Alternative treatment and cholangiocarcinoma is working

RobbinsEgg

Hi All,
My wife was diagnosed with cholangiocarcinoma, bile duct cancer, last fall. She was operated on but the cancer was non-resectable. The doctors and oncologists I spoke to were giving poor prognoses about her chances. The oncologists and other info I was able to find basically said that chemo and radiation wouldn't work. So my wife started on an aggressive alternative treatment protocol that included many supplements, strict diet, juicing and a couple of alt treatments from NY and the Bahamas. Up until the spring the signs were encouraging with tests showing that there was no growth. But her CT scan in april showed that there was growth and the cancer had also spread into her liver. We were obviously crushed by this, but literally on the same day we found this out, I learned of a treatment called IPT Insulin Potentiation Therapy. The more research I did on it the more I was ecouraged and excited . It is a treatment that delivers low dose chemo with insulin. Apparently the insulin puts the cancer in a "state of starvation" and makes the chemo much more effective at killing the cancer, and without side effects. Also the doctor we are using put her on a couple of supplements called Paw Paw and Artimisinin, which studies show that they are quite effective in fighting cancer on their own. There are about 50 to 60 or so MD's in the states that do this treatment and some of their additional supplements vary. We decided to do this treatment and after 7 weeks of treatment, 1 a week, it's working. Her latest CT scan showed that the main tumor (remaining after the surgery) had shrunk to 2cm's, her biliary tree was clearer and with less inflammation, and the lesions in her liver were shrinking and many had disappeared. My wife has had no side effects from this treatment and is actually very hungry afterwards. She continues to gain weight, has most of her strength and stamina back, and her quality of life is so much better. We expect that this good news will continue over the remainder of her treatment which is 18-24 weeks overall. I can't say what the future holds, but it sure is a lot more promising than a couple of months ago.
If you want to find out more about this, please do so at these websites. http://www.iptq.com/default.htm http://luvstoread2.com/pawpaw.html#4
I encourage those of you interested to make as many inquiries as you can about this through the websites as I did, and I'd be glad to help as well. I hope this helps.
God Bless

isletcell

I have also heard of this too. But wasnt aware that there are so many docs treating with this. My question is how much??????

RobbinsEgg

isletcell said:

I have also heard of this too. But wasnt aware that there are so many docs treating with this. My question is how much??????

I think it varies from doctor to doctor. It also depends on your insurance company. We are paying 1100 per visit, and I've just submitted the first several bills to our insurance company. The IPT People said that many Insurance companies do cover at least a part of it. We are expecting ours to cover 50%. I should know how much in a week or two. I also plan on disputing it unless they pay 80%. After all, the treatment is working! and there aren't any "preferred providers" in our plan that do this treatment. There are also MD's in Mexico that charge about half that, but obviously less convenient to get to for most people. If there were justice in this world (and maybe within a few years there will be-in regards to IPT) then the insurance companies would cover it the same as regular chemo treatments.

4myfather

RobbinsEgg said:

I think it varies from doctor to doctor. It also depends on your insurance company. We are paying 1100 per visit, and I've just submitted the first several bills to our insurance company. The IPT People said that many Insurance companies do cover at least a part of it. We are expecting ours to cover 50%. I should know how much in a week or two. I also plan on disputing it unless they pay 80%. After all, the treatment is working! and there aren't any "preferred providers" in our plan that do this treatment. There are also MD's in Mexico that charge about half that, but obviously less convenient to get to for most people. If there were justice in this world (and maybe within a few years there will be-in regards to IPT) then the insurance companies would cover it the same as regular chemo treatments.

Hi There,

Your wife on healthboards.com told me I'd find you here. Can you please give me the info of the IPT doctor that you are seeing? That's amazing that your insurance company is covering it. I talked to Dr. Steven A. of Chicago yesterday and he said that insurance companies don't cover this procedure. I'm sure you know of Dr. A in Chicago?

We are still waiting to meet with the oncologist next week to go over results from our laporoscopic exploration last week.

Where in SoCal do you live?

Have you tried Haelan951? I got some for my father to see if it makes him feel any better.

Sorry to hear that what we have in common is a bad cancer in family members. Look forward to communicating with you more and sharing more info.

