My mum, fighting the fight
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Wesley…..I understand your frustration. This is the way I understand Stage 4:
although the lesions are diminishing in size, the cancer has spread to other organs or parts of the body, removing one cancerous area (in your Mom’s case a whipple procedure) does not address those lesions deemed inoperable and the circulating cancer cells in her blood stream.
At this time the treatment is effective in reducing tumor size and prevention of newly formed lesions, which is excellent news. Most likely your Mom will stay on the current treatment until it becomes ineffective or if side effects diminish her quality of life. It is then when other treatment options will be considered.
Seeking advice of more than one specialist to confirm a diagnosis and evaluate treatment options has become common in the US. It gives you the opportunity to consult with an expert who may or may not agree with the current treatment.
You may want to take a look at the AMMF website:
http://ammf.org.uk/Hugs,
MarionAn update for everyone, my mum just had her half way chemo CT scan, it has come back that the tumour has shrunk, it is now smaller that the initial scan that detected it at 2cm
She was declined the whipple due the likely hood that that it appeared to have spread to the lungs and also possibly the liver (this way detected when he stent was fitted). They have now come back and said that it appears to be nodules on the lungs as they have no changed in size at all, and they are unable to detect anything on her liver.
She has also now gained 1.5KG in weight, which is down to the cannabis oil. I know this because on the times she doesn’t take it due to having to do something she does not want to feel stoned for, she hardly eats! She still struggles taking it, but none the less she herself knows the benefits.
This is all very positive, but again it has left us all frustrated! After being given a stage 4 terminal diagnosis in January and being refused the whipple, we are now told actually it hasn’t spread. So what stage is it? Can she now be considered for the whipple? We are in the UK. I hear lots of people talk about 2nd and even 3rd opinions in the USA. Should that be something we need to do? Are worry is it might stop her current chemo treatment?
Any advise is appreciated!
Dear Wesley,
A warm welcome to our group. I hope you Mom continues to feel well – gaining weight during chemo is truly great!
Take care,
CatherineWesley…..a warm welcome to the club no one wants to belong to but is happy to have found. Since inception of this board (10 years) we continue to to embrace the most amazing, kind and caring people touched by this cancer. The collective wisdom derived from all helps us understand and support each other in dealing with a disease little understood, but gaining significant ground in current landscape of cancer research.
The very first grandchild in the family? Congratulations. How fortunate you are.All of us can relate to the emotional turmoil accompanying the cholangiocarcinoma diagnosis. But, as already experienced with your dear Mum, responses to current treatments have shown incredible results in many. Personally, I like to compare this cancer to that of a chronic disease.
Your Mum’s response to gem/cis is remarkable and the scan results will attest to that as well. Wonderful news! I am very much on board with your thoughts on Cannabis. Controversial as it may be, I believe it provides significant benefits to a variety of symptoms.
Biliary stents are crucial in reducing bilirubin, but patients must carefully watch for developing fevers.
Please take a look at the below link and consider downloading the accompanying card.
http://cholangiocarcinoma.org/biliary-emergency-information-card/Wishing for continued success, dear Wesley, and looking for many more conversations coming our way.
Hugs,
MarionWesley,
Welcome to our group, although, of course I wish you didn’t have reason to be here. It sounds as though your mother is having a good response to the gem/cis based on the dramatic improvement in her markers (I am assuming that’s the CA 19-9). I’m so glad she tolerated it well and is feeling okay. Please keep us posted on her progress.
Debbie
My 59 year old mother was diagnosed in Jan this year which was originally thought to be pancreatic cancer with a tumour estimated at 2cm in a location that was operable. A PET scan then revealed what looked like nodules on the lungs, we were then told they could not operate based on these findings and very shortly after my mum became quite jaundice. She had a stent fitted which revealed it was actually colangiocarcinoma and a swift terminal diagnosis followed with an estimate of a short number of years. This for all of us came as a massive below and has turned our lives upside down. I myself am expecting my first child in 8 weeks time, the first grand child of the family.
She has since received 6 cycles of gem/cist which she has dealt with amazingly. My mum has never smoked, rarely drinks and has never taken drugs, despite seeming very unfair for her, she is fighting fit. Apart from a recent infections and constant issues with her PICC line, we have all been amazed at how well she has coped with the chemo drugs.
She is also taking alternative treatment. By this I mean cannabis oil and a range of dietary supplements. Think what you want of cannabis (we are in the UK where it is still illegal), and I do not proclaim that it is a miracle cure. She has actually gained weight since starting chemo, if nothing else it is helping in that area, and I wonder if they fact she has had no sickness, the two are not related?
Her markers have come down from 1500 to 100 and she looks very well. You would not have any idea that she has cancer. We are currently awaiting her half way scan.
I will update on progress now that I have found this wonderful forum.
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