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starting Avastin tomorrow

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Tomorrow is a day that I have long feared and dreaded....David will get his first dose of Avastin. I know that other drs and other people don't have the same feelings about Avastin that I do...but I believe that our oncologist uses it when the time is desperate. Well, we are pretty desperate. We've been home from the hospital since Friday night, and it's been pretty up and down. David sometimes talks and makes perfect sense, and other times, he can't even answer a simple question. He's super shaky and weak, but the thing that gets to me the worst is his odd behaviors. He can't complete a task. He turns the lights off and on, he goes into the bathroom to use it, and he doesn't come out until I go in and get him. I have to take him by the hand and lead him back to bed. He stares at himself in the mirror with a totally blank look. When I ask him what he is doing, he said, "I'm sorry that it's so hard to for me to answer you." When I ask him why he taps or rubs his face for so long, he says he doesn't know why. He's wetting the bed off and on. He has an obvious left side deficit, like he had a stroke on that side. When I kiss his cheek on the left side, his face feels...different. Flaccid. He holds his left hand funny, all soft with the fingers curled slightly. When he walks, he lists to the side and is very off-balance. He's lost his left side peripheral vision.

The thing that really broke my heart, that really messed me up, that I can't quit crying over, is when I went in his bedroom to check on him when I thought he was napping, and he had a tear trickling down his cheek. I can't even type it without crying and feeling like I am dying inside. I don't know if I will ever get over the way that made me feel.

We expect the Avastin to help relieve some of David's symptoms. It should relieve some of the swelling. Our dr said that Avastin is basically a fancy steroid. But he also told us it helps prevent angiogenesis...the formation of blood vessels that feed the tumors. I don't know if it will work well enough for David to slow the growth of the tumors. The tumors really spread a lot since that last BBBD treatment, during the time that David was recovering from the cellulitis/blood infection/blood clots. I think it will help for a time....but I don't know for how long. I just hope it helps. I'll take whatever time we can get.

I sleep with David every night....there's no way I would leave him alone for an entire night. He gets up by himself to try to use the bathroom and it's totally unsafe. So I'm lying in bed right now, typing this, and David just now got up and got his PS3 out and he's' hooking it up to our TV so he and I can watch "The Office" on it. I have no idea how to do that kind of thing....but watching David, it looks like he might be able to hook it up. I can't believe he can do this. But this is how our life is. One minute I think he's totally out of touch, the next minute, he seems okay. I am blown away...he's digging through a nest of cords and controllers, looking for the one he needs...

Does anyone else have these kinds of experiences? I don't know if this is the way things deteriorate or if David is not as bad as I think he is.....

He just downloaded an app on his iPhone that lets him use the phone like a flashlight. I am amazed......

He had me take a break from this post and plug in some wires for him. He told me where to put each wire. He's got it all hooked up and working. I was shocked and amazed and happy. He looked at me with no expression and I said, "Aren't you happy that you remembered how to hook this all up?" And he said, "Not really. It wasn't that big of a task." He made me laugh.

Forgive me for being negative...but in five minutes from now, he might forget how to turn off the light. That's how things have been going.....but for now, I am going to watch "The Office" with David and maybe even laugh a little. "The Office" is kind of our thing....I'd never seen it but David loves it and he got me started on it, and now I'm hooked. Just because.

I'll keep you all posted on how the Avastin works for David.

Love and blessings,
Cindy

chicken2799's picture
chicken2799
Posts: 105
Joined: Nov 2009

My heart breaks for you! I am so glad that you and David have your time together, and are so close. I am so sorry that things are like a roller coaster for you. My hope is that the Avastin helps tremendously with his behavior. I wish I knew what to say, but just know you are constantly in my prayers!

Michelle
Mobile, Al

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Michelle.

I know that it's really hard to think of what to say, especially to someone in my situation, with all the bad things that David and I have been dealing with. I post so much and I always seem to be in some sort of crisis with David. I really appreciate that you comment and let me know that you are thinking of us and praying for us. Most of the time, there really isn't much else to say......

I am very glad that you are doing so well and are on top of those seizures that you had. It brings me a lot of comfort to think of you enjoying your life with your husband and your little princess! :) You guys are a beautiful little family and I pray that God showers you and your family with all of HIs sweetest blessings! :)

Love and blessings always,
Cindy

falcon69
Posts: 25
Joined: Feb 2012

I will be praying for David (and you, Cindy) as he receives his first dose of Avastin today.
God will be watching over him and has him in His hands.

