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New treatment plan, etc.

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

I heard back from David's team today. The plan is for David to have a month off from all treatments, starting today, so he can recover from the BBBD treatment that was so hard on him. Then at the end of January, he will do the same chemo combination: carboplatin, etoposide, and melphalan--but without the mannitol--no blood brain barrier disrupter. That treatment--the BBD--almost killed him.

He will receive the chemo via an intra-arterial infusion....they will run a line up his femoral artery up to his carotid like an angioplasty, and then shoot the chemo to his brain. Two chemos will be given that way, and the third will be administered via his port. They will do it one time, vs. the two infusions done with the BBBD. They call this treatment "IA" for intra-arterial. David had this type of chemo treatment in Sept and he tolerated it well. It also stabilized the tumor and possibly reduced it a small amount.

They will also start David on Avastin. I talked some more about Avastin with one of the members of our NO's team. She said that Avastin is used for different reasons. Sometimes it is used just to treat symptoms and improve the quality of life. I think I've heard that before, and that's where I got the feeling that it was a "last resort" treatment. In our case, our NO wants to use it in conjunction with David's chemo because our NO believes in treating brain tumors aggressively and hitting it with as many weapons as possible. We want that same thing. Our NO wants to use chemo to shrink or at least stabilize the tumor, and to give Avastin to starve the tumor as much as possible.

According to our NO and his team, Avastin is not a chemo. It inhibits the development and formation of blood vessels to the tumor, but it does not kill or shrink cancer cells. She said the "theory" is that Avastin will starve the tumor by cutting off its food supply by reducing the blood vessels. She emphasized the word "theory." I think that's because there is no guarantee that this new treatment protocol will work for David.

When David did the BBBD, one of the doctors on the team came and talked to me about an issue that developed with David. They had a very difficult time controlling the bleeding at the insertion point in his arteries in his groin. Usually they can get the bleeding to stop and a clot to form in a matter of minutes, but with David, it took over 20 minutes and they had a difficult time. Since one of the side effects of Avastin is bleeding issues, I was concerned about the clotting problem. I asked about it, and the nurse told me that they ran extra clotting tests on David's bloodwork and it all came back normal. So they think he will do okay with Avastin. I am not so sure. I have lost some faith in the doctors and what they expect. I am really shocked and dismayed about the reaction that David had with the BBBD. We (the doctors, the entire team, me and our family) all expected David to be able to tolerate the BBBD without any problem because he is young and except for a brain tumor, he's in excellent health. But he sure didn't tolerate the BBBD very well at all. So when they say he should tolerate Avastin...well, I am scared.

David continues to improve every day. He is almost back to normal. He is just very, very tired, and he feels lousy. His bones all ache from the medicine they gave him to promote bone marrow production. I mentioned his fatigue and how his eyes look so tired and bleary, and the nurse said that's totally to be expected after a normal BBBD, and David had a really rough BBBD. So they are encouraged that David is doing so well.

Mentally, I don't know--or maybe I should say emotionally.....David went out with a group of guys for a birthday dinner tonight. He was wearing a new wool jacket with a nice hat and a wool scarf wrapped around his neck. He's really tall...6'3"....and he looked so good. His sister Christy and I were so happy to see him getting out with his friends. But he called me after only an hour and asked me to come and get him. When Christy and I got to the restaurant to pick him up, he was standing outside in the rain. I asked him if he was ok, and he said yes. When we got home, I asked him again, and he said that he was okay. I looked at him, and he looked at me, and I said, "You say you are okay, but my heart tells me something different." He said, "What does your heart tell you?" I said....."It tells me that you are hurting." He said that to be honest, he felt a little jealous tonight. All of his friends are so carefree and are enjoying their lives without worrying about tomorrow. He's never said anything like that before. How do you respond to something like this? I said that I feel jealous of them too. I hate the way I feel, but I feel that way sometimes. He kept looking at me with a funny look in his eyes. Like he wanted me to say something that would help him, that would give him some hope or some comfort. He had a pleading look in his eyes. I couldn't think of anything to say. I hugged him a long time without talking and we just stood there in our wet jackets, making puddles on my kitchen floor. Sometimes there's just nothing you can say.

I am taking it one day at a time, and focusing on the fact that David is recovering so well. It's amazing to think that just a little over a week ago, he was unable to walk, talk, or feed himself. Couldn't even say his name. And now he's almost back to where he was before the treatment. It's taken a lot of effort and he still has a ways to go, but the improvement is really awesome. He starts physical and occupational therapy next week. I'm not sure that he needs it, but I figure it can only help him. It will give him some purpose and direction too.

