CancerCompass message board discussion started by Lilweezer40 on 10/10/2006 http://www.cancercompass.com/message-board/message/all,7194,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hello, I am looking for someone to converse with my sister who has the above disease. She needs someone who would understand how she is truly feeling and I thought this would be a good resource. thank you so much, Louise Lilweezer40 Tue, 10 Oct 2006 00:00:00 GMT Hi Louise, My name is Jeff and I have been battling liver cancer since 1998. I've had left lobe resection of my liver and gall bladder removed and over two years of chemotherapy. The cancer returned to my liver and both lungs. I guess I have been there and done it and would be more than happy to share any infor or answer any questions your sister may have. I am continuing my battle and have been holding my own. How many months or years of fighting I still have depends on my attitude, staying healthy,and believeing that my prayers are being heard. Using my mind and visulization to slow things down has helped me a lot. You need to learn to take control and tame the beastly cancer and live with it before you'll be able to slow it down. My prognosis from the Oncology Doctors has always been stated as poor with 6 months to a year but I'm now passed my 6th year. Cancer reacts differently for different people. The type of cancer, grade (low/high)density, location , your immune system; it goes on and on. The only thing I know for sure is if your a quitter and just throw your hands up, get your affairs in order. If your a fighter then put on the boxing gloves and get going. Become real knowledgable of all options and don't be afraid to explore. My philosophy is live for today as yesterday is today gone pass and tomorrow will be today. Louise, again I would be more than happy to share my experiences with your sister, as Lord knows he has tested me on many occasions. Bless You and your Sister. Jeff G. Jeffger Wed, 11 Oct 2006 00:00:00 GMT Your email couldn't have come at a better time. My sister was on some other site and searched for a person to talk to with her disease and all that came back was her self.. I forwarded your message and told her that I would send you her email address if she liked. Your email is very inspiring! Lilweezer40 Thu, 12 Oct 2006 00:00:00 GMT Hi Jeff. My sister passed your email along to me. Good for you! It is very uplifting for me to hear your success story. I am interested in what kind of treatment you are on. I am in the process of embarking on a new kind of treatment. I share your zest for life and I intend on being one of the survivors. My oncologist has been about as blunt as yours but I'm trying my best to resist her "statistics" and prove them wrong. I would be interested to hear about your visualization. God Bless and thanks for answering our emails. Peach. Peach Thu, 12 Oct 2006 00:00:00 GMT Hi Peach, I'm currently on Gemcitibine and 5FU three weeks on one off. They are chemo drugs that have been around for awhile but still show effective response with alot of people depending on the type and location of cancer. Previously I was on Gemcitabine and cisplatin and changed cisplatin to carboplatin as cisplatin if used to long will cause numbness with needle and pins feeling in feet/toes and fingers. What type of cancer do you have? Mine is cholangiocarcinoma. My visualization is pretty basic but it relaxes me. I play one of those sound machines with the ocean waves and picture myself laying on the warm sandy beach, looking up at the beautiful blue sky with a touch of white clouds scattered about. An occasional flock of seagulls fly by and Caw Caw noise. Really peacefull. With each wave that comes in, I picture my cancer being pulled from my body as the water goes back out from the beach. I do this until I actually fall asleep. I have other things that I visualize while listening to healing CDs, like picturing clear water going through my liver and lungs cleansing my inner body. I also , with my hands resting on my liver and lungs I vision my hands as magnets and actually picture rays of white energy sucking the cancer out of my body. I always ask for the Lord's help with a little prayer. Once in the morning and once in the evening when things are quiet and peaceful. Releasing stress, I feel is so important. I've relaxed in a hot bubble bath so many times that I must have drained a lake somewhere. Ha! Well Peach, if you want, share your plan of action and I may be able to give you some pointers as far as what I did to control side effects. I've had very few, because of simply researching and knowing. Oncology Doctors and Nurses have treated me in a very professional manner, but being your own advocate can make this journey and treatments a lot more tolerable than one may think. Sometimes the professionals overlook some pretty basics as they do it so often. Don't