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I was also sorry to hear your CCA made a reappearance after such a long absence. Thankfully, you and your doctors were still watchful and saw the movement in CA 19-9. Some of our doctors seem to believe a CCA patient can be cut loose after a certain milestone is reached, but this cancer demands that patients stay alert.
The study Katrina is participating in does sound promising (and a big thank you to Katrina for posting on this). I looked at clinicaltrials.gov to see what is available in Maryland, and some of the trials other patients have reported about on this board have sites here (I am also in Maryland). Apparently INCB054828, AG-120 and pembrolizumab studies are recruiting in Maryland, possibly at Hopkins. If you are concerned about travel, you might look up on the clinicaltrials.gov website which trials are closer by, then ask Dr. Javle about them when you speak with him. If you search a treatment name on this board, you may find postings re other patients’ experiences with them.
I had the same question as Melinda – have your doctors discussed genomic testing with you? CCA treatment has changed a lot since you were first diagnosed. The testing may be able to identify genomic defects for which there are targeted treatments available.
Please stay in touch as you navigate treatment options, and best wishes that this goes smoothly with good results.
My impression is that a single chemo may be used if a patient has difficulties tolerating regimen(s) involving multiple drugs.
From my own experience with capecitabine, it is very nice to have chemo in pill form rather than having to go in for infusions. I found the side effects to be less onerous that what is reported for the platinum chemos or even the gemcitabine. But it may be good to investigate taking preventive steps to stave off or reduce the possible famous Xeloda side effect — hand-foot syndrome — that some (not all) will experience after a while. It was recommended to me as soon as I started the Xeloda to use a urea-based cream on hands and feet, avoid hot water such as in showers and dishwashing, and cut down on walking since I walk a lot. The foot cream I used was a common brand sold at the local pharmacy. There is a lot of useful advice on managing hand-foot syndrome available on the web.
Hoping you and your family, and others living or receiving treatment in the Houston area are safe and able to receive needed services.
Thoughts and prayers are with you during this difficult time.
This is indeed good news. You and your spouse must feel so relieved to see your mother-in-law more upbeat and feeling better.
I hope the capecitabine treatment goes well.
Thank you for the clarification.
This discussion board is a forum where CCA patients and caregivers exchange information on their experiences with various treatments and other aspects of this rare cancer. The board is not a vehicle intended to provide specific medical advice – there is a wealth of information here however that can help you learn about treatment and care options. If you are looking at web information suggesting certain treatments may be helpful, the next step would be to discuss them with your father’s physicians and medical care providers.
Using the board’s search engine, you can look for experiences of CCA patients and caregivers with any treatment and care options you are considering.
Please keep us updated on how your father is faring.
Welcome to the discussion board. It is positive to hear your dad seems to be doing well so far with his current chemo regimen.
As you mention, with this type of cancer, it is advisable to be plotting next steps since treatments can run their course. I have copied the page on the Foundation’s website that lists clinical trials below for you, in case you did not see it. You would have to look and see if they include gall bladder cancer. The clinical trial section of the discussion board has similar information, plus some patient postings on their experiences with the various trials.
A few CCA patients who have been treated with Avastin have posted on the board – there is a search engine that can be used to find information.
Fingers crossed for good scan results!
Best wishes that your TACE treatment goes well, you have an easy time of it, and that the storm is not too disruptive.
Welcome to the discussion board. I am sorry to learn about your father’s diagnosis, and hope you have been able to look at the information for new patients posted on the Cholangiocarcinoma Foundation website.
I am not familiar with the supplements you mention, or their potential benefits for a cancer patient. A few patients on this board have mentioned taking quercetin. I found no information on tropolide and wondered if it has another name.
There is information on the board in the Supportive, Palliative and Hospice Care section that discusses care options to improve the quality of life for a cancer patient. Certainly as you mentioned attention is needed to ensure stents are functioning properly. It is also important that there is adequate pain relief through appropriate medications that starts as soon as it is needed. Given the rareness of this cancer, it is desirable to find medical providers with some experience with Cholangiocarcinoma, for example, in a major cancer hospital – I hope this is possible in your area.
