April 18, 2008 at 10:20 am #19733grafsjMember
Hang in there Jolene. This is really a rough row to hoe. I’m offering up prayers for you now. Rely on Jesus. He’ll get you through this.
steveApril 17, 2008 at 10:10 pm #19732daddysgirl-2Member
Hello. My dad was diagnosed with cholangiocarcinoma Jan 28. I guess it has already spread to his spine. We were told he has 4-6 months, maybe a year. We are told that the chemo he is receiving is for palliative purposes solely. After visiting with a radiology oncologist who had confirmed radiology was not an option for dad, we began chemo. He is set to have his CT scan tomorrow having completed 2 rounds of chemo (though he missed one treatment because he was in pain, and another treatment-yesterday-because his BUN was elevated and his platelets were low–below 100,000) Dad has diabetes, and because of the location of the tumors (?) he is unable to stand/walk.
Dad is returning home in one week from the nursing home because the 100 day medicare rule will be spent, and I will be caring for him and for my mom who has advanced Parkinson’s Disease. My husband and I feel we are able to manage this undertaking…in our line of work (persons with DD), we have cared for persons with varying degrees of health issues and into their end of life care. I have also taken care of elder extended family members who were at end of life, so I am not a stranger to this situation. HOWEVER…this is my dad…who cared for me, supported me, loves me and so on and so forth and I am having such a difficult time being hopeful at the same time being able to realistically manage his care, as well as mother’s care.
I do have faith…a strong faith…but there are days, such as today, right now, that I feel so alone and helpless.
Thank you for this opportunity to “let it out” and most especially for this forum to be with others whose lives are affected by CC. Each of you will be remembered in my daily prayers. God bless you and your journey.
JoleneApril 8, 2008 at 8:09 pm #19731lalgroupParticipant
My Mother who has been the my greatest support and best friend was diagnosed with CC in June 2007 (on my sons birthday). The doctors in the States gave her 3-6months, the one in Switzerland recomended we do nothing barring the stent procedure to alleviate her jaundice. When we arrived in India the first doctor asked if she were a brave woman—-we assumed he was talking about the uphill task of surgery and treatment etc. (still just 5 days into this horrible disease)
told her she had a year. We went to another who performed the stent procedure (at admittance her bilirubin count was 29). Subsequently I asked him what the next step was he looked at me blankly—-said the stent should last 7-8months and that should be adequate (meaning that the stent would outlive her).
We started on a regimen of palliative chemotherapy. There have been many ups and downs, blood counts falling and rising, hopes being dashed and then sucked back up, constant soul searching as to whether I was doing the best for her, the mounting frustration of finding wall after wall that blocked all signs of hope…………
But she is with us—-weak and tired but full of beans and planning a trip to see her daughter in New York, in June.
It is nine months now—I hope a new life is being born!!!!!!!!!!!!
When I felt there was no hope my Mother gave me hope, when there was no hope for my Mother, God gave her hope.
Courage to all.
May God Bless those who need it most.April 8, 2008 at 4:07 pm #19730tanolandMember
My poor sister has not even started any treatment yet. After getting diagnosed a month ago, she spent a week at the Mayo Clinic. She sees her doctor tomorrow to determine when they will start Chemo.
They said that it is too far gone to even consider radiation and the Mayo Clinic agreed. It is also in her lymph nodes.
I feel so dumb when it comes to this stuff. We didn’t even know she had cancer until 6 weeks ago and last night she was in severe pain from this tumor on her liver. I hate the waiting and waiting and waiting. I am just ready to start treatment.
I just have this horrible feeling that she won’t last that long. And I am really scared.April 6, 2008 at 6:41 am #19729devoncatParticipant
What great news. If it keeps shrinking, you can go back and ask again if surgery is an option. It has happened before to other members. And it is also good to hear about things coming down the pipeline that appear to be working.
No advice, just try to be there for your sister. My sister and I are very close and she becomes so angry with me if I dont do something they way she would and it hurts. So my advice, just be supportive.
KrisApril 6, 2008 at 3:17 am #19728stanford23Member
I’d like to share with you about our experience with cc. My husband-John was diagnosed with cc in Dec 2007. We went to Mayo Clinic with depressed news-unresectable and no radiation because tumor attached to main vein and artery. Chemotherapy was only recommended for now. We came home and went to our university hospital. Doctors in liver transplant clinic reviewed CT scan and MRI and also denied surgery and radiation. We saw a Oncolgist and he offered the phase II clinic trial. After one round treatment (8weeks), CT scan showed liver tumor 25% decreased.
So far, we are happy with the treatment. But John has a few problems contiuned, like his weight done, poor appetite, bloating after eating, and abdminal pain.
AliceApril 5, 2008 at 1:46 am #19727jeffgMember
Tanoland… I know I have responded before about your Sister. What Hospital is she going to ? Have you got a second opinion? This type of cancer is considered systemic (in the blood) and chemo and radiation is about all that there is to offer. Did they consider stopping chemo and try some radiation. You said the doctors think her bones would not withstand the radiation? what reason did they give for that, as some people have had chemo and radiation together. Not being there and seeing her reports is hard for anyone to suggest what you should do other than get the extra opinions. Sometimes that has made a difference in which direction to go. If her scans show a lot of mets and it is through out her bones, chemo may be her only chance at prolonging her life and at least putting up a fight. Did anyone discuss possible bone marrow transplant? Please don’t try to do this alone. Get some help from a cancer support group locally. Just call them and talk with them. Call a member of the clergy and talk about it. You have good reason to be scared and more of a reason to hate the cancer. Your Sister is going to be needing your support and love through this trying and infortunate time. Please get a professional other than her chemo doctor involved. You’ll find tremendous help and some understanding just by making a few calls. I’m so sorry this disease has come in to your sister’s life. Make those calls for help and get another opinion. You have nothing to loose by doing so. I wish your sister and you only the best possible results.
Jeff G.April 4, 2008 at 10:02 pm #1180tanolandMember
Help. My sister has just been diagnosed with this awful cancer. It has spread to her bones and lymph nodes. The only treatment they offer is Chemotherapy. She is 41. I hate it because I am really scared. I have never dealt with cancer in my life, but they say this will kill her. Any help or advice?
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