Update and request for advice
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Thanks elmoks! It is amazing to me as well how many young people are here struggling with this. Good luck to you and your mom too. You guys are in my thoughts and prayers as well.
April, my mom is 54 and was diagnosed with CC almost 1 year ago. Due to where her tumor is they were unable to do surgery. It’s so crazy how this disease affects so many young people, and so quickly. I know it’s hard to stay positive, but we just have to do it, for our moms! GOOD LUCK and I will add you and your mom to my prayers!
Yes! Funny you mentioned that because I was reading other posts – specifically by you and saw the milk thistle! I sent the info to my mom this morning and she said that she had looked it up also after seeing it mentioned here and there on the website and she started it a few days ago.
This website is such a great resource!
Have you considered Milk Thistle to help with your moms liver values? I think it helped with mine.
Kris
Thanks Kris!
We are pursuing the PDT treatment in Philadelphia. I have phoned them and we are working to get her records and scans sent there to see if she is a candidate.
The doctor told her early this week that even though she was approved for the Y-90 microspheres that her liver function isn’t good enough. Similarly the clinical trial she is supposed to start on in early March has said that if she can’t get her liver function back in line, they will have to eliminate her from the study. It has been a rough week.
Though we are hopeful that if she can go get the Photodynamic Therapy that might help her get her liver function back in line a bit and then pursue the microspheres.
HI April.
It sounds like you guys are having a bit of a whirlwind right now. Hopefully your mom is comfortable now that the fluid has been drained and has a little relief knowing it wasnt malignant.Please keep us posted on how your moms treatment prgresses.
Kris
Hi April,
Thanks for the update and for sharing your news with us. I am hoping for more good news from the angiogram results and also that the trial treatment goes well for your mum.
Stay strong and stay positive and I am keeping my fingers crossed for some good news for you and your mum.
My best wishes to you both,
Gavin
I want to thank everyone for the wonderful thoughts and sentiments.
We had some positive news that has raised her spirits since Wednesday that at least the fluid is not malignant.
I will look into the photodynamic therapy and thanks to all who suggested that. We are still waiting for the results from the angiogram to determine if the microspheres are an option.
She has enrolled in a clinical trial that her oncologist is one of the PIs on and that starts the first week in March, she will be off chemo for the next two weeks as the “wash out” period for that trial.
The periods of time where she isn’t treating the cancer in some way are always the worst on her. She wants to be doing something to fight it.
I’m so sorry to hear what your mom is going through. You are at the right place and hopefully you will hear good news from the PA tomorrow. I hope she is a candidate for Y-90 ( microspheres) because from what I have heard it gives results and does not have any side effects and can be well tollerated. Keep us posted and we will be thinking of you and your family tomorrow.
ashleyHi April,
Thank you for the update on your mum and I am so sorry to hear what the two of are going through right now. I went through the same with my dad so I understand how tough this is for you both.
PDT was my dads only treatment, but as I understand it, it is more regularly used here in the UK than it is in America. If there is anything I can do to help with regards to my dads experiences with it then please don’t hesitate to ask me and I will help if I can. Here is a link from the Mayo clinic that gives a breif overview as to what it involves.
http://www.mayoclinic.org/photodynamic-therapy/
My dad never had chemo, so I can’t compare his side effects of PDT to chemo. But after his PDT treatment, the only real side effct that he had was that he had to cover up when he went outside due to the sensitivity of his skin with sunlight. I know the link I posted states that this lasts for 4 weeks, but in my dads case, this lasted for about 2 months. If you want me to go into his experiences in much more detail then please just ask and I will happily do so.
I hope that you and your mum get more information soon and can get a treatment plan sorted out.
My best wishes to you both,
Gavin
April,
I am so sorry about your mom and can epathize with how you feel. We are just getting a game plan in place and my sister and I are relentless within my dad’s wishes. I agree with Margaret just don’t take no for an answer. My dad is letting my sister and I run his medical care for him as he feels he and his wife are not capable of doing it. That has made it a little easier for us. My most warmest and positive thoughts to both you and your mom. My dad always worries about me and my sister saying we need to take care of ourselves too we don’t do him any good if we are not the best we can be. And I truly believe that!
April,
I am sorry you and your mum are going through this very hard time.The ascites is not good and does sometimes indicate a worsening of the disease overall.A different stage in fact.You are being a wonderful support for your mother,try to look after yourself too. JanetHi April and sorry about your Mother. I think one of the worst is when there is no game plan in progress as you feel so helpless. Sometimes it takes a little time to develop the best plan. As far as cyber knife is concerned, Teddy had it,
I don’t know the max on how many tumors I do know that it must be under 7cm. You just might want to consult with a radiologist on how many can be zapped at a time. Please keep us posted.April,
So sorry to hear about your mom. You have to stay positive for your mom. This site is the best site for CC on the internet. I am my husband’s caretaker and this site has given me the courage that I need to continue to be upbeat and optomistic for my husband.I often print and read other’s posts on this site to help give Tom the encouragement to continue fighting the good fight against this terrible disease.
Have you and your mom considered getting second opinoins?
My advice would be to do all the research that you can, ask all the questions that you can think of. Never take no for an answer. If you feel that your mom is not getting the care she deserves then run to another doctor!
My husband has not encountered ascites but he has had many bumps in the road in his journey with CC. You can read about his journey under my login name mlepp0416 (My husband and cholangiocarcinoma).
His original oncologist told him to go home and get his affairs in order and that radiation and chemo would not work. We did not accept that. (never take no for an answer). His bilirubin level went to 24.7. After 28 radiation treatments his bilirubin is now down to 8.1.
I have read many posts of success on this site. There are many people who are proving their doctors wrong! Remember that people do NOT have an expiration date stamped on the bottom of their feet or on their butt. And keep in mind, that there are not many doctors or oncologist that have ever encountered this type of cancer.
Tom’s original oncologist had never seen anyone with this type cancer (and he was an Asian Doctor) and he simply did not know how to try to fight it so he took the easy way out and basically told him to go home and die.
Prayers will be coming your mom’s way from Wisconsin!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
April,
Thanks for updating us on your Mom, I am sorry she is facing this and feeling down and I don’t know what to say that can make you or your mom feel better. I think one of the hardest things is feeling like you are being betrayed by your own body and the loss of control you feel over what is happening.
The only advice I can offer is that I wish my mom could have received photodynamic therapy (PDT). I am not sure if yor mother is a candidate for PDT but the side effects are supposed to be more tolerable than chemo and to me that means that whatever time your mother has remaining (and that may be years) would be more quality time.
Unfortunately there are not many places that offer PDT in the States, here are some posts on this treatment and you can also put PDT or photodynamic in the Search Forum function:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=3851
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=1455
I hope this is helpful.
Patty
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