CancerCompass message board discussion started by Wamba138 on 7/7/2005 http://www.cancercompass.com/message-board/message/all,2419,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My wife is 46 years old and has stage 4 gallbladder cancer. We have been told it is unresectable. The most aggressive surgeon I have come across is Dr. Jesus Esquivel at St. Agnes Hospital in Baltimore, MD. Here is the link: http://www.stagnes.org/cportal/general/content.asp?cid=301. I have also contacted a Dr. Leslie Blumgart at Sloan-Kettering in New York and Doctor Nadar Hanna at the Greenbaum Center at the University of Maryland. All of these doctors reviewed my wife's records and called and talked with me. My wife started a clinical trial but unfortunately got the older medicine, 5FU and Leucovorin. She is on her second round. On the 27th she will have a CAT scan to see how the disease has responded. She will then start a new trial with rebeccamycin and oxaliplatin in August. Trials can be found at http://www.nci.nih.gov/. In California, I found a company called Rational Therapeutics, www.rational-T.com. Thet test tumor samples in the lab and tell you which chemotherapies are most effective. My doctor said this doesn't work, but in desperate situations you have to try anything. Anyone who has experience with this disease please keep responding. Even if your loved one has passed, you input and support are invaluable. Rick Wamba138 Thu, 07 Jul 2005 00:00:00 GMT Hi Rick, I'm in the same boat that you are in. My dear husband was diagnosed 2 months ago. They did take out the gall bladder but it had spread through the wall and into the bile duct. They couldn't do anything more. They did put a stent in place to drain the liver (before the surgery). Two weeks ago, he got an infection and was put back in the hospital for the last week. They replaced the stent but discovered that the remaining cancer that they were unable to get has doubled in size (IN TWO MONTHS!) and has blocked the bile duct from draining the liver. The new stent will only drain about 20% which has caused his biliruben to go up to 17.9. We were in the process of getting him into MD Anderson Cancer Center in Houston, Texas. Now, they won't take him because they can't help him unless his biliruben comes down to at least 2. And they also told me that they have NO SPECIFIC treatment for gall bladder cancer, only clinical trials. We know nothing more to do. I'm looking for alternative treatments or treatment centers that can help. We have been opposed to chemo but now we may have to consider it. Anything that you can offer will certainly help! I don't want to lose my husband! Debbie Amily Tue, 19 Jul 2005 00:00:00 GMT Hi Rick, I'm in the same boat that you are in. My dear husband was diagnosed 2 months ago. They did take out the gall bladder but it had spread through the wall and into the bile duct. They couldn't do anything more. They did put a stent in place to drain the liver (before the surgery). Two weeks ago, he got an infection and was put back in the hospital for the last week. They replaced the stent but discovered that the remaining cancer that they were unable to get has doubled in size (IN TWO MONTHS!) and has blocked the bile duct from draining the liver. The new stent will only drain about 20% which has caused his biliruben to go up to 17.9. We were in the process of getting him into MD Anderson Cancer Center in Houston, Texas. Now, they won't take him because they can't help him unless his biliruben comes down to at least 2. And they also told me that they have NO SPECIFIC treatment for gall bladder cancer, only clinical trials. We know nothing more to do. I'm looking for alternative treatments or treatment centers that can help. We have been opposed to chemo but now we may have to consider it. Anything that you can offer will certainly help! I don't want to lose my husband! Debbie Amily Tue, 19 Jul 2005 00:00:00 GMT Dear Debbie, My wife and I will keep you and your husband in our prayers. My research has shown that this disease is very difficult. Our oncologist told us the same thing; that gallbladder cancer has no "standard of care". There are several clinical trials available to our spouses. They all have criteria which must be met before the patient is accepted. I don't know if your husband qualifies, but an oncologist should be able to tell you. You can search the trials on www.nci.hih.gov . Here is a list of clinical trials but it is not