jaminkw Posted February 21, 2008 Share Posted February 21, 2008 I just got my last chemo cocktail on Tuesday and tackled the queston of the Avastin Maintenane (finally) with my oncologist. I've only managed to take all this in a little at a time. When I asked how long I would be on it, she looked me right in the eye and said until the disease comes back or the person gets tired of it. I asked if there would be a lengthening of time in between infusions scheduled for every three weeks and she said no--the trials or whatever of Avastin maintenance is to continue on 21-day cycles. I'm already doing that "there's no way I can travel to Orlando every three weeks for chemo for the rest of my life. I'm on a prescription replacement plan and it's only good at MDACC. If I went closer to home, they would have to reapply, and I really don't want to leave MDACC anyway. I would appreciate feedback from anyone who has been on Avastin maintenance and for how long, and if stopped, for what reasons. Quote Link to comment Share on other sites More sharing options...
Patti B Posted February 21, 2008 Share Posted February 21, 2008 Judy - I was on Avastin only for 7 months until I finally showed some progression on it. My doc told me when he took me off of it that only 1 in 5 can stay on Avastin as long as I did, altho he had a patient who has been on it for over two years and doing fine. Avastin does not have side effects that make you sick like nauseau (its actually a cake walk compared to other chemos) but it can cause high BP (which it did for me) and you have to be careful about bleeding problems. No hair loss, and no need for Neulasta shots. It is, however, given once every three weeks like other chemos are. Good luck and keep us posted - if you have any other questions about Avastin, please let me know. Wishing you the best - Patti B. Quote Link to comment Share on other sites More sharing options...
sharonjo Posted February 21, 2008 Share Posted February 21, 2008 Hi, I was on Avastin for 7 months, in remission until something grew back. It was sweet because I had virtually no side effects from the Avastin and it was just a 30 min. infusion. I guess you will have to weigh the travel issues though. Sorry I can't help you there. Good Luck. God Bless, Sharon Quote Link to comment Share on other sites More sharing options...
Wendy Posted February 22, 2008 Share Posted February 22, 2008 Hi there! I was on Avastin for a year, every 3 weeks along with Tarceva. The two mets I had disappeared within 6 weeks on the drugs and kept me stable for 2 years. I just recently found another met in my spine, and have gone back on Avastin every 3 weeks again and increased my tarceva doseage. I am having a scan after the 3 doses to see if it has gotten back under control. I believe Avastin is so new that the actual length of time people are on it varies. I did start having some side effects on the drug after about 8 months though. I started having much more intense migraine headaches, and I started to feel a bit "slow" mentally. I also got some weird numbness in my hands and feet that made no sense medically and sores in my nose. Whether some of this issues were happening because I was getting older or attributed the drugs - it was pretty tolerable and reduced when the drug strength was lowered. If you have any questions or want more info, just pm me. I would recommend Avastin to anyone. My best to you, Wendy Quote Link to comment Share on other sites More sharing options...
recce101 Posted February 22, 2008 Share Posted February 22, 2008 Hi, Judy: I was on Avastin for 12 months -- 6 infusions at 3-week intervals (4 months) in combination with Taxol/Carboplatin, and 12 infusions also at 3-week intervals (8 months) Avastin alone. The Avastin alone continued to shrink the tumor and reduce the loculated pleural effusion for a few months, then although the effusion continued to resolve, the tumor began to grow very slowly. At the end of month 12, when I switched to Tarceva, the tumor was still smaller than it was at the end of month 4, when the Taxol/Carbo was completed. During one of my appointments I asked my onc what's the longest he'd had a patient on Avastin before progression -- he said about 12 months. I asked Dr. West what's the longest progression-free time on Avastin that he knew of, and he said probably in the vicinity of 18 months. No symptoms other than the slow healing that I've mentioned before. I called my 8 months on Avastin alone "Easy Street." Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted February 22, 2008 Author Share Posted February 22, 2008 Thanks for the feedback. If my brain is working on this pukey Friday following my Tue chemo cocktail, it seems the time on Avastin according to your posts could range from 7 to 18 months before the disease progresses. The bad news, I guess, is that the expectation is that it will ultimately progress. That confirms what I heard my oncologist say. I am happy to hear all the good words about reduced side effects but am still nervous about the horrible headaches and sore throats I've already had. The doc gave me nystatin for the sore throat and said my PCP has to get my blood pressure under control. The headaches seem to have multiple causes possible including flare-up of an old occipital neuralgia, high blood pressure, chronic long-term allergies and sinusitis, and possibly Avastin. I guess I'm at the "not cureable but manageable" phase but it's hard to be optomistic about continuing three-week infusions until they fail and yet another treatment regime gets under way! Fighting to stay "UP," Judy in Key West Quote Link to comment Share on other sites More sharing options...
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