when we could plan a short vacation or even look ahead to the holidays. This disease changes everything. The positive side (I always try to find something positive) is that we are enjoying each day and the simple things in life more. Time with each other and our children and grandchildren is so precious. And we’re learning not to “sweat the small stuff.” Life, unfortunately, is suddenly much too short.
The web site for ambrotose is http://www.mannetech.com. You will find a link to ambrotose that should answer any questions you may have.
I spoke to the radiologist at length today about Dan’s CT scan. He said he is “amazed” at how well Dan is doing — he confirmed that the scan shows no new tumors and shrinkage of his existing tumor. Of course, the PET scan will give us a more definitive look and we’re anxious to get it done. Have to wait for approval from our insurance, unfortunately, and the delays are pretty frustrating. Again, one day at a time.
Juanita
Jules – I’m sorry your dad’s treatments were postponed. Yes, Dan has had his treatments put off before, for many reasons—low blood count, blood clots and numerous infections. Please try not to worry too much about delaying treatment. Dan has had breaks in his treatment for several weeks at a time on several occasions and, thankfully, despite the delays, his cancer has remained stable, his CA19-9 continued to drop, and his liver function and blood tests remained good.
Of course, Dan and I both worry when there are breaks in his treatments, but so far, it doesn’t appear to have had any negative effects. Dan is an amazing person—he has tremendous faith and a positive attitude. I believe that, along with his treatments, have made the difference. Dan is a fighter–he’s beaten two other serious cancers (stomach & lymphoma) and is determined to knock this one out, too. We pray the same for your dad and hope he has better days soon.
Juanita
Jules – My husband also has had to have a few blood transfusions following chemotherapy. Like your dad, some chemo treatments seem to affect him more than others–very weak, tired, and just knock him off of his feet. He has had Procrit shots and most recently has been receiving Aranesp injections to combat the anemia caused by the chemo. Aranesp is similar to Procrit but fewer injections are needed. It does work and Dan feels much more energetic after his injections. We love these shots! Hopefully, they’ll help your dad feel better, too.
Juanita
Lynne – My husband, Dan, was diagnosed with cholangiocarcinoma in August 2005. Next week, it will be one year since he was diagnosed and he is still active and doing well. He has been taking Zeloda and Gemzar continuously since January ’06, with a few weeks off here and there because of infections and a few other complications.
His CA19-9 (tumor marker) is now at 40- from over 900 originally. His liver function tests are almost normal, too. He has had a metal stent in place for over 8 months and it’s still functioning well. He recently had a CT scan and just received the results today. The news was the best we can hope for—no change, no new tumor growth, and his original tumor has shrunk from over 5 cm to 3.8 cm.
He does have some fluid around his right kidney that is causing some discomfort, and aside from being tired occasionally, he feels fine. We are enjoying all his good days and continue to pray for many more.
My message to you is that, while there may not be a cure, there is plenty of hope and much longer than just 2-6 months. Get the best doctors you can find that have dealt with this rare type of cancer (our experience was that doctors that have had little or no experience with this disease give you little hope or encouragement), get 2nd & 3rd opinions if necessary–and especially, keep a positive attitude, don’t ever give up hope and don’t let anyone take your hope away. Best of luck–please keep us posted on your progress.
Juanita
Stacie- You mention that your naturopathic doctor gave you Avemar. We read up on this and are very interested, but it is our understanding that it is not available in the USA. Can you post info on how we can obtain some or the contact info of a doctor that can get it for us? Your response is much appreciated.
Have to add that we love this site–read it almost every day and follow the blogs of everyone that is good enough to share their stories. It gives us hope and a sense of not being alone. My husband, Dan, was diagnosed 1 year ago (August 2005) and has been doing very well. He is being treated with Gemzar and Zeloda. Recently, however, he has been experiencing some discomfort in the area of the liver and will be undergoing a CT scan tomorrow to see what’s up–we pray it’s only his liver cysts (he has several and they are growing) and not tumor growth.
