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Hi Olis,
Thank you for your posting.
I can provide some information on the question you asked about bone mets. Our patients have reported different treatments depending on the location and the problems the met is causing. On the discussion board, we have heard from patients reporting having bone mets treated with radiation. Some have reported minor surgical procedures to protect or strengthen the bone, e.g., placing a rod to strengthen a compromised leg bone. If you search this board for “bone mets” you can find descriptions of treatments for bone mets from caregivers’ and patients’ perspectives.
It is good to hear that your treatment has been going well. I hope you see continued positive results.
Regards, Mary
Hi Lynn Apple,
Thank you for sharing your blog. You mentioned it helps you to write about how you are feeling – your words will also help others who are going through the same emotions.
Your blog reminded me of my own diagnosis and how I felt about telling others. I probably told a few more more people I was being treated for cancer, but told very few which cancer it was. Usually when you internet-search Cholangiocarcinoma, what comes up has words like “dire” and I just did not want to deal with people reading that. People who know about my cancer were wonderful in supporting me and my family, so that was not the problem. I just wanted people who knew me to see me as ever, in the same way, and not as a patient. It is now some years later, and in retrospect, I still think my instinct would be to do the same thing. Your blog, however, was very important for me to read because you describe how hard it can be for family members when there is secrecy, something I had not thought about in this way. I really appreciate your sharing your experience.
Regards, Mary
Hi Flipflopgirl,
Thank you for posting about your experience. I am hoping someone(s) in our community can address your question. Also, if you have not found this group yet, there is a Facebook group involving Cholangiocarcinoma patients who are being treated with immunotherapy and targeted treatments. Since our cancer is rare and these therapies are relatively new, it can be hard to find other patients and caregivers who have experienced recently available treatments. Below is information on the Facebook group.
Take care, regards, Mary
https://www.facebook.com/groups/CCTargetedTherapy/
Hi Pat,
What an amazing milestone – thank you for sharing it with us. We’ve missed you!
All the best, Mary
Hi Lolitalaw,
I saw in your message you wish you had opportunities to talk with others also dealing with a cholangiocarcinoma diagnosis experienced by a loved one.
Please be aware that the Cholangiocarcinoma Foundation offers monthly support group meetings for caretakers (and patients). The schedule can be found on the Foundation website.
Also, you may be interested in receiving support through the Foundation’s mentorship program. I will place the link below.
I hope your mom is feeling good. I know it is daunting to have a big surgery scheduled. Finding distractions of any sort can be helpful.
Regards, Mary
Hi Lolitalaw,
Welcome to our community. It sounds like your mom has been through quite an ordeal in recent months. I hope the way forward is better for her.
There are multiple studies of whether elderly cholangiocarcinoma patients can tolerate resection surgery. You can find them by internet searching the three words “resection,” “elderly” and “cholangiocarcinoma.” The general conclusion for most of them is that the surgery can be well tolerated in general by elderly patients.
That said, some surgeries are more complicated than others, and the patient’s health status going into surgery will be carefully assessed before a surgery recommendation is made. Your mom’s surgeon can give an assessment of any risks involved with her surgery that she can then consider in deciding whether to go forward.
If you search “resection” on the discussion board, you will find patient stories about what recovery from resection surgery is like.
Please send any further questions you have our way.
Take care, regards, Mary
Hi Rollster,
Welcome to our community! I am impressed your oncologist knew about us.
I hope you have also found the many resources for patients on the Cholangiocarcinoma Foundation website.
Regards, Mary
Hi John,
I hope we hear from our community of any experiences adding Durvalumab to the standard Gem-Cis chemo treatment. You also may wish to send your question to advocacy@cholangiocarcinoma.org. The Cholangiocarcinoma Foundation advocates may have information they can share related to your question.
It is great news how well you have done with your treatment so far. I hope this continues.
Take care, regards, Mary
Hi Luis,
It is good to hear from you, but I am so sorry to hear that your mother’s cancer has progressed to a difficult stage after several years of stable disease. This must be a very hard time both for your mother and your family.
Hand tremors occur when the liver is not able to do its job removing toxins from the blood, which then can affect the brain, as you indicate. I looked through the board discussions, and found some old postings discussing possible treatments. I will put the link for one, from Gavin, below. Treatments mentioned included lactulose, which is a laxative to help remove toxins, and rifaximin which is used to lower ammonia levels. Please note that I am not a medical person and cannot give medical advice — I am just passing along names of treatments others have mentioned on this site. You would need to check with your mother’s doctor about whether either would be an appropriate option for her situation.
The medical term for hand tremors related to liver dysfunction is Asterixis – this might be helpful in searching for treatment information.
Please count on my prayers for you, your mother and your family in the days ahead. I hope your mother finds some relief from the symptoms she is experiencing.
Here is the link: https://cholangiocarcinoma.org/db/search/Rifaximin/
Take care, regards, Mary
Hi Hannah,
It is great to hear from you — the good news about your mother’s successful treatment really made my day. The newer targeted treatments are benefiting many of our patients. Their stories highlight the importance of biomarker (genomic) testing to see if your cancer involves a mutation for which targeted treatment is an option.