complete: http://www.nci.nih.gov/search/ResultsClinicalTrials.aspx?protocolsearchid=1659908 As far as alternative treatments go, we are using the following: http://www.glyconutrients.myglycostore.com/go/products/GooAmbrotoseBrackets. The Ambrotose was recommended to us by a well known healer in Cleveland, Dr. Nemeh. You might be able to get it cheaper on Ebay. We also use the following machines: http://www.chimachineusa.com/hothouse.html http://www.chimachineusa.com/chiusamenu.html I got both on Ebay at a lower cost. My wife is also vegetarian now and takes PDA (a dietary enzyme supplement), vitamins, iron, and Paw-Paw. You should be able to find everything at a GNC or similar store. Recently someone told us of a pancreatic cancer patient who was given three months to live, went on a macrobiotic diet and is alive 12 months later with no sign of cancer. We have also tried to "alkalize" her through diet. I'm not so sure about this but many people swear by it. You can read about it here: http://www.ph-ion.com/?engine=adwords!632&keyword=%28alkalize%29&match_type= Never give up hope! Talk to as many people as you can and educate yourself on the internet. You will have to disregard all the doom and gloom, though. Keep in touch. Rick Wamba138 Tue, 19 Jul 2005 00:00:00 GMT Hi Rick: My father was diagnosed with stage 3 gallbladder cancer about 3 years ago. After his liver resection He was treated with Xeloda (I am not sure what the brand name in the states is. We live in Canada. The generic name is capecitabine) which is an oral medication. It is the prodrug of 5FU. He tolerated quite well and responded to it for about 18 months. I hope that helps Hmt78 Tue, 26 Jul 2005 00:00:00 GMT Dear Rick, Thanks for all the information. Some of it I've already put to use. I have managed to (or am doing now) make his diet as much alkaline as possible. I've read a lot of material on that (via internet). Something that I've checked into is "curcumin". My sister found reports on the trials with that done by Emory University, University of Texas, MD Anderson Cancer Center and the report was favorable. MD Anderson said that researchers have known since the early '50's that curcumin was able to prevent cancer and have also found that it responds well to TREATING cancer. I found more information from Life Extension.com and was able to purchase the curcumin (which incidentally, is a componant of the spice Turmeric) Something natural, which I believe in! Curcumin is a very effective anti-inflammatory component. Since I have Rheumatoid Arthritis, I felt that I should take it. I haven't given it to my husband yet. The company I bought it from gave me the number of the Life Extension Foundation and wanted me to call them and talk with them before giving it to Larry. There was something about the "bile duct" that they were not sure off. I don't want to be guilty of "chasing every rabbit" that comes along but people in desperate situations do desperate things! We have a very strong faith and that has played the major role in us being able to cope with this. We still believe in healing whether it comes from Drs. or from above! I don't care! I'll certainly keep you and your wife in my prayers too! Debbie Amily Wed, 27 Jul 2005 00:00:00 GMT My wife's can scan after two rounds of 5FU and leucovoran showed an increase in the size of the lesions on her liver. Everything seemed to hold steady. As I mentioned before, we will start a new trial of rebeccamycin and oxaliplatin on the 29th of August. Her liver enzyme tests could disqualify her though. If that is the case, she will start gemcitabine and cisplatin. I was disappointed but the struggle continues. Rick Wamba138 Tue, 02 Aug 2005 00:00:00 GMT My wife had to have a stent put in her bile duct on August 5th. Her urine had turned dark and a blood test showed the bilirubin was elevated. The ALT and AST levels in her blood were 8 times normal. I feel this was from the 5FU chemotherapy. Fortunately, by the time the clinical trial rolled around, her blood tests were back to normal. We have had two days of rebeccamycin (from a company named Exelixis), an experimental chemotherapy. We will go two more days and then one day of oxaliplatin. The cycle will be repeated in three weeks. Unfortunaltely, my wife's disease seems to have progressed substantially in August. She has just started taking oxycondone for pain. I expected my wife to battle this disease for a couple of years but the pain and the