Avastin

OCMenno

Hi folks,
It has been a while since my last visit to this site. My wife was diagnosed with Anaplastic Astrocytoma Grade 3 in 2006 - surgery, radiation and temodar. Surgery again in July 2009 followed by Temodar again. Since then she has only been getting worse. She now has a new tumor that is inoperable (too deep) and has spread over a large area (crossed over from right side of brain to left). They are labeling this tumor GBM (due to the rapid growth I am guessing). They stopped the Temodar as it is no longer working and started Lomustine (chemo) which on its own has little chance of working at this point. They want to treat her with Avastin along with the Lomustine. Lomustine is taken every 6 weeks and the Avastin injection would be every two weeks. Before we can start the Avastin we need confirmation that my insurance will cover the $5,000 per injection. Anyway, my concern is how well she will be able to handle the Avastin. Looks like some potentially serious side effects. During the past month my wife's condition has been deteriorating fast. She can no longer walk on her own. Her left arm and leg are almost completely papralyzed and her right side is getting weaker daily. She now needs assistance with almost everything (transfer from bed to wheelchair, getting on the toilet, bathing, even rolling over in bed, etc.). She is always extremely tired, some short-term memory loss, losing voice after speaking for a few minutes, some headaches, dizzy spells, and pain in her left leg. She feels she will not be here on earth much longer. Oncologist has not given us a timeline but has basically implied the same. She is really struggling with the fact that she can't take care of her 3 young children anymore. She feels useless. My question is, has anyone had postive results with Avastin? With the shape she is already in, how will her body be able to handle Avastin? Is there a chance that she will get her strength back or would this most likely only give her a couple extra months of being bound to a wheelchair with a new set of side effects to manage?

PBJ Austin

Hello OC Menno
I have been thinking of you and your wife and I am so sorry this has taken a bad turn. I wish I could help but all I can do is to keep you and your family in my prayers. Sending hugs up north.

patriciam

AA3
Hi, I am so sorry to hear your wife is not doing well. My 17 year old also has AA3, a little over a year now. Hugs to you and your family.

OCMenno

patriciam said:

AA3
Hi, I am so sorry to hear your wife is not doing well. My 17 year old also has AA3, a little over a year now. Hugs to you and your family.

Thanks guys. You are all in
Thanks guys. You are all in our prayers as well and I'm glad we can support each other in this way. At times I just don't know which way to turn and it always helps to share with others going through the same thing. We just had a team of 4 people from Home Care at the house for a couple hours. 2 nurses, one doctor, and one support worker. Everytime someone new is introduced we basically have to go through all the details of the past 4 years all over again. But I guess it is good, because different people have different areas of expertise and pick up on different things. They really are great. Next they want to introduce a counsellor to us, someone who can visit and provide literature and talk to the children about everything that's going on and how to cope. Even though we have had a lot of time to think about it, it is still hard to believe we are now sitting in our living room talking about death. Please do not get me wrong, we have not given up hope. But there is nothing that hurts me more than to see my wife in tears. She is not afraid of dying, she is confident that a better place awaits her, a mansion in Heaven, but she is afraid of saying good-bye to her family.

Caregiver1963

AA3 Journey
Hello OC,

Your wife's current status sounds very much like my husband's. He was diagnosed in the Spring of 2009 with AA3 inoperable of the thalamus. He had chemotherapy and radiation and did well until the beginning of the year when he developed more symptoms. His MRI showed rapid growth of the tumor and although another biospy confirmed still a AA3, it is suspected that the tumor has progressed to GBM.He tried avastin for a few months with continued declining of his functional ability. He is in a wheelchair now and has difficulty writing ,reading and speaking.So in his case his oncologist felt that the side effects of further treatment would outweigh the benefits of further treatment so he made a decision to stop further treatment and is now receiving hospice services.This is just one person's experience with avastin. It obviously is a treatment that helps many otherwise it would not be a recommended treatment.

OCMenno

Caregiver1963 said:

AA3 Journey
Hello OC,

Your wife's current status sounds very much like my husband's. He was diagnosed in the Spring of 2009 with AA3 inoperable of the thalamus. He had chemotherapy and radiation and did well until the beginning of the year when he developed more symptoms. His MRI showed rapid growth of the tumor and although another biospy confirmed still a AA3, it is suspected that the tumor has progressed to GBM.He tried avastin for a few months with continued declining of his functional ability. He is in a wheelchair now and has difficulty writing ,reading and speaking.So in his case his oncologist felt that the side effects of further treatment would outweigh the benefits of further treatment so he made a decision to stop further treatment and is now receiving hospice services.This is just one person's experience with avastin. It obviously is a treatment that helps many otherwise it would not be a recommended treatment.

