louise
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Mark,
When I was introduced to the Cancer Center after diagnosis and in preparation for starting chemo, they recommended having a driver for my apointments. I also started with the Gemzar/Cisplatin combination of chemo. My Cancer center is only about a 10 minute drive from my house, so after the first few visits, I quit having a driver for regular chemo. However, when my blood counts dropped and my legs were weak, I needed a driver. I do not live alone. I have husband and 2 teenage boys. You will need to let people know what you need and when you need it. I had a lot of help available, as I have 3 adult children who live within 1/2 hour of our home and many people from church, neighborhood, and work were willing to do anything we asked. My normal day for chemo was on Mondays, so we often had meals delivered from a ministry in our church for Monday evenings. That was wonderful, because one teenager had scouts each Monday night and my husband had Monday evening commitments as well. When you keep people informed of your condition and your needs, you might be surprised at how many people will offer to help. My kids convinced me to use a facebook account to keep people informed. That way, interested people can find out without worrying about calling you when you are resting or interrupting something important and they will know what help to offer. Cholangiocarcinoma is so unpredictable that no one can tell you what you will need or when you will need it. We have a tendency to feel helpless in the face of the unknown, but reality is that you call the shots. If you want help, ask for it. When help is offered, you have the right to accept or reject any given offer. If your cancer center is holistic in its approach, they may even have lists of resources you can call upon when needs arise.
There are many people on this site who are willing to share there experiences with you. As questions arise, ask and you will have answers.
God bless you!
LouiseShira,
I’m praying for you and your mom. I have more questions than answers. Did they for sure identify the source(s) of infection? When I had fever and chills that lasted several days, I had lots of tests and blood work. After determining that I had both pneumonia and a urinary tract infection, I needed iv antibiotics for the eight days I was in the hospital and an additional number of days after I went home. For an antibiotic to work, it needs to “match up to” the infection it is expected to fight. Unfortunately, the human element makes the matching difficult because different people have different hormone levels, blood chemistries, and reactions to different elements. As for the enlarged gall bladder, I have no ideas. I suspect the gall bladder could be unrelated or it might be the body’s effort to process/remove the antibiotic. My gall bladder was removed more than a year before my cc diagnosis. Hope the infection goes away soon!
Louise
My cc bracelet came in handy today! I went to the dermatologist, as I said above was the next step in dealing with my rash. With one look, he said it looked like Grover’s disease. Since the cells of Grover’s disease are distinctive, they took a sample of my skin to send off for a pathology report. I looked up Grover’s disease on the internet, and there is a picture that my husband says looks like my back. The rash is typical of men in their 50s and may be triggered by heat (does that mean radiation?). Hubby suggested that since I went thru menopause, maybe my body’s hormones are still messed up and here I am with a typically male rash. There is no cure, just treatment of symptoms. However, it tends to go away after a year or so.
Because I had mentioned having radiation therapy, they asked what kind of cancer. When I named it, neither the doctor nor the nurse seemed to have a clue what it was. After seeing the spelling on the bracelet, the doctor guessed enough to mention my gall bladder, but the spelling said more to him than the pronunciation did. My follow-up appointment to remove the stitch and to get results of the pathology report is scheduled for July 31. Just what I need–another disease that people do not know! At least Grover’s seems to have a better prognosis and a standard protocal for treatment. The following link has probably been most informative for me: http://www.aocd.org/skin/dermatologic_diseases/grovers_disease.html
I’m not sure at this point if treatment is a topical ointment, a pill, or both, but I expect if Grover’s is confirmed with the path report, I’ll have prescriptions on July 31.
I’ll be posting what I learn on the 31. Until then, my prayers for all.
LouiseKaren,
Way to advocate! Congrats! I wonder if that is what the scripture that says, “Be angry but sin not” had in mind. I think we really make our point when our anger is justified, directed, we know what we want, and we control the anger. It also helps when what we want is for someone other than ourselves.