stent have been a wake-up call. I sure pray that the chemotherapy does something positive! Rick Wamba138 Tue, 30 Aug 2005 00:00:00 GMT Hi Rick, My mother (48) was just recently diagnosed with the same. Via what channel were you able to get your wife's information to these doctors? Given how respected they are, how willing were they to look at the reports and respond to you? I'm just starting down this scary path now and could use any help that I can get, so it's much appreciated. Thanks very much. Makabeta Wed, 31 Aug 2005 00:00:00 GMT Hello, I wish you the best in treating your mother. Make sure you push your doctors hard for an accurate picture of your mother's disease, especially which stage the cancer is in. Many clinical trials are running throughout the country but the trials are isolated to certain cancer centers. Your doctor should be able to help you sort through them all. If the doctor is not helpful don't be afraid to change doctors. Unfortunately, gallbladder cancer is very hard to treat. The doctors I contacted were very willing to look at my wife's case for free. I sent them all information I had via FedEx, surgery reports, CAT scans on CD, any other tests, etc. I found them all on the internet. I would be willing to send you all the contacts I have via email. My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---. Rick Wamba138 Wed, 31 Aug 2005 00:00:00 GMT I have just signed on here the last few days looking for alternative anything for my mother's pain, heartache and depression over this thing called cancer. She had bladder cancer 7 yrs ago, hit the 5 yr mark clean, then over the last year something has raged up inside of her causing all of the above. Her liver has possible growths on it, spots in her lung, her gall bladder is full of sludge and stones the dr said. She is a puddle of tears and fear and I hate to see it. I feel useless to my mother who has always fixed me, what can I do? What kind of info can you send me on this to read through and share with my mother? Sincerely, Faith email --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- Faithr Tue, 06 Sep 2005 00:00:00 GMT Faith, Start by reading all the posts in this section and in the bile duct and bladder cancer section. A lot of information is in those posts. Then you need to get a diagnosis. What cancer does she have and what stage. Find a doctor who specializes in the type of cancer your mother has. She will have to pull herself together and fight. Turn to prayer, as God can sustain us through anything. You can email me at wamba138 at hotmail dot com for the information I have found. Put the address in the correct format. Rick Wamba138 Wed, 07 Sep 2005 00:00:00 GMT Mom went to surgery today, they were back out in about 20-30 minutes. Dr said the gall bladder was fine, but the liver was metastasized and full of cancer at stage 4. But they still need to find where it is coming from. They still can't tell. My mother says it is done now, there is no sense in it. That can't be it, who out there has anymore advice? Anything at all. I refuse to think that is all and that is that and it's done. There has to be something else. And they say they can't transplant from any one because the cancer will just eat it up again. Anything at all from anyone, I am willing to listen.......faithr, he did not say any time spans though so I took that as a good sign. Faithr Thu, 08 Sep 2005 00:00:00 GMT Rick, My wife (52 yrs old)has cholangiocarcinoma too. We live in the Baltimore area. She had surgery at Hopkins and is receiving outpatient chemo near Franklin Square. Please contact me at ---Message edited by CancerCompass staff. Email address removed to protect personal information. Please review the CancerCompass membership guidelines at http://www.cancercompass.com/common/guidelines.html---, so that we can exchange info, etc. Mark Slogger Thu, 08 Sep 2005 00:00:00 GMT The combination of rebeccamycin and oxaliplatin has seemed to help my wife immensely. She has stopped taking pain meds and her ascites has not re-occured. My wife looks great and is back to "normal" for now. Praise the Lord!! Her doctor, Dr. Asfin Dowlati, was amazed at her progress. He is very enthusiastic about the near future. Her next CT scan is October 3rd. I will post after that. Wamba138 Tue, 20 Sep 2005 00:00:00 GMT Ellen's CT scan showed a 45% reduction of the lesions on her liver. Unfortunately, her white blood cell count was too low for chemo today. We will have