stacie
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Kelli,
You have a lot of good questions and I wish there were clear and concise answers to them. First off, I’m interested why your oncologist wants to start off with Taxol. The only proven chemo to work with cholangio up to this point is Gemcitabine, and 5FU seems to also work. Tricia took one dose of Taxol and immediately lost all her hair (darn it). Gemcitabine and 5FU don’t have this effect although there are some others. You may want to talk with your oncologist about his chemo choice and why. You should also be looking into Avastin and possibly Erbitux or some of the other targeted therapies on the chemo spreadsheet. They have been working for several patients on the website.
There are several people who are looking at alternative therapies on this website but I haven’t heard specifics on anything that is working. Our naturopathic Dr. gave us some Avemar – which we had been studying and Mark will start that immediately. She has seen a couple of patients completely healed using it. She also suggested the Gerson Diet (or lifestyle) they call it. You can look it up online at http://www.gerson.org – they have a lot of very interesting stories of complete healing from all kinds of cancer on their disc – which I watched last week – especially interested in the patients that were cured from Peritoneal cancer and pancreatic cancer doing this diet. Just something to look into.
Good luck – keep us updated.
Caroline,
Thought this might interest you since you’ve had trouble with hand and foot.
Retrospective study of capecitabine and celecoxib in metastatic colorectal cancer: potential benefits and COX-2 as the common mediator in pain, toxicities and survival?Lin EH, Curley SA, Crane CC, Feig B, Skibber J, Delcos M, Vadhan SR, Morris J, Ayers GD, Ross A, Brown T, Rodriguez-Bigas MA, Janjan N.
Department of Gastrointestinal Medical Oncology, The University of Texas M. D. Anderson Cancer Center, Houston, TX 77030, USA. elin@mdanderson.orgOBJECTIVE: COX-2 activation may mediate capecitabine induced toxicities, eg, hand-foot syndrome (HFS) and colorectal cancer progression, both of which may be improved by concurrent celecoxib. PATIENTS AND METHODS: From October 2000 to December 2003, 66 patients with metastatic colorectal cancer received concurrent capecitabine at 1000 mg/m/d b.i.d. and celecoxib at 200 mg b.i.d. (XCEL). Twenty-four patients were chemo-naive, 42 patients were second-line; while 34 had XCEL with radiation. RESULTS: The median duration of XCEL was 7.2 months (range, 1.5-38 months). Ninety percent of Grade 2/3 HFS (17%) occurred after 6 months and incidence of grade 3/4 diarrheas was 8%. The overall response rate was 38% (95% confidence interval [CI], 26-51%), with 11 patients (17%) achieving complete responses and 2 patients (3%) with near complete responses. Six patients (9%) become resectable after sustaining treatment response. The median progression-free survival (PFS) and overall survival (OS) was 8.3 months (95% CI, 7.0-11.0 months) and 22 months (95% CI, 17.8-31.5 months), respectively. Improved median PFS of 14.5 months (P = 0.0001) and OS of 31.5 months (P = 0.005) were noted in patients with normal lactate dehydrogenase (LDH) levels (n = 37) than patients with high levels of LDH (n = 29). CONCLUSIONS: XCEL integrating radiation may improve response rate and survival and reduce toxicities, notably HFS for patients with metastatic colorectal cancer, leading to a randomized phase III study.
PMID: 16755175 [PubMed – indexed for MEDLINE]
I agree with Geoff. All of the studies show that these chemotherapy drugs work better in combinations – so you are looking to add one of the platins to the Xeloda (this is usually the first regimen that people try) Cisplatin, Carboplation or Oxaliplatin.
Use the information on Avastin on this website and (it’s listed under working with your insurance) and make sure that your Dr. will let your brother get on Avastin this will boost the effects the Xeloda has on his tumors.
You may also want to look for information on AHCC and Avemar (both on this website as well). They are both showing good results (and are natural) with helping reduce tumors and decrease spread.
If you can, get his Dr’s email and send all the information via email. This is one of the ways I communicate with Mark’s Dr. and send him new information. He is only seeing one cholangio patient and so we don’t expect him to be up on all the latest things – although he usually is, but this way at least he knows that we are on top of it. Then when we go in for appointments I usually have a list of things we need to talk about and he has always read through all the information I’ve sent and we can make the decisions then.