I am praying for you and your family.
LouiseHello Peanut,
I still have 2 sons in high school and I really worry about the youngest because he knows I’ve had this cancer, but he doesn’t want to learn all about it or even bear it. What will happen to him when I’m gone? Would you mind if I say some things to you that I wish I could tell him? If it helps, you can pretend your mom is saying these things to you, too.
I will love you forever. Even when you cannot see me, I’ll be looking out for you. I wish I didn’t have to leave you like this, but God doesn’t always tell us His plans until we need to know. Some people come into our lives for a reason or for a season, and some for a lifetime. Be open to the people you come into contact with, whether in person or through writing, and you will find or be found by the people who can help you through this time. I have great joy when I see your smile, your thoughtfulness, and your helping ways. I know it can be lonely and hard to lose someone you love, but that only emphasizes our need for more friends who care. Scripture tells us that God has special blessings for orphans. Even if you don’t feel like I’m there for you, God is and will be. Remember, you are loved.
Peanut, would you mind telling me how old you are? I’ll be praying for you. I think I’ll be losing my Mom soon, too. It will be nice to know that she will be all through with suffering, but I will miss her a lot.
LouiseI am also on Anthem/BC/BS through my husband’s employment, so even if I have to quit my job, I should still have my insurance without COBRA. That is a real relief and concern. They have been very good to me, though I have had to push pretty hard to get some things covered. I have learned a few things about my insurance company. I can file an appeal on my own behalf, and then the insurance company contacts the Doctor if more medical info is needed or needs to be confirmed. The insurance company seems to have a policy of denying anything questionable on first and sometimes second claim, but they often yield to persistance. One reason they try to say treatment is experimental is because our cancer is so rare and so scarcely studied compared to other diseases that the medical community has not even had a standard protocal for treating it. Few people would deny radiation as a treatment for cancer, but the insurance company tried to say that my radiation was experimental because it was not on a protocal for cc. Both my primary oncologist and my radiation oncologist assured me that the bill for my radiation was to be negotiated between the hospital and the insurance company; I would not be responsible for it. I am well pleased with my health care team.
My concern about nationalized medicine stems from what I saw when my husband was in the air force. Each doctor seemed to be under time pressure, as appointment times were overbooked. Our appointments were typically with a department, not necessarily a specific doctor. If you did not arrive with your list of questions written out, they didn’t have time for chit-chat while you tried to recall what you wanted to ask, and it really helped if everyone did the kind of learning/asking questions before they saw the doctor so we knew what to ask. Treatments were readily available and we never even saw a bill (that’s the part I miss), but I saw people who did not get the care they should have had simply because they did not know what or how to ask. So in my mind, the people who need healthcare help most still may not get what they need unless the role of advocate becomes huge.
Mary,
I won’t argue with your decision, but I would like to share my experience. I am also a 54 year old female diagnosed 2 years ago. With my first cycle of chemo, I had Gemzar and Cisplatin. I did experience a lot of nauseousness and exhaustion, but I continued to work part time, did water aerobics when I could, and dealt with other side effects, but with 6 months of treatments, they hoped to reduce the tumor enough to operate. When the scan came back after the 6 months, there was no sign of the tumor. Remission was the word. I returned to work full time but had other issues, so a jujenostomy was done in March 2008. The scan in June showed that the cyst on my ovaries had gotten large enough to be of concern, so a hysterectomy was scheduled for July 15. Though the cyst turned out to be metastasis, they thought they got it all. By September, jaundice was returning, so I had more chemo (same cocktail) while a specialist worked to get stents in place in both branches and the primary bile duct. Again in Dec. the scan showed no tumors. There was a spot where all the cancer started that they could not determine if it was scar tissue or precancerous cells. The options were: 1. wait and see. 2. operate to get a pathology report, but risky. or 3. radiation therapy. I went with radiation therapy.During the second cycle of chemo, I had almost no nausea and some exhaustion, but not as much as the first time around. Seems that the Gem-Cis combination tends to push women into menopause. Their effect on me the second time around may have been mitigated by the reduced hormonal levels of having been through menopause. I worked full-time through the radiation therapy and did fine. In the meantime, I have had the chance to see my first grandbaby and I’m really hoping to see my youngest 2 sons graduate from high school. One will be a senior this year and the youngest, next year. At the moment, I am in remission, working full time, hair growing nicely, energy levels are rising. Life is good and I have a lot I want to live for. I still plan on fighting for every minute I can get.