to wait a week. I found out that most patients can only tolerate about 6 rounds of Oxaliplatin due to nerve damage. When this happens to Ellen, she will continue on with rebeccamycin alone. During the last round of chemo, the oxaliplatin hit her hard. She couldn't write, had trouble walking, and as usual couldn't hold or drink anything cold. But these symptoms went away after a few days. Wamba138 Mon, 10 Oct 2005 00:00:00 GMT hi, I hope that your wife is continuing to do well on the chemo. did your dr say that that combination is more effective then gemcitabine and cisplatin? my dad has just had his second operation. I did as you reccomend and sought a second opinion. the physician reccommended a surgeon here in the UK who takes on "difficult cases". the cancer was cut out yesterday. i don't know yet whether he managed to get clear margins - i expect my dad will need chemo as a 'mop up'. however for now we have some good news and this has picked up my dad mentally. I can't stress enough how important it is to seek further opinions on treatment. the surgeon who did the first op was just not experienced enough with this rare type of cancer. after my dad's first op i was told that he only had 3 months to live. Chemotheraputic regimes are well developed for the more common cancers, however little research seems to have been done in respect of bile duct cancer. I am now turning my attention to finding the best chemo regime that is out there for this. If anyone reading this posting can advise then please reply to me. Together we can fight this dreadful disease. Jules1970 Sun, 16 Oct 2005 00:00:00 GMT Dear Julie, Since this clinical trial is for a variety of solid tumors, I can't say if it is more effective than gemcitabine/cisplatin. Rebeccamycin (XL119) alone is in a Phase III trial for bile duct cancer. It has definitely shown some positive effect on bile duct cancers, but the trial will tell if it is better than a regime of 5FU/Leucovorin. Our doctor mention this cancer is more prevalent in South America. There, Gemcitabine/cisplatin is the chemo of choice. Our doctor suggested that regime for Ellen if this trial didn't work. Glad to hear your Dad had successful surgery. Very exciting. We hope things only continue to get better for him. Rick Wamba138 Tue, 18 Oct 2005 00:00:00 GMT rick, thanks for your posting. I find it a bit disconcerting that the message boards do not seem to have been added to that recently by all those who have written regarding this type of cancer. i hope that everybody is doing okay, and i hope your wife is progressing with her treatment. do they intend to remove the tumor if the chemo shrinks it? we are in the UK and i just wanted to write and reccommend a surgeon over here who specialises in this area and is more experienced then most. he has been able to remove the tumor in my dad, after one failed op to remove it. To anyone out there suffering from this nightmare disease I reccommend you consult Professor Peter Lodge who is based in Leeds. He is superb and has taken great care of my Dad and operates on cases that other surgeons dismiss as 'hopeless'. My Dad continues to recover from the operation well and I really look forward to having him home again. stay in touch.. best wishes jules Jules1970 Tue, 25 Oct 2005 00:00:00 GMT Thanks for your concern Julie! My wife had her third round of the rebeccamycin/oxaliplatin regime last week. She continues to look and feel fine. She is off pain meds and works every day. I will look into sending her information to Dr. Leeds. We have a CT scan scheduled for 10/31 to confirm her previous CT scan's findings of significant shrinkage. I will send that information to several surgeons. I have also investigated a clinical trial at the National Cancer Institute involving transplanting a sibling's stem cells into my wife. This treatment is similar to the standard treatment for leukemia. The hope is that the stem cells produce a new immune system which attacks the cancer. Hope your Dad continues to heal rapidly. Hopefully God has provided a cure to him! Rick Wamba138 Wed, 26 Oct 2005 00:00:00 GMT It has now been over six months since my wife, Ellen, was diagnosed with Stage 4 cholangiocarcinoma. Ellen has started her fourth round of rebeccamycin and oxaliplatin. Her third round went very well. See has rebeccamycin for 5 days, one hour infusion. On the fifth day oxaliplatin is added in an additional two hour infusion. Before the chemo on the fifth