ILUMOM

Hi, It's been a very long time since I've posted on this site. Back in 2004 when my mom was originally diagnosed, I couldn't get enough of the message boards and learned so much. It is now 4 1/2 years since my mom was diagnosed with inoperable NSCLC Stage IIIB. Yes, she still has the tumor is her lung. It has shrunk over the years through various chemos (drips and oral) and radiation. She has survived a lot longer than others with her same diagnosis and we are so incredibly lucky. She is doing well, just tired a lot, but no pain or other mets in any of her body (besides the original brain mets she got early on...caused by being placed on a "Platinum" chemo...but that's another story...) Her doctors really don't know what to do for her. She's already been on so many different chemo's they are running out of options. They say that if we do nothing, the tumor will continue to grow. They want her to start chemo again with Taxol/Avastin. This is my question. Is there anyone out there who is a 4+ year survivor who has been given this chemo combo? Not as a first line treatment, but now, after many years of already ingesting so much poison into your body. This combo is powerful stuff and I'm thinking that it shouldn't be given to someone this late in the game. Her body's defenses are weakened from years and years of treatment and I'm afraid her body won't be able to rebound once again. Any advise and/or opinions are welcome. And, if I got any of my facts wrong, please don't hesitate to correct me.

My mom had a CT scan of her lung yesterday and today when she called her doc. she got very good news. Her tumor is now only 1.8 cm. It started out at being close to 7cm and has continually been shrinking since treatment started. What is so great is that she completed her last round of radiation a while ago (aside from her recent WBR) and she is still reaping the benefits. She has never felt better and looks great. She is very active and continues to exercise daily and eat organic foods in addition to taking herbs and special teas prescribed by her Ayurvedic physician. I knew the scan would show shrinkage and I'm so hopeful that in 3 months, we'll see even more shrinkage or maybe it could be completely gone! Liz

My mom is taking three mushroom herbs that were prescribed to her by her Ayurvedic doctor. One of them is Coriolus. She started taking them about 3 weeks ago. Also, last week, she just completed 14 rounds of WBR. Her dr. said that these mushrooms help stop the growth of tumors in the body. Her next MRI of the brain won't be for another 5 weeks b/c the benefits of WBR really carry on until that time and they don't want to give her a scan now. She had 6 mets. The way she feels and the way she looks is just awesome. She is walking a couple miles a day and riding her bicycle. She says she never felt so good. I don't attribute this to her taking the mushrooms, but her whole organic regime. Cancer loves sugar and she is not eating one spec of it. I'm sure the mushrooms are helping too, but we will have to wait a couple of months to see. It really takes at least 3 months when you start something new (eating better, exercising, etc.) to see any results. Her chemo and radiated were a cake walk. No side effects at all except for fatigue from the radiation. (and hair loss). She started seeing the Ayurvedic doctor immediately after her 1st chemo and started taking herbs and such (see profile below) and really never had a problem. Continued to go out and shop, do her art, etc. We are very lucky to have this wonderful doctor in our area (South Jersey). It was such a surprise to us that she did have the brain mets b/c she was feeling so great, but her onc. explained to us that those tumors could have been there the whole time and they were just dormant. I'm hoping that the WBR zapped at least 4 of the smaller mets and then she would be eligible for Cyberknife surgery. We'll see. After seeing how my mom breezed through the traditional/conventional therapy (chemo and radiation), I can't say enough wonderful things about using alternative therapies. Also, I was in my doctor's office a few weeks ago getting a check up and paging through an issue of O magazine. (Oprah's mag.). There was an article in there about how some of the doctors at Slone-Kettering are experimenting with these mushrooms (on themselves). Liz

I am so glad you posted this information. Perfect timing. My mom had chemo and radiation. The primary tumor in her lung shrunk significantly. We were so hopeful. But then, a couple months post end of treatment, she had a MRI and they found 6 mets to her brain. She immediately began WBR. I have been researching WBR and do not like anything I read. She has already had 4 treatments with 10 to go. This is great information. I am having my mom print it out and take it to her next onc. appt. to discuss. Thanks. Liz

I posted this question on the Clinical drug Trials forum and another member suggested I ask about it here. I am so happy to have found this site. I've learned so much and I love reading the inspirational stories, they give me lots of hope. My mom was dx with NSCLC stage IIIB, inoperable. She has completed 3 rounds of chemo and now her doctor wants her to join a clinical drug trial for a drug R115777 (Zarnestra). This is an oral medication (similar to Iressa) that is supposed to help her with side effects from radiation. It is identified as a farnesyl transferase inhibitor (FTI). Previously, this drug has been used to treat pancreatic cancer, Myeloma and leukemia with some success. By success, I mean that beside fatigue associated with traditional chemo, patients are tolerating this treatment better than traditional chemo. I'm still surfing the web to find out as much as I can. Has anyone heard of this drug? My mom is so wonderful and I love her so much. I'm hoping for a miracle.

Hi, my name is Liz and I have been reading threads on this site for a few months now. I am so happy to have found this site. I've learned so much and I love reading the inspirational stories, they give me lots of hope. My mom was dx with NSCLC stage IIIB, inoperable. She has completed 3 rounds of chemo and now her doctor wants her to join a clinical drug trial for a drug R115777 (Zarnestra). This is an oral medication (similar to Iressa) that is supposed to help her with side effects from radiation. It is identified as a farnesyl transferase inhibitor (FTI). Previously, this drug has been used to treat pancreatic cancer with some success. I'm still surfing the web to find out as much as I can. Has anyone heard of this drug? My mom is so wonderful and I love her so much. I'm hoping for a miracle.