RobbinsEgg

4myfather said:

Hi There,

Your wife on healthboards.com told me I'd find you here. Can you please give me the info of the IPT doctor that you are seeing? That's amazing that your insurance company is covering it. I talked to Dr. Steven A. of Chicago yesterday and he said that insurance companies don't cover this procedure. I'm sure you know of Dr. A in Chicago?

We are still waiting to meet with the oncologist next week to go over results from our laporoscopic exploration last week.

Where in SoCal do you live?

Have you tried Haelan951? I got some for my father to see if it makes him feel any better.

Sorry to hear that what we have in common is a bad cancer in family members. Look forward to communicating with you more and sharing more info.

I'm so glad you found me! I'll email you. If for some reason you don't receive it, let me know here.
To all else, feel free to contact me re:IPT

deberst

My mom was diagnosed with cholangiocarcinoma two months ago and it is stage 4--it has taken over her liver and local lymphnodes already. She is on an aggressive chemo combination of Avastin and Gemzar right now, and in four more weeks she'll have her second CT scan. Hopefully it will have improved but the doctors were not very confident about the outlook for her. She is having side effects that are making her miserable and I am worried about two things: 1)her quality of life while she is still with us and 2)(especially if the chemo does not work) I want her to try alternative treatment(s). Thank you for posting this because you just helped us have some hope.

God Bless.

RobbinsEgg

deberst said:

My mom was diagnosed with cholangiocarcinoma two months ago and it is stage 4--it has taken over her liver and local lymphnodes already. She is on an aggressive chemo combination of Avastin and Gemzar right now, and in four more weeks she'll have her second CT scan. Hopefully it will have improved but the doctors were not very confident about the outlook for her. She is having side effects that are making her miserable and I am worried about two things: 1)her quality of life while she is still with us and 2)(especially if the chemo does not work) I want her to try alternative treatment(s). Thank you for posting this because you just helped us have some hope.

God Bless.

Hi deberst,
Sorry to hear about your mom. Usually at the point cholangiocarcinome is diagnosed, it's already stage 4. And you are right about the doctors, they don't really give much hope to traditional treatments, I guess because the track record is not very good. That was the reason my wife decided not to go that route, as well as the quality of life issue. I would urge you to at least do some research into IPT by visiting their website, find a doctor on their website (hopefully) near to you, email Chris Duffield at IPT (he's very helpful) and ask a lot of questions. This way you'll be prepared to make a decision immediately if and when necessary, because time is of the essence.
Please email me on this board if you have questions, or want more details about my wife's treatment. I'd be glad to help.
FYI, my wife has finished her 12th treatment (out of 18-24) and continues to feel great and is eating well, She's due for another CT scan and blood test in about a week and we are very optimistic that we will see continued improvement. There is indeed a good reason to have hope.
I hope your mom and you continue to muster the strength to deal with this, and my thoughts are with you.
p.s. the ipt website www.iptq.com

jperryyoga

Thank you so much for your postings. My friend has been diagnosed with bile duct cancer and as you can imagine, his mood is not good - especially after his doctor told him about the statistics and gave him the news that he had to have surgery. It is disheartening to hear about the costs of treatment (seeing as how he has Kaiser). I will study the web site you mention and help advocate where I can. Best to you and your wife. Would be great to hear an update or any new info you come across. Blessings, Jeanne

RobbinsEgg

jperryyoga said:

Thank you so much for your postings. My friend has been diagnosed with bile duct cancer and as you can imagine, his mood is not good - especially after his doctor told him about the statistics and gave him the news that he had to have surgery. It is disheartening to hear about the costs of treatment (seeing as how he has Kaiser). I will study the web site you mention and help advocate where I can. Best to you and your wife. Would be great to hear an update or any new info you come across. Blessings, Jeanne

