Anyone on Avastin?

KKLoop

I know Avastin is a new drug. Is anyone out there on it? Mom is and I wanted to know the results, side effects, symptoms. Her head was very "Swimmy" today and she couldn't drive to treatment. She will be scanned in 4 weeks to find out the results of switching. Just hoped someone out there was a few steps ahead of us on this.

scouty

I was on Avastin for 8 months. It was approved by the FDA last March and I started on it right before then. I took it with 2 other chemo drugs (5FU and Oxiliplatin) along with Leucovorin. The drug is supposed to cut off the blood supply to the metatisized tumors. In my case, I never had surgery to remove anything since my liver was involved. We concentrated on working on my tumors in the liver and left lung. I do know that chemo effects each and every one of us differently so be careful about what you may read. Folks bodies just react differently to them and if you are getting multiple drugs, you never really know which one is doing what, as far as side effects.

That being said, Avastin concentrates on the blood flow to the spreading tumors and can elevate blood pressure. It did mine and the bp meds they gave me worked for a short time and then stopped (I took 3 different ones). After getting off of it, my BP normalized. I am not cancer free yet and chose to try some alternatives to chemo for a time last November but won't go into that unless you want to know more.

Personally I had good success with it to start, but then I went into a "stable mode", no changes for 5 months.

You may want to contact the oncologist about her swimmy head and ask them specifically. It could be so many things. Blood pressure can do that and then they can give her meds for that.

You are right to ask here. I'm sure you will hear from others who have been on Avastin. Remember, my case could very well be very different from your Moms. No 2 bodies are alike and that is one of the many reasons that cancer is so hard to figure out.

Keep asking questions and learning. Education is very important.

Lisa P.

KKLoop

scouty said:

I was on Avastin for 8 months. It was approved by the FDA last March and I started on it right before then. I took it with 2 other chemo drugs (5FU and Oxiliplatin) along with Leucovorin. The drug is supposed to cut off the blood supply to the metatisized tumors. In my case, I never had surgery to remove anything since my liver was involved. We concentrated on working on my tumors in the liver and left lung. I do know that chemo effects each and every one of us differently so be careful about what you may read. Folks bodies just react differently to them and if you are getting multiple drugs, you never really know which one is doing what, as far as side effects.

That being said, Avastin concentrates on the blood flow to the spreading tumors and can elevate blood pressure. It did mine and the bp meds they gave me worked for a short time and then stopped (I took 3 different ones). After getting off of it, my BP normalized. I am not cancer free yet and chose to try some alternatives to chemo for a time last November but won't go into that unless you want to know more.

Personally I had good success with it to start, but then I went into a "stable mode", no changes for 5 months.

You may want to contact the oncologist about her swimmy head and ask them specifically. It could be so many things. Blood pressure can do that and then they can give her meds for that.

You are right to ask here. I'm sure you will hear from others who have been on Avastin. Remember, my case could very well be very different from your Moms. No 2 bodies are alike and that is one of the many reasons that cancer is so hard to figure out.

Keep asking questions and learning. Education is very important.

Lisa P.

ARe you meaning blood pressure for bp? That would explain her swimmy head!!!!!!!!!!!!!!Why didn't they tell her THIS?????(I am talking to my self here.) What about eating? How much weight have you lost? Any suggestions on eating? She thinks that she is doing well if she eats a bowl of tomato soup......

scouty

KKLoop said:

ARe you meaning blood pressure for bp? That would explain her swimmy head!!!!!!!!!!!!!!Why didn't they tell her THIS?????(I am talking to my self here.) What about eating? How much weight have you lost? Any suggestions on eating? She thinks that she is doing well if she eats a bowl of tomato soup......

Yes BP is blood pressure. I said it COULD do that. Where I go for my chemo treatments, they have a help line for patients to call if they have questions. Ask your Mom if they have one for you to call so you can talk it out. Is she on any other meds including chemo? Again, it could be so many things.