Please remember David in your prayers.

Love and blessings,
Cindy

Beckymarie
Posts: 358
Joined: Aug 2009

My daughter and son got engaged during the 15 months my husband was ill. I remember the day we were all sitting together in our family room and he told my daughter he was sorry but he didn't think he would be around for her wedding. He then told my son, "You will have to walk your sister down the aisle." I tear up as I write this. How does one respond to that? It is hard to watch others go on with their lives, when you feel so "stuck". David is so young and this horrible cancer has intefered with everything in his life. As his mother, it must break your heart. David is in my prayers.
Becky

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy, Dear David,

Feeling jealous is a normal feeling... at least that is what I tell myself. Since my sister diagnosis I feel like I am an outcast looking in and witnessing other people lives, happy full of dreams and minor headaches: "my boss doesn't like me" "I got divorced" " I need more money"
All of these problems are NOTHING compared to brain cancer. I would do anything to have my sister cured of these horrendous disease. I am not as good as you Cindy, because I always feel like I am looking in, that I am in the shadow peaking through the window and watching other people live.

How to live with this diagnosis? One person told me that any of us can be hit by a bus and die (that does not work for me because 1) it is unlikely 2) at least you don't know about your death before hand 3) it is not a slow agony of loosing who you are ) One person told me that her husband friends has both heart attacks and died (again it does not help me: heart disease can be prevented; you can do a CTA heart scanner to see if you have any blockage; you can exercise every day for an hour; you can eat healthy; so it is not the same thing. My sister is young, she was always healthy. )

Every night I cried myself to sleep. Yesterday night I had a dream. My husband and I were building a house on top of a mountain. We could not believe our luck that we would have this amazing view, on the cliff, looking down into the lustrous valley. We were far away from human contact. The only way to get to our house was to climb on foot this rocky path. I remember the excitement and welcoming hard work. And then I woke up: my sister has brain cancer.

The effects of the radiation are full blown (at least I think it is radiation effects): she moves slow. Not like a young woman (she is 29) but like an 80 year old. We went to play tennis yesterday and she started to warm up and move faster. But then this morning watching her make coffee breaks my heart. I remember the REAL her: the vivacious girl, full of impatience and bursting full of life. The one who would have slammed the cubbards with her elbow while poring herself a cup of tea; opening a pack of cheese before tossing the wrap the trash as if it were a game of basketball; the one that walks as if she is Lara Croft of the movie the Tomb Raider. I want her back.

I will think of David. Avastin has been proven to give you time. And time will give us a cure

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

Dear Julia,

Thank you for your post...not just this one, but all of them.Your fighting spirit really inspires me. When I see a post that has a reply from you, I hurry up and go straight to it so I can read it right away.

I feel like you know exactly what I am feeling and going through...the helplessness, the grief, the longing to go back to how it was before David and Kat were diagnosed....the dread of the future. I have had dreams too, of sweeter times and happy events, then I have awakened and felt the crushing weight of the reality of David's cancer. The feeling of shock, like I am hearing the diagnosis again for the first time, that it is real....then lying in bed and crying and crying before I am even fully awake.....

You write so vividly that I feel like I was there in the room and saw you and Kat, making tea...I can see her in my mind's eye, shutting the cabinet with her elbow, making trash baskets, eager and impatient and ready to tackle her day....and I know the way it makes you feel to see the change in her. David was full of life like Kat...he was (still is) so tall and when he was in the room, you just knew he was there. Always so full of life and energy, always laughing and telling funny stories about his day, about things we were doing, always making everyone laugh. He was so buff...a six pack that he kept by daily workouts in the gym...he loved going to the gym, playing basketball, playing golf, going shooting, riding his mountain bike......like you said about Kat...bursting with life....now he's still tall, but so quiet and subdued, always feeling sick, rarely smiling....but never complaining, always willing to do whatever it takes, however sick it makes him, to keep on fighting against losing this battle and losing his life. And I stand here and watch.....with my heart breaking, my life shattered, longing to do something, anything, to help him, to encourage him, to try to give him hope. And there's nothing I can say or do....