Jeanne,
Give my best to your friend. I hope and pray he/she finds a way to fight this. Yes, the costs can be prohibitive, unfortunately. Our insurance company at this point is only paying what amounts to 25%. I have filed a grievance with the Independant Medical Review Board in hopes of them finding that they should pay the same as if this were done by a preferred provider. We've only been able to afford this by going into debt, as well as help from some family members.
It's really a shame how the medical and insurance systems work in this country. The people at IPT have been desperately trying to get the studies done to get approval of the treatment, but are constantly running into roadblocks. It's how the system is set up. It protects mediocrity and in some cases, bad medicine.
Hopefully within 5 years the will be successful in getting approval. If and when they do, it will undoubtedly become the preferred treatment for cancer of all types, and thus be covered by the likes of Kaiser and everyone else. Unfortunately for people such as your friend and thousands of others, they don't have the luxury of waiting. I hope your friend can find a way to do this treatment if wanted, as it offers a way out of the nightmare for many people.
Definitely research this for yourself - contact Chris Duffield at IPT - he's very helpful and may be able to give you some ideas on how make this do-able for your friend.

We are awaiting the latest test results right now (done after her 14th treatment), and I'll post the update here when we get them.
God Bless

jperryyoga

RobbinsEgg said:

Jeanne,
Give my best to your friend. I hope and pray he/she finds a way to fight this. Yes, the costs can be prohibitive, unfortunately. Our insurance company at this point is only paying what amounts to 25%. I have filed a grievance with the Independant Medical Review Board in hopes of them finding that they should pay the same as if this were done by a preferred provider. We've only been able to afford this by going into debt, as well as help from some family members.
It's really a shame how the medical and insurance systems work in this country. The people at IPT have been desperately trying to get the studies done to get approval of the treatment, but are constantly running into roadblocks. It's how the system is set up. It protects mediocrity and in some cases, bad medicine.
Hopefully within 5 years the will be successful in getting approval. If and when they do, it will undoubtedly become the preferred treatment for cancer of all types, and thus be covered by the likes of Kaiser and everyone else. Unfortunately for people such as your friend and thousands of others, they don't have the luxury of waiting. I hope your friend can find a way to do this treatment if wanted, as it offers a way out of the nightmare for many people.
Definitely research this for yourself - contact Chris Duffield at IPT - he's very helpful and may be able to give you some ideas on how make this do-able for your friend.

We are awaiting the latest test results right now (done after her 14th treatment), and I'll post the update here when we get them.
God Bless

Thank you for your encouragement. Surgery is scheduled for him on August 31. Could you tell me more in detail what your wife had, at what point you started ipt and what chemotherapy regimine she is on? I know that's a lot, but it would help to know how similar their cases are. Blessings,
Jeanne

RobbinsEgg

jperryyoga said:

Thank you for your encouragement. Surgery is scheduled for him on August 31. Could you tell me more in detail what your wife had, at what point you started ipt and what chemotherapy regimine she is on? I know that's a lot, but it would help to know how similar their cases are. Blessings,
Jeanne

Hi Jeanne,
My original post explains a lot about her particulars, as well as when she started IPT. To clarify, her tumor was wrapped around her biliary tree and fused to the liver. At the point of her surgery it did not appear that the cancer had metasticised.
The surgery took 9 1/2 hours, where they removed most of the tumor except what was directly attached to the liver. They also had to cut into 4 ducts to do this and then reconstruct them. They also removed her gallbladder.
She started IPT in May, 7 months after the surgery. If we had known about it earlier, she would have started it earlier, before the cancer had spread to her liver.
IPT is a form of chemotherapy, but without the side effects and toxicity, because of the low dosage. Specifically, the chemo agents used in my wife's case are Gemcitabine and Cisplatin, which if given in the normal way, are quite nasty. But because of way they are delivered - as I explain in my original post - she has had no adverse reactions, other than occasionally a mild nausea several hours after a treatment. The doctor says that this is likely caused not from the chemo, but from the dead cancer cells that are working their way out of the system. She continues to gain weight and feels good and has good energy.
I hope and pray that your friend's surgery is a success. If they can remove all of the tumor and it hasn't spread, that is obviously the preferable situation to be in. Treatment afterwards is still essential though to do the best to preventing it from returning. I hope there's a way that your friend is able to do IPT, because of its effectiveness and ability to keep you out of bed and living life.
God bless
David