As far as foods go, that is a toughy. I found my taste buds changed over time, as did what tasted good to me at the time. I lived on oatmeal one month and then the next it would be something else.

Eating is very hard while on chemo, but it is so very important. I had to force myself to eat things I knew I should. I lived by myself at the time and am very stubborn, so it became a personal challenge. I am fortunate that I have had a good job for 25 years and used some of my savings to pay for someone to clean my house nad mow my yard for the first time in my life. My priorites completely changed. Having a clean lovely home was not longer the priority, my body was and I tried to treat it the best I could with the energy I had.

I remember sniffing and eventually biting into a lemon to wake up my taste buds and relieve the nausea and then would have to make myself eat veggies, salads and other stuff I knew I needed. I did loads of research about it all and found taking vitamins and other supplements helped with the blood counts. I talked everything I did then and do today over with my oncologist before I proceeded.

If I had it to do over, the only thing I would do differently would be to get my family and friends to help me with the food prep things and kitchen cleanup. The fatigue is pretty intense and sleeping 12-14 hours a day was not at all normal for me. I just couldn't do near as much as I could a month earlier.

I think the most significant thing I learned was to get out my front door and get some fresh air as soon as I could after my chemo treatment helped immensly . I called it exercise, but sunshine and just walking around my yard helped my body get the stuff out of my system faster. I learned to drink oodles of water especially the day before chemo and the few days afterwards. I had a 46 hour drip of 5FU and learned that if I did not eat properly, especially at breakfast, and then drink lots of water, I would get nauseous. I would eat almost immediately after getting out of bed, since that was the best I usually felt. Showering became secondary to me (I bet I get some remarks about that)

I also learned that good fiber in my tummy really helped with the nausea, especially at breakfast. I always felt better right before chemo and would load up on food and water. There were times I chose to pig out on breakfast the day of chemo instead of showering (the oncology nurses probably hated me for that but they still hugged me).

I had never been much of a breakfast eater (fast, furious if at all and off to work, except weekends) but that changed as I learned more.

I lost 30 pounds in the 2 months before my cancer diagnosis and was just getting back to form (or so I thought) when the cancer was found. Ironically, I only lost 5 pounds while on chemo, but I WORKED VERY HARD AT IT.

If you are really interested, invest in the book, Beating Cancer With Nutrition by Patrick Quillin.

As far as the docs not telling you about the blood pressure, some folks don't experience that, so they try to be careful. They should have given your Mom something in writing about the possible side effects. If not, tell her to ask at her next treatment. People deal with cancer in so many ways, I think the docs just kind of go with the flow until they learn their patients better. My relationship with my oncologists is so very different now then it was a year ago when we first met. We are in this together and he and I understand what that means now. We did not have that relationship at first.

Feel free to contact me by the CSN email if you want to ask anymore questions. Just remember none of us on this board have all the answers, we are here to offer up support and help direct you in a positive direction.

Stay strong and try not to freak out too much. Yeah, I know that is very hard now. The first few months are definitely hard.

I am rambling way too much so will close.

Take care and again, contact me if you need to.

Lisa P.

KKLoop

scouty said:

Yes BP is blood pressure. I said it COULD do that. Where I go for my chemo treatments, they have a help line for patients to call if they have questions. Ask your Mom if they have one for you to call so you can talk it out. Is she on any other meds including chemo? Again, it could be so many things.

As far as foods go, that is a toughy. I found my taste buds changed over time, as did what tasted good to me at the time. I lived on oatmeal one month and then the next it would be something else.

Eating is very hard while on chemo, but it is so very important. I had to force myself to eat things I knew I should. I lived by myself at the time and am very stubborn, so it became a personal challenge. I am fortunate that I have had a good job for 25 years and used some of my savings to pay for someone to clean my house nad mow my yard for the first time in my life. My priorites completely changed. Having a clean lovely home was not longer the priority, my body was and I tried to treat it the best I could with the energy I had.