Thank you Caregiver1963
Sorry about your husband. I know exactly what you are going through. Thanks a lot for the feedback. While it is unfortunate that the Avastin did not work out for your husband I really do appreciate the info. My thoughts are also that it will be too much for my wife due to the condition she is already in. Like you, I also don't want it to discourage others from trying it as I have heard a lot of positives regarding this treatment. We have all kinds of palliative care help through Home Care (nurses, physio/occupational therapists, social worker, counsellor, doctor, etc) that come to the house. Someone is over on a daily basis. The doctor is doing some research and communicating with the Oncologist at the Cancer Centre to get a better opinion on whether or not she should go through with the Avastin. The oncologist has not given us a survival timeline and we are afraid to ask. He has made it fairly obvious though, that if Avastin doesn't work, it will not be too much longer. It is one of those things where you kind of need to know but don't want to know. I am still working (reduced hours), but between family, friends, and home care, someone is with her at all times. I just wish I knew at what point I stop going to work completely to be with my wife. I truly wish you and your husband all the best and please, if you are up to it, keep us up to date on how is doing. I will try to do the same and keep you in our prayers.

Caregiver1963

OCMenno said:

Thank you Caregiver1963
Sorry about your husband. I know exactly what you are going through. Thanks a lot for the feedback. While it is unfortunate that the Avastin did not work out for your husband I really do appreciate the info. My thoughts are also that it will be too much for my wife due to the condition she is already in. Like you, I also don't want it to discourage others from trying it as I have heard a lot of positives regarding this treatment. We have all kinds of palliative care help through Home Care (nurses, physio/occupational therapists, social worker, counsellor, doctor, etc) that come to the house. Someone is over on a daily basis. The doctor is doing some research and communicating with the Oncologist at the Cancer Centre to get a better opinion on whether or not she should go through with the Avastin. The oncologist has not given us a survival timeline and we are afraid to ask. He has made it fairly obvious though, that if Avastin doesn't work, it will not be too much longer. It is one of those things where you kind of need to know but don't want to know. I am still working (reduced hours), but between family, friends, and home care, someone is with her at all times. I just wish I knew at what point I stop going to work completely to be with my wife. I truly wish you and your husband all the best and please, if you are up to it, keep us up to date on how is doing. I will try to do the same and keep you in our prayers.

Shared Decision Making
Hi Oc,
I will keep you and your wife in my prayers as well. My husband requires more care than I can provide him at home and it is basically only me that he can count on. The hospice team told me that he would need 2 people to help him 24 hrs a day if he was to come home. So he was admitted into a nursing home close by to where we live last week.I was reluctant to have him go to the nursing home but I now see how he is getting good care there. It is so painful to see someone you love deteriorate in front of your eyes but our presence is just what the person needs. I have thought the same thing about wishing I knew when to stop working. Up until this week I was still working full time but I have reduced my hours slightly so I can spend quality time with him in the afternoon at the nursing home and then get home at a reasonable hour at night. Something that was helpful to us at various points of this journey that is offered at our medical center is Shared Decision Making. I am not sure how available this service at other medical facilities but it was invaluable to us. It is a service that helps the patient sort out treatment options and make a decision about treatment.
Please take care of yourself as you take care of your wife
Mary

OCMenno

Caregiver1963 said:

Shared Decision Making
Hi Oc,
I will keep you and your wife in my prayers as well. My husband requires more care than I can provide him at home and it is basically only me that he can count on. The hospice team told me that he would need 2 people to help him 24 hrs a day if he was to come home. So he was admitted into a nursing home close by to where we live last week.I was reluctant to have him go to the nursing home but I now see how he is getting good care there. It is so painful to see someone you love deteriorate in front of your eyes but our presence is just what the person needs. I have thought the same thing about wishing I knew when to stop working. Up until this week I was still working full time but I have reduced my hours slightly so I can spend quality time with him in the afternoon at the nursing home and then get home at a reasonable hour at night. Something that was helpful to us at various points of this journey that is offered at our medical center is Shared Decision Making. I am not sure how available this service at other medical facilities but it was invaluable to us. It is a service that helps the patient sort out treatment options and make a decision about treatment.
Please take care of yourself as you take care of your wife
Mary

Thanks Caregiver
My wife cried last night as I read these posts to her. But she was glad I did. She knows we are not alone in this. It is also a blessing to see so many people leaning on their faith. It is during these difficult times that we are closer to God then ever.

