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Hi Shellsbells,
Thanks for dropping by and letting us know how you son is getting through his adjuvant treatments.
Now as mom, you are being called upon to be coach and cheerleader as your son hits some bumps in the road due to treatment side effects. My own experience with radiation was feeling like something the cat dragged in toward the end – it does cause a lot of fatigue for many. The five weeks of radiation did at times feel like an eternity. But with patience, I got through it as we all do, and as your son will surely do. My side effects cleared up as soon as treatment was over.
For the nausea your son is feeling, there are a number of different remedies available, so if one isn’t working, your son may wish to ask for something different.
Best wishes that your son’s radiation treatments go well, and that the nausea can be better addressed by his doctors.
Regards, Mary
Hi Lili,
I am sorry to hear your father is feeling poorly after his recent ERCP. Hopefully with a little more time for recovery, he will feel better.
From what you describe, it seems your father is facing another turning point regarding treatment choices. There may be other chemo options. If a clinical trial is a possibility, it may be helpful to look at the available trials posted on clinicaltrials.gov to see if there are any in your area that seem promising. The postings give contact information you could call to ask any questions. If you see clinical trial options of interest, you can ask your oncologist about his views, and he or she may be able to help with finding a spot.
Certainly, seeking a second or third opinion at this juncture would be reasonable if your father is up for that. The general recommendation for cholangiocarcinoma, since it is so rare, however, is to be sure any doctor you see has a lot of experience with it.
I would make another suggestion, even though it is not really needed at this point. You may consider, as research, looking into hospice care in your area. Hospice is hard to think about, to some people – erroneously, in my view – it feels like giving up, but actually it is a treatment option that can improve quality of life for patients at the point when it is needed, and in some cases, hospice care even can extend life. While it may feel distressing to hear a suggestion about looking into hospice care, at some future moment having this information already thought about will be helpful to your father and you. As a patient (being a hyper-organized sort of person), I did this research for myself after I was diagnosed, and surprisingly it gave me some peace of mind.
I hope a new treatment plan comes together without too much stress for your father. Please keep us posted.
Regards, Mary
Hi Kate,
It sounds like your husband’s doctors are monitoring his case carefully and thinking of next steps for when the gem-cis starts losing effectiveness. Folfox is a fairly common second-line treatment. If you search Folfox on the discussion board search function, you can find patient stories.
Your doctor raised immunotherapy as an option. Do you know what he has in mind? Since this is a newer class of cancer treatments, for many patients immunotherapy means participating in a clinical trial. Some of the trials combine immunotherapy drugs with traditional chemo as a means to boost their effectiveness.
Clinical trial information is available on the Cholangiocarcinoma Foundation website and at clinicaltrials.gov. You may find it helpful to look at trials available in your location, as you and your husband consider which treatment comes next.
It sounds like your husband has had a good long run with gem-cis. Hopefully, his next round of treatment will give him the same.
Please keep us posted. Regards, Mary
Hi mjheintz,
Welcome to our community. I am sorry to hear of your diagnosis, and that your chemo is causing side effects. I hope you have discovered the resources available on the Cholangiocarcinoma Foundation website, which provide a lot of good information for patients and caregivers.
I went back and looked up information on the the two chemo drugs you are receiving, and it matches what you have been told by your doctor – that this combo very rarely causes complete hair loss but some patients do experience thinning. Suggestions on the cancer websites are along the lines of what you have been trying – principally to go as easy as you can on your hair. Some cancer patients bothered by what is happening with their hair do go to the extreme, as you note, with either a very short haircut or even shaving their head. It all comes down to what you feel most comfortable with.
In my own case, I found the nurses in the hospital chemo infusion center as wonderful fonts of tips for coping with side effects. They usually can be reached by phone. I hope others who read this board will chime in with their own suggestions.
Regards, Mary
Dear Fay,
I am so very sorry to learn this sad news. Please accept my condolences for your loss.
I went back and reread some of your earlier posts and it was again a reminder of the heroism and deep love of our caretakers. You were definitely not on the sidelines of your mother’s journey! Your mother’s ability to cope with this difficult cancer was immensely eased by your support and interventions to ensure she had good care. The medical system, as you note, can be a source of frustration, and for many it is our family members who do daily battle to keep us around with a good quality of life.
Your contributions to this community have been so valuable as well, including for others navigating the Canadian healthcare system.