let me misleed, it still is not a picnic. Well, I've rambled enough. Keep your chin up and be bold! God Bless, Jeff Jeffger Thu, 12 Oct 2006 00:00:00 GMT Hi I have liver cancer,had surgery back in jan. of 2003.All was good until 12-31-04,it came back and not operable. Since the I had 4 chemoembolations, 1 thereshphere(radiated beads). Then it went to lungs so i had regular chemo. Latest tumors in liver are the same size as many months ago but lung ones have increased a tiny amount. With these treatments I am doing very well. Working and active in between treatments. If your sister has any questions let Me know. I wish I would have found this site earlier in my treatments because doctors not always the best help for questions. Does anyone else have any treatments that are working for them. Deets Deets Thu, 12 Oct 2006 00:00:00 GMT Hi, I'm new to this chatroom and my father has been diagnosed with Staged IV Metastatic HCC. Just doing my regular research for him. The cancer cell has spread to the Lungs and spine. We have been on a journey, since April his diagnoses of this disease. We have been to many hospitals and University to find treatments and an alternative prognosis but the prognosis are the same. However with this journey we have found several treatment options with this disease (Therasphere, Xeloda and Sorafenib). My father is currently on Phase I clinal trial with Sorafenib. I'm don't know how advanced is your disease, but I think it is worth a shot at trying clinical trials. Also, since my father has been diagnosed with this disease our family are much closer. I believe the family support, love and care is much more valuable then any medicine. In addition, I have been thanking god everyday I get to see my father. So keep your chin up, do not give up and keep on fighting. Please let me know if you find any other drugs that might be of better for this disease. God bless you. Regards, Hung Filialson Fri, 13 Oct 2006 00:00:00 GMT Hi Jeff: Thanks for the response. I loved your visualization techniques. I felt more relaxed just reading them. I am going to get myself some of those tapes. I have been to see a new doctor at Princess Margaret Hospital in Toronto. I contacted them on a Wednesday to tell them that my surgeon said she could do no more for me and I had an appointment to see an oncologist in Toronto on the Friday. I had my appointment and my new doctor is recommending radiation and an experimental drug called AVASTIN. This new drug targets the blood vessels going to the tumours and is supposed to starve the little bastards to death - and it only costs $8,000/month. I am hoping that the cost will be covered by our insurance. Anyway, I am going for a CT scan on the 26th of this month and then for an appointment with the radiologist and oncologist on the 31st. My husband and I have planned a trip to Punta Cana the week of November 5-12 and when I get back I'll start the treatment. I am encouraged and ready to go to battle. Thanks for listening. Peach. Peach Thu, 19 Oct 2006 00:00:00 GMT Hi Deets: I can't tell you how happy I was to see your response! The fact that you are still in the battle is very encouraging to me. My cancer is called Hepatocellular Carcinoma. I've had a right side liver lobe resection and my gallbladder removed (Sept/05). The cancer has reappeared (June 06) on the left side of my liver and one in my chest. In Sept.06 my surgeon said there was "nothing more she could do for me" and sent me on my way. I contacted Princess Margaret Hospital in Toronto for a second opinion and within 1 day I had an appointment. I am going to be starting radiation treatments (I hope - if the tumours are localized) or I'll start on an experimental new drug called "AVASTIN". This drug has not been approved in Canada yet (it is in the US) so it is not covered by regular health insurance. I am hoping my extended coverage will pay for it (or at least some of it). The cost is $8,000 per month. At least I am being offered some hope and I am ready to take on this beast at another level. Take care and God Bless. Peach Thu, 19 Oct 2006 00:00:00 GMT Hi Peach So happy that you are fighting with such zest. Do you live in Canada? When you say in your chest, do you mean in your lung? I will ask My onclogist about this avistan, I am in the United States. Again I feel very well. Take Care Deets Deets Wed, 25 Oct 2006 00:00:00 GMT Hi Deets: Yes, I live in Canada. The tumour that I referred to in "my chest" is actually on my lung. The doctors think that it grew from the original liver tumour. I'd be happy to hear what your oncologist has to say about Avastin. I'm seeing my doctor on the 31st and they are to outline my course of treatment then. I can let you know if you wish. Take care. Peach. Peach Fri, 27 Oct 2006 00:00:00 GMT Hi Peach I will be seeing my oncologist on the 29th so I will let you know what he says about avastin. Hope