I, too, struggle with people who complain about mundane things...even things that David would love to have in his life...noisy kids, yard work, long hours at their jobs, hard courses and strict professors in their college classes. People who say "FML" on Facebook--really??? David would take your life with all of your "problems." Sometimes it's hard for me to keep my mouth shut. I guess it's all relative? I remember an incident with my best, closest friend. We've been friends for over 28 years. (She lets me keep my horse on her acreage for free.) Her son Jeff was my son David's best friend.They were friends from babyhood on. Jeff was killed instantly in a car accident fifteen years ago, on his way to church. He was thirteen years old. A few years after Chris lost Jeff, another friend and I stopped by to visit with Chris, and my friend had just lost her little puppy in an accident. She was pretty upset (we both are dog lovers) and she cried and cried when she talked to Chris about her puppy. Chris hugged her and told her how sorry she was about the puppy. Later I asked Chris if she ever felt annoyed or upset when people carried on about a dog dying when she had lost her son. She said, "Oh, no! Never! Their pain is real to them, and I feel so bad that they are hurting so much." I told her that her attitude was an amazing example of unselfish graciousness, especially considering what she had suffered, losing her son. She told me that a long time ago, she had decided that losing Jeff could make her bitter, or it could make her better. She wanted to choose "better." I try to remember her words and her example, but I have to admit, I really fail at this. Sometimes I want to strangle people for the dumb things they say....the same stuff you've heard, about the bus, or having a heart attack.....it's just so not the same. I do believe, though, that it never comes from a malicious heart. People don't know what to say and they just want to try to say something that will help us to feel better.

Thank you for reminding me that Avastin could help David. And that the more time he has, the closer we can move towards a cure someday. My prayer is that the cure will come in time.....

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

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

You are so right...nothing you can say really helps.

My daughter got engaged a few months ago. We don't talk about it amongst ourselves very much...but we are all afraid that David won't be here with us for her wedding. Her wedding date is June 30th. It's hard for me to be happy and make wedding plans and go with Cathy while she tries on wedding dresses....but cancer has stolen so much from us that I want to fight to enjoy these events that should be joyous times. So I go along to the bridal stores and the wedding shows....but inside, I'm so heartsick. Not only am I afraid that David might not be here....but there's the wound in my heart from knowing that he will not get married, have children of his own....he so wanted a wife and a family. We even banked his sperm when he was first diagnosed and he had to do radiation and chemo, because he still had hope...he never talks about a wife and children any more.

It is heartbreaking for all of us...I as a mom, you as a wife, and seeing your children's pain....it is horrible. I am still trying to take it one day at a time. I am still so very grateful for every minute that we have with David....

Love and blessings, always,
Cindy

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

A couple of weeks before my sister was dianosed I went wedding dress shopping with my sons bride to be. We all talked about going to Hawaii to see him get married. Some where my sister always wanted to go. And then boom life changed.
All the wedding plans are a big blur to me. I was going to give her a bridal shower and backed out. I did go to the wedding, was the hardest thing for me. But that day was my sons day, and I couldnt take that away from him. I went with a smile on my face and danced...Crying inside but noone knew...
Talking about peoples lifes going on, everyone around me is smiling and laughing. My heart is still bleeding. People said stuipid stuff to me too, like so your feeling better? I just want to screem... What the hell, NO I dont feel better!!!! Im so lost. I just want to talk to my sister. Life without her sucks....

Girl2010
Posts: 26
Joined: Jan 2011

My sister got engaged before my brother got sick .. But the actual wedding planning was after he got sick.. My mom tried so hard to help but.. But we were soooo grateful my brother could be at her wedding... He had such a good time. First time I had seen him smile and laugh so much in a long time. Don't feel bad about not having the heart to help with the planning .. Ah my heart aches for you. Your story is so similar to ours ... I think of your family often..

sonfollower
Posts: 26
Joined: Nov 2010

Cindy.
I have been following your posts. Thank you so much for your openness and honesty. I was diagnosed with a grade 4 glio in May 2011. You postings have been very helpful to me because it gives me a little bit of insight to what my husband has been going through as a caregiver.

I have done the radiation, temodar and now am on the Avastin and Temodar 5/28 days. I have been having very good results. The tumor is continuing to shrink. I do get very tired and nauseous after the Avastin and Temodar week. Its not untolerable, more just very annoying.

I have been praying for you and your son.

Question for you: Did you have a daughter that went to Corbin in Salem? My oldest daughter graduated from there and thinks that she recognized your picture.

Love Lora

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

Hi, Lora.

Yes, my daughter Cathy did graduate from Corbin. She graduated in May of 2009. David was very sick at her graduation ceremony with a terrible headache. He was diagnosed about 3 days after her graduation. It's still hard for me to look at the family pictures we took at her graduation because you can see the pain in David's expression. I thought he just had a bad headache....