(For any readers looking for information on biomarker testing, there is important material on this topic available on the Cholangiocarcinoma Foundation website. I will place a link at the bottom of this message.)
Take care, regards, Mary
Here is the link:
Hi Jeff,
It is good to hear that your recurrence is small and your doctors have a radiation treatment plan for you. Leonie’s suggestion about looking into targeted treatment and immunotherapy options is a good one. We now have a growing number of strong tools in the treatment toolkit and having information about them in case they are someday needed is a sound strategy.
There is a wealth of information on genomic testing and targeted treatments on the Cholangiocarcinoma Foundation website.
I hope your radiation treatment goes well and does the job in beating back the recurrence.
Take care, regards, Mary
Hi Momaliszewski,
Welcome to our community and thank you for posting.
Your successful surgery is certainly hopeful news. I am happy to hear you are recovering and regaining strength.
Re GI issues after surgery, a resection does rearrange your insides a bit, and as patients we will be adjusting to a new normal. My own experience was that GI issues post surgery did take some months to subside and to a small extent are still with me now almost seven years later. I also still have a little neuropathy – occasional twinges in my feet. None of the minor lingering issues affect my quality of life, thankfully. It is important to keep your medical providers informed about any post-surgery discomfort.
My experience seems similar to others who have posted about their post-surgery experiences. Resection is major surgery, so please be patient with yourself as you recover.
Take care, regards, Mary
Hi Leonie,
Welcome to our community. I am sorry to hear of your sister’s diagnosis.
Let me unpack a little the guidance your sister is reporting hearing from her medical providers. I am not a doctor, but in my appreciation of the information as a fellow patient, this looks similar to what is considered standard of care in the U.S.
Having a successful Whipple with no indication of spread or lymph node involvement is really good news. Having the six months of post-surgery chemo has been shown effective in a clinical study from the U.K. called BILCAP in improving overall survival. If you search BILCAP on the discussion board, you can look at some of the articles about it as well as patient experiences.
Cholangiocarcinoma can be chemo resistant, but many patients do have positive results. So chemo is an important tool in the cholangiocarcinoma toolkit. The reason adjuvant chemotherapy is recommended after surgery is to mop up any microscopic cancer cells that may have been left behind. Moreover, the surgery itself which is somewhat of a trauma to the body (a good one!) might activate any stray cancer cells at a time when the patient is recovering and defenses are down.
The chemo used for the recommended six-month treatment is capecitabine. There is a rare enzyme deficiency called DPD that can cause a strong adverse reaction to capecitabine. Your sister may wish to ask her doctor if she needs to be screened for DPD.
Since there is a risk of recurrence with cholangiocarcinoma, patients and their doctors should be prepared that there might be additional treatment needs in the future. The recommended biomarker or genetic testing reflects that new and emerging treatments are based on genomic mutations or defects that can lead to or contribute to this cancer. It is good to have this testing as there are new targeted treatments effective in controlling this cancer for patients with certain mutations, and many new targeted treatments are in development. At the bottom of this message, I pasted some information from the Cholangiocarcinoma Foundation website about this testing.
Please stay in touch and send any additional questions our way. Your sister is blessed having such caring support from her family.
Take care, regards, Mary
Hi Gap,
Your husband’s response to chemo was certainly amazing, and I hope the good scan results continue.
Tumor markers are, as you describe, a sort of early warning system. I am not very familiar with AFP but a rising CA 19-9 is an event that can happen with this cancer that would raise concerns about possible recurrence.
If a rising CA 19-9 is due to a recurrence (hopefully not), it can take as much as nine months before anything is visible on a scan. This is a worrying situation to have to live with, but certainly your husband’s doctors will be on full alert for any evidence the cancer is reappearing. So far, from what you report, the scans look good. In his case, a recurrence if there is one would be caught early and ideally with a treatment plan already figured out.
There might be other reasons, though, for an increase in a tumor marker. In my own experience, my CA 19-9 once rose by about 30% (but still within the normal limit) due to a bout of colitis. There are benign conditions that can cause the number to go up, and the marker may fluctuate up and down for all sorts of reasons (dehydration, change in body weight, infections, and onset of diabetes are all examples of non cancer reasons for small fluctuations in CA 19-9). In a few cases, successful chemo has been shown to cause a temporary rise (or “flare”) because dying cancer cells can cause a small increase in CA 19-9. This is why doctors may take a wait and see approach initially if tumor markers rise a bit.
It is part of this cancer to live with uncertainty, but certainly your husband’s outcomes so far have exceeded expectations. The doctor’s call for caution in interpreting his results is reasonable. This cancer is not a “one and done” type of illness — it is more of a journey with ups and downs. The good news is the science is advancing rapidly so if the cancer appears to be recurring, there are a lot of tools in the toolbox to address however it manifests.
I hope your husband continues to receive good news from his scans. Please stay in touch, your postings are so helpful for other patients and caregivers.
Regards, Mary
