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Please accept my condolences for your loss. You and your family will be in my prayers.
MaryMay 26, 2017 at 6:58 pm in reply to: Products Claiming to “Cure” Cancer Are a Cruel Deception #95024
I really appreciate your wise words on the complicated emotions we all feel with a cancer diagnosis.
Our rare cancer is especially tough as it is so hard to find folks with first-hand experience, whether doctors, other caregivers or other patients, to help us navigate this incredibly difficult path. For example, in my own case, I only first met and spoke to another patient with CCA sixteen months after I was diagnosed.
The Foundation is a lifesaver in this regard.
You are spot on in calling on us to be educated and not to fear science. The information on this cancer is hard to find sometimes, tough to understand and digest. But I guess we all have to go to CCA school best we can, so when the moments come to make quick treatment choices, we can fully participate and know what we are getting into.
Thank you for letting us know about your mom, and please accept my prayers and condolences.
I recall reading her posts while searching topics on the board, and her story is one of great courage and spirit, as well as offering hope for other patients.
Regards, MaryMay 26, 2017 at 2:08 am in reply to: Products Claiming to “Cure” Cancer Are a Cruel Deception #95020
I looked at the list again, and only about 30 are likely medical doctors in the U.S. Other mentioned deaths are of other types of healthcare professionals who would not be included in an estimate using figures for medical doctors. Or they are people in other countries (UK, Honduras, Canada, etc.) hence not included in numbers for the U.S. I suspect that not all 30 fit what must be a narrow definition of “holistic doctor” if there are only 4000 of them out of a million doctors in the U.S.
So nothing seems proven here – these deaths still seem to me nothing outside what death rate data would predict. The author does seem to be scouring published news reports and obits to find examples that fit her theory, so the 30 or so doctors mentioned are probably close to a full list, and are similar in number to your own estimate (32) of an amount of deaths we should not find to be remarkable.
I don’t know what Snopes is, and took my numbers from reliable published sources. I can assure you I am not bought off by any large corporation. I do have a deep respect for evidence and statistics, and this reporting just isn’t convincing to me. I guess we can agree to disagree!
Regards, MaryMay 24, 2017 at 3:05 pm in reply to: Products Claiming to “Cure” Cancer Are a Cruel Deception #95015
I looked at the article you attached, and want to make an observation.
The U.S. is a very large country, and there is need to be cautious when looking at stories that try to generalize from a small number of cases.
For example, there are about 1 million doctors in the U.S., and about 18 million health professionals of all sorts. The annual death rate for the U.S. population is about 0.8 percent, so in a given year, on very rough back-of-envelope average, about 8,000 doctors and 144,000 healthcare workers would pass away from all causes. If you divide this up by causes of death, then just for doctors, again with very rough averaging, there might be in the ballpark of 132 suicides, 101 gun deaths, and 419 accidental deaths in a year in the U.S. Widening this to more types of health professionals would expand the numbers even more.
It would then be very easy for someone to troll the internet and selectively find cases that fit ANY possible theory about circumstances of death for any group because there are always big numbers of cases to pick through.
Selectively picking a few cases that match a theory, however, is not proof of the theory’s correctness. Cancer is a terrible disease and it challenges people’s logic that a country that sent astronauts to the moon and figured out how to build an atomic bomb has not yet been able to solve the cancer puzzle, namely find a cure. My own belief is that cancer is just a much harder puzzle. Speaking for myself, this frustration is most intense when you are a patient or caregiver.
It is important to seek good surgical opinions, as some surgeons are more aggressive than others. There are surgeon recommendations on this board, if you search a bit.
My understanding is that re-resection is a preferred approach for recurrence if technically feasible and if the cancer has not spread. There are a number of discussion board colleagues who have had multiple resections. But many cases are not appropriate for more surgery, and other types of treatments are used.
The fact that one surgeon with whom you have consulted sees potential for surgery seems encouraging, even if you have other opinions in the mix. Personally, I tune out when a doctor tells me “all the other doctors will say the same.” Most doctors encourage second opinions.
Best wishes as you investigate treatment options.
Welcome to the discussion board. It is good to hear your recovery is going well.
When you say you are starting Gemzar, I am assuming this is an adjuvant treatment, namely post surgery to mop up any stray cancer cells. If so, if you have been reading through the discussion board, you may have seen the news stories this week about positive results from an adjuvant treatment using capecitabine. If you search “BILCAP” here or on google, you will see the press reports.
You may consider bringing this info to your oncologist, especially if he or she is not specialized in this rare cancer.
Best wishes for continued progress in your recovery.
I agree with you that capecitabine seems a little overlooked. The BILCAP study results will likely change this.
I took capecitabine as part of an adjuvant therapy after a liver resection. At the time one of my doctors asked the question “why not gem-cis rather than gem-cap?” since gem-cis is considered the standard of care as a first-line chemotherapy. But the study behind the protocol I was given pre-dated the big gem-cis trial, and included capecitabine not cisplatin, administered with gemcitabine.
At the time I tried to read what I could find, which was a few small-sample studies. What struck me (this is a completely non-expert patient observation) was that the regimes that included capecitabine often had overall survival rates slightly longer than other chemo combinations. (As a patient, I tend to read past other end-point measures to look for overall survival.) By slightly longer, I mean by a month or two. Also capecitabine is in pill form, which is easier than a cisplatin transfusion. The adverse effects seemed less scary to me with capecitabine when compared to the platinums, although I had pretty bad hand-foot syndrome by the end (my experience, not everyone experiences this.). So I was fine with having gem-cap rather than gem-cis.
