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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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Posts found: 1 to 25 of 91
Nancy, I was so sorry to read about the rapid onset of jaundice and pain. CC is so variable that it is difficult to even begin to guess what is wrong. I wish you would have received the results right away so that you would know in what direction you and your husband would be going. Bony mets are painful at times and not at others. I have mets to both hips but the left hip does not hurt at all while the other still hurts after treatment and surgery. I will be praying for you both during your visit tomorrow to the doctor. There is so much to be thankful for at times when you have been able to share positive family times together for extended periods. I pray you have more of those times.
Nancy246, when I learn how to send pictures I might try to do it. I show in the Garry Oak Gallery in downtown Oak Harbor and we do have a website. I have not looked at it lately to see what pictures are on there. Art has been a lifesaver for me in more ways than one.
Lisa, I wish you the best in your continued fight against CC. I am in about the same position as you although I am not quite as far along. My diagnosis was January 2010 and chemo failed but a direct chemoembolization to my liver tumor did suppress growth. I suspect my liver tumor is growing again and will have a CT today but I feel well and am actively participating in my art gallery and shows. My faith carries me through and wonderful family and friends have provided me support all along. I pray for all on this site......
I am in the midst of radiation again, just 10 days as before. Saw my radiation oncologist and told him I still feel as though I have no cancer. My arthritis pain is actually worse than any of this in my bones now and a "touch of Vicodin, a smidgin of Neurontin and a wee bit of Aleve has allowed me to pursue all of my activities. When I was first diagnosed my oncology surgeon refused to operate because of the extensive risk of the surgery and the fact that I had positive lymph nodes in my abdomen. I have thanked God daily for my doctor's refusal as I know I would not have had the quality of life I have had in the nineteen months since diagnosis. I have felt mentally well, physically relatively well (except for pain which is bearable), and I can do all I want. Why I have been so blessed I will never know. I know I would never have had the courage to do what so many have done for a "cure" but, who knows, if I had been in their shoes I might have chosen to look for a "cure".
I pray for all of you in your monumental battles to live.
Forgot to mention....I started taking high dose Aleve Naproxen 550mg and have been able to cut my pain med to a third of what I have been taking. Perhaps others may benefit.
It has been a while since I posted as I have been busy with a bone scan after a "twinge" of discomfort in my left hip (my R hip has already been scanned, operated, and radiated. It has only been a few months now so it seems rather rapid advancement of what the oncologist calls a significant cancer in the left SI joint. Still, no pain and only a little slowdown in my activities....Of course I will still have to stop at Angel of the Winds casino each of the ten days of treatment and continue my winnings! It is something else to think about outside of cancer.
Paul, you asked how my hip cancer was found. I have had pain in my right hip for several years attributed to bursitis. X-rays were normal over the years. I went to my regular doctor when I had so much pain that I had to use a cane. She ordered an x-ray which was normal but the pain continued to progress so that I needed to use a walker. My oncologist then ordered the bone scan just to be sure it wasn't something else and that's when they found the met. 3/4 of the bone had been replaced by tumor so it was pretty remarkable that my hip had not fractured. Whole body bone scans can be done if indicated but that would be up to your oncologist. I have so much severe osteoarthritis that pain for me is not necessarily an indication to do a bone scan for bony mets. I wish the best for your brother and hope that all the help you receive here from experienced others will lead you in the right direction. I will keep your brother in my prayers.
Paul, I also have intrahepatic CC with a large liver tumor in the left lobe and two lymph nodes in the abdomen and a recent discovery of a large tumor in my right hip and subsequent radiation treatment. Also had a chemoembolization of the tumor in my liver last July which appears to be successful. All of this has been done at Providence in Everett so that may be another option for second opinion. There is one other person on this web site who goes to SCCA so she may add her comments here. My prayers for your brother.