I remember sniffing and eventually biting into a lemon to wake up my taste buds and relieve the nausea and then would have to make myself eat veggies, salads and other stuff I knew I needed. I did loads of research about it all and found taking vitamins and other supplements helped with the blood counts. I talked everything I did then and do today over with my oncologist before I proceeded.

If I had it to do over, the only thing I would do differently would be to get my family and friends to help me with the food prep things and kitchen cleanup. The fatigue is pretty intense and sleeping 12-14 hours a day was not at all normal for me. I just couldn't do near as much as I could a month earlier.

I think the most significant thing I learned was to get out my front door and get some fresh air as soon as I could after my chemo treatment helped immensly . I called it exercise, but sunshine and just walking around my yard helped my body get the stuff out of my system faster. I learned to drink oodles of water especially the day before chemo and the few days afterwards. I had a 46 hour drip of 5FU and learned that if I did not eat properly, especially at breakfast, and then drink lots of water, I would get nauseous. I would eat almost immediately after getting out of bed, since that was the best I usually felt. Showering became secondary to me (I bet I get some remarks about that)

I also learned that good fiber in my tummy really helped with the nausea, especially at breakfast. I always felt better right before chemo and would load up on food and water. There were times I chose to pig out on breakfast the day of chemo instead of showering (the oncology nurses probably hated me for that but they still hugged me).

I had never been much of a breakfast eater (fast, furious if at all and off to work, except weekends) but that changed as I learned more.

I lost 30 pounds in the 2 months before my cancer diagnosis and was just getting back to form (or so I thought) when the cancer was found. Ironically, I only lost 5 pounds while on chemo, but I WORKED VERY HARD AT IT.

If you are really interested, invest in the book, Beating Cancer With Nutrition by Patrick Quillin.

As far as the docs not telling you about the blood pressure, some folks don't experience that, so they try to be careful. They should have given your Mom something in writing about the possible side effects. If not, tell her to ask at her next treatment. People deal with cancer in so many ways, I think the docs just kind of go with the flow until they learn their patients better. My relationship with my oncologists is so very different now then it was a year ago when we first met. We are in this together and he and I understand what that means now. We did not have that relationship at first.

Feel free to contact me by the CSN email if you want to ask anymore questions. Just remember none of us on this board have all the answers, we are here to offer up support and help direct you in a positive direction.

Stay strong and try not to freak out too much. Yeah, I know that is very hard now. The first few months are definitely hard.

I am rambling way too much so will close.

Take care and again, contact me if you need to.

Lisa P.

Thank you very much. I am picking your brain apart. Mom has the book you mentioned and it was too much for her at the time. I have printed her this email response and again, I am getting her online this weekend, so you will "meet" her soon.

slammer

HI There, my name is Amy and I am 44 yrs old, I found out I had colon cancer in Oct 03, actually by a bad appendix found tumor, etc, I did 6 months chemo then in 04 for 6 months only 5-FU and leucovorian, actually did well on chemo I mean had mouth sores, fatigue, nose bleeds weeping eyes, no appitite, etc, then I was done with that , thought cured, but then had overies enlarge, I mean really large, they thought it was ovarian ca but had total hystrectomy and since none there I am in re-occurance of colon cancer, stage 4, but the good news is I changed oncologists, went to a Cancer center in my town, he was more positive that the other, and put me on the Folfox6 ( which includes Avastin.) IT is a good chemo, but yes of course I am on a few others too, like a cocktial of 4, pre-chemo, pre meds, then,magnsium/calcium, then Oxalliplatin, 5 FU, then other meds then Avastin, all on a 8 hr drip, then I go home & have a home pump(fanny pack, which is a god send) no hospital, and do a 46 hour of 5FU again, but all is well side effects not so bad, but as someone else said, everyone is different,But as I know it Avastin is a leading drug in the fight against colon cancer. And as KK
loop said it is a newer drug just approved & my oncologist was eager to give it to me. I even read a small article in Readers Digest right after being put on it how good it was at combatting colon cancer, like they said it blocks the blood flow to the tumors, etc. I am pleased with all my chemo and really haven't had serious side effects, yes I have them but not too bad: Nausea, loss of appitite ( not too bad),
then sensitive to cold is from one drug where you can't drink cold stuff or even touch them cuz finger tips are sensitive, but mine passes after treatment, just gotta be careful, also dry skin & 5 -FU will give you the weeping eyes also, where you tear up at corners of eyes, I do that like one week. It's called weeping cuz it comes from the outer eye area, a pain in the butt only gotta carry kleenx alot but all in all theses side effects to me are toralable, not fun but hell I can handle them .IT SUCKS all of it.
Hope I didn't say too much but that is my experience with this chemo...
GOd Bless & Live Strong
Love Amy