Reality, all of us have limited time, but most people don’t know the time limit. Yes, some days are still not so good, but I had good days and not so good days before I was ever diagnosed with anything.
My Mom chose not to fight with chemo, radiation, or surgery. At the age of 85 almost 86, her oncologist didn’t expect her to last a year. That was in 2006. Yesterday, she saw her oncologist again, and he said she was doing well considering all the other details. However, he did refer her to hospice yesterday. Still, without the medical fight, she is still going. The pain is now more frequent and the mets to the lungs as well as growth of other spots indicate she probably doesn’t have many weeks left.
Count on one thing. You have the right to make your choice and we will all support your decision.
God bless you!
LouiseStanvq,
Thank you for writing, and I’m glad you found this site. We will be praying for you and your family. Yes, this cancer is ugly. Part of its ugliness is that by the time it is diagnosed, it is usually advanced and hard to treat. Also, because it is rare, little research has been done on it. Thus, the insurance companies consider many treatments experimental and therefore, not covered. However, the insurance companies can be successfully fought.
No matter what the doctors think or say, they do not know your Dad’s expiration date. His will to live, desire to fight, and attitude all play a part in how the disease progresses or not. Many people on this site have outlived the life-expectancy voiced by oncologists. So learn all you can, enjoy the moments you can spend together, and accept each day as a gift from God.My cc was diagnosed in May 2007 and I informed my oncologist on my first visit that I didn’t want to hear a prognosis. We have fought a good fight. I’ve had an ERCP, stents, chemo, radiation, and surgeries and at the moment, I am in remission, winning the battle, and completely off all medications. No one can predict or guarantee solutions, an action plan that will work OR an expiration date, so it is up to the patient and family to determine which paths seem right to you. It may be simplistic to say that success depends on how many days he survives, but that is only part of the story. Each day, the decision to continue a treatment plan or switch to a different one, to pursue alternative therapies, find a different doctor, or choose to do nothing more is the right decision when the patient makes educated choices. Of course, we don’t have perfect knowledge, but no matter what choices we make, we don’t have a guaranteed outcome. This is usually hard to accept, but faith is also an anchor in the battle for those who believe.
My mom was diagnosed with cancer in 2007 at the age of 86 and she chose not to pursue chemo, radiation, OR surgery. Her oncologist didn’t think she would last a year, but she is still with us. Of course, without such treatment plans and tissue to send to a pathologist, complete diagnosis has not happened. But Mom has been a prayer warrier. She can still get out of bed unaided. She can walk to her easy-lift chair and fix foods of her choosing when she feels hunger. Her memory is not what it once was, so she chooses not to take any medications unless her attendant or family prepares it and gives it to her. However, she has begun to experience pain. She is reluctant to take much in the way of pain killers because she has had hallucinations from pain killers, and she doesn’t want that again. So each day that she gets to make choices, each time that she uses her prayer beads, and each step in her endless cycle of chair/bed/kitchen/bath represents another success for her. She has begun to say goodbye to all her children and grandchildren. We struggle with saying goodbye to her because we will miss her fiercely, but at the same time, we do not wish to see her suffering, and we know that we do not get to make the final decision. She is ready to go and she misses Dad. They had been married for 60 years before he passed away in Nov. of 2005. I remember Mom told Dad that it would be okay if he let go, that she would be okay. Only a couple of days later, he died in his sleep. I wonder how many of my brothers and sisters have said (or need to tell her) it is OKAY, we will be okay. I know that I have told her. These are never easy things to go through, but cancer makes the need to talk even greater for many of us, and sharing our experience helps us survive and go on.