I found all of this information about the care your mom received is so disheartening. How can "caregivers" be so inhumane and thoughtless. They obviously have never had to rely on the goodness of others. Just following nursing practice guidelines should have assured a high level of care. It almost sounds like it was a "for profit" hospital where the fewest number of employees care for the greatest number of patients. Certainly the attitude there was poor. I hope you keep us informed about your progress on this.
Thank you for your support. I will mention that I did get tested when I was taking 6000IU and was still low normal. A physician friend who has been studying Vitamin D3 research was the one who recommended the increase to 10000IU. I have stayed out of the sun for many years because of sun allergy so I don't worry about excess from sun exposure. Also I have a metabolic panel about every two months so my liver and kidney functions are tested frequently. All have been within the normal range. I hope more people will add to this discussion in case there is more information out there.
Again my CAT scan shows no change in size or number of tumor/lymph nodes at month 17 from my initial diagnosis. Of course I did have a recently diagnosed significant tumor in my right hip which has been treated with what I hope is success. I question whether the hip cancer was pre-existing and just not seen on any other scans because the scans did not go that low. Other than the recent treatment on my hip I have had no other treatment since a chemoembolization in July 2010. I have been taking 10,000IU of vitamin D3 for several years (initially to treat MS) and I think it may be what is holding the CC at bay. There is some new research to show that it has been helping in breast and bowel cancer so I pass it on in case someone may benefit from it. Always check with your physician. I have refused to stop it (not that anyone has had the nerve to suggest it). I want so much to help fight this terrible disease particularly since I seem to be doing so well in spite of the degree of disease that I have. I would give anything to see all of these special young people and anyone suffering from CC to live more comfortably even if there is no cure. God bless all of you.
What a wonderful poem! We worry about the future of our children and grandchildren and then we see something so special from one of them that hope springs anew. Papa helped raise a great young woman.
Lisa, we should meet and I can share my very successful technique for using the slots! Bring your angel.....
It would be fun but at the moment most of my appointments are in Coupeville unless I see a specialist at Providence. Will let you know.
So my older sister called yesterday and asked how I was doing. I said if they removed my right hip and leg I would feel completely normal. A quick update. I am now 17 months out from my initial diagnosis and prognosis of 6-12 months. Being a hearty disbeliever in prognoses I said I would not follow their timeline. I had right hip pain and found that I had cancer in my right hip with subsequent surgery for stabilization followed by 10 total days of radiation. The second week I was feeling so good I was able to drive myself and somehow my car turned into the Angel of the Winds Casino where the angels filled my coffers with just under $500 to cover my gas money and lunches. So my roller coaster was on the way up. So last Saturday I was just standing near my bed having been up for several hours. Slowly I started to topple backwards and landed on my boofer. It was hilarious with my husband trying to pick up my hefty backside while I pulled on the bedrails. So that started my ride back down. I did not break anything but have had a great deal of pain since then requiring a walker again after having not needed an assist for a couple of weeks. So that's my tale until May 11th when I get my CAT scan report. The good side of my disability is that my husband has decided to become the family chef and has made such exquisite meals that I am abdicating forever......
What a great attitude! My favorite quote comes from your comment about your Greek God. I'm still waiting to have a handsome young doctor taking care of me and I am 67. Your great sense of humor must carry you a long way. I'll pray for your continued progress.
I agree with Nancy. It does take great courage to make that decision and sometimes you may find that just having hospice in takes away some of the stress and you feel that much better just because of them. I have been going to Providence in Everett for the past two weeks and have thought of you when I pass that turnoff and wondered how you were progressing. I was out of touch with this site while I commuted since it took some of my energy to make the drive. God bless you and carry you through this journey.
I have intrahepatic CC with a 10.5cm tumor in the liver and two enlarged lymph nodes in the abdomen. I had absolutely no pain until I started having hip pain. It was found that 3/4 of my hip was replaced by tumor, a pin and plate were put in to stabilized the hip and then radiation. I am currently going on my 6th day with 4 to go and already my hip pain has decreased to a very bearable amount. I'm told I have a slow growing CC. My best wishes on the journey.....
