Not a good day
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Hi Linda.
Thank you for mentioning there are other treatments Dad could try if this one doesn’t work. It has been on my mind the last few days. I try to keep positive and push the negativeness of the first Onc out of my mind but somedays it’s hard to do. This had made me feel much better.
I will never give up! My dad is my world and I will fight this with him.
Best wishes
Andie,
Way to go! Great that you got that second opinion, and it was with someone who had more compassion than the first onc. With regard to the anti-biotic…..yes, chemo can lower the white blood count making your more “susceptible” to infection. It doesn’t necessarily mean you will GET one, just that you can be more prone to getting one. Better safe than sorry, as you don’t need something else added to the mix. Remember too, that there are MANY different chemo drugs, not just Gem / Cis, and the first onc. was wrong if he told you that if it didn’t work “there was nothing else to try”. Many on this board didn’t respond to one where another worked.
Keep on gaining knowledge on how to fight this thing and never give up!
My best wishes in your fight.
Linda Z.
Andie…tears of hope and joy are ALWAYS good….I’m glad the doc agreed on the absence of the expiration date!
Margaret
Andie,
I’m glad things went much better today and that you and your Dad are feeling more positive about everything. It sounds like this doctor is a keeper!
Keep posting and let us know how things are going.Darla
Well, what a difference a doctor makes!!! and the one we saw today was caring, lovely and most important POSITIVE!
The doctor was the surgeon who had put my Dads stent in, and whilst he told us the biopsy was positive for CC, the tumour was small, contained and had not spread. He had been involved in the ABC trial and was positive my dad would benefit from this treatment.
We told him about our experience with the oncologist Wednesday and he was not impressed. He said my Dad hasn’t got an expiry date, no one can say how long but he has known people survive 4 years and more. It can be and aggressive cancer but at the same time it can be slow growing and kept at bay, no one knows but he will do all he can to help my Dad. He said whilst the Oncologist isn’t a specialist in this area and if he is so even though the Chemo will be at our local hospital he will at my Dads request look at the future scans and treatment plans.
He also told us that Dad should be on a low dose antibiotic whilst on Chemo as this will help avoid infections, something that they hadn’t told us, and also to go and get his blood test the day before the chemo to help speed things up on the day.
My Dad and I feel much better today, and for once I have shed tears of hope and joy.
Thank you everyone and best wishes to all of you.
Way to go Andie!
It sounds as if you are on the right track. Try to stay positive and keep setting goals. Your Daddy is so lucky to have you with him!
I’m sending lots of love and hugs!
Pam
(I think my son’s comment which I use as my signature says it all!)
Thank you Margaret!!!
You made me laugh out loud with the butt stamp!!
Feel much more positive today. Dad is continuning to put on weight and do little jobs such as pottering in the garden, shopping, going for walks and even decorating. If we took any notice of the first doctor he really should be here, they told us no treatment and months and he started having symptons February!! So we are holding onto that.
I knew more than the Oncologist about CC, which shocked him.
We are going to see the Docotors at the Liver clinic today who did my Dads stent and EUS/Biopsy. We already know the biopsy report as the Oncologist at our local hospital had a copy of it on Wednesday. Hopefully they will be more positive as looking back at wednesday I think because my Dad is classed as terminal due to being inoperable the Oncologist thought it was a waste of time having treatment. also when is he classing 11 months from, february when symptons started, April when diagnosed or after treatment finished!! Our goal is to go back in 11 months and prove him wrong!!
Take care and many best wishes to you and your family.
Andie:
Welcome! All I can say is when a doctor comes up with a term for life, such as 6 months (as in my husband’s case) or 11 months as in your dad’s case, it generally means that they really don’t have a clue! My husband Tom’s ‘old’ oncologist told us that radiation and chemo were not an option and that he should just go home and get his life in order.Needless to say, we did not accept that and sought 2nd, 3rd and 4th opinoins. Although each opinoin agreed that his new tumor was inoperable because of it’s location, the last three disagreed with the no radiation and no chemo. Tom has had 28 radiation treatments and three rounds of chemo and his new tumor is dead, his tumor markers have come down drastically, as has all of his other numbers including the Alk Phosphate level that was 10 times elevated. Tom is now in his 7th month and still going strong! He does have an external drain bag to drain the excess bile from his system and to keep his bilirubin level within normal range (because the ‘dead’ tumor is still blocking the bile duct) but other than that he is doing almost all the things he did previously.
I’d bet that if you pulled your dad’s pants down and checked his butt you would NOT see an expiration date stamped there! Only God knows when our check out time is. The doctors are only ‘practicing’ medicine!
So, my advice to your dad is to continue living his life as normally as he possibily can, never take no for an answer but instead ask what else can we try? Think outside the box, do your research, ask all the questions that you can, get second opinoins. Make sure that you have a doctor who has experience with CC. Many if not most doctors have never encountered CC before therefore they do NOT know how to treat it or what to expect! The first doctor that wanted to do Tom’s liver resection had never encountered CC before, and had only done about 20 resections for other types of liver cancer. Needless to say we found a doctor who had done hundreds of liver resections and allowed her to preform the surgery.
If surgery is not an option, then you need to be discussing what others options there are.
Go with God, and KEEP KICKIN’ THAT cancer.
Margaret (My husband and Cholangiocarcinoma)
Kris……I don’t believe that you are that unusual with your thoughts. I also believe that an illness makes us aware of the preciousness of life. Most of us will encounter the darker side and I think for that to be alright as long as we can find a balance within. This is equally as important for all touched by this disease including, patients, caregivers, and other family members and friends.
This reminds me of the young man stuck in the mountains. He choose to cut off his arm in order to free himself. He is here to tell his story only, by making a decision many of us could not even contemplate to even think of.
He hoped and acted on that hope in order to survive. Hope does not come upon us; it is something we need to reach for.
This disease is gaining in momentum by the way of awareness, research, and treatment options something, inconceivable a few years back. I will not give up on that hope. I strongly believe that each day brings us closer to a major break-through with this disease. Hang on to that cliff, dear Kris.
Love,
MarionKris
Your attitude and your positive thinking are definitely a bright beacon of light for those of us fighting this disease. I had surgery in January 2010 clear ct scan in April – having 6 months adjuvant chemo with another ct scheduled for end of July. You are right we need to keep on hanging in there may be new treatments out there for us in a matter of months or years. They are making great strides with other types of cancer maybe our breakthrough will be soon. Keep posting!
Kris,
You are definately not a statistic. No one knows what is to come for any of us. Everyone is different and things are changing so much. Keep your attitude of being realistically postive. It has worked for 3 1/2 years and I hope it will work for many more.
Thinking of you.
DarlaAndie,
Sometimes I hate doctors. Some really think they are being helpful. I try to stay realistically positive. For me that means coming to terms with being terminal now, but also accepting that neither I nor more doctors really know what that means. Does it mean 5 months or 5 years? There is a difference.Yesterday, I was in a complete funk because I was reading too much on cc again and came across some shocking statistics. I am at 3 1/2 since my original diagnosis and 1 1/2 years since my reoccurance. Statistically, I shouldnt be here, but I am and I dont plan on going anywhere soon. None of my doctors have given me any time frame and I havent asked. They can tell me what might and what probably will happen but not what WILL happen. Perhaps I have another 3 years in me and by that time something new will come along. They dont know, I dont know, and your dads doctors dont know either.
Kris
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