May I ask where you are writing from, given your question about having supplements quickly shipped?
Your determination to help your father in this difficult time will be a great comfort for him.
It sounds like Jack has settled on a sound plan of treatment, based on a lot of research and consultation. It is good you are seeking other surgical opinions to be sure that base is fully covered.
You mentioned a 27 percent efficacy rate for the chemo. Statistics have to be considered with a grain of salt with this cancer since it is so rare. Most studies are either small in size of patients and hard to generalize from, or they are larger because they include a wide variety of patients many of whom may be more advanced or have a different site for the cancer.
In Jack’s case, his cancer is confined to his liver and one purpose of the chemo is to downsize to surgery. I could not find any large studies for this group, but if you search “neoadjuvant” or “downstaging” plus “chemotherapy,” there is some material (small studies or single case reports) and much of it suggests to me that odds may be somewhat better than 27 percent. It is also useful to see that today other therapies can also work to get a patient to surgery, e.g., radiation. In any case, don’t get too wrapped up in the numbers, you are doing everything you can to get the best care and that is what counts.
So fingers crossed that the chemo does its job for Jack.
It was good to hear your husband experienced some relief due to the paracentesis. Sending thoughts and prayers your way for continued good days.
It is great to hear that you and your brother have collected a great deal of expert advice so quickly.
There are some board colleagues who have been treated using the HAI pump, including several who participated years ago in the trials for this approach. If you search “HAI” or “hepatic arterial infusion” you will find some of them, while for others, you have to search “pump” and sift through a much larger number of hits. My impression is that the delivery of this treatment has gotten more skillful over time as experience was gained.
Gavin has also posted some medical journal articles reporting out on the earlier trials which will come up in a search.
Hopefully board members who have had chemo via HAI more recently can chime in describing their experience.
When I read this, I went poking around to learn about free floating masses. I did not find much, it is apparently uncommon, but one item google produced is actually from this board. But – the individual asks the same question as you do, namely has anyone heard of this?
I am so sorry to hear that your mother may have a recurrence after such a long spell of good scans. And how concerning that the new growth was missed in the prior scan.
I don’t have personal experience, but have tried to read as much research as I can find on recurrence – a topic that is hanging out there for many of us. My impression is that the longer the period of remission, the more likely the recurrence will be outside the liver. My impression is this is particularly the case if the patient has had liver-directed therapy (e.g., radiation) rather than systemic treatment. One study suggested the dividing line for recurrences more likely to be outside the liver is around the two-year mark. The research on recurrence however almost entirely looks at resected patients – I don’t know if the findings are relatable to remissions/recurrences after other treatments. Your mother’s experience seems unique.
And of course, sometimes recurrences show up in more than one site.
I can try and dig up some references on this if anyone is interested. Of course, when looking at the case of one individual, any scenario can happen — the studies are averages over a group.
Hopefully an approach to biopsy can be figured out quickly so your mother can move on to treatment. Best wishes and prayers for a smooth path in this.
Welcome to the discussion board and many thanks for posting a detailed account of your CCA journey. This is so helpful for other patients and caregivers.
Your point about “fighting” is a good one. The metaphor implies some people didn’t fight their cancer hard enough, which is not a fair reflection of patients undertaking difficult treatments and doing everything they can to get well. There is some fighting, however, involved in this rare cancer – for information and answers, for adequate treatments, for research funding, to name some of the “fights.”
The quote is inspiring, thank you.
Please keep us updated and best wishes for continued good response to treatments.
Fingers crossed and lots of prayers as your mother has her biopsy. I was so sorry to hear there may be signs of a possible reoccurrence.
My impression reading postings on this board is the timing of the molecular/genomic testing can relate to the timing of treatment (in other words, at the time when targeted treatment is being considered) and to whether the tumor(s) is large enough and/or positioned in a way to obtain an adequate biopsy sample. Some of our long-term survivors who have undertaken targeted treatments in clinical trials have mentioned having repeat testing with different mutations found at different points in time.
Thank you so much for taking the time to post your story. This information is so helpful to others. Please keep us updated, and best wishes that your CCA continues to be a slowpoke.