So come to this site as often as you need to, whether you want to ask questions, rant and rave, share successes, or just see what others are up to.
God Bless!
LouiseAsher,
I had 28 days of radiation this spring, and I started having tiny spots about the end of the 28 days. The rash has gotten worse and the itch drives me nuts at times, but it is not the same itch as I had with jaundice, so I’ve talked with my family physician, with my primary oncologist, and with the radiation oncologist’s nurse, who consulted the doctor and got back to me. Since the radiation was finished April 2 and we’re into July now, they don’t think it is related to the radiation. I’ve just started using the new ointment they prescribed for me, and I’m not convinced it’s working but the suggestion was that the next step would be to see a dermatologist. The rash for me is all over the back and around the breasts, and one question was whether it might be shingles, but I said I didn’t think so because there has not been any blister/oozing or pain that I would expect from shingles. The doctors who’ve looked at the rash don’t believe it is shingles, either. So I’m still looking for answers, too. I did have full blood chemistries done less than two weeks ago, and all levels came back in the normal range, suggesting that the rash is not related to the cancer or treatment, but I’m stil not convinced.I think I”ll be seeking a dermatologist next week, but seeing this series, I’m still inclined to suspect the radiation as a cause. What I really want is a solution. Please keep us posted about your dad. I’m praying for you both.
Louise
Beth,
Delightful news!
For me, the decision was “How aggressive did I want to be in fighting cancer?” I told my oncologist on our first visit that I wanted to be very aggressive, and I had Gemzar and Cisplatin. Six months of the pair was planned, hoping to reduce the tumor so that I could have surgery. At the end of 6 months, the tumor was gone! No surgery at that time. However, other issues followed, and after about 7 months, I had a second set of chemo treatments, with the same chemicals. I am again in remission, and doing great most of the time, except when I feel mildly depressed, which isn’t often.
My Mom was diagnosed with CC at the age of 86 and chose Not to pursue chemo, radiation, or surgery. Her doctor thought she might have a year to live. She’s still with us now, 2 years later. Her decision had more to do with her age, the fact that she has had open-heart surgery, and after 60 years of marriage, Dad passed away in 2005, so she misses him terribly and is ready to go home. She felt that treatment would definitelhy affect quality of life but might not improve the quantity of her lfe.
I’m saying both stories because I believe there are no perfect predictions about what results will come from any treatment plan that would apply to all, so the patient should learn as much as they can handle and be as involved in the decisions about treatment as they want to be. If a patient doesn’t want to decide on a treatment plan, then the choice of a doctor you trust becomes even more important. In other words, there are also no wrong answers.
Of course, for me the “perfect” answer depends on faith and a relationship with God. He is the source of all our miracles!
I’m still praying.
LouiseHi, Jamie,
My husband has been a meteorologist in the military, and we all know meteorologists who always predict the worst. Is many ways, the oncologists have to tell us about the potential side effects, but they have no more assurance of how it will affect you than the meteorologist does. What I would ask myself is this: What is the worst that could happen with it; and what is the worst that would happen without it. Then the question is, am I strong enough, with God’s help, to face today’s battle? Which risk am I willing to take in fighting today’s battle? One step, one minute, one shot, one day at a time. Whatever you decide, you will make the right choice for you.
Keep us posted!
LouiseDear Boomgaart1,
Welcome! It is good that you found us so quickly. We’re here to share the journey. Seems we all have our own journey, but we experience many of the same twists, turns, hills, and valleys. I’m 54 and I have had my hemoglobin drop more than once. Often, it means receiving a blood transfusion. There is also a shot they have given me when the level is below normal, but not low enough to merit whole blood.
