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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.
Belated best wishes for your MIL’s recent birthday. It sounds like you had a pleasant and memorable celebration.
I was puzzling over your question – just as you say, this is a tough judgment call. I have copied below some thoughts posted by Marion and Michelle (a member of the Foundation’s Nursing Advisory Board) on vacationing when CCA is a factor.
My two cents – In difficult moments, planning a family vacation can be therapeutic. It is a chance to get everyone together and gives family members including the CCA patient something happy to look forward to. Your husband’s desire to plan a trip to a beautiful mountain setting, and your MIL’s stated willingness to join in, are so positive to hear. If your MIL wants to be part of a lovely family vacation planned around her healthcare needs, this could create wonderful moments and memories for her and your family.
But I read through your descriptions of your MIL’s treatment and the frequent amount of interaction she seems to need with doctors and other medical care providers. Are there good medical services available near the cabin? Are they accessible if there is inclement winter weather? Will the cabin be comfortable and pleasant for your MIL if she has little energy while there? Will the sleeping arrangements work for someone who is having sleeping difficulties? Will she be comfortable during a long car ride? I am sure these same questions have crossed your mind and are the basis for the worries you are feeling. The state of local medical facilities however can be investigated now; you can think through the many details related to sleeping, travel and other arrangement needs and see what is feasible; and your MIL’s doctor could be consulted regarding the likely progression of her health thinking ahead about several months from now versus an earlier date.
The other question is how much flexibility you have. If the trip can be modified or cancelled easily, there would not be much downside to working on plans for what hopefully can be a great family trip.
You and your family are doing so much to support your MIL as she undertakes difficult treatments.
Regards, MaryAugust 11, 2017 at 10:47 pm in reply to: Does Celecoxib/Celebrex Help With Hand-Foot Syndrome? #95441
I am sorry to hear your husband is experiencing hand-foot syndrome.
I am not familiar with the drug you mention. When you ask about it, you might also ask whether it is effective in clearing up HFS once it gets going, or does it need to be taken from the beginning of treatment before the HFS presents?
I also had HFS show up, just in my feet, at about the same point in the SWOG S0809 treatment. Yes, it is annoying! My coping mechanisms were the urea cream, plus soaking in cold water, plus applying all sorts of bandaids and corn cushions to the sore spots plus some of the numbing lidocaine cream I used with my port. And I invested in diabetic socks and shoes which I found to be inexpensive on Amazon. The shoes were essentially foot-sized sponges dressed up to look like somewhat like real shoes and were about $15. The brand was DPI, there are other options that look nicer but cost more. I had a few days when even my softest shoes were too uncomfortable, and used the diabetic shoes to make it to work. I also wore slippers a lot.
On the positive side, I had a couple of weeks break between the chemo part and the chemoradiation, and it calmed down during that time. As soon as I started the chemoradiation it gradually came back but disappeared pretty fast after treatment was over.
Thank you for the citations. Please keep the board posted on what you find out from your oncologist regarding celecoxib.
Thank you for the update. I hope your mom’s new treatment is better tolerated and shows results.
I understand your question to be whether there is anything a patient can do to improve liver functions. The recommendation I have heard is avoid alcohol, and that any use of over-the-counter painkillers such as aspirin and Tylenol should be reviewed and cleared with medical providers. Your question is definitely one for your physician.
It also seems a question that could unfortunately conjure up all sorts of dubious internet material on “alternative” treatments, some of which could be harmful. Below is an article for a different cancer where the researchers found a connection between worsening liver enzymes during chemo and use of various alternative herbal remedies. Any treatment you consider should be cleared by your doctor just to be safe.
I hope this is helpful, and best wishes for good treatment results.
Welcome to the discussion board. It is great you found this community. One aspect of a rare cancer is that patients and family members end up doing a lot of research and legwork. Your background as a nurse is an incredible asset for your brother.
I think insurance policies vary. The insurance I have is with one of the big companies and does not cover genetic testing for most cancers – it is viewed as “investigational” rather than “medically necessary.” My impression however is that some insurers might cover it, maybe needing the physician to explain why it is urgently needed, so it is worth checking. My guess is these policies will eventually become more favorable given the trend toward personalized cancer treatment.
As you have probably already found, the companies that perform the testing such as Foundation One do offer some financial assistance to qualifying patients.
Welcome to the discussion board. I hope you have also found your way to the other sections of the Foundation website that contain information and resources, especially valuable for new patients.
Your story struck a chord with me. I was initially told my large, centrally located ICC was inoperable by a major hospital tumor board, but was lucky when a doctor involved in my diagnosis reached out to another surgeon willing to operate. It is important to get good surgical opinion(s) early on especially if your diagnosis shows a single tumor in the liver that has not spread. In my case, my surgery was a “central hepatectomy” which is a less usual form of resection.
Reading patient experiences on this board was really helpful to me to figure out what I needed to do and what to expect. Please post any questions or concerns you encounter – this board brings together many patients and caregivers with a wealth of experience with this rare cancer.
It is good to hear that your mother-in-law is doing well and tolerating her treatment. I agree it does seem strange that the doctor is trying to boost blood counts that appear to be within acceptable levels – worthwhile to question this with the doctor or nurse at the next opportunity.
You mentioned your mother-in-law has been diagnosed with intrahepatic CCA, with multiple tumors in both lobes of her liver. You have not mentioned any further spreading. If I understand this correctly, she is in an advantageous situation as regards treatment. Hopefully her treatment can keep things controlled and stable, or even open the door for other treatments that are also life-extending with good quality of life.
Abandoning “modern medicine” carries a risk of losing control of CCA. Because CCA has potential to move quickly, foregoing what her doctors are recommending for a few months to try an unproven treatment could have unfortunate consequences, particularly since from what you describe, she seems stable at the moment.
You mentioned concerns about developing a second cancer. This is not misplaced, cases do occur although only rarely. I looked at this for myself wondering about the consequences of having chemo, radiation and lots of scans. I concluded for myself that it is far more urgent that I address my CCA now rather than worrying about an unlikely adverse impact that usually does not materialize for a decade out plus or minus. Each person assesses risk in his or her own way.
Fingers crossed for good scan results and treatment success for your mother-in-law.
It is good to hear from you, and that your husband has responded so well to treatment. You are right to dismiss your radiologist’s guesstimate regarding 18 months. As you know from reading this board, there is huge variation among patient experiences so averages are not very predictive. Also, my understanding is that the prognosis resets a bit — in a favorable way — for patients who have a good period of doing well under or after treatment.
(If you are interested in this last point, you can find articles by searching “Cholangiocarcinoma” and “conditional probability” – the articles mainly consider resection but the principle should hold for everyone.)
Keeping abreast of treatment options is very important with this cancer, as you point out.
Please continue to keep us updated, this information is so helpful for other patients looking into treatment options.
Regards, MaryAugust 4, 2017 at 5:51 pm in reply to: Chemo Articles Cited in PubMed (National Library of Medicine) #95196
Thank you for posting these links. It is positive to see the growing interest by researchers in our rare cancer.
Cholangiocarcinoma is not considered a disease that is inherited. Below is a site that explains this. It does say that family members may have an increased risk. I have read anecdotally about one or two cases where two persons in the same family had CCA, but such cases seem very rare.
I am not a science person, but it seems to me that in a case where two family members share an illness, the question is out there whether there is a genetic factor or something else that is shared, such as an environmental factor, for example, the CCA cases related to raw fish consumption in Asia.