Does your daughter know Cathy? Cathy lived in Davidson (her dorm). She really loved Corbin and college life. Cathy is my oldest daughter, the one who is getting married on June 30th, that I mentioned in my above response to Becky.

Thank you for your note, Lora. I hope that the things I put on this website don't cause you and others pain. Sometimes I'm afraid that I am a little too open about the way I feel and what David is going through...but on the other hand, if it helps anyone, even a little bit, then that makes me feel a little better.

It makes me very happy to hear that you are having good results with Temodar and Avastin. I know that some people beat cancer, and I will be praying for you---that you will be one of them. Even though things have been hard for David recently, I know that they could turn around and we could be amazed at how well he could do. Even now the improvement from a week and a half ago is pretty amazing. I talked to one of his doctors today and they asked me if he was still talking really slowly and if he was sometimes still not able to answer questions. I was able to say (with such a grateful heart) that he is talking almost just like before, and that I could tell his doctors that David says he can feel himself getting better and better each day. We just do not know what the future holds....

I don't say it as much as I used to...but I am still praying hard and I'm still holding on to hope....

Love and blessings,
Cindy in Salem, OR

sonfollower
Posts: 26
Joined: Nov 2010

Cindy.
My daughter graduated from Corbin in 2008 and married her sweetheart just 2 weeks after graduation. She did know Cathy. Tricia lived in Davidson for the first 2 years, then she lived off campus for the rest of her time at Corbin.

I can relate to the feeling better and better each day. I have had several months of this. I have had several surgeries in the past and usually recover very quickly. This cancer has definitely been the hardest recovery I have ever experienced.

I continue to pray for David, you and your family, and others on this site.

Love Lora

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

Hi, Lora.

Cathy actually graduated in Dec. of 2008 and walked in the grad ceremony in 2009. She and your daughter Tricia worked on their senior project together. Cathy also lived in Davidson for one year and then Balyo the next year.

I'm so glad to hear that you are continuing to improve. Thank you for your prayers for David and our family...I am so grateful.

Love and blessings,
Cindy

Raani01
Posts: 70
Joined: Mar 2011

Lora, GLad to year avastin /temodar working-class for you.my husband isscheduled to started on AVastin.Can you please dell me why you started AVastin.Is it because the temodar stopped working?! My. Husband's NO didn't mention temodar with AVastin.I am preparing to askthese to the NO as we meet next week.Thanks
Raani

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

I was touched by the description of fortheloveofmysis at a wedding having to pretend to be happy.

My father recently reproached me for not making plans for thanks giving, his birthday, xmas, and New Year with him and my mom. The truth is every once of love and caring I give it to my sister. If there is any left over I give it to my husband, who has been amazing through all my sister's diagnosis (aa3). But I just don't have the energy to plan or the desire to celebrate anything. I understand my father is hurt. But when it was his birthday I was caring for my sister who had extreme vertigo from her second surgery. I did not know what was going on and I was terrified.

The diagnosis of brain cancer can either bring together families or break them. My other sister (we are three girls in the family) decided to study for an test instead of coming to my sister's fundraising, even though my sister with the brain cancer cried on the phone. I still cannot forgive my healthy sister for causing so much pain to my little sister.

J.

sonfollower
Posts: 26
Joined: Nov 2010

At this point I do Avastin every other week and the Temodar once a month, the same week as the Avastin, for 5 days.
The Avastin and Temodar are the next steps in treatment to reduce the tumor. So far, it has been very successful, as my tumor has continued to get smaller with each MRI.

Every NO will have a different protocal that they like to use. My NO is a specialist in Seattle. This is all he does and is very experienced. My NO in the town that I live in does not have very much experience with this sort of cancer and I didn't feel confident with him treating me.

So here is a typical month with the Avastin/Temodar.
Go to the infusion center and get IV placed. Avastin is then infused - takes about 30 minutes. On the weeks that I do the Temodar, I have to eat my last meal or anything at all by 6pm. I cannot have anything, other than water until 10pm. I take the Temodar and a glass of water and go straight to bed. The Temodar needs to be taken on an empty stomach, otherwise it does not work. Do this for 5 days.

I have not had to many side effects. Usually by the end of the week I am pretty tired, exhausted and feeling nauseous. The major side effect of the Temodar is constipation which is manageable.
The side effects of Avastin are bloody nose every morning, just a very small one, feeling like I am getting a cold in my sinuses, fatigue, bruising and stomach upset.
There are more side effects with the Avastin, but these are the ones that I notice. If you Google Avastin there is a complete website about how this works, side effects, etc.

I hope this has been helpful. Let me know if I can answer any more questions.
Lora

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