Take care, regards, Mary
Hi Pfdlsd83,
Welcome to our community and thank you for posting your husband’s story. You mentioned you have been looking at this board for awhile – so I am guessing you have seen all the patient and caretaker resources on the Cholangiocarcinoma Foundation website.
There has been a lot of discussion among board members regarding weight loss and appetite – this can be a struggle. Have your husband’s doctors identified a physical cause for this? Is his pain well controlled?
I hope our colleagues here chime in with ideas regarding dealing with hernias from surgery.
Please keep us updated on how your husband is doing on his trial.
Take care, regards, Mary
Hi Brigitte,
Top one percent and a glass of wine is not a bad place to be.
We all live with uncertainty with this cancer. You are absolutely right, maintaining a positive attitude and sense of humor is the way to go. The medicine is getting good enough that more and more of us will, like you, ultimately experience CCA as a sort of chronic disease with its ups and downs, and with our doctors ready for the next round of intervention when needed.
Thanks for keeping us updated. Regards, Mary
MollyMay,
What wonderful news, thank you for sharing!
Goes to show there is always hope, especially as medical technology advances. I wish you a speedy recovery and a new life with no feeding tube. This is just tremendous.
Regards, Mary
Hi kellykanapaux,
Welcome to our community. I am so sorry to learn of your wife’s diagnosis.
Please take some time to look through the Cholangiocarcinoma Foundation website – there is a wealth of information for newly diagnosed patients.
One point you mentioned raised my antennae. You explained you were advised that surgery could be possible if the tumor shrinks via chemo. It may be this is exactly the case, but you should be aware that when a surgeon says “inoperable,” the judgment is about what he or she feels comfortable doing. You might consider getting second and even third opinions from very experienced liver surgeons at major cancer hospitals. In my own case, for example, I was initially deemed inoperable, then a liver transplant surgeon at a major cancer center looked at my records and decided to give it a try. And my surgery was successful. My experience was not unique, I have come across other patients with similar stories. Surgery for cholangiocarcinoma can be very complex and demanding — not all surgeons will take on the more difficult cases. So you may want to consider getting more than one opinion, looking for highly skilled surgeons.
Nausea is common with chemo, and your oncologist should have many tricks up his sleeve to help. If one nausea med does not do the job, patients can ask to try another. It is important that cancer patients maintain the best nutrition they can.
Best wishes that Pooh’s nausea can be resolved. She is lucky to have your help as she navigates the medical maze. While cholangiocarcinoma is a tough diagnosis to hear, patients today have many more treatment options than were available even just a decade ago.
Please stay in touch and let us know how Pooh is doing as she proceeds through treatment.
Regards, Mary
Katrina,
What were the specific side effects you experienced that related to a thyroid issue? What should patients be looking out for?
Thanks and regards, Mary
Hi Katrina,
Your question is an interesting one. To rephrase it a bit, if FDA approves a treatment for ALL cancers with a certain feature such as a specific genomic defect, will that mean the treatment would no longer be involved in clinical testing, and patient access would be limited to having a doctor prescribe it?
My impression is that FDA-approved drugs still turn up in clinical trials, but usually with researchers pushing the envelope on their uses. For example, trials may look at combining a drug with others, trying the drug on certain groups of patients, etc. I looked at clinicaltrials.gov just now, and there are 440 clinical trials recruiting or not yet recruiting involving pembrolizumab listed.
It is a benefit to patients to be able to try a treatment without having to find a spot in a trial. The downside, for patients in the United States, is in our system, new drug options can be horrifically costly. Some patients may be eligible for assistance programs through the pharma companies, however.
Regards, Mary
Hi everyone,
Gavin just posted a bunch of interesting research abstracts on cholangiocarcinoma to be presented at next week’s big ASCO (American Society of Clinical Oncology) meetings. I encourage that you take a look.
The abstract below is a particularly important one. The researchers demonstrate that intrahepatic CCA patients who were treated in major medical centers which see a high volume of iCCA patients were more likely to be sent for surgery, and they had a higher overall survival.
The study looked at a large number of patients over more than a thousand medical centers. Half of the medical centers examined saw two or fewer iCCA patients in a year. By contrast, the (unidentified) center with the highest volume saw 92 patients.