Stacie
Geoff,
Here are my suggestions: I’ll try to go right down your list. There are others who know more than me out there, so (others) please feel free to correct or add to what is here.
Avastin: I think if you are doing chemo it is a must – it has boosted good results with every kind of cancer it has been tried on. Check pub med and you will find several studies/articles/peer-reviewed materials there that can help you. Also, you can go to the “Getting Avastin” area on the website – there is a post there through me from a good Dr. friend and he gives several good suggestions on getting Avastin into your regimen.
Davanat: You can’t get it. Hopefully Caroline will keep us updated on the progress with her compassionate use request, but other than that it really isn’t available and there aren’t any peer-reviewed articles to read on it.
Sorafenib: I think we were all hopeful that this one would do a better job with cholangio, I haven’t heard any good results from this trial – perhaps Hans knows more as he was also on the trial (which did not work for him either).
XL119 – I have not studied this drug and so I can not speak to its efficacy but pubmed should be able to help you out there as well.
Immunotherapy is just coming so we will all be watching this one.
As far as alternative therapies, I will know much more about this and the direction we will be going with Mark next week. We have our appointment to lay everything out and we are very interested to see how this will go. I should tell you that one of the reports that I read said that AHCC and Avemar together were having excellent results so this is something we will be going after as well.
Mark’s scan was yesterday and so we are patiently waiting to hear the results. If what they say is true and the amount of rash determines how well the Erbitux is working then he should be cancer free (haha). We’ll let you know.
5FU and Xeloda are the same thing. Just in different forms. Mark is on 5FU, Avastin and Erbitux right now, he is tolerating them far better than the GemOx (Gemcitabine & Oxaliplatin with Avastin) that he was doing before – so we will see.
Hope this is helpful, but I hope others will post as well. It is always best to have many opinions.
Good Luck, keep us updated!
StacieYour mom must be a trooper. It sounds like you are ready to get on top of this and that’s what you need to do. Read, study, ask questions. Most of the information that you will read published online – will not be very positive.
I remember when my brother was first diagnosed I would stay up late into the night reading everything I could find on-line about cholangio – every couple of hours I’d just have to get up and go outside because I couldn’t take all the negative information (sometimes I would sob for a while) then I’d pull myself together and get back to work.
Now, these articles don’t affect me at all. Mark has already doubled what they told us originally and we are constantly on the look out for new things that might help. You need to find out exactly what your mom is dealing with first. Do they think she is surgically resectable, what kind of cholangio does she have, intra, extra, etc, how big are her tumors, does she have metastatic spread & where. This will help you to determine different kinds of treatments that are available to her.
Also, you must seek out expert opinions. That means if you need to travel – do it, if you need to call in some favors – do it. You will need an array of opinions from oncologists, surgeons, interventional radiologists and also some in the alternative medicine field.
Just keep in mind that Dr’s are selling a service (themselves), you are the customer. You need to shop for a Dr. that is positive, sensitive and willing to be aggressive if that is what your mom and your family determine they want to do. Go to several and pick one that feels right for your mom.
Keep us updated! Everyone here on the website will help you.
Here are all of the published clinical trials, etc. on this product.
http://www.avemarresearch.com/TOC.html
I should say that I originally read about Avemar in a magazine called Alternatives which was written by a Dr. David Williams, who apparently travels all over the world scouting out treatments and debunking scams. He couldn’t say enough about this product and was very impressed. That led me to Pub Med where I read all the articles he had sited and several others for myself.
Caroline,
Thanks for the update. I wish everyone would post a good update once a month so we knew what people were trying and how things were going (I know this isn’t subtle – haha). This would give us a lot more information to work with and give everyone some things to look into and research for their own treatment.
Avastin is not chemotherapy so it will be added not used instead of something else. It works as a boost to chemo (in simplest terms). It has never been shown to work on its own, but in every clinical trial on all kinds of cancer, it has boosted results. Geoff’s oncologist and ours feel the same about Avastin. They also don’t think it adds to the side effects – so this is good news.