RobbinsEgg

Hi All,
I want to post the results of my wife's most recent CT scan.
There were no peripheral lesions detected in the liver. The liver is now clear.
The tumor mass has continued to shrink and is now 1 1/2 cm's
She continues to gain weight and she feels good. She looks healthy and continues to lead a normal life.
We are obviously more than encouraged by this great news, and we are very optimistic about her beating this thing.

coulocm

RobbinsEgg said:

Hi All,
I want to post the results of my wife's most recent CT scan.
There were no peripheral lesions detected in the liver. The liver is now clear.
The tumor mass has continued to shrink and is now 1 1/2 cm's
She continues to gain weight and she feels good. She looks healthy and continues to lead a normal life.
We are obviously more than encouraged by this great news, and we are very optimistic about her beating this thing.

I am very glad to hear that this treatment is working for your wife. My dad was diagnosed with bile duct cancer in Sept of 2001. He was given 1 month to live. We flew with him to NYC to Memorial Sloan Kettering Hospital where they performed surgery to remove the tumor, galbladder, reconstruct the bile ducts and removed 80% of his liver. By a miracle he recovered and has gone 3 years without any signs of cancer, until recently. His local doctors in Chicago have found nodules in his lung that appear to be growing - metastasized cancer most likely. They would like to start him on Gemzar and FU-2 (?). He has no symptoms of lung metastasized cancer except for a cough. His doctors have performed CT scan, Xray, and PET scan to determine if it is cancer. Since his bile duct surgery, he has had a complication that his platelets are very very low always, around 30,000. We are concerned that even with a platelet transfusion prior to chemo, his platelets may only reach 75,000 or so. It seems that chemo is his only option right now. I am curious if anyone out there has had a similar experience or knows of other options.

n2unana

coulocm said:

I am very glad to hear that this treatment is working for your wife. My dad was diagnosed with bile duct cancer in Sept of 2001. He was given 1 month to live. We flew with him to NYC to Memorial Sloan Kettering Hospital where they performed surgery to remove the tumor, galbladder, reconstruct the bile ducts and removed 80% of his liver. By a miracle he recovered and has gone 3 years without any signs of cancer, until recently. His local doctors in Chicago have found nodules in his lung that appear to be growing - metastasized cancer most likely. They would like to start him on Gemzar and FU-2 (?). He has no symptoms of lung metastasized cancer except for a cough. His doctors have performed CT scan, Xray, and PET scan to determine if it is cancer. Since his bile duct surgery, he has had a complication that his platelets are very very low always, around 30,000. We are concerned that even with a platelet transfusion prior to chemo, his platelets may only reach 75,000 or so. It seems that chemo is his only option right now. I am curious if anyone out there has had a similar experience or knows of other options.

my aunt was just diagnosed with cholangiocarcinoma (bile duct cancer). the drs are not willing to help her here in south tx. we the family are having to look for a dr. she is 73?

AuthorUnknown

n2unana said:

my aunt was just diagnosed with cholangiocarcinoma (bile duct cancer). the drs are not willing to help her here in south tx. we the family are having to look for a dr. she is 73?

Hi,

I was diagnosed to have cholangiocarcinoma in 2002. The doctor gave me one year to live.

Evidently, only Mayo Clinic has very high success rate in treating a non-metastasized cholangiocarcinoma by doing liver transplant. I believe their 5-year survival rate is about 90%. I had my liver transplant done in 2003 and I am doing well now. I hope this info will help you and others. Mayo Clinic Website: http://www.mayoclinic.org/bileductcancer-rst/

Good luck.

FrenchGuy

Hi RobbinsEgg,

I've been reading carefully your post and took some infomrations about IPT.
I'm quite disturbed with this therapy as ther is no studies about it. And the website is made bu one of the doctors....
How to be sure we can get a good treatment there and that is not only business ?
Anyway I hope your wife goes better now. Was her last scan good ?
Please sorry for my poor english.