We keep you all in our prayers — please pray for good test results for Dan, too.
Vicky–I am on this site almost every day and, while I don’t usually write, I had to respond to your message. I’m so sorry your mom has this terrible disease. I can understand your anger and have felt it, too. My husband was diagnosed with cholangiocarcinoma in August, 2005. He beat stomach cancer in 1992—non-Hodgkins lymphoma in 1998—and now cholangiocarcinoma in 2005. All three were primary cancers and not related to each other. It seems like each time we began to feel safe and to believe we had beat the cancer, he would develop another. He was 42 when first diagnosed in ’92 and has spent the last 14 years dealing with cancer. Who would think someone could get 3 separate primary cancers? How can all this happen to one person and why should he, and our family, have to endure so much? I have had so much anger and yelled, “it’s not fair!” so many times.
But I’ve learned not to let anger take over my life. I’ve learned, as so many others on this site have learned, to live for the day and be thankful for all we’ve been blessed with (3 beautiful daughters, 6 wonderful grandchildren, and 39 years of happy memories)–and the hope (there is always hope) of a cure and much more time together.
Please don’t lose hope for your mom. There is so much out there that may help her. Read all the info on this site and check out all your options. Make sure your mother’s doctors are helping you fight this disease. There are some doctors who think that, since there is no known cure, there is no reason to do chemo or any other treatments. Don’t settle for this. Find a doctor who will work with you to find a treatment that may help your mom–who will cheer your successes, however small, and encourage you to fight. And stay on this site and read the stories about the amazing people who are fighting the battle and sharing their stories so that others may be encouraged to continue their fight. They are all so brave and such inspirations to all of us.
A doctor once told us that he believes that a positive attitude is 99% of the cure. After seeing my husband battle cancer 3 times, all the while never doubting he would survive, I believe this is true. That, and our faith in God, has seen us through these trials and will continue to do so. Do I still get angry? You bet! But not for long– we have too much to be thankful for and lots of life to enjoy to stay mad.
I’ll pray for your Mom, as I do for everyone on this wonderful site. God bless!
Juanita
David – I hope by now your father is feeling better and his appetiite has improved. I’m sure this is something that may take a little time but will work itself out. Your comments on how your dad’s illness has affected your family really hit home with me. We have 3 grown daughters and 6 grandchildren and are an extremely close family. My husband’s illness has really affected our girls and our family life. They love him so much and can’t do enough for him–bringing him his favorite foods, driving him to dr. appointments and dropping by to visit almost every day. We just took a 5 day vacation with the entire family in Lake Arrowhead (California) and had such a wonderful time. I’m sure you know this, but take advantage of every moment you can to spend with your dad. Make lots of memories and tell him how much you love him. Most of all, take one day at a time and make the most of each day. You’re right, God will get you all through this. He’s allowed our family to laugh, smile and enjoy each other even through this devastating illness. Cancer can’t take away your faith, hope, or your love for each other. We have a saying in our home that we read often–“Worrying does not empty tomorrow of its troubles, it empties today of its strength.” We can’t waste our precious days worrying about what may happen. All we can do is love each other and enjoy every day we are given.
Our best to you and your family,
Juanita
Richard, Thanks so much for your response. Your wife’s situation does sound different than my husbands, since she has had previous kidney problems. I’ll look up edema as you suggested and, hopefully, something will turn up.
Funny (not really) how some people have to endure so much illness and hardship in their lives. Your wife having a kidney transplant and now battling cholangio. Seems so unfair. This is my husband’s third primary cancer since 1992. He had stomach cancer and then 6 years later developed non-Hodgkins lymphoma. While he had to endure chemotherapy and radiation for both, we were very lucky that the cancers were found early. You’d think that would be enough for one lifetime, but now it’s this horrible disease and this time the prognosis is not good. He has a wonderful spirit and remains positive, but my heart breaks at how much he has had to suffer. Through it all though, we will not lose hope. He’s won before and he can do it again. I know your wife can, too, and send her and you our very best.
Juanita
