stacie
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Melissa,
There are many on this website who are very young, I believe there are two younger than your brother thus far and many in their later 20s and 30s. Hang in there, I’m a sister to a young brother with cholangio as well. Today at 6pm EDT is the live chat and we are hoping that many from the website will come and feel free to ask questions and get some answers.
Also, if you have not already done so, you can fill out a profile for your brother under the yellow “patient profile” title at the top. After you have done this send me an email at stacie@cholangiocarcinoma.org and I can give you access to the other patient profiles, there you can find others on your same regimen or in similar circumstances with whom you can communicate and ask questions. Just know also, that there are several cholangio patients on this website who are out years, instead of months. Hopefully some of them will respond to your post.
Stacie
Cooper,
We are very sorry to hear of the loss of your mom. Thank you for sharing her story with us. Our thoughts and prayers are with you and your family.
I just spoke to Maureen Foley the Chief Operating Officer over Pro-pharmaceuticals. Dr. Marilyn Pike is no longer with the company. Dr. Bryan Hamilton has replaced her as Consulting Medical Director but can be reached at the same number (617) 559-0033.
Maureen said they are in process of getting trials online with Davanat and you can track that at clinicaltrials.gov, there is a link on the general information page of this site as well. If you want more information on the patient with cholangio that Samantha described above you can go to their website at http://www.pro-pharmaceuticals.com and you can look at the press release there. The patient was on this trial because the oncologist felt they had less than 12 weeks to live and this particular patient was on a combination including Davanat for 12 months after this.
Amazing, but ofcourse a singular success story. Since the trials have not even begun yet, it will be interesting to see how things work for patients involved. I hope if you live in one of the areas being considered and participate in one of the trials, you will keep us all updated.
I thought I’d post a little more information on Davanat so that you will have enough information to talk with your oncologists and also talk with those who are running the clinical trials.
Davanat is a proprietary complex carbohydrate compound
manufactured by a private biotech pharmaceutical company that
wants to obtain fast track approval from the FDA as a therapeutic adjuvant for the treatment of solid cancers. This is why they are looking to conduct a Phase 2 trial on cholangiocarcinoma, which is considered to be an orphan cancer. Davanat, itself, does not appear to have any direct chemotherapeutic effects, but rather is claimed to serve as a type of carrier molecule that is supposed to direct agents like 5’FU and other cancer chemotherapeutics to the tumor cell. As part of their marketing strategy, the company uses a trademark term,the Carbosome, to characterize their agent’s function. This is an obscure and purely descriptive term that presently has little value. The data presented to date on Davanat is quite preliminary and this agent has not yet been subjected to a rigorous peer review that would transcend the company’s claims with highly objective scientific evaluation to strongly justify clinical usage, particularly against difficult to treat advanced cancers like cholangiocarcinoma. The data for Davanat are far too preliminary to make any recommendations for or against its use.But, I think we will all be keeping an eye on this one. If anyone finds additional data feel free to post it here so we can look it over.
Celoi,
We’ve looked into this as well as some others here on the website. Can you tell me if he has followed the diet strictly? How long he has been doing the CAAT diet? I’m really interested to know any details you have.
Thanks
Kate,
Please keep us updated on your mom’s condition in the hospital there. We hope things go well. Just a couple of thoughts or things we have been told. The problem with surgery (and you are lucky that the disease seems well defined in your moms case) is that they can only cut out what they can see.
All of the surgeons that we consulted with said – it’s what you can’t see that will kill you. Sometimes they call it seeding or other things, but this is how the tumor spreads to other organs. The problem is that you can’t see the seeds, that’s why chemotherapy (or systemic treatment) is so important it is the only way to kill the seeds. Now that being said it doesn’t always work, but it works about 30-40% of the time and that’s pretty good when you are working with something you can’t even see.
I can’t speak to the fluid in the belly after surgery/resection but perhaps someone else can help with that.
You might want to read the “in remembrance” section. You will find a website there of a young women who had surgery and then did not have chemotherapy afterwards, it may give you some questions to ask your surgeon and some things to think about.