The medical centers were divided into three groups based on how many iCCA patients they saw. Median overall survival of iCCA patients at the highest volume centers was 13 months compared to 5 months at the group of medical facilities seeing the fewest numbers of iCCA patients. This is in part due to the more aggressive treatment offered patients at high volume centers. 34.1 percent of iCCA patients at high volume centers were sent to surgery, as compared to 13.1 percent at low volume centers. Adjuvant (post surgery) chemotherapy and radiation were more frequently provided at the high volume centers.
These data substantiate the recommendation often repeated on this board – that patients should look for doctors and facilities with a lot of experience with this rare cancer. If you look at the abstract, you can see some research numbers that illustrate the importance of this advice.
Regards, Mary
Hi Lsteffen,
Welcome to our community. I hope you have found the many resources for patients on the Cholangiocarcinoma Foundation website.
I found myself in a similar situation after surgery then adjuvant chemo plus radiation. Due to vascular invasion, tumor size, and poor differentiation, I was also considered at high risk of recurrence. Not nice news to hear. In my case, I am now – gratefully- 30 months past surgery without recurrence so far, but realistically, I still face considerable risk of recurrence.
I am not a doctor, so am not someone who can dispense medical advice. But here are some ways I found to deal with the risk of recurrence:
Be sure your doctors have a good surveillance plan. A typical surveillance plan is four scans (chest-abdomen-pelvis) each year during years 1-2 post surgery, two scans per year during years 3-5, and once per year thereafter. Blood tests are usually taken at the same time, but you may want to consider asking for more frequent CA 19-9 testing if the marker has tracked well for you – namely, was it elevated upon diagnosis then lower after treatment. I pushed for monthly CA 19-9s my first two years (probably overkill) and now every two months. This post-resection surveillance approach reflects what many patients have reported on this discussion board, and is described in some (not all) medical guidelines. See for example the ESMO (European) Clinical Practice Guidelines for Biliary Cancer, which you can find via search engine.
Get exercise. There are some studies showing for other cancers that patients who get regular exercise have lower rates of recurrence than those who don’t. To my knowledge, no similar study has been done for our rare cancer, but exercise is generally good for people so why not try this?
Live your life. It can be hard sometimes to shake worries about recurrence, but I try to focus on better things like doing things with my family.
Others on the board may have additional suggestions for you to consider.
Take care, regards, Mary
Here is some additional information regarding the Codman HAI Pump.
The Cholangiocarcinoma Foundation reached out to the Codman Pump manufacturer, Johnson & Johnson/Cerenovus, and learned the following:
Some components necessary to its manufacture are apparently no longer available in the market, which is why the Codman Pump has been discontinued. Cerenovus is currently engaging with the FDA and the medical community to urgently identify alternatives. One potential alternative involves combining a Cerenovus catheter with a pump produced by another company. Cerenovus will continue providing accessories and refill kits needed for patients with Codman Pumps, and will also continue to offer clinical and technical support to physicians and patients.
Cerenovus can be reached at the following 24-hour contact numbers: for clinical support 800-660-2660 and for customer service 800-225-0460.
The Cholangiocarcinoma Foundation will continue its advocacy on this important patient concern, and we will keep you updated as more information is available.
Hi Lili,
Blood tests are a mixed blessing. They give a window into how a patient is doing, but often the picture is unclear, and often doctors want to wait and see more evidence beyond a blood test result to take a potentially disruptive action like stopping or changing treatment.
As we all experience with chemo, it is a treatment that deals strongly with our cancer. Doctors monitor blood counts and metabolic panels, and must make careful decisions about when it is time to scale back or stop a treatment. It is very common for blood tests to show abnormal results at times during treatment, and an experienced oncologist should know at what point these results are so concerning as to warrant a change in plan. Adverse blood test results can be temporary, or can clear up during break periods, or can, although out of normal range, still be classed as “mildly” high or low.
That said, your dad is worried and for this reason you may wish to circle back to the oncologist to clarify at what point rising liver enzymes would provoke a recommended change in plan. Chemo regimens tend to work for a while, hopefully a good long while, but then may start losing effectiveness or become less well tolerated. It is always good to be thinking about “what next” so you are a step ahead should the day come when a new treatment must be pursued.
How often are his blood tests repeated? Is the next scan sometime soon? Hopefully you will have additional testing results soon to help clarify how your dad is doing.
Best wishes that the next round of tests gives better news.
Regards, Mary