KKLoop

slammer said:

HI There, my name is Amy and I am 44 yrs old, I found out I had colon cancer in Oct 03, actually by a bad appendix found tumor, etc, I did 6 months chemo then in 04 for 6 months only 5-FU and leucovorian, actually did well on chemo I mean had mouth sores, fatigue, nose bleeds weeping eyes, no appitite, etc, then I was done with that , thought cured, but then had overies enlarge, I mean really large, they thought it was ovarian ca but had total hystrectomy and since none there I am in re-occurance of colon cancer, stage 4, but the good news is I changed oncologists, went to a Cancer center in my town, he was more positive that the other, and put me on the Folfox6 ( which includes Avastin.) IT is a good chemo, but yes of course I am on a few others too, like a cocktial of 4, pre-chemo, pre meds, then,magnsium/calcium, then Oxalliplatin, 5 FU, then other meds then Avastin, all on a 8 hr drip, then I go home & have a home pump(fanny pack, which is a god send) no hospital, and do a 46 hour of 5FU again, but all is well side effects not so bad, but as someone else said, everyone is different,But as I know it Avastin is a leading drug in the fight against colon cancer. And as KK
loop said it is a newer drug just approved & my oncologist was eager to give it to me. I even read a small article in Readers Digest right after being put on it how good it was at combatting colon cancer, like they said it blocks the blood flow to the tumors, etc. I am pleased with all my chemo and really haven't had serious side effects, yes I have them but not too bad: Nausea, loss of appitite ( not too bad),
then sensitive to cold is from one drug where you can't drink cold stuff or even touch them cuz finger tips are sensitive, but mine passes after treatment, just gotta be careful, also dry skin & 5 -FU will give you the weeping eyes also, where you tear up at corners of eyes, I do that like one week. It's called weeping cuz it comes from the outer eye area, a pain in the butt only gotta carry kleenx alot but all in all theses side effects to me are toralable, not fun but hell I can handle them .IT SUCKS all of it.
Hope I didn't say too much but that is my experience with this chemo...
GOd Bless & Live Strong
Love Amy

Hi, it is glad to hear from you too. It seems like you are on a lot more chemo than Mom? I wonder why? The 5FU cocktail allowed her tumors to spread more in her liver and then to liver lymph nodes and 2 spots on lungs. I plan on asking her about all the others she might be on that I am not aware of.....I know she has treatment every other week for 2 days and she spends 3 hours at the center. Afterwards she is home with the fanny-pack. Again, I am getting her online this weekend and I know she will want to respond with you. It is amazing what you can do when you are faced with something like this. I have gained so much strength from this group and I admire you all..............Chat later.

scouty

KKLoop said:

Hi, it is glad to hear from you too. It seems like you are on a lot more chemo than Mom? I wonder why? The 5FU cocktail allowed her tumors to spread more in her liver and then to liver lymph nodes and 2 spots on lungs. I plan on asking her about all the others she might be on that I am not aware of.....I know she has treatment every other week for 2 days and she spends 3 hours at the center. Afterwards she is home with the fanny-pack. Again, I am getting her online this weekend and I know she will want to respond with you. It is amazing what you can do when you are faced with something like this. I have gained so much strength from this group and I admire you all..............Chat later.