day, she takes Emend, an anti-nausea drug. Then before the oxaliplatin they give her an infusion of Decadron (dexamethasone). On the sixth and seventh days she takes another Emend and oral Decadron. She is on a three week cycle but was delayed a week between the second and third rounds because of a low neutraphil count. After her third round, she also got a shot of Neulasta, a growth hormone which stimulates the white blood cell production. It seemed to work, as after three weeks the blood count was good enough! Our doctor educated us to the fact that Ellen's peritoneal disease (metasticised cancer into her abdomen) is the cancer that will cause problems. Ellen's liver lesions were not as much of a concern to him. She may have to have her stent replaced soon. Our doctor prefers to do this pre-emptively. He also said that most solid tumors do not respond to more than six rounds of chemotherapy. We are looking for the next step. Some type of gemcitabine based regime seems to head the list. But enough about health. We are going on a cruise next week and will forget all this stuff at least for a few days. Happy Thanksgiving everyone!!! Rick Wamba138 Wed, 09 Nov 2005 00:00:00 GMT hi rick, I hope that you and ellen managed to enjoy a decent break away from all of this.. i just wanted to say that my dad is doing well and that we have mentioned to Professor Lodge in Leeds that you may be contacting him, he says that he is happy to review your wife's films (if you have them on CD Rom). It must be hard trying all these different chemo drugs and especially punishing on ellen's body - I strongly reccomend that you get Prof Lodge to look at the films - he adopts an aggresive technique in taking out these tumours - we tried Drs in the states and nobody would touch it - my Dad's tumour had pushed its way through the diaphragm, attached itself to one of his lungs and the duodenum - prof lodge had to reconstruct the diaphragm. Prof Lodge is confident that he got all of the cancer out and my Dad's chances are greatly improved, he has been told that he won't even need chemo.. contact details: Prof Peter Lodge via BUPA Hospital Leeds, ENGLAND Best wishes, Jules Jules1970 Mon, 21 Nov 2005 00:00:00 GMT Our cruise was a great success. All 6 of Ellen's siblings, their spouses, her 80 year old mother, and Ellen's best friend were onboard. Ellen had a wonderful time. Ellen's fifth round was routine. She had chemo the week of November 29th. After chemo, the weather in Cleveland turned frigid. Ellen has had a difficult time adjusting to the cold weather. She cringes at the thought of going out for any reason. Following "JeffS" suggestion, we contacted Dr. Bruckner in Brooklyn. He had some novel ideas. He suggested a chemo regime of "Irinotecan - Gemzar (5FU) - Oxaliplatin - Taxotere - Avastin regimen which has been very powerful at low, well tolerated doses (Gemzar and Taxotere may reverse resistance to top 1 drug or Oxaliplatin)". I hope this helps some of you. We have a CT scan on December 12th, then chemo on the 19th. I will post after the sixth round. Have a great Christmas! Have faith in Jesus Christ. Rick Wamba138 Fri, 09 Dec 2005 00:00:00 GMT Ellen is back in the saddle again!!! Her December 12th CT scan showed a stalemate except for one lesion on her liver that had grown. Last time Ellen developed hives during the oxaliplatin infusion. So this Friday, the 23rd, they will infuse the oxaliplatin over six hours instead of two!!! We will be at the hospital all day. When will I start my Christmas shopping? They are also going to give Ellen a different steroid and benadryl before the oxaliplatin. Ellen is in good spirits as she read a posting on cancer-info.com's gallbladder section which told the story of a five year survivor of stage IV gallbladder cancer. What a lift. FYI, Dr. Dowlati explained to us how he determines if a clinical trial continues to be effective. During the trial the total area of measured lesions hits a minimum. Subsequent CT scans are compared and if the total area increases 20% above the minimum, the cancer is deemed to be growing. Hope everyone recieves the blessings of God this Christmas. We pray for everyone afflicted with this disease. May God grant you His peace during your struggle. Rick Wamba138 Tue, 20 Dec 2005 00:00:00 GMT Rick, You and I corresponded last summer over the dreadful cancer that both your wife and my husband had. My husband lost his battle October 29 but I'm thrilled at your