Forum Replies Created
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.
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.
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.
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…..
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