3 hours isn't long enough to get what Amy and I got (we did the same cocktail). My first dose of Avastin took 2 hrs, then the next it was 1 1/2 hrs, then an hour and finally they settled to 30 minutes. The fanny pack is 5FU. I have read lately that some places are no longer using Oxiliplatin which I had and Amy is getting. It is the one that causes cold aversion sensations. It also can cause hand and feet neuropathy over time. Some side effects take much longer to appear like a buildup effect but please remember chemo impacts everyone differently. I too was 49 and did pretty good at it for several months. Maybe it was because I turned 50 (heh heh). Get your Mom to have the nurses pull a printout of the actual drugs she is getting. It will include all the side effects and maybe even some tips of how to avoid them.

At first it is very intimidating but it does get easier as you learn and understand more.

Hang in there and you are being a wonderful daughter. Your mother is very lucky!!!!

Lisa P.

pjenks57

You have come to the right place for information and support. This place is wonderful. I don't respond much but couldn't resist this time. I read all the responses to your post and reading scouty was like reading my husband's story.

He was dx in Sept 03 with stage IV mets to liver and lung. At first did oxliplatin and xeloda. after 6 treatments things went very well. Then just on Xeloda. the cancer began to grow. Went with 5FU, CPT11, leukovarian(sp?)and the cancer grew a little more. Those side effects were awful cuz the stupid Dr. didn't give him anything for nausea. Ultimately after a story that you don't have time to read we changed dr and that was a blessing. He now is on Oxliplatin, leukovorian(you'd think I would know how to spell that!), Avastin and 5FU. He is given lots of meds for neusea as well as calcium and magnesium.

He is doing ok with side effects except the tingling in fingers and toes. He hates that but can certainly deal with that after all he's been thru. As a matter of fact he is on a weekend with a friend of his at a big stockcar race. He is doing great. He has 2 more tretments and then he does another CAT scan to see if tumors are still active. He lost some weight but not bad. He doesn't have an appetite just after treatments but gets it back in a few days and I can't keep enough food in the house.

He is 60 years old and is working very hard at beating this monster so that he can see our 9 year old daughter grown (I know, we are slow at things. Practice makes perfect but we didn't really name her that!)

Anyway I am sorry to ramble on and on but you need to know that you are not alone. There are many caregivers out there and we seem hungry for as much information as we can find. It seems like the only thing we can do. Don't feel helpless or hopeless. Hang in there and don't forget you have to do something for your self too.

Hope this helps. God bless you and your Mom.

KKLoop

scouty said:

3 hours isn't long enough to get what Amy and I got (we did the same cocktail). My first dose of Avastin took 2 hrs, then the next it was 1 1/2 hrs, then an hour and finally they settled to 30 minutes. The fanny pack is 5FU. I have read lately that some places are no longer using Oxiliplatin which I had and Amy is getting. It is the one that causes cold aversion sensations. It also can cause hand and feet neuropathy over time. Some side effects take much longer to appear like a buildup effect but please remember chemo impacts everyone differently. I too was 49 and did pretty good at it for several months. Maybe it was because I turned 50 (heh heh). Get your Mom to have the nurses pull a printout of the actual drugs she is getting. It will include all the side effects and maybe even some tips of how to avoid them.

At first it is very intimidating but it does get easier as you learn and understand more.

Hang in there and you are being a wonderful daughter. Your mother is very lucky!!!!

Lisa P.