None of us have rock solid answers here or this would be a board for all the cured people who had cholangiocarcinoma. But I can tell you that every surgeon, every oncologist and every interventional radiologist we spoke and are speaking with (not just a few) all said that with cholangio chemo has to work. Whether you have surgery or not, chemo has to work. Particularly, the surgeons who we consulted with said, you have to do chemo afterwards just to make sure. One particular thing that two surgeons told us was that if it comes back after surgery it comes back with a vengence. If you are a candidate for surgery and the surgeon thinks he can get it all, I would do the chemo just to make sure all the seeds get it too. What they can’t see when they go in is the problem.
This is just my opinion and I know some people are trying to get the cancer without chemo, either way, you’ve got to get every bit of it.
Leigh,
Your brother has a lot of good options in Arizona. The Mayo Clinic, which we looked into and spoke with Dr’s has treated cholangio many times (Dr. Leonard Gunderson – radiation oncologist – came highly recommended to us, but radiation wasn’t our route at this time). Dr. Daniel Von Hoff is down there as well, he is world renowned in his practice and also heads up the Molecular Profiling Institute which you can find on the general information page. In almost every situation, when we have been looking for alternative treatments or cutting edge treatments for cholangio, we have been able to find someone in Arizona doing them (no such luck in Utah)!
My suggestion, read everything on this site that you can and then ask all the questions that you need to. You have at least a dozen more people your brother’s age on this website (some younger) we are all working together and sharing information to beat this. Hang in there.
Jules just one more thing. Our oncologist has told us that he feels we should continue with the Avastin no matter what kind of chemo switch we make in the future. Studies have shown that the cancer doesn’t grow resistant to the Avastin as it does to the chemo apparently.
Jules, you want to talk with Tricia. I believe she had mets in the lungs. Mark is on Oxaliplatin for that reason – I’m answering because Marianne is out of town, but hopefully she will answer as well.
There was one study that found that the response with Gem/Oxaliplatin was slightly higher than Gem/Cisplatin (but they are all in the platin family so similar). Avastin has worked for Mark and our oncologist is a believer. He said it doesn’t work at all by itself but that it has been shown to be a proven chemo booster in that wherever it is used (on whatever kind of cancer they’ve tried) it boosts the effects of the chemo.
Valerie is also on Avastin with the same regimen as Mark and having shrinkage.
Well, they sent me some great materials. A CD which gives a virtual tour and answers questions and a book that was published by the founder and his son – both Dr’s (2004). It explains in depth all the alternative medicine that they use and why. There are a good 10-15 pages at the back with all of the research that their theories are based on, clinical trials, published research, etc.
When Dr. Hernandez called and spoke with me, he said they had treated cholangio many times and I am just wondering if any one out there has been treated there. Or has done any research of their own on the place.
Good Luck Kathy, Let us know what you decide. I’ll be looking into the cryosurgery as well, so keep us updated there as well.
One thing we’ve learned in the last 6 months is that, there are endless opinions (almost always differing) and endless amounts of decisions to make. We just keep researching everything and never be afraid to ask questions.
Kathy,
The surgeons are probably right. If they have told you he is not a candidate for surgery or transplant. But the oncologist is wrong. Chemotherapy does work for many on this cancer. There are several here who are out beyond two years with the help of chemotherapy. I have personally never heard of the cryo surgery before and I’ve done hundreds of hours of research on cholangiocarcinoma, so I would be very interested on any information you can give the rest of us. Where do they do this type of surgery and who does it?
There are several clinical trials. You’ve probably seen Soraphenib mentioned, but it has not been successful with several of the patients here. There are a lot of chemo options to try, I would certainly try chemo before I went in to a clinical trial (personal opinion) because you’ve got to get a handle on this disease quickly. If the chemo stops working later, then you can try a clinical trial.
Be sure to put Mark’s information in the patient profiles and then you can have access to the rest of the patient information. You will find a lot of chemo options and places that have been aggressive with this disease.
Good luck. Be sure to keep us updated.
I have seen that a couple of you are trying AHCC, have you noticed any difference since you started using it? I’ve been reading the book “Dismantling Cancer” and it says that among other things AHCC reduces nausea, increases appetite and decreases anxiety. I’m wondering if you are doing chemo along with taking AHCC and how are your side effects?
