To Chemo or not to Chemo
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Dear Roni-
I hope so much that you and your mom don’t spend time with regrets about chemo- I don’t even know what to say to alleviate the pain that comes with that terrible emotion.
As Marion says, take pride in the great care you take of your mom- your journey is a difficult one.thanks marion,
her physician did offer her chemo now, i think it is crazy, but true. she has been a the hospital all day in new york, i feel terrible as i have been at work all day seeing patients myself in maryland, therefore i am not physically there. i am doing my best, sometimes i feel like it wil lnever be enough and maybe she will never know jus thow much i love her. but i try and tell her several times a day. i appreciate your kind words marion, they do make me smile
hugs,
RoniRoni, how can the ONC order chemo if your Mom is in that kind of physical conditiion? I don’t get that. I can totally understand your frustration but be strong. You know it is very hard to tell a Mother what is going to be done instead of having her make the calls, I know I did it with my mother. I asked her if she trusted me and she said yes, so I said then this is what we are going to do. She had no choices as her dementia got worse. You might tell her she is too frail for chemo and she has 2 choices one to move to you the other to have palliative care. Done! You are taking charge now. What is the worse she can do? Give you time out! Sorry, couldn’t resist. I know you have the strength to do this and you need to keep yourself well mentally and physically to get through this with her. You are not abandoning her you are trying to get her to a good place for comfort and peace. Good luck with it all, we care, you know.
Good morning,
I can relate, my mother also was very against chemotherapy. My mother was diagnosed August 2010. She did not have chemo. She did radiation for 4 weeks in March and that knocked her out.
We just got PET results, and the disease has ventured to many locations, and now the physician has told her she has approx 6 months.
Now out of no where she is first “thinking about chemo” he has offered her Gem/Cisp, now ……..she says she has nothing to loose.
She is having an urgent blood transfusion this morning, and I am a bit beside myself. I told her it is okay to change her mind, but I kinda feel in my heart it is a bit late…and that she should just enjoy whatever time she has left.
Having to respect her decisions 15 months ago, when she denied and refused it, and now having to respect her change of heart, regarding considering it, I am beyong confused.
I am the only strong one in the family at this time. This roller Coaster is just the worst. I just want her to move into my house, move from NY to Maryland and spend whatever time she has left in my home and with my children.
To now start chemo……..she is 85 pounds and obviously her blood counts are totally off, hence the blood transfusion today. oh what to do, what is best, why, why, why, angry today, just tired of it all. Sometimes it gets to be too much, I think the chemo will destroy anytime she has left. Why now? I do not get it.
Stay in touch, sending love and hugs,
roni dinkes
ronidinkes@yahoo.com
or you can find me on facebookSowfi…..I have learned that often times this cancer does not need to be biopsied in order to be diagnosed. Physicians get a pretty good idea by looking at the behavior of the disease, patient
Hi,Sowfi,
“From these test they thought the the masses on her liver was secondary liver cancer. The masses were quite large. On the left there is a mass that occupies most of that side, there is also a mass in the IVa segment measuring 3.8 x 2.1cm…and then lots of little cysts on her right lobe about 1.1 cm. So yeah.. her liver wasn’t look that great!Now, although they could confirm that the liver masses was cancer… they couldn’t find a primary………
After a few more months of testing and prodding, they came to the agreement that the primary came from the bile duct… Which i just couldn’t understand due to the fact that they are no lesions of masses there… I asked if they could do a biopsy on the bile duct to confirm there diagnoses, but was refused because they said that they want anything to biopsy… there were no masses on the bile duct!!!..
So i ask… how can they confirm that she has primary Bile duct cancer, when there isn’t anything there???!!! This is something that we both have been wondering about… and they still haven’t given us a proper answer… so how can they be so sure….can anyone out there help with my question??!!!”To answer this question,please think about the entire bile duct system like a big oak tree in winter without leaves; there are lots lots of the little bile ducts in the liver(like the top branches or twigs of the tree) which where all the bile ducts started.The large bile ducts ie; the left and right hepatic bile ducts where Hilar CC located are like the large branches of the tree and the largest bile duct which is called the common bile duct is like the main trunk of the tree.
Therefore if the tumor originated from the small bile ducts inside the liver,then the cancer will be called bile duct cancer or to be more accurate,should called intrahepatic cholangiocarcinoma.
I hope the above info.helps.
