Conflicting information on CC
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I appreciate all the feedback I received related to my question about fast vs slow-growing CC. Here we are just a few days from Christmas which would have been the second doctor’s prognosis of 12 months yet my energy and appetite continue to be normal if not actually better than before diagnosis. I could use the weight loss but I have been encouraged to maintain my current weight. I’ m thankful now that my oncologists did not recommend aggressive therapy when they evaluated all of the factors. The lymph nodes in my abdomen did not light up on PET which confused the picture initially but that was probably the first clue that I had the slow-growing type. Chemo of gem/cis did not affect me the way so many others experienced it, no nausea, some fatigue, decreased white count twice but nothing more. My doctor gave me 3 anti-nausea meds before and during chemo which may have been more effective for me due to the fact that my cancer is in my left lobe and doesn’t appear to be in the right lobe. At last CAT scan there was no further enlargement of the nodes in my abdomen and no others have been obviously enlarged since. I proposed to my oncologist on my last visit that maybe my autoimmune diagnoses (diabetes, MS, arthritis, etc) may have put my immune system into hyperimmune status and hold my cancer at bay for the moment. I have mentioned before that I also take 10000 IU of Vitamin D3 daily. I don’t know if it has any effect but told my doctors at the outset that I would not quit taking it. I pray for all of you on this site and particularly the families who must watch their loved ones suffer. May God’s light shine on all of you during these difficult times.
Dec. 12, 2010
Dear Charlea,
Count yourself lucky (sort of) that you still have energy, and perhaps even your appetite. Enjoy your pain/symptom free life for as long as you can. Really, live it up!
My sister is seemingly going downhill quickly now. A month ago, she was still very robust, but now, even her head scarf just sits loosely around her head while she can barely get around. She has lost a lot of weight, clearly noticeable in her upper torso and face. Her abdomen just gets bigger, and she has around 4 or so liters (~16 cups) drained every 3
Charlea,
My mum was diagnosed with extrahepatic cc in oct 2007, she was absolutely normal after her bypass surgery and stents without any symptoms till march 2010, she passed away last month. There definitely does seem to be 2 types of cc, one very fast and the other slow.. It hurt me so much when I read posts here about a lot of people dying pretty fast from diagnosis.
You are def lucky to have a slow growing cc, and I pray and hope for your well being!
Varun
I have the slow growing type of cancer. I was diagnosed in August of 2007. The cancer is now in my lungs, peritoneum, bile ducts, and liver. The largest tumor that shows up on the CT scan is only 2-3 cm. The left lobe of my liver is not functioning.
In spite of that, I continue to live a full life, and like the song says “live like you are dying”.
God has graciously preserved my life so far and I am grateful.
I also appreciate the discussion of slow growing vs. fast growing. My husband has a very fast growing tumor. He was diagnosed in August 2010, but in August 2009 he had a CT scan (without contrast) that did not show anything. In August 2010, one year later, he had tumors in the bottom half of his liver measuring 12.4 cm by 12.4 cm and in the upper lobe “innumerable tumors” measuring a conglomerate of 11.4 cm by 11.4 cm. He is not a surgical candidate. He has failed considering each month and this past week has hardly been out of bed at all and is using a cane even to walk to the kitchen. We are praying that he will bounce back and have some good days again, but we really don’t know. It has helped to understand fast growing vs. slow as I didn’t understand why some people lived over 5 years after diagnosis and we will be lucky to get 6 or 7 months. Blessings, Susan
It was really helpful to hear from so many of you. Reading what is said to others has given me a much greater understanding of the disease itself but more importantly I have been deeply impressed by the caring extended to individuals, especially those who are still reeling from the diagnosis. I see what people go through and cannot believe the incredible courage displayed. I can only hope I can be as strong as you all have been. May God bless you…..
