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Dear Hopeseeker,
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.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=105491#p105491
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, Mary
Hi Tilly,
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.
Regards, Mary
Hi Anthony,
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.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2816841/
I hope this is helpful, and best wishes for good treatment results.
Regards, Mary
Hi Kasia,
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.
Regards, Mary
Hi Jack,
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.
Regards, Mary
Hi Jeff,
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.
Regards, Mary
Patti,
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, Mary
Tilly,
Thank you for posting these links. It is positive to see the growing interest by researchers in our rare cancer.
Regards, Mary
Hi Ben,
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.
https://ghr.nlm.nih.gov/condition/cholangiocarcinoma#inheritance
Regards, Mary
Dear Kim,
It is good to hear that the tumor marker is moving downward. Hopefully this is a preview of a good news scan. Please let us know how that goes.
Regards, Mary
Hi Kim,
It is my understanding that metastatic tumors have both common elements and differing elements with the primary tumor(s), and hence may respond differently to treatment. I believe doctors will tend to assume that new lesions appearing after a primary cancer is diagnosed are metastases of the primary cancer. And CCA can metastasize to the lungs. It is always possible that there is a second primary cancer afoot, but my understanding is this would be a rare event.
Regards, Mary
Dear Hopeful,
I am sorry to hear that your husband is not feeling well. You mentioned your oncologist seemed somber. I was wondering how detailed he or she is being with you, in outlining possible scenarios. Sometimes doctors have to be pushed to give this sort of information.
Exploring palliative and hospice options early can be helpful in making decisions. With this cancer presenting so many twists and turns, one has to prepare for a variety of possibilities. I know this is hard when just getting through the day-to-day can be draining. Even while hoping for the best and staying positive, however, it is still good to think about future plans – if you think through and consider care options that turn out to be unneeded at this time, no harm is done and you are more prepared for whatever the future brings.
If you have not found this posting yet, our board colleague Rangani posted some links to excellent materials on end-of-life care for cancer patients. I copied the posting below – his message has various links. Even if this information is not needed at this time, it may still be helpful in considering possible future situations.
My thoughts and prayers are with your husband, you and your family as you navigate this most difficult time. Hopefully his current treatment will show positive results. Please keep us updated.
Regards, Mary
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=105261#p105261
Fay,
Your point is an important one. If CA 19-9 is being monitored and it rises (per one of my doctors, doubling or tripling is the warning bell), then an intense effort should kick in to figure out why. BUT, if CA 19-9 stays in the normal range, it is not a guarantee that all is well. This is why — as you so rightly point out — the broad range of indicators needs to be carefully watched, including periodic scans and patient symptoms.
I wish there was more effort by the doctors and researchers to define what surveillance should be for this cancer given how difficult it can be to detect and monitor.
Regards, Mary
Hi Kris,
My CA 19-9 was 115 at diagnosis, then 16 then 6 after resection. It started climbing with subsequent chemo and especially radiation up to 14, then has eased back to a range between 6 and 8.
I am going to get a little past my own comprehension of the science now. There are different subgroups within people who express CA-19-9, and the average or median CA-19-9 level varies among these subgroups. My CA-19-9 of 6 could be just as normal as someone else’s 22. So my understanding is doctors look at what is normal for the individual patient rather than comparing across patients. I was told by an oncologist that my CA 19-9 runs low and for this reason might not be as good an indicator as with someone whose number varies more widely. I was also told that doubling or tripling would be the tripwire to investigate if something concerning is afoot.
CA 19-9 can rise with treatment, whether chemo or radiation. In my case it more than doubled although still below the upper limit. It can also rise with progression or recurrence; for this reason doctors look at CA-19-9 as an indicator but look at other factors as well.
Regards, Mary
This essay is a gem, but I thought I would summarize Dr. Gould’s observation on survival data for those who find this essay quite lengthy.
Dr. Gould notes that the median survival of eight months that he read about related to his own cancer diagnosis did NOT mean “you have about eight months to live.” Instead, it means fifty percent of persons studied with that diagnosis survived more than eight months. Moreover, within that 50 percent, there were many who survived much longer than the median, for example for several years. Knowing this, he focused on thinking about factors related to his own case that gave him hope of being in this fifty percent, such as having good medical treatment and decided that he had a good shot at living well beyond the eight month statistic.
He also points out that every improvement in care pushes the survival curve out, offering additional reason for hope.
Regards, Mary