God's Blessings on you all,
Julie
St. Louis,MO

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Julie. I really appreciate your prayers and your concern for David. I am so touched, so very, very touched, by how many people on this site have posted and have told me that they are praying and that they care about David and what we are going through. It's one of the shining beams of light in my life right now, having people that I've never met in person, haven't seen, have never even heard their voice, taking the time to reach out in the middle of their own heart wrenching circumstances to provide comfort and solace to me. The kindness of so many people, many of them strangers, during David's battle has made me believe in the basic goodness of people. There really are a lot of wonderful people in this world....

Thank you again, and love and blessings to you!
Cindy in Salem, OR

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

Wishing you a good day, calm and with something warm and special in all this craziness that has been put on your plate. Just like many people have said before you are an amazing women and mother...

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, 4theloveofmysis. I am having a better day today, though it wouldn't take much to top yesterday. I just got back from lunch at Dvid's favorite restaurant. David and my husband and I went, along with my daughter and her fiancé and my sis and bro in law. It totally wiped David out, but I think it was GREAT that he felt like even going, and I think it was really, really good for him to get up, get dressed, and get out. He's napping right now, and I'm curled up in front of our fireplace. We are having freaky cold weather here....it feels so quiet and peaceful and warm here in my family room....a few minutes of quiet in the storm of my life....

David seems a little improved, and I feel like any improvement, even a slight one, is still encouraging. Our NO says we will have a better idea by Wednesday if the Avastin is going to help or not. Our NO's nurse talked to me for quite a while yesterday, and she was not encouraging. It really set me back and made me spend the rest of my day pretty much crying my head off.

I think about you and your sister and the tremendous sense of loss that you are feeling. I hate it for you and I can't even begin to imagine how hard it must be for you to get on this site and write to others and try to encourage them. Thank you so much for posting and for caring about what David and my family are going through....

Love and blessings and peace to you,
Cindy in Salem, OR

connsteele
Posts: 232
Joined: May 2011

Cindy, all I can say is that I truly feel your pain. It looks like we are on the same path. But if anyone has a good chance to have a great response to the Avastin, I do believe your David is one. I subscribe to another list serve (btcaregivers) and I have read about patients who have had a dramatic improvement on the Avastin, especially initially "Like someone flipped a switch" is what one woman wrote about her husband. Improved deficits and memory and general overall well-being. I truly hope and pray your David is one.

Unfortunately, our David is not one of those. He had his second infusion last Thursday and he just continually declines (however, his deficits have been so very pronounced right from the beginning of this nightmare, so any slip for him really makes a difference in his function.) Other than the physical decline, he has tolerated the Avastin well..no bloody nose, no nausea. He does have some fatigue a few days after but hard to tell if it's the Avastin or weakness from the tumors.

His speech now is reduced to a whisper and unintelligble mono-syllables...we use a card with the letters of the alphabet that he points to, to spell out words. His right side is totally gone and I fear that his left side is starting to decline as well. He is also bladder incontinent.

Hard to believe, but our NO still has him scheduled for three more infusions (over next six weeks) with the final one on April 24 along with an MRI. His nurse said Dr C doesn't like to have the patient get an MRI until completion of three cycles of Avastin. However, David will be seeing Dr. C in clinic next week after he has his third infusion and I wonder, considering David's clinical status, if he'll have David continue.

Our home Hospice team has been so wonderful...delivered a bed, over the bed standing tray, lift chair, bath bench, plus hospital and pharmacy supplies. An aide comes three times a week to give him a bath. We even got a house call from the attending physician. What I am grateful for now is that he only has some mild headaches in the morning...two tylenol take care of that.

Please don't think that I am saying you are ready for this step. Just want you to know there is a lot of support out there. We needed it because we just can't get it from family, who live far away.

I really don't know how long our David has. It's getting harder and harder to get him out of the house and into the car. He spends most of his time in the recliner, watching TV or playing his XBox with his good left hand. He seems content with that. Some days this seems so unreal..like I am watching a movie. Other days I just want to crawl under the covers and not come out. We are also having regular visits with the Hospice chaplain. She is a wonderful lady, understanding and compassionate.

I hope and pray that your David will be one of those who sees a dramatic turn around on the Avastin...if anyone has the great potential for that, it is your son.

Hugs, love, and prayers, Connie
m/o David age 34
AA4

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you, Connie.

I appreciate your post very much. I am so sorry that you can relate so well to what I am going through. I hate it. But I am glad that you are sharing your knowledge and experience with me so I know what the road ahead might be like. I'm glad to know that there is some physical help available. We don't need it now, but it takes one less worry off my plate, knowing that I can reach out for some of the things we may need, when we need them.