Just a quick note. Back in December I was doing well and requested that I be able to wait four months for the next CT. My oncologist agreed and then in January I started having intermittent R hip pain which I attributed to bursitis which I have had before. Because of progressive pain my oncologist ordered a bone scan which showed a fairly small area of highlight and sent me to the radiation oncologist who assured me it would take just 10 treatments and then 3 months of the bone regenerating where the tumor had been. During my planning CT the radiation oncologist said the tumor was far more extensive and at risk of fracture so I headed for my orthopedic doctor who operated the next day with a screw and plate to stabilize the bone. The surgery went well and then the nurses looked under the binder I wore to apply pressure to minimize bleeding. That's when the fun started for there for all to see was this bright red, blistered, draining rash that exactly followed the pattern of the binder. Now twelve days and ten different doctors' visits later I'm told my radiation would be put off at least 30 days. Now the incision looks infected. Good thing my orthopedic surgeon thought ahead and gave me antibiotic in case my incision looked worse which it did today. I figured it would since I'm a nurse and assured that I would not follow a straight path. Must be something out there that I'm to do yet here at home before I begin the 150 mile round trip for daily radiation treatments! Then I start reading about the incredible journeys so many of you are making and I realize that this is just a short ride down on the rollercoaster and will soon be going back up. Love to you all.
I'm not sure where you and Arty have found the incredible energy it takes to pursue treatment or cure for CC. The two of you are remarkable and it shows the depth of your love for each other. No matter what the future holds it will be that love that allows you to get through this. I will pray that you be given the strength to deal with whatever path you take.
Melanie, I am so impressed by the way you are able to express your feelings so well that we can all feel the pain and loss and hopefulness that your words are trying to express. I am so sorry you lost Barry so quickly and painfully. You must have been a great support to him as I'm sure your children were too. Many go through life without knowing the blessing of love. Charlea
You know my husband wants to know exact dates about everything which makes it hard when the answer is wrong. A psychiatrist once said that Navy pilots can only function by putting issues into little black boxes in order to do their critical jobs. If they were distracted by a family matter for instance they may not be able to concentrate on their flying as carefully as they should. My point in saying this is that there are times when no one can answer the question and we have to learn to live with that uncertainty. If you knew the answer would you live your life differently? Or would you take the days and live them with more joy as each one is precious? And tell every friend and family member how dear they are to you and what they have added to your life.......
Lainy, I couldn't even learn enough about knitting to make two left sleeves! Most of what I do I do for fun so if it's stressful I find something else to create. And then I give it to my friends! That can be a positive or negative.....
One of my pastels is on my Facebook page as my picture. I don't know enough about computers yet to put my picture there. I learn a little about a few things to be dangerous.
Hi All, no blood clot, the leg continues to swell but it is bearable so onward I go! Was able to do housework today and now am getting ready to work on some paintings I had started earlier on before the diagnosis. I have an appointment later today with my orthopedic surgeon so maybe he'll have some ideas about the swelling. Thank you for your good wishes.
I cannot understand why a doctor would not have come and discussed this decision with his patient. I hope you have good success in finding another oncologist who spends the time to share his reasoning and give support when giving such a hard prognosis.
Well, I am home from the hospital after surgery which went well. However, leave it to a nurse to have a unique problem which in my case was a massive skin reaction to the binder used to hold the dressings in place. Redness, blisters and draining areas from chest to knee! Fortunately it isn't painful and it is distracting from the surgical pain. I am just getting ready to go back to the hospital because my leg is swelling more than expected so they suspect a clot. I'll have an ultrasound and be on my way. The up side to all this was the wonderful care I got at the hospital with the chance to see a lot of old friends I used to work with. When or if I have to go into hospice there I will go with a sense of caring that is so comforting.
Will report more later. Thanks to the good words of support.
Posts found: 1 to 25 of 91
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