RobbinsEgg

coulocm said:

I am very glad to hear that this treatment is working for your wife. My dad was diagnosed with bile duct cancer in Sept of 2001. He was given 1 month to live. We flew with him to NYC to Memorial Sloan Kettering Hospital where they performed surgery to remove the tumor, galbladder, reconstruct the bile ducts and removed 80% of his liver. By a miracle he recovered and has gone 3 years without any signs of cancer, until recently. His local doctors in Chicago have found nodules in his lung that appear to be growing - metastasized cancer most likely. They would like to start him on Gemzar and FU-2 (?). He has no symptoms of lung metastasized cancer except for a cough. His doctors have performed CT scan, Xray, and PET scan to determine if it is cancer. Since his bile duct surgery, he has had a complication that his platelets are very very low always, around 30,000. We are concerned that even with a platelet transfusion prior to chemo, his platelets may only reach 75,000 or so. It seems that chemo is his only option right now. I am curious if anyone out there has had a similar experience or knows of other options.

I think you should seriously consider IPT. It's great your dad had a successful surgery, but this type of cancer is quite aggressive and usually comes back in one form or another. There is a Dr. Ayres in Illinois that is one of the best, check him out if you can.
Best wishes and prayers.

RobbinsEgg

FrenchGuy said:

Hi RobbinsEgg,

I've been reading carefully your post and took some infomrations about IPT.
I'm quite disturbed with this therapy as ther is no studies about it. And the website is made bu one of the doctors....
How to be sure we can get a good treatment there and that is not only business ?
Anyway I hope your wife goes better now. Was her last scan good ?
Please sorry for my poor english.

Hi FrenchGuy,
I understand your concern, unfortunately we are forced into a position of having to wade through huge amounts of information and possibilities (or frauds) to try to find something that works for our loved ones or ourselves. Sadly there is no one source that everyone can go to find the proper treatment for any and everyone. My situation regarding my wife was the same. It was by sheer dumb luck and perhaps divine intervention that we found out about IPT. We made an educated decision based on the research I did and talking with many people to try IPT and I have posted on this board because I am seeing with my own eyes that it works. I have also seen that it does not work for every case, but I do see that it has a much better success rate than traditional forms of treatment, and it leaves the vital organs in your body intact to continue doing what they need to do to hopefully keep you healthy long into the future.
It's been 2 months since I've posted anything on this board, mainly because of a very hectic schedule, but I can now say that my wife, we believe, is virtually cancer free. She will have a PET scan within the next week or two to confirm this, but the doctor that's been treating her is confident that the cancer is gone. By all appearances, I would agree, and can't wait for the test results. She is back to her normal weight, she is living her life as normal and she looks and feels great.
The biggest thing , I think lies ahead. What most people don't realize is how important their immune system is to maintaining health. I am determined to have my wife adopt a reasonable regimen of supplements, a good diet with organic foods, juicing to keep the body detoxed, and a nurturing of a healthy state of mind. These steps should help insure that her body and immune system is strong enough to fend off any recurrence of the cancer. Nothing in life is guaranteed, I know, but there are many things one can do to increase the odds of long term survival after cancer.
I will of course post the results of he PET scan once I get them for all that are interested.
God Bless

helenkogan

RobbinsEgg said:

Hi FrenchGuy,
I understand your concern, unfortunately we are forced into a position of having to wade through huge amounts of information and possibilities (or frauds) to try to find something that works for our loved ones or ourselves. Sadly there is no one source that everyone can go to find the proper treatment for any and everyone. My situation regarding my wife was the same. It was by sheer dumb luck and perhaps divine intervention that we found out about IPT. We made an educated decision based on the research I did and talking with many people to try IPT and I have posted on this board because I am seeing with my own eyes that it works. I have also seen that it does not work for every case, but I do see that it has a much better success rate than traditional forms of treatment, and it leaves the vital organs in your body intact to continue doing what they need to do to hopefully keep you healthy long into the future.
It's been 2 months since I've posted anything on this board, mainly because of a very hectic schedule, but I can now say that my wife, we believe, is virtually cancer free. She will have a PET scan within the next week or two to confirm this, but the doctor that's been treating her is confident that the cancer is gone. By all appearances, I would agree, and can't wait for the test results. She is back to her normal weight, she is living her life as normal and she looks and feels great.
The biggest thing , I think lies ahead. What most people don't realize is how important their immune system is to maintaining health. I am determined to have my wife adopt a reasonable regimen of supplements, a good diet with organic foods, juicing to keep the body detoxed, and a nurturing of a healthy state of mind. These steps should help insure that her body and immune system is strong enough to fend off any recurrence of the cancer. Nothing in life is guaranteed, I know, but there are many things one can do to increase the odds of long term survival after cancer.
I will of course post the results of he PET scan once I get them for all that are interested.
God Bless