Mom tells me the same thing...my response is that Mom taught me how to love others and to take care of them...I don't know any other way...thanks for the boost...Mom was on Oxiliplatin because she had the cold adversion..that is what she was taken off of and replaced Avastin and CPT11(?)in the place of. I will double check though..I am certain that she knows...This week is her rough week with chemo and she has lost so much weight and is not use to feeling SO helpless...she gets angry about that. She mentions that she can't stay focused a lot too...is that the chemo? Found out the "swimmy" head was associated, according to doc, with the Zantex they gave her for her anxiety moments. She has never been a pill taker....my bets are that she throws them away....did you guys have this problem? If so, what helped???

slammer

KKLoop said:

Mom tells me the same thing...my response is that Mom taught me how to love others and to take care of them...I don't know any other way...thanks for the boost...Mom was on Oxiliplatin because she had the cold adversion..that is what she was taken off of and replaced Avastin and CPT11(?)in the place of. I will double check though..I am certain that she knows...This week is her rough week with chemo and she has lost so much weight and is not use to feeling SO helpless...she gets angry about that. She mentions that she can't stay focused a lot too...is that the chemo? Found out the "swimmy" head was associated, according to doc, with the Zantex they gave her for her anxiety moments. She has never been a pill taker....my bets are that she throws them away....did you guys have this problem? If so, what helped???

Hi again Maybe Mom needs to go on Ativan? That is what my Dr.(this good one) gave me for anxiety, & nervous stomach too, (nausea) says on bottle for nausea, but it helps you relax & I take them during the day when I feel jittery, hyper, cuz chemo will cause anxiety. The bottle does say "Lorazepam 1 mg, generic for Ativan." Your Mom needs that because it helps alot to help sleep too, just calming effect & no sleep hangover or anything. Good rest for me so maybe she can ask for it from Drs, I love it! Always take it at night but even nurses at cancer center told me to take it during the day, especially when doing the chemo because you do get nervous from it all etc.Please check into it, seems a common drug for us doing chemo....
God Bless & take care
Love Amy

KKLoop

pjenks57 said:

You have come to the right place for information and support. This place is wonderful. I don't respond much but couldn't resist this time. I read all the responses to your post and reading scouty was like reading my husband's story.

He was dx in Sept 03 with stage IV mets to liver and lung. At first did oxliplatin and xeloda. after 6 treatments things went very well. Then just on Xeloda. the cancer began to grow. Went with 5FU, CPT11, leukovarian(sp?)and the cancer grew a little more. Those side effects were awful cuz the stupid Dr. didn't give him anything for nausea. Ultimately after a story that you don't have time to read we changed dr and that was a blessing. He now is on Oxliplatin, leukovorian(you'd think I would know how to spell that!), Avastin and 5FU. He is given lots of meds for neusea as well as calcium and magnesium.

He is doing ok with side effects except the tingling in fingers and toes. He hates that but can certainly deal with that after all he's been thru. As a matter of fact he is on a weekend with a friend of his at a big stockcar race. He is doing great. He has 2 more tretments and then he does another CAT scan to see if tumors are still active. He lost some weight but not bad. He doesn't have an appetite just after treatments but gets it back in a few days and I can't keep enough food in the house.

He is 60 years old and is working very hard at beating this monster so that he can see our 9 year old daughter grown (I know, we are slow at things. Practice makes perfect but we didn't really name her that!)

Anyway I am sorry to ramble on and on but you need to know that you are not alone. There are many caregivers out there and we seem hungry for as much information as we can find. It seems like the only thing we can do. Don't feel helpless or hopeless. Hang in there and don't forget you have to do something for your self too.

Hope this helps. God bless you and your Mom.

Great to hear from you! I love to know that there are a lot of more options out there for her. I know the doc's know, but it is comforting to know other options just in case. Thank you for sharing yours and your husband stories....I really need it today. This is chemo week and she is down today....she has ALWAYS been Mrs. Strong and independent and it kills me to see her the way she is today...It breaks my heart...I just keep telling myself...this is the pattern, she will be back up in a few days!!!