I have a very dear friend named Chris. She lets me keep my horse on her properly and use her barn...for free. She and I have been friends for 28 years. We met when I was pregnant with David and she was pregnant with her son Jeff. We both had four kids, and we both were pregnant at the same times. We did everything together back when they were little....grocery shopped together, ran errands together (with 8 kids), pizza, trips to the beach, zoo.....just spent a lot of time together. We lived close together and we went to the same church and basically we hung out together every day. Our kids are close too. Her son Jeff was killed in a car accident when he was thirteen--fifteen years ago now. He was David's best friend. Jeff was on his way to church. Not doing anything wrong, a good boy, just going to church. Chris and her family and all of us were just absolutely shocked and devastated. It was a terrible time and I stayed close to Chris, talking to her all the time, many times each day, even in the middle of the night. She has a deep faith in God, but the grief was still so overwhelming. All through these years, she's always chosen to go forward in her life. She said that she wants to be a better person, not a bitter person. Now she is staying close to me, talking to me every day, even in the middle of the night. She says that her life now is still good, that it's filled with blessings. She still misses Jeff, still cries when she talks about him, still feels incredible pain and loss. She and I were talking about her life and my life, and I told her that at first, I felt that if I lost David, then I would really just rather be dead myself too. Not that I would kill myself or anything, but my life would be shattered beyond recovery. She understood but told me that I would be able to pick up the pieces of my life and go on. Like she is doing. It was like I had a mental picture of her ahead of me on a road, beckoning me on to follow her. And even though it's a rocky, rough, steep road, she's doing it. And if she can, maybe I can too.

That's how I feel about you, too, Connie. You are blazing a trail that none of us want to take, but will have to take anyway. I am grateful that you are choosing to share your experience with me, and that you say things to encourage me that we might get a little more time with David.

I want you to especially know that I am so sorry for your son's deteriorating condition. I think often about how you said that he wept out on his balcony when he had to give up his apartment. It was so vivid to me that I feel like I was there. It's like I have a memory of it happening with me there. I have a mental picture of his apartment and his balcony.....even though I've never seen it. I felt the pain of that so much that I am probably making a dumb choice, but I won't allow anyone to talk to David about giving up his apartment. I don't care if we are throwing $1,000 a month away on apartment rent, to an apartment that David will never return to. I don't care if we keep it until David dies. I cannot bear to talk to David about giving it up. He just told the nurse yesterday that he is staying with me for right now, but he lives in Portland. Yesterday was a terrible day for me...I'll post about it later....

I share your pain and anguish, Connie. I will keep praying for both of our Davids, and for the others on this site that are in this terrible battle. And for strength and peace for you.

Love and blessings,
Cindy

connsteele
Posts: 232
Joined: May 2011

Just want you to know that I am thinkingo of you this morning. I really support your decision to keep David's apartment as long as it's possible. It's like a beacon of hope for him, something he can look forward to as a goal. If anything, his apartment could serve as a "mini-retreat" for even a day or an afternoon.
Love to you and David
Connie

connsteele
Posts: 232
Joined: May 2011

Cindy, I had wanted to add to my 8:08 am post: Is David scheduled to include another drug with the Avastin?
Thanks, Connie

connsteele
Posts: 232
Joined: May 2011

Cindy, all I can say is that I truly feel your pain. It looks like we are on the same path. But if anyone has a good chance to have a great response to the Avastin, I do believe your David is one. I subscribe to another list serve (btcaregivers) and I have read about patients who have had a dramatic improvement on the Avastin, especially initially "Like someone flipped a switch" is what one woman wrote about her husband. Improved deficits and memory and general overall well-being. I truly hope and pray your David is one.

Unfortunately, our David is not one of those. He had his second infusion last Thursday and he just continually declines (however, his deficits have been so very pronounced right from the beginning of this nightmare, so any slip for him really makes a difference in his function.) Other than the physical decline, he has tolerated the Avastin well..no bloody nose, no nausea. He does have some fatigue a few days after but hard to tell if it's the Avastin or weakness from the tumors.

His speech now is reduced to a whisper and unintelligble mono-syllables...we use a card with the letters of the alphabet that he points to, to spell out words. His right side is totally gone and I fear that his left side is starting to decline as well. He is also bladder incontinent.