I have been my own advocate, reading as much as I could handle on various web-sites. This is a good site to explore. I also asked a lot of questions and usually had a list to take with me whenever I saw the oncologist. I can’t give medical advice and don’t have enough facts to be convincing about what to do. I’m not sure anyone can tell you or your dad what to do. Remember, he has the right to say yes or no to any recommendation, and if the oncologist doesn’t agree with his decisions, you have the right to seek another doctor. In fact, second opinions (or third…) are often helpful.
Hang on for the ride of your life, ask all the questions you want/need to ask, and know that I am praying for you both.
Louise
Jamie,
I have had Neulasta numerous times after chemo treatments. I always had them inject into the belly rather than the arm. Also, they would inject slowly to minimize the side effects/pain of the injection itself. One of the nurses suggested taking Claritin or other over-the-counter antihistamine for a few days after the injection to help minimize the backaches, and that worked pretty good too. I was on Gemzar and Cisplatin. I would have both on day 1, only 1 on day 8, and the Neulasta would be given on day 9 of a 21-day cycle. The reason for the Neulasta was to keep the hemoglobin from dropping too much. My strong preference was to have the Neulasta and its side-effects rather than risk the hemoglobin decline that would be treated by a blood transfusion and hospitalization to get enough blood.
Hope this helps!
LouiseWhoa Nelly! Sounds like y’all have lost hope. No need for that. My Mom is now 88. About 2 years ago, she also was diagnosed with cc. She chose not to pursue chemo, radiation, OR surgery, and her oncologist didn’t think she’d last a year. They didn’t know my Mom or the power of her prayers. She’s still with us, though declining again. She has a consultation with a Dr. set for Monday morning because they now think surgery might be wise. Her tumor near the pancreas is 3.1 centimeters in diameter and she has spots in her lungs that were there two years ago but have gotten a little bigger, ranging from small marble to large marble in size.
Certainly don’t plan major events with her when you visit, and be grateful for each minute you can share! Share as many memories from the past as you can, don’t be afraid to take notes so you can hang onto the memories and share them with the family, and even just spending quiet time together can create more memories to hold onto. The time will be especially blessed if you can pray together or share some music, too.
Touch has been extremely important in our hospital ministry, so if you can find a way to sit and hold her hand or stroke her arm when she is resting, you may both find comfort in that as well.
Wish I could say that you would constantly be in my thoughts and prayers, but that is not realistic as I will also have a chance to spend some time with my Mom and with my young grandson, making our own new memories. You are in my prayers!
Peace and God bless.Hi, Tony!
I have had great results from the Gemzar/Cisplatin combination. The possibility of radiation at the same time was discussed and rejected before we started (July 2007). Initially, it was hoped that the chemo would reduce the size of the growth to allow for surgery, but in 6 months, the chemo worked so well that the tumor did not show up on the scan–Remission! the first time. Of course, one of the side effects did not show up during the treatment time. The opening from the stomach to the duodenum shrank, so I had to have surgery. Various other battles ensued and I had a hysterectomy in July of 2008. The cysts on the ovaries were metastasis, so we went back to chemo. It again worked, with remission again in time for Christmas! The two cautions from my experiences: 1. Keep yourself well hydrated! Dehydration is no fun. and 2. One of the anti-nausea drugs is a steroid that elevates the blood sugar. During chemo, I had to learn about diabetes, use the glucometer, and take an insulin enhancing medicine. Thank God I am currently off of ALL medications, growing my hair back, and regaining energy. You are young. If you have been involved with sports or working out, try to maintain the activity. I did water aerobics as often as I could and I believe it helped with maintaining a positive attitude, retaining as much strength as possible, and in sharing my ups and downs, I received so much emotional and prayer support. Amazed the oncologist that I kept working throughout, too. Of course, I did use up a lot of my sick time, but never used it all up and I’m back to time periods with NO sick time used. So I’ve had CC for 2 years now and I’m surviving quite well, thank you.
God bless you!
Louise:)
