creekgirlsc Posted December 9, 2008 Share Posted December 9, 2008 HI all.... After having one clear CT scan in August the next one in November showed 3 lymph nodes. After having a PET scan my onc. ordered a bronchoscopy & has now said he'll put me on Avastin (after having a chemo port put in). It will be one infusion every three weeks. I asked about side effects & he said my blood pressure might go up. That's all he mentioned. I just want to know if anyone has had side effects other than that? Am I apt to lose my hair (didn't last time). Also how long does an infusion take? I have already had rad/chemo/surgery over a year ago so this is not all new to me but it is different than the last time around. Thanks for any info. Creekgirl Quote Link to comment Share on other sites More sharing options...
SandraL Posted December 9, 2008 Share Posted December 9, 2008 Hi there creekgirl. I don't have any info on avastin but hopefully others will come along soon who do. I do want to say I am sorry to hear about the progression and your need to go on chemo again. Major downer! So prayers for successful treatment and few side effects. Take good care Sandra Quote Link to comment Share on other sites More sharing options...
AnneM Posted December 9, 2008 Share Posted December 9, 2008 Hi, I have been on Avastin every 3 weeks for a year and a half. The first time I had it, they did the infusion over an hour and a half, the next time for an hour, and every time after that, it's a 30 minute infusion (they just wanted to make sure there was no reaction at first). I think it's a real easy medication for most people to tolerate. I have no side effects from it so far, except for a very slight increase in blood pressure. I think the blood pressure rise is the most common problem and the reason people need to go off it. It also can cause some bleeding problems, so you have to be off it if you are going to have surgery. No hair loss with this one. Good luck. Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 9, 2008 Share Posted December 9, 2008 I was on Avastin for a full year — 4 months in combination with Taxol and Carboplatin, and 8 months Avastin alone. I didn't have any blood pressure increase, although that is rather common. It was a quick infusion, about 30 minutes, and after the first couple of times I asked them to skip the Benadryl premed (made me sleepy for a few hours, and I wasn't getting any hint of an allergic reaction). With no premed, the only way I remembered I'd had an infusion that day was when I noticed the bandaid over my port before showering. The only side effect I could attribute to Avastin was delayed healing of scrapes and abrasions and the tendency for little muscle strains (everyday wear and tear) to build up and not be resolved in a few days as they had previously. In particular, the range of motion of one shoulder became rather limited. This resolved within a couple of months after the Avastin was stopped (for minor progression, not side effects). Aloha, Ned Quote Link to comment Share on other sites More sharing options...
Patti B Posted December 10, 2008 Share Posted December 10, 2008 Hi Creekgirl- I was on Avastin alone for 7 months. There is no hair loss associated with it. The only problem I had was elevated blood pressure so please watch out if you start getting bad headaches. Mine became quite bad but was controlled with medication. Unfortunately, even after coming off the Avastin I still have the high BP. Avastin is really a cake-walk compared to many of the other chemos. The infusion is about 30 minutes long. Best of luck - Avastin really is a good drug. Hugs - Patti B. Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 11, 2008 Share Posted December 11, 2008 I was on Avastin with Carboplatin and Taxol for six infusions (also every three weeks) and then 11 more Avastin infusions. Early on, I had excruciating headaches that may have been due to very high blood pressure I was not aware of. My complaints of extreme fatigue may have been due to an extraordinary amount of bp meds (3 kinds, 2 times a day) eventually required to control it. Like Ned I was bothered by aches and pains that seem to build up and not resolve themselves like they had previously. I had one other problem that no one else has reported--very painful muscle spasms that just come on without any obvious cause, mostly in the biceps and sometimes also in my forearm. At times they have even woke me up in the night. Oh, and like others have reported on another site, a bit of a bloody nose and frequent runny nose especially when I eat--go figure! All in all, it is a very doable treatment. Judy in Key West Quote Link to comment Share on other sites More sharing options...