God bless.Dear Sowfi-
I am sorry you are in such a bad place- the only thing I can offer is the book, Next to You, written by Gloria Hunniford, in a moving account of her daughter Caron’s battle with breast cancer. She had opted for complimentary therapy. It might help you deal with this somehow.sowfi, you don’t have to apologize for the length of your post and feel free to rant if you have the need. I feel your pain in dealing with an uncooperative patient. I can’t give you medical advise, other than to find the very best doctors with cc experience and hope mother gets cooperative. In my case, the diagnosis was confirmed after CT scans with a special endoscopy called an ERCP. During that procedure, stents were placed to relieve bile duct blockage, which in turn removed the yellow man look and fierce itching. This procedure has some risk and you want a good doctor doing it. For someone experienced in dealing with cc, it’s not necessary to remove any tissue.
I wish you good luck with a challenging patient! Keep us posted.
Hi Sowfi,
Welcome to the site. So sorry that you had to find us all and I am sorry alos to hear about your mum. But I am glad that you have joined us all as you’ve come to the right place for support and help. And no apologies are needed ever for the length of your post, and you are doing fine when it comes to your writting and saying what you feel.
Wow! That sure is some tale that you have to tell about your mum. Like Lainy, I’ve read tons of posts and have never read anything like what you and your mum have been through. I have a few questions if I may, I see from your post that you are in London, I am in the UK as well. Where was your mum diagnosed and did she think about seeking a second opinion and the possibility of trying other non-chemo treatments? Other doctors may be willing to do other treatments that do not involve chemo so perhaps you could discuss this with your mum?
When my dad was fighting his fight with CC and if he had chosed to go wholly down the same road that your mum has done then I would probably feel like you do now. I have nothing against alternative or other types of stuff, like diet etc but I don’t like the sound of doing that on it’s own as a treatment in it’s own right against tradition medicine/therapies. Like Percy says, surely herbal and dietary means should compliment westen medicine if they are used at all.
The side effects of this holistic thing do sound truly horrendous as you say, and has your mum at least seen her gp since she started this? If I was in your shoes, then I would do what I could right now to at least get your mum seen by her GP as this does not sound good. Also, maybe you could speak with your mum about quality of life, as right now it does not sound like your mum has much quality of life here and this seems to be down to this holitic program and the side effects. Also, what experience does this holistic guy have in treating cancer patients? I know you say he was recommended to your mum by someone else, but does he really have a lot of experience here? Have you searched his background on the internet, if not maybe you could do so and try to speak to your mum about what you find out about him. My apologies if what I am saying here is not much use to you, I’m just thinking out loud here. Wish that there was more that I could say that would help here.
I know this is such a tough situation that you are in right now, but please know that we are all here for you. If we can help in any way at all then please just ask and we will do what we can. And please keep us updated on how your mum does. We are here for you and we care.
Best wishes to you and your mum,
Gavin
Hi,
Please let your mom read this message if ok with you.Hi. Sowfi’s mom,
I am a patient,have the same disease as you for 30 months now. I am in the medical field for a long time but I am not a doctor and I am also using chinese herb for my cholangiocarcinoma in the past.
Chinese herbal medicine works for the body as a whole but not as the main or solo means of treatment for aggressive disease like tumor or cancer.Before I started my chemotherapy,I went to Toranto,Canada to consult one of my classmate who specialized in Chinese herbal medicine for treating cancer.He told me FRANKLY the best way is to have the chemo or radiation treatment for the cancer and let him to supplement with herbs to boost my immune system and energy.BTW, he got his degree from mainland China(the traditional way) and have over 30 years in experience.
In short ,at best, herbal medicine and dietary means are complimentary to the western medicine practice.
If you do not like to have chemo,there are other choice like radiation treatment to help you.Please consult the interventional radiologist for this.Nowadays,especially during the last 5 years,the chemotherapy have been improved a lot both in turns of positive treatment outcome and less side effects.
Dear sowfi’s mom, you are only 56,young by any standard,I am 61 and have more or less the same tumors on both the left and right liver;I tolerated the chemo well,and depends on the situation, currently a pill called Capecitabine (Xeloda in the U.S.) has been used ALONE to treat our cancer And I tolerated it well. So it is all not that bad to try chemo and you can stop it anytime because you are the patient and you have the right to do so.
If you like ,you can e mail me for more specific info.
God bless.Dear Sowfi, welcome to our wonderful and courageous family. OMG! What a trip you have been on and by the way it was a very good post. After thousands of posts I must admit this is a new one to me. The only thing I can suggest at this point is tough love! This is my thinking only, others may have some ideas as well but, IF it was me I would say, “Mom, how is this working for you? I see you fading away not from Cancer but from what this Holistic man is doing to you. You are on your own unless you go back to your Doctor to see if they can repair what this man has done.” I know it would be hard and then distance yourself for a week and see if she comes around to thinking more clear. I am sure a lot of this is from her fear of what is going to happen. If you have other support from family perhaps you could all do an intervention type of thing. Let’s see what others have to say, be strong and you have come to the right place as we all care.