You are already using a lot of alternative treatments but I have been researching something the last few days that I’m very interested in and I will pass it on here. I’m going to post the articles in the alternative section so they can be more easily accessed. The product is called Avemar or “Ave” in the United States (it has only recently been available in the US). There are about 20 articles in pub med (you can reach that site from the general information area here – it is very easy to register and access information). All of them show that this natural product is doing good things where cancer is concerned. We are meeting with our oncologist and a naturopath in the next week and we will discuss this product with both of them. It looks to me like this is a natural product (they say it has no side effects, just doesn’t taste too great) that will break the barrier between modern and alternative medicine – at least that is what the peer-reviewed articles are saying.
Stacie
Cass,
You have much to hope for and your sister has a lot to live for, this website was developed because we wanted to hear about and find solutions to this problem. We did not want to focus on the number of months Mark had left to live.
I know there are many like you who watch this website and have been reluctant to participate in this forum. We don’t know everything about cholangiocarcinoma. The fact is there aren’t enough people who get this cancer for any Dr. or person to be a specialist on this disease, but we (everyone participating on this website) are the best weapon we’ve got and sharing information is the best way we have to find answers and hopefully a cure.
Not accepting what your oncologist has to say as the final answer is smart, especially if this is the first opinion you have sought out. Many of us have had 4th, 5th and 6th opinions and if we see something new or interesting on the horizon we’ll seek a 7th.
This has been a continual information gathering period for us and I suppose it will continue until we find something that will make a significant difference. Hang in there.
Stacie
There are several of us here on this website who are using Avastin. Mark’s oncologist often tells us that statistics show that Avastin boosts the results of every kind of cancer it has been studied with, so we will keep using Avastin no matter what regimen we are on.
It took a good deal of effort for many people to get Avastin, but others were able to easily get it added to their regimen. It has mostly depended on the insurance company and the lengths the doctor was willing to go to get it for the patient.
Stacie
I’m sure you’ll get a lot of posts in answer to your question. Everyone’s experience with chemo seems to be a little different. While most of the pamphlets we read about chemo suggested that there were certain patterns, this has not been Mark’s experience and perhaps one of the more difficult things to deal with during this whole process (the fact that what happened the time before doesn’t seem to suggest – at least for him – what is going to happen the next time. I think some of this comes from mixing chemos and different therapies.
If you have an oncologist who because of your boyfriends age is going to treat this cancer aggressively then you are looking at a bit of uncertainty as to what to expect because some of the mixes are not well tested or documented as far as side effects when mixed.
One of the things that has been really helpful is hydration, keep him well hydrated and don’t be afraid to go in and get some extra fluids if he is not getting enough. I am not speaking only of my brother but of several other young cholangio patients we have been in contact with as well, this has been one very helpful thing.
There are many other things but I’m sure some of the other caregivers on the website will want to add.
Good luck and gather as much information as you possibly can so that your oncologist knows that you are ready for battle.
Stacie
I want to agree with the previous posts that you are in a good position if your brother was considered a surgical candidate. Now, the crucial thing for him becomes the systemic treatment with chemo.
However, you need to give another try to get a combination chemo for him. Your best bet will be to combine gemcitabine with 5FU/Xeloda (same drug administered differently) or one of the platins (Carboplatin, Cisplatin or Oxaliplatin) there is a lot of information and studies on these drugs. Start pulling them up and work with your insurance or oncologist now to get him on some kind of combination of drugs, he will have a much better result if your oncologist will do this.
Marion,
What does your oncologist suggest after recovery from the surgery? Will you try chemotherapy, or something else or will you wait to see if there is any growth before deciding?
Terri,
Welcome to the website. Please give Ken our best! Will Ken do anything systemic (chemo) in the meantime or will you wait and see?
Stacie
The meeting was originally scheduled to take place early in 2008, but has been moved back a bit to summer of 2008. I’ve been told that I will receive more information on the scheduled meetings by August of this year. I believe it will be held at William and Mary College and I don’t believe that has changed. I will keep everyone updated as I receive new information.