wifes' progress. You both will be in my prayers! And I hope to read of a complete healing one day! Sincerely, Debbie Amily Tue, 17 Jan 2006 00:00:00 GMT Hello everyone, Sorry I have neglected writing to you. Ellen was removed from the clinical trial in January because her blood counts were not coming back. Our oncologist, Dr. Dowlati, said this is expected with Rebeccamycin. Most people can't go past six rounds because of the damage to the bone marrow. Now Ellen is on Gemzar. She continues to do well, with no signs of the cancer expanding. We won't have a CT scan until early March. Dr. D said he had a women in Ellen's situation last another two years on Gemzar after Rebeccamycin. Of course we are praying for a miracle, but two years sounds like twenty in our situation Ellen has developed an incisional hernia near her stomach. The doctors don't want to operate for a variety of reasons, so she has to deal with it. I know it makes her very uncomfortable. I hope these postings have helped someone in a similar situation. Life is precious. Rick Wamba138 Sat, 11 Feb 2006 00:00:00 GMT Hello again to all, The last month has gone poorly for Ellen. In late February, her cancer started to grow again. Her belly filled with ascities and combined with the hernia, Ellen looked like she was six months pregnant. She has had to be drained three times, about once every 7 days. The doctors remove about 4 quarts of fluid each time. Dr. Dowlati put her on Taxotere. She has become very tired and is losing her hair. Poor woman! I can only imagine the sychological impact this is having on her. We decided to visit Dr. Howard Bruckner at the Lutheran Medical Center in Brooklyn, New York. He uses a cocktail of four to five chemos in low doses. Even though we live in Cleveland, Ohio we plan to begin treatment at the end of the month. Dr. Dowlati encouraged us in this endeavor. He said he will support Dr. Bruckner's efforts with blood tests, CT scans, etc. Bruckner seems to be our last chance. I haven't seen any clinical trials that would help Ellen. Besides, Ellen is getting to weak to take much more. Keep us in your prayers. Rick Wamba138 Sat, 18 Mar 2006 00:00:00 GMT Hello to all, Well the visit to New York backfired on us. Dr. Bruckners treatment wiped out Ellen's bone marrow. Her platlets have bottomed out at 9000. Platlet transfusions have not worked because Ellen is rejecting the platlets. Her ascites cannot be drained until the platlets come up. Ellen is extremely uncomfortable and in pain. We will have to wait for a better match to raise her platlets via transfusion. Right now thing look bleak. We have hospice coming in. Further chemo is out of the question. We fought a long battle but it appears the cancer will win the war. Rick Wamba138 Sun, 23 Apr 2006 00:00:00 GMT Rick, I have followed your and Ellen's journey through her bout with gall bladder cancer. You have been so generous with your information and so thorough in your care for your wife. I have connected personally with most of Ellen's experiences and have benefited from knowing I am not alone. I never take a "pause" in my own cancer for granted. I am so sorry that things are now at the hospice state. I hope that Ellen can be comfortable in knowing that you both did everything possible. May you both be blessed with comfort from higher powers. Compassionately, Linda L W. Wed, 21 Jun 2006 00:00:00 GMT I lost my wife to gallbladder cancer on June 12th, 2006. Ellen was my universe. She was very gracious and elegant as she faced her final days. She knew that heaven was the outcome and looked forward to going home. I can only hope I have her faith when my time comes. Wamba138 Wed, 21 Jun 2006 00:00:00 GMT I read your posts for the 1st time tonight and was struck by your faith and your ability to seize the moments you had along the journey. My prayers are with you as I am sure your wife is also looking over you and keeping you in God's loving care. People talk of losing the battle with cancer but people like you and your wife find ways to keep the cancer from beating your spirits and your faith. Thank you for sharing your journey. Brigid Wed, 13 Sep 2006 00:00:00 GMT I agree with Bridget. Rick, you have been so generous with your helpful support over this past year. What a brave man! Your wife was truly blessed to have you by her side through this ordeal. I hope you take comfort from knowing you have helped so many others on this path. Audreyp Mon, 18 Sep 2006 00:00:00 GMT