Hard to believe, but our NO still has him scheduled for three more infusions (over next six weeks) with the final one on April 24 along with an MRI. His nurse said Dr C doesn't like to have the patient get an MRI until completion of three cycles of Avastin. However, David will be seeing Dr. C in clinic next week after he has his third infusion and I wonder, considering David's clinical status, if he'll have David continue.

Our home Hospice team has been so wonderful...delivered a bed, over the bed standing tray, lift chair, bath bench, plus hospital and pharmacy supplies. An aide comes three times a week to give him a bath. We even got a house call from the attending physician. What I am grateful for now is that he only has some mild headaches in the morning...two tylenol take care of that.

Please don't think that I am saying you are ready for this step. Just want you to know there is a lot of support out there. We needed it because we just can't get it from family, who live far away.

I really don't know how long our David has. It's getting harder and harder to get him out of the house and into the car. He spends most of his time in the recliner, watching TV or playing his XBox with his good left hand. He seems content with that. Some days this seems so unreal..like I am watching a movie. Other days I just want to crawl under the covers and not come out. We are also having regular visits with the Hospice chaplain. She is a wonderful lady, understanding and compassionate.

I hope and pray that your David will be one of those who sees a dramatic turn around on the Avastin...if anyone has the great potential for that, it is your son.

Hugs, love, and prayers, Connie
m/o David age 34
AA4

Dan620
Posts: 219
Joined: Dec 2009

Hi Cindy, I have been following your post for some time now, David and you are truly a inspiration for all fighting cancer. I'm from lung cancer group SCLC 3B and want you too know i am praying for David and hope Avastin works. Hugs and prayers ..... Dan

sadinholland
Posts: 237
Joined: Apr 2011

I don

sadinholland
Posts: 237
Joined: Apr 2011

Praying for you and David! This was on my Facebook wall today so I thought I would share it with you. I hope they bring you a little comfort.

Thought for the Day: “At times, we all face very difficult days. It is sometimes hard to not let these days drag you down until you tire and become full of despair. During these times, know that Jesus faced days like this too. He knows how you feel and wants you to take His hand as He walks with you towards the light of a new day.”

sadinholland
Posts: 237
Joined: Apr 2011

Praying for you and David! This was on my Facebook wall today so I thought I would share it with you. I hope they bring you a little comfort.

Thought for the Day: “At times, we all face very difficult days. It is sometimes hard to not let these days drag you down until you tire and become full of despair. During these times, know that Jesus faced days like this too. He knows how you feel and wants you to take His hand as He walks with you towards the light of a new day.”

Sorry for the double post.

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you for the " Thought for the Day." It's a great message. I do feel dragged down and full of despair. I'm actually better today than yesterday, though. I talked to our NO's nurse yesterday and she was so...not full of hope....I guess I should say she was so negative...that I cried off and on for the rest of the day. My kids and my husband and my sister were all concerned for me. They don't know what they can do to help me...that's because no one really can help me right now. Only God.

I guess deep down in my heart, I really believed that David would beat this. I am having a hard time facing the fact that he may be losing the battle. I am not ready to stop fighting! And neither is David! A lot depends on how he responds to the Avastin, He is a little better today, and since it's only been 24 hours and I see some improvements, I will consider that a good sign.

I'll post later tonight and let you all know what our NO's nurse had to say. I am trying to keep in mind that none of them know the date and time appointed for anyone's transition into eternity...they are all just making the best guesses that they can.

Thank you again for your thoughts and prayers and posts. I can't tell you how much it means to me.

Love and blessings,
Cindy

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Thank you Dan, for your post and especially for your prayers. I'm really touched and blessed that you and others on CSN follow my epic posts and keep up on David's condition and my state of mind. I would love to think that I have some strength, and to believe that I encourage others, but these days, I feel like I am barely crawling through my life. I feel so weak! I was a mess yesterday......still trying to go forward, but it's been a rough go for me lately. Yesterday was bad.....but today is a little better. And even a little better is still better!

I just now took a break from responding to these posts here on CSN, and David and my husband and I, and my daughter Cathy and her fiancé, and my sis and bro in law all went out for lunch. David is a little better today. Since he just did the Avastin infusion yesterday, I am very glad to already see some improvement, even if it's just a slight one. But like I said to David, a little bit better is better than a little bit worse, and it's a lot better than a lot worse. I was trying to make him smile....he just looked at me like, "Whatever, Mom." But he did smile.

Thank you again for your note....it encourages me to hang in there, and it makes me feel a measure of peace to know that you and others are praying for David and for me.

