Tagged: Stopped medicines
May 12, 2020 at 3:18 pm #100008vtkbParticipant
was your sister ever considered for just a resection instead of transplant? If the cancer hasnt spread outside the liver she may still be a candidate. My wife has UC, PSC (diagnosed during her resection) and ICC diagnosed when she was 36. Shes now 39, and the resection gave us 1.5 years of NED before it came back with mets to the skull spine and lungs. Granted, the extent of the PSC may make your sister inelgible/not a surgical candidate, but its worth asking surgeons in the area. Good luck.
May 12, 2020 at 2:14 am #99998PennycastleParticipant
- This reply was modified 6 months, 3 weeks ago by vtkb.
I am so sorry that your sister and her little one are having such a torrid time.
My son was diagnosed at stage 4 with little chance of success because the CC had already spread to his lymph nodes. He undertook Yutrium 90 (Y90 or SIRTs) which are radioactive beads inserted directly into the liver. If she was a transplant candidate it might be worth asking her team if this could drive back the cancer long enough for her to get back on the list.
In our case, the Y90 was only ever palliative but it gave us an extra 6 months with our son in which he was well enough that strangers would have not known he was ill. The procedure was expensive but minimally invasive (done through angiogram).
Again this was palliative but Joshua also had an Aruyvedic doctor – she didn’t claim to able able to cure the CC but her treatments gave him a lot of relief from the symptoms and side effects of treatment.
Again – I am so very sorry that CC has entered your family’s life.
PMay 12, 2020 at 12:08 am #99997GetwellsoonParticipant
hope all is well.
thank you for your informative respond.
they suggest to stop meds all together since they say meds are not working on her.
But I have a feeling that she will be alright, and she will have her own miracle survivor story to talk about.
I hope and wish that they can find a cure for this PSC liver disease soon.
ThanksMay 11, 2020 at 11:03 pm #99996bglassModerator
Thank you for letting us know how your sister is doing. I am so sorry to hear that her cancer is not responding to treatment, and that the hoped-for liver transplant was not possible. I wish the news from her doctor had been better. If her doctor is recommending no more treatment, and she disagrees with that, your sister may wish to seek a qualified second medical opinion from someone who knows our rare cancer well. Some patients enroll in clinical trials – something she should ask about. Her doctors can advise if she can qualify for a trial, which will take into account her current health status.
One question I was wondering reading your posting is whether your sister’s doctor wants to stop treatment altogether, or if this could be temporary until her blood levels recover and the low potassium improves.
If your sister agrees with her doctors now or in the future that she does not wish to pursue further treatment, medical resources such as palliative care or hospice programs would be available to help maintain her quality of life and address any pain or other concerns she is feeling. These decisions are beyond difficult, but I am sure your sister’s path is made easier having your loving support and advice. Please know our community is here for your family, and will be sending prayers and best wishes your way. Please stay in touch.
Take care, regards, MaryMay 11, 2020 at 2:51 pm #99995GetwellsoonParticipant
my 33 years old sister was diagnosed with bile duct cancer and PSC liver disease on February 2nd 2019 right after she delivered her first baby. The tumor was only 2 cm and they were able to burn the tumor with laser and they put her on liver transplant list. After few months they called her for liver transplant but they told her it was too big for her so she came back home and after one month they found out that she had a tumor in her liver that they haven’t seen in any ctscan or MRI and they noticed it when they wanted to change her bile duct stent. After few months of low dose chemo (since her bilirubin is always high and she is always jaundiced ) they put her back on liver transplant list since the tumor in her liver has shrinked. Again after few months they noticed that even though she was doing chemo and was shrinking but the cancer has spread and they took her out of liver transplant list again and now she has stage 4 bile duct cancer and psc liver disease. She is a very positive and strong girl. But now they told her even changing the chemo does not help her since all her lab results are a mess and she has very very very low potassium. Anyway, now they say meds don’t work and they want to stop her meds. She also has ulcerative colitis same as I do. Any suggestions or alternative herbal treatments that worked for others?
Any help would be appreciated.
p.s she is in los angeles
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