Dear RobbinsEgg

Thanks so much for sharing your experiences in such detail. My Dad was diagnosed with cholangiocarcinoma in May after wrongly being diagnosed with primary sclerosing cholangitis. Since then (or perhaps even beforehand) the tumour has spread to the abdomen and duodenum. We were very hopeful during the first course of chemo, but then it stopped having an effect. You described being "crushed" by bad news, that exactly how our family feels especially as the second course has weakened him terribly. He is jaundiced, has very swollen feet and abdomen, is so tired all the time and battles so hard to be optimistic. I have looked into IPT since reading your messages and have found a Dr here in the UK and have just now e-mailed him, hoping that he can help. I share your experiences of wading through "miraculous" cures trying to find genuine help and understanding. I have battled so much with hope these last few weeks, so unsure that juicing and organic food can be enough for my father and at the same time so scared of what the chemo is doing to him. I know nothing is certain, but still I just wanted to thank you again for sharing what you have been through and know that you have made me feel stronger and better armed to fight this battle.

My many thanks and joy that you and your wife have a bright future together after what i am sure has been a very lengthy battle

Very best wishes

Helen

RobbinsEgg

helenkogan said:

Dear RobbinsEgg

Thanks so much for sharing your experiences in such detail. My Dad was diagnosed with cholangiocarcinoma in May after wrongly being diagnosed with primary sclerosing cholangitis. Since then (or perhaps even beforehand) the tumour has spread to the abdomen and duodenum. We were very hopeful during the first course of chemo, but then it stopped having an effect. You described being "crushed" by bad news, that exactly how our family feels especially as the second course has weakened him terribly. He is jaundiced, has very swollen feet and abdomen, is so tired all the time and battles so hard to be optimistic. I have looked into IPT since reading your messages and have found a Dr here in the UK and have just now e-mailed him, hoping that he can help. I share your experiences of wading through "miraculous" cures trying to find genuine help and understanding. I have battled so much with hope these last few weeks, so unsure that juicing and organic food can be enough for my father and at the same time so scared of what the chemo is doing to him. I know nothing is certain, but still I just wanted to thank you again for sharing what you have been through and know that you have made me feel stronger and better armed to fight this battle.

My many thanks and joy that you and your wife have a bright future together after what i am sure has been a very lengthy battle

Very best wishes

Helen

Hi Helen,
Thank you very much for your kind words. My thoughts and prayers are with you and your Dad. I hope that you are able to get your questions answered by the MD you contacted through IPT. One good thing about IPT, is that the doctors that practice it are always sharing info and keep on top of it all. One note, Juicing and organic foods (and supplements) alone will not stop this type of cancer alone, however they are very good for building up the immune system and helping the organs function better, which can only help. I hope your dad is able to do IPT, as I am for obvious reasons, a firm believer in it.
All The Best

Philipritchard

RobbinsEgg said:

Hi Helen,
Thank you very much for your kind words. My thoughts and prayers are with you and your Dad. I hope that you are able to get your questions answered by the MD you contacted through IPT. One good thing about IPT, is that the doctors that practice it are always sharing info and keep on top of it all. One note, Juicing and organic foods (and supplements) alone will not stop this type of cancer alone, however they are very good for building up the immune system and helping the organs function better, which can only help. I hope your dad is able to do IPT, as I am for obvious reasons, a firm believer in it.
All The Best

Hi,

Thank you for your posting regarding your wife's condition. I am an acquaintance of Helen Kogan. My question is how can we get the same treatment that your wife was undergoing, or get to speak to a specialist about her Father's particular symptoms, wrt to having IPT. It certainly seems to have worked. If you can help in any way I would be very grateful. As far as I know it's not available in the UK, but do you know of any practitioners in Europe? If not we may have to consider getting him to the US.
Many thanks. I hope things are continuing to go well for you and thank you again for posting your original message.

Philip Pritchard.