Love and blessings,
Cindy in Salem, OR

BenLenBo's picture
BenLenBo
Posts: 144
Joined: Feb 2012

Hello David & Cindy,
Our prayers for better days ahead- gifted hands of the medical field, strength for
David to carry on toward recovery, and for laughter to get everyone through the rough patches.
I was glad to hear that you kept David's Apartment, its his domain, when Benjamin was
home for 3 months, we would visit his farm and watch movies at his home. Friends were
called to pop in. Really boosted his spirits, and ours, it removed the everyday stress, while the battle is on to beat this cancer.
As for crying, I cry all the time, to see one of your children going through these
uncertain time, how can one not cry. Crying helps the soul, and relieves tension with in
the body to help move forward. Cindy you are like me, I never cry in front of Benjamin, and neither does the rest of the family. We started in the hospital- NO ONE ENTERS THIS
ROOM AND CRIES! Also, no negative thoughts or statements were allowed, I really disliked
when a Doctor or Nurse would come into his room before diagnoises and say "I AM SO SORRY",
finally told them to stop. We didn't need to hear it.
Until I took the time to read post on this site, I did not know that Radiation is
only a one time shot- so thanks for the information. We were probably told this when
treatment was being mapped out, but our minds were elsewhere. This site is really hard
to wean out the old from the new, posts are total mixed up. I read some really old post
an wonder how those individuals are doing, but no information is offered- frustrating. As I write this today, I admire your strength and compassion you have keeping everyone up to
date on David and your lives. It's so helpful to others :o)
My friend sent me this: YOUR SON WILL HOLD YOUR HAND FOR ONLY A
LITTLE WHILE, BUT HE WILL HOLD YOUR HEART
FOR A LIFETIME!!!!!

(((((hugs))))

Benjamin & Carol

Woodsymom's picture
Woodsymom
Posts: 13
Joined: Jul 2010

Dearest Cindy-
I continue to follow David's journey as my son Loren was diagnosed nearly the same time as David. Loren is 27 and currently chemo has been determined as not effective anymore. He started having headaches so they moved his MRI up only to find that the tumor/tumors have spread and shown thickening inside the cerebral interior and along the ventricular walls. He has started Avastin 2/29/2012 which he had stopped chemo 2 weeks prior. A very scary thing. In my mind that means that the tumor has the ability for uncontrolled growth. At the time of the last MRI, his wife asked if we were running out of options and we got a very clear 'NO'. He has completed his 2nd Avastin treatment/4 weeks and is doing very well. He is even working a few days a week supporting people with developmental disabilities in community and work. Yes, he forgets. Yes, he is concerned. But today he is good. I will keep you and David in my prayers. David's road has been more difficult than Loren's so far; although, both diagnosed with Stage 3 Oliogodendroglioma.

Scottgri
Posts: 44
Joined: Mar 2012

I am getting my 16th dose of Avastin tomorrow. Every other bi-weekly dose is accompanied with 5 days of Temodar since July of 2011...I feel great!!!

I had a grade 4 GBM removed in April last year, went through the expected roller coaster, and am mow back to work full- time and feeling completely normal. It's almost scary when it comes back to me where I am and where I've been because I completely forget about it all the time.

My point on this thread is Avastin can work, it's working for me. I'm no doctor and I'm sure there are a lot of factors so this is certainly no promise it will for someone else...that said, i had hope, chose to fight with everything I had and it's working. No sign of recurrence. My next MRI is next week and I am looking forward to helping prove this protocol works!!!

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Scottgri-

My daughter started avastin in May 2011. She has tolerated it very well. A little bloodly nose here and there. Her MRI's are also stable. She is supposed to stop her infusion at the end of April. There has been some discussion about continuing the Avastin. It is very scary to know what to do to prevent a reoccurrence. Do you know what your treatment plan is?

Edna

Scottgri
Posts: 44
Joined: Mar 2012

Hi Edna,

I don't have a final treatment plan yet. However, the most recent thoughts of my doc are to continue Avastin permanently every 3 weeks instead of the two-week cycle I'm on now.

I had some platelet issues around September last year so they reduced my Temodar by 25% which fixed that right up. High blood pressure from the Avastin is being treated with some low dose meds and that is fine now.

Scott

connsteele
Posts: 232
Joined: May 2011

That's fantastic! So glad that the Avastin/Temodar is working so well for you. And thanks for letting us know by posting on this site. We all need a boost of hope every now and then.
Connie
m/o David, age 35, dx April 2011 AA3, has progressed to AA4

Scottgri
Posts: 44
Joined: Mar 2012

Glad to share, I had some scary times before I found the hope I was looking for...but my family and I found it.

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