OCMenno

OCMenno said:

Thanks Caregiver
My wife cried last night as I read these posts to her. But she was glad I did. She knows we are not alone in this. It is also a blessing to see so many people leaning on their faith. It is during these difficult times that we are closer to God then ever.

Approved!
Well, we just got the okay that my benefits provider will cover the cost of the Avastin infusions. Will probably start the treatments shortly. Praying that this will work, and bring Tina back on her feet. We have read so many postitive results. At the same time we are trying not to raise our hopes too much, and realize that it may not work. It is a little bit of a balancing act, need to think positive about the treatment, but not be too discouraged if it doesn't work.

MrsPlate

OCMenno said:

Approved!
Well, we just got the okay that my benefits provider will cover the cost of the Avastin infusions. Will probably start the treatments shortly. Praying that this will work, and bring Tina back on her feet. We have read so many postitive results. At the same time we are trying not to raise our hopes too much, and realize that it may not work. It is a little bit of a balancing act, need to think positive about the treatment, but not be too discouraged if it doesn't work.

Avastin so far for us...
We did our first treatment of Avastin with CPT-11 on Monday. It was a LONG hard day- the first avastin treatment takes 1 1/2 hours to administer- just for that one drug, plus the CPT-11 took an hour, plus the pre-drugs and the meeting with the oncologist we did first- well, we were there from 9-5... made for a very long day. We also recieved news that the cancer has spread up and down the spine (his GBM is in the spine only so far). They origionally planned to do the treatments every 3 weeks, now we're upping it to every other week...

SO- as far as the effects of the treatment- He was having terrible headaches ALL THE TIME and hasn't had one since the treatment- not a single one. It's fantastic. We did the immodium the way they told us to, so he didn't get the diareah, which is great since he's got rather limited mobility and it takes him a long time to get to the bathroom, he's also had only a tiny bit of nausia and hasn't vomitted at all. He's got a little pain in his kidney area, but I think we didn't get him to drink enough. One "big" thing is he's tired- SO tired. He's pretty much slept since Monday- though he has gotten up to go to the bathroom and came to the kitchen to eat a couple of times. He had a seizure Monday night, the seccond one (that I know of- he could have had some while he slept, he can't sleep flat, only in his recliner) so far. Our doc has since prescribed an anti seizure med that we'll start today, so we'll see.

It's still very early, and I'm hesitant to make any predictions or even say he's done well, but so far so good. We're only on day 4, and I'm still nervous. He has had some involuntary spasms in his arms and legs, he's also very weak and has come close to passing out on several occasions since the seizure Monday night. So it's not all cake, but we haven't had any bleeds yet, which has been a concern since he's on coumadin.

I find that it's "best" to take things one day at a time, but it's SO difficult to do that... short term is one thing, but long term it's SO hard, SO frusterating and SO exhausting. We have a week to see how much strength he can get back before he gets his next hit.

Edited to Add: yup, spoke too soon... the diareah kicked in this morning- ugh. great way to wake up. Back on the immodium.

chrismiller1966@aol.com

avastin
Hello, my 38 year old sister has brain cancer ( due to vhl, a mutated gene that runs in our family) as does my dad and my brother age 36. Avastin did help my sister, however the dr's told her that research shows after 6 months it stops working. It did help, but around month 8 scans showed her tumor is now bigger, she has also lost her sight since using avastin. Just do your research and never give up hope!

always believe

chrismiller1966@aol.com said:

avastin
Hello, my 38 year old sister has brain cancer ( due to vhl, a mutated gene that runs in our family) as does my dad and my brother age 36. Avastin did help my sister, however the dr's told her that research shows after 6 months it stops working. It did help, but around month 8 scans showed her tumor is now bigger, she has also lost her sight since using avastin. Just do your research and never give up hope!

avastin
My mom has been on avastin/cpt 11 for 19 months and has done amazingly well! her only issue has been some tiredness and elevated blood pressure which is controlled with meds. otherwise, she has had a normal active life! 95% of her gbm tumor was removed with surgery 2 years ago and the other 5% gone after radiation treatment!