Charlea
I’m pleased you started this discussion on aggresive versus slow-growing tumours, as I believe that the rate of growth of CC is determined by the type of cell infected by the cancer. I’m often surprised/shocked that so many patients die so soon after diagnoses and I can’t help wondering if a greater understand of this area would help treatment/prognosis.By way of background information, I was diagnosed in September 2009, had a whipples in May 2010 and got the all-clear in August 2010. The pathology report on my resected tumour showed that chromaffin-like cells were infected. While these cells are present in every organ in the body (including the bile-duct), they are most common in the neuro-endocrine system (system of glands including the pancreas). As I understand it from my surgeon, cancers in chromaffin cells are slow-growing and if the cancer spreads it is most likely to spread within the neuro-endocrine system (ie to the pancreas, thyroid gland etc etc).
Is there a correlation between the cells infected and the rate of growth of CC.
Gerry
I have to agree with everyone else. Live your life as normal as you can for as long as you can. My husband’s CC was also interhepatic and very slow growing. His first symptoms showed up less than 2 months before he passed away. Until then he lived a full and active life.. At first I was upset that it had not been found sooner, but now I feel it was a blessing we didn’t know. He lived his live to the fullest until those last weeks . There is no rhyme or reason, no right or wrong when dealing with CC it treats everything and everyone differently. Don’t wait to see what will happen next. Just live your life and be happy.
Love & Hugs,
DarlaMy husband felt good on chemo. He had the Gemzar/cisplatin and did not suffer weakness, nausea, hair loss. Don’t wait for the other shoe to drop – it will, over and over. Celebrate every good day and hold tight on the hard days. Blessings, Susan
We like to call those slow ones “lazy” tumors. Mine were lazy until I tried radiation which the tumprs ate like baseball players on steroids.
You never know how your tumor will respond to things, so you cant blame yourself. CC is sneaky and you can only try.
Kris
Charlea, One day at a time, but make future plans also. Like they say, no expiration date and no Dr knows the details of time. They can make educated guesses from general evaluations, but each person is individual and each person has the will to live (some strong and some not so strong). Just enjoy all of the good days and do things you enjoy, make memories with your family that will sustain them later when your gone.
my mom had no symptoms until after her 2nd chemoembolization! I suggest do not have another one and enjoy the time you have. After her 2nd one. She was never able to get over the sickness, has lost 35 lbs and has a very short time left. Be thankful yours is growing slow. Prayers your way.
I agrees with Patty, news like yours is very welcome.
My Dad has extrahepatic cc, he is very badly jaudiced and was given 3-4 months Sept after being told no further stents could be fitted. He is doing amazingly well considering and I pray everyday it continues. He too is pain free and is still eating, he doesn’t itch, hasn’t got pale stools, he isn’t ticking all the boxes he should. I like to think like Lainys Teddy, he is a miracle man. Also dad was told in Apri when diagnosedl he had 2 months max without treatment, Dad never had treatment due to high bilirubin and he’s still here. No one has an expiry date stamped on them, doctors aren’t God.
My friend died last Friday, out of the blue with a bleed on the brain, you really need to live a day at a time and not worry about the future. I know it’s hard but life really is too short to be worrying about the what ifs and whens.
Best wishes
Andrea
Charlea,
This is a guilt-free zone and we celebrate your good news as it keeps us going so please keep it coming.
Patty
p.s. And try not to dwell on the other shoe. I think the best way to do this is to keep busy so go ahead and make plans, you can’t really know what lies ahead but you can decide that you won’t allow the unknown to decide for you.
I spoke with my oncologist yesterday as I am being followed monthly but not receiving any treatment. I was given 6-12 months after being diagnosed in January of this year. However, this is month twelve and I have remained without symptoms essentially even though I am stage IV. I have intrahepatic CC in the left lobe with at least two enlarged significant lymph nodes in my abdomen. I had gem/cis treatment which did not show any effect and then had a chemoembolization which did appear to cut the circulation to the tumor. I read the histories of so many people on the website and it appears that their courses are so much different than what I am experiencing. My oncologist said that there are two types of CC, one is aggressive and the other is very slow growing which makes the CC unresponsive to therapy because the cell multiplication is so slow. Has anyone else had this same type? I read about the others who seem to suffer so and I almost feel guilty that I can be at this stage and have no pain, nausea or other symptoms. I have not been impacted in my energy levels either other than I felt better than I had in several years after the round of chemo that apparently did not work. I keep waiting for the other shoe to fall……
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