Wow! Ok, So i have never done this before… so not sure how this ‘blogging’ thing works, and i must admit.. i am not the strongest writer, so… so I’m just gonna write what i want to say.
Ok, so my mother who is 56 years of age, was officially diagnosed with Cholangiocinoma (still can pronounce it!) on the 15th September….pretty rubbish right?!…and it still doesn’t quite feel real yet!
It all started back in June when my mother noticed that every time she ate food she had quite bad tunny cramps. Now, my mother is NEVER ill, so off she went to the doctors..where the doctors diagnosed her with Colic! … you know, the stuff that young babies get… they gave her some medicine for it, and after two or so weeks the pain went!… Great!
But Mum being Mum wanted to know more. The fact that is all her 56 years she had never been ill, or been on any kind of medication before didn’t sit right with her, so she asked her doctor (after many emails and phone calls) to book an appointment for an ultrasound… to see if they could could pin point the exact reason why she was having such discomfort.
The results of the scan showed that she did have some sort of mass on her liver. She went for further tests…CT scan, PET, Biopsy, Blood tests etc….
From these test they thought the the masses on her liver was secondary liver cancer. The masses were quite large. On the left there is a mass that occupies most of that side, there is also a mass in the IVa segment measuring 3.8 x 2.1cm…and then lots of little cysts on her right lobe about 1.1 cm. So yeah.. her liver wasn’t look that great!Now, although they could confirm that the liver masses was cancer… they couldn’t find a primary………
After a few more months of testing and prodding, they came to the agreement that the primary came from the bile duct… Which i just couldn’t understand due to the fact that they are no lesions of masses there… I asked if they could do a biopsy on the bile duct to confirm there diagnoses, but was refused because they said that they want anything to biopsy… there were no masses on the bile duct!!!..
So i ask… how can they confirm that she has primary Bile duct cancer, when there isn’t anything there???!!! This is something that we both have been wondering about… and they still haven’t given us a proper answer… so how can they be so sure….can anyone out there help with my question??!!!Anyhoo… so they suggested that Mum start Chemo ASAP. They wanted her to take GemCis chemo… and i thought that was all cool.. I thought mum would be all cool with starting Chemo. i had already had my diary out booking time off work to be with her during the treatments…UNTIL WE GOT TO THE CAR PARK!…
My mother, then decided to drop the bombshell to me that she didn’t want to do Chemo!!!! I was stunned!! My mother is a very very stubborn woman (thats where I get it from!) and no matter how much i tried to reason with her she didn’t want to hear it.. her mind was made up..she just didn’t want to do it!!She told me that she had been talking to a friend, who know a friend who was diagnosed with cancer, and was cured through holistic techniques???!!!! WHAT!!!!! I think that was the first time in my 30 years i actually swore at my mum.. I was just so mad.. she refused to listen to anything had to say about it.
She kept saying that Chemo is poison and that she didn’t want to be blasted with chemical poison..she was coming up with all crazy stuff..she kept saying that chemo would kill her, and that she didn’t want to spend days in bed, not able to walk! I had no idea mum had such strong views on Chemo…i suppose we never had to discuss it before that day!
I spent the next few weeks researching other treatments apart from chemo… Surgery, Radiation, Cyberknife, Biological treatments… I presented my research to her doctor..and he said that they were all not suitable due to the size of the tumours…. GemCis was the only thing they could offer her!!
A few days later we went to see this ‘Holistic’ guy all the way on the other side of London. I sooo didn’t want to go… I tried everything to try to make her change my mind..and im not proud of saying I did try to emotionally blackmail her into changing her mind… i screamed at her, i cried to her, i pleaded and begged with her..not to go down this route…… But i took a step back, and made myself grow up a bit, and kind of realised that i shouldn’t be spending my time fighting against her but should be there to support her…even though it went against EVERY FIBRE IN MY BODY!!!
So here we are talking to this holistic guy…listening to him completely ‘Slate’ (English Word – sorry) Chemo…saying how bad it is… how it would kill mum, how doctors and hospitals never see patients as individuals, but a number. You have no idea how much i wanted to punch him in his face! (Sorry! but i was ANGRY!!) but I didn’t… i just sat there, silently screaming internally!
He explained to mum that she will be cured, if she followed his strict diet from now on… OH, and if she handed over a big fat cheque for
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