all is well. I am doing very well Deets Deets Tue, 07 Nov 2006 00:00:00 GMT Hi Peach Question - you didn't have to get referred to Princess Margaret? And where who/how did you get referred to trying a new treatment that is not approved? My husband has stage 4 nscl cancer with mets to liver and kidney and lymph. I was looking into the states as a program with my insurance company will set us up - however he can't travel very far right now as he also has a clot in his juglar vein. So if I can get to one of the best Canadian hospitals and get in to see someone so quick and also get access to new treatments such as you are able then I will push forward that way. He is 42 and still looks good - he is on chemo right now but we are waiting for ct's after 3rd cycle to see if there is progress. If you can let me know how you went about all of this so quickly. Thanks Hockeyma Sun, 26 Nov 2006 00:00:00 GMT Hi Hockeyma: I was receiving treatment at McMaster University Hospital in Hamilton, Ontario and was referred to Princess Margaret Hospital in Toronto. I'm sure you could contact someone there though through their website. Avastin is approved in the United States and in Canada, however, it is not covered under our Ontario Health Insurance Plan. It must be bought from a private clinic in Toronto. I understand that there are many variables with respect to any treatment you are given - i.e., stage of cancer, age, overall health, etc. I am presently taking Avastin and Tarceva. I am having some difficulty with the Tarceva as it is causing a nasty rash (acne) on my face and I've had to stop the Tarceva treatment. I don't know if this info helps or not, I hope it does. I guess the biggest thing is not to give up - take care and God Bless. Peach. Peach Mon, 27 Nov 2006 00:00:00 GMT Hi Peach Went to my oncogist, He will send My records to a national cancer center , here in the states. He had study info when we walked in his ofice and one of these was Avastin. He is very excited and hopeful. Keep us updated on your treatments. Sorry to here about the rash. When do you go back for a checkup. I am very hopeful for you . can't wait to hear hoe you are doing. Take Care Deets Deets Thu, 30 Nov 2006 00:00:00 GMT Hi DeetsBad news.  My sister had a catskan and we were in to see her oncologist last Thursday.  The treatments did not work as well as they had hoped, the tumour in her lung is 5% larger.  Therefore she has stopped treatment and tomorrow she starts standard chemo.  She is terrified and we are all quite numb.  Her first doctor said that chemo wasn't effective against this type of cancer, now they are going to fill her with it.  Some very difficult weeks to come now.  Prayers for her please... Lilweezer40 Mon, 22 Jan 2007 00:00:00 GMT Hi Jeff...please take a look at my latest addition to Deets.Prayers please for my sister...this is not looking good. Lilweezer40 Mon, 22 Jan 2007 00:00:00 GMT  On 10/13/2006 Filialson wrote:Hi, I'm new to this chatroom and my father has been diagnosed with Staged IV Metastatic HCC. Just doing my regular research for him. The cancer cell has spread to the Lungs and spine. We have been on a journey, since April his diagnoses of this disease. We have been to many hospitals and University to find treatments and an alternative prognosis but the prognosis are the same. However with this journey we have found several treatment options with this disease (Therasphere, Xeloda and Sorafenib). My father is currently on Phase I clinal trial with Sorafenib. I'm don't know how advanced is your disease, but I think it is worth a shot at trying clinical trials. Also, since my father has been diagnosed with this disease our family are much closer. I believe the family support, love and care is much more valuable then any medicine. In addition, I have been thanking god everyday I get to see my father. So keep your chin up, do not give up and keep on fighting. Please let me know if you find any other drugs that might be of better for this disease. God bless you. Regards, HungDear HungI hope all is going well for your father.  My girl friend is 3 weeks on Nexavar (Sorafenib).  I have been looking for people in the Phase I, II, III trails.  All data is very general.  Please tell me what you know about the results and how's your dad doing?  Seven months on Nexavar?My girl friend, at 6 weeks between exrays, and 2 weeks on Nexavar things for her look positive, and in 3 weeks, after 6 weeks on Nexavar she gets another exray.  Her weekly fluid drainage was about 40% less then the prior 4 drainings.  She has Phase 4 HCC, but got on Nexavar 4 weeks after discovery.  Hope early medication helps. It appears 80% of those with HCC are responding favoriblity or holding their own.  Is anyone in his group really at CR "disappearance of all target lesions"?  Please tell me anything you can.  Thanks, Ed   Seeking Information Thu, 03 May 2007 00:00:00 GMT