I do not believe there have been any randomized studies yet directly comparing gem-cis with a capecitabine combination. The famous gem-cis study (also from U.K.) compared that combination to gem alone. Great Britain seems to me to have an advantage for medical research in that its care system is centralized. So for years apparently, CCA patients there who had liver resection surgery, if appropriate candidates, were encouraged to consider participation in BILCAP. This helped the study to recruit relatively large numbers of patients with this rare disease, and to produce results with statistical weight.
I have been reading this board for nearly two years now and do not recall seeing many or any U.S. patients reporting having BILCAP-type adjuvant treatment, namely eight cycles of capecitabine.
I guess each practice does it differently. I usually get the scan and blood test results through a portal, so I see them before my appointment. And just as usually there is something weird in the scan report that causes mild worry until I see the doctor and am told “oh, that’s nothing.” One time for example my appendix was “prominent.”
Not sure which system is better. I imagine that my doctors have to divert some of their scarce time answering freaked out emails over some of the odd and unimportant findings that get reported in scans reports.
Julie, I so appreciate your postings, they contain so much practical and useable information. Thank you for taking the time.
Regards, MaryMay 18, 2017 at 12:29 am in reply to: The long awaited results of the adjuvant BILCAP study #94973
Marion, thank you for posting. This is amazing news. I guess the docs can no longer say there is “no benefit” to adjuvant treatment after resection. Regards, Mary
I am sorry to hear your father is having such a difficult time. It is encouraging how he responded to the pazopanib with some improvement in his gait and cognition. You are spot on in thinking about next steps.
I do not have direct experience with the symptoms your father has experienced. My understanding is that liver illnesses such as hepatitis and cirrhosis can affect cognitive functioning because of the role the liver plays in removing toxins. Symptoms can apparently include balance, which may affect gait. I have not heard anything specifically tying such symptoms to cholangiocarcinoma, but it seems possible to me there might be a link. (Systemic treatments can also affect cognition, e.g., “chemo brain,” as can some pain medications.)
Hopefully the doctors you will be seeing have ideas on how to mitigate these symptoms. As you describe, they really impact your father’s quality of life.
Please accept my condolences and prayers at this difficult time. You and your family did everything in your power to help your mom face and cope with this terrible illness, and bring her comfort and peace.
Please know my thoughts and prayers are with you as you navigate these most difficult circumstances.
Responding to Marion’s call for ideas on coping approaches, your messages reminded me of the following: I am a single parent and when my kids were small we went through a very difficult period during which I worried I was so distracted by a family crisis that I might be missing their issues and needs. I also suspected my kids might try to hide problems from me not wanting to make the situation more difficult. I decided to put another set of eyes on them to be sure nothing was getting missed. We were living far away from family at the time, so I had them meet each week with a child psychologist to talk about how they were doing. Her help was valuable in keeping our family dynamic healthy and positive. Had I been living closer to family I might have organized the “extra eyes” differently, but the arrangement left me somewhat less worried that I would not notice their needs.
Reaching out to a mentoring organization is a great idea. I hope you are able to find the support you need, it sounds like there is a good circle of help reaching out to you.
Jeff, let me chime in with some observations on the criteria used in determining if surgery can be performed in a case of intrahepatic CCA, based on my own experience as a patient.
What I was told during my medical consultations at the time is that to be operable, the cancer generally must be confined to the liver, in other words it cannot have spread. In my case, my recent colonoscopy and mammogram results were considered to verify no other cancers were going on and I was sent for an endoscopy, in addition to the scans of my liver. There is also a calculation made of how much of the liver would have to be removed, as there needs to be enough left behind for healthy liver functions. The doctors also must look at how difficult the surgery would be, e.g., is the tumor wrapped around major veins or are there other features that would make surgery highly risky.
In my case, the tumor was large, spanned both the right and left lobes and was near a major vein. These factors were why I was originally deemed inoperable and was advised to have chemo first to shrink the tumor to a point where surgery would be less risky. Subsequently, a surgeon took a second look and felt surgery could be possible. As a first step in the operation, he examined the area laparoscopically to be sure there was no spread and that the planned surgery was feasible.
The advice to try chemo when surgery is not immediately possible is not uncommon, and as you can read in postings on this board, a number of surgeries were made possible by the initial chemo. In addition, other liver-based treatments may be possible should surgery not be an option.
It is also my experience that outside of doctors who specialize in liver cancer, most others have seen few or no cases of CCA.
I hope your mother-in-law’s upcoming medical consultations are fruitful, and result in a clear treatment plan.
I am sorry you had to find us, but you will discover a warm, welcoming community here and tons of good information.
It is very important to get good surgical opinions up front. Some surgeons are more willing to operate than others if the cancer is borderline resectable. In my own case, for example, I was initially told by a tumor board I was inoperable but then a surgeon came forward who felt surgery would be feasible.
I posted an article yesterday which I attach again below that describes a list of possible treatments that can be considered when intrahepatic CCA is just in the liver and surgery is not possible. Some of these are used after or in conjunction with chemo. This may suggest questions you can ask the doctors when consulting on your MIL’s case.
It is interesting your oncologist was “surprised” there were no symptoms or affected liver functions. This is one of the insidious features of this cancer – intrahepatic CCA can be symptomless in the initial stages. In my own case, I had had a very thorough physical several months before I was diagnosed and there was not one sign of anything amiss. A large mass in my liver was then found accidentally in a scan related to pain from a pulled shoulder muscle. It is positive that your MIL’s cancer was found before it had started harming her liver functions.
It would be good to ask who in Mayo was consulted by your local doctor – there are very few true experts in this cancer. I agree the reaction from Mayo seems strange.
Wishing your MIL and family all the best as you pursue treatment.