ChristinaMarie Posted December 11, 2008 Share Posted December 11, 2008 My husband is on Avastin and he currently experiences slightly high BP (but it is controlled with medication), bloody noses, and it takes him longer to heal. Good luck! Quote Link to comment Share on other sites More sharing options...
creekgirlsc Posted December 12, 2008 Author Share Posted December 12, 2008 I want to thank all of you for the information on Avastin. It helps me to know that it is generally well tolerated. I can deal with a higher blood pressure (mine is running about 120/80 right now), some aches, slow healing of scrapes, bloody nose, muscle aches etc. And knowing that it usually helps to slow progression is really great. Do you have to have that shot of Neulesta the day after the infusion? I think that bothered me more than the chemo treatments.....just knocked me over with the bone pain for a couple of days each time. I am also to have a 'port' put in. Hopefully that is not a really horrible procedure. Onc doctor wants that done as he thinks that Avastin is hard on veins. Do most of you have ports? Any disadvantages to them? Gee, I'm just full of ???????? aren't I? But I believe this is the best place to come to for informed answers. Thanks again......Creekgirl Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 12, 2008 Share Posted December 12, 2008 No to Neulasta! The port made all those infusions oh-so-easy. My port placement was done as an outpatient procedure with local anesthesia. The "default" setting was general anesthesia, but I told the surgeon and anesthesiologist that for something that simple I preferred local, and they agreed. There was a little soreness in the shoulder on that side for about a week. Because of the delayed healing and potential wound separation caused by Avastin, there is (or at least was in 2006) a 28-day waiting period between surgery and starting Avastin. I was told that this applied only to more significant surgeries, not the port placement, so I started my Taxol/Carbo/Avastin just a few days after getting the port. I must say that my port incision healed VERY slowly, there was some inflammation off and on for 2 or 3 months, and my onc put me on oral antibiotics twice during that period since my white blood cell count was somewhat affected by the chemo. You probably won't have a WBC problem on Avastin alone, and you might heal faster than I did (my skin wasn't in very good shape), so this is just something to be aware of. My port has been in for 27 months now, and while I haven't used it for over a year, I still go in every month to have it flushed so it's ready to go "if and when." It's a great device. Aloha, Ned Quote Link to comment Share on other sites More sharing options...
jaminkw Posted December 12, 2008 Share Posted December 12, 2008 creekgirl, as away, we're happy to offer any info/experience that will help. I also have a port, mine is called a Power Port. It was done as an outpatient but unlike Ned, I had general anesthesia. No big deal. It feels a little weird at first having something implanted in your body but I'd do it again in a heartbeat. I think it's the only way to go. Although I am off chemo now, I'm keeping my port. I'm sort of superstitious about it since I know people who had it taken out and then needed it again. I'm told I have to have it flushed every four to six weeks. Judy in Key West Quote Link to comment Share on other sites More sharing options...
Yorktown Linda Posted December 12, 2008 Share Posted December 12, 2008 I am on avastin, alimta and taxotere. And yes I get the neulasta shot the day after. I get what I call the "kicked-in-the-back" feeling the day after the shot but it only lasts for a day and then I'm okay again. Linda Quote Link to comment Share on other sites More sharing options...
ChristinaMarie Posted December 12, 2008 Share Posted December 12, 2008 If you are on Avastin along with other chemos you may need to get the nustala shot. My husband had to have it because his counts were so low he skipped chemo for 2 weeks. However Avastin alone does not mess with your WBC so there is no need for the shots. Quote Link to comment Share on other sites More sharing options...
jean44 Posted December 12, 2008 Share Posted December 12, 2008 Hi Creekgirl, My husband had his first infusion of Avastin on Wed. and so far, so good. He does not have a port and his Oncologist hasn't recommended it yet. He had the Avistan in combination with Carboplatin, Taxotere, and Zometa. He didn't have to have the Neulesta shot yet either. He is stage IV and so far has had wonderful results after three treatments of chemo and no radiation. We feel fortunate. Good luck, Jean Quote Link to comment Share on other sites More sharing options...
recce101 Posted December 12, 2008 Share Posted December 12, 2008 From Judy: ...mine is called a Power Port... I believe that's a new type that will withstand the higher flow when they inject dye for a CT scan. Mine is not that type, so I have to get a regular IV in the arm or hand when I go for a scan. Ned Quote Link to comment Share on other sites More sharing options...
Wendy Posted December 13, 2008 Share Posted December 13, 2008 Sorry I am a little late jumping in here, but I have had Avastin with Tarceva of 2 yrs for Tarceva and 2 yrs with Avastin. The only other side effecst that I didn't see mentioned is the worsening of meuropathy in my hands/feet and an increase in migraine headaches. My extremeities are very sensitive to hot and cold temperatures. I have to be super careful about exposing then to temp changes. The blood doesn't circulate as well either. I hope you have smooth sailing ahead of you and great results too. Wendy Quote Link to comment Share on other sites More sharing options...
creekgirlsc Posted December 17, 2008 Author Share Posted December 17, 2008 Thanks to all for the good info. Sorry I didn't reply sooner but I am a bit "bummed out" right now. Starting a new topic regarding it. Thanks again. Creekgirl Quote Link to comment Share on other sites More sharing options...
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