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an update on David

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

I started typing a description of David's situation and I just can't do it. It would make too many people on here feel horrible. I will say that there has been some improvement. We get to go home tomorrow. David will be living with me and my husband (his dad) and David will get tender loving care and anything he needs. We will be taking him to outpatient rehab and I will be working with him at home. He needs 24/7 care at this point.

The doctors say he will recover from this. I don't know if I believe them. They also said he is off the BBBD protocol. They didn't have to tell me that. We would never allow another treatment after what this one did to David. I think the treatment came close to killing him. If you could see him, you would agree. They said that another surgery is not an option--it would be "catastrophic" and we'd never find a surgeon who would agree to operate on him. Radiation is out of the question. There aren't any more effective chemos to try. They are considering doing just IV chemo, or IA (intra-arterial) chemo, which David did the beginning of Oct., and he had a favorable response. IA delivers the chemo with 10x the power. The BBD delivers it with 100x the power. The BBBD was too much for David. IA uses the same three chemos as the BBBD protocol...carboplatin, etoposide, and methalan. But no mannitol for the blood brain barrier disruption. They said that looking at his earlier MRIs, his tumors were advancing and will involve "eloquent" areas at some point in time. The last MRI did not show the large amount growth that the previous MRIs did,though, so that is good.

They are considering adding Avastin. Here's what they tell me about Avastin. But before I say what they told me....I need to preface this with some information. Not all doctors agree about Avastin. I don't want anyone on this site to think that what they are telling me about Avastin is set in stone. NIH did NOT agree with OHSU's opinion of Avastin, and they thought David should have been on Avastin a while ago. NIH said many times, and I quote, "David deserves to be on Avastin. It is a good, FDA-approved drug and it has shown good, durable results." When I talked to Dr. N's head nurse (the non-dog one), she said that when they gave Avastin to lab rats, their symptoms improved but at autopsy, their tumors had grown huge. She said that Avastin only treated the symptoms. They feel that Avastin is a fancy steroid. They said that patients feel better at first because it is relieving symptoms, but that Avastin does not kill cancer cells. So....I asked why do Avastin? I said I thought they (the OHSU team) considered Avastin an end of the line drug, and they said, yes, they do. Fills me with so much sadness for David.....

They said the way Avastin works is to prevent angiogenesis...the formation of the blood vessels that feed the tumor. The blood vessels stop reaching out to the tumor to feed it. But the tumor then starts to grow towards the blood vessels. That's why the tumors in the lab rats were so big. So they give the 3 chemos to kill, or at least stop, the tumor from growing to the blood supply. But in time, they said that the tumor will find a way around the chemo. They don't know how long it will take. And they don't even know for sure if Avastin and the 3 chemos will work for David. It may not work at all. They said there are no markers or genetic indicators for prediction. My heart is so heavy and I don't have much hope. If it did work, it might give David another two years. But things don't seem to be working very well for him these days.

David's current issues are from his brain swelling from the disruption. He has a lot of edema. For a while there, they thought he had a stroke, but an MRI and a CAT scan ruled that out. They said that he has a lot of tumor and he does not have any space to tolerate any swelling whatsoever. They have him on a high dose of steroids to reduce the swelling but it will take some time.

So that is where we are at. Like I said, there's been some improvement. David isn't drooling any more, and he can swallow. His memory is fully intact. He can look at all the photos on the wall at the hospital that i put up, and he can tell the therapist the names of everyone, the names and details of the places in the pictures, what he is eating in one of the pictures....it's pretty incredible. (He says talking takes a lot of effort.) He does funny things on purpose, like when I was trying to turn the room lights on, I couldn't figure out why they would go on and then turn off. That's because David was deliberately playing a joke on me by using the light controls on his bed. He did it when he had company and they all laughed. But a few minutes later, he was zoned out. I would talk to him or ask him a question and it's like he's deaf. I put my hand on his arm, and he looks at me quickly like he's startled. His friends come in to visit and he doesn't even look up or seem like he knows they are there. It's so weird how it comes and goes. But I do have to say that he has improved tremendously. He's working hard at the physical and occupational therapy. We will be going to therapy on an outpatient basis.

My life will pretty much be devoted to taking care of David. I feel overwhelmed at the enormity of care he needs but I can do it. I have a lot of great family members who will help me. And I am hoping that David will continue to improve and will need less care.

One last thing....I noticed that the one thing that gets David's attention, the one thing that makes him smile, the one thing that will make him respond and talk...is the mention of his little puppy, Jackson.You know, the one they didn't want him to get. David is really looking forward to getting home and having his puppy with him. He also has a video of his little niece Kaylie on his iPhone and he plays it over and over. She is saying in her cute little baby girl voice, "Please get better, Uncle David. Please come back to us." David had tears trickling down his face as he watched that video. Sometimes I wonder just how much pain we can take.

Love and blessings,
Cindy in Portland, OR

connsteele
Posts: 232
Joined: May 2011

I am so sorry to hear about how hard this latest treatment has been on David. He is such a fighter. I'm sure once he gets home to you, the tender loving care of family and friends will be a real healing balm.

I really appreciate your coming forth about what you've been told about Avastin. Our son David (age 34, dx 4-13-11 inoperable AA3) has not been put on Avastin...yet. It's curious though, his doc at Ohio State mentioned putting him on it, but wants to hold off. In fact, on our very first visit with him, right after moving David back here from Virginia, where he had the surgery and radiation/Temodar, his new NO said he was going to put David on it...but then changed his mind for the 5/28 Temodar. Said he wanted to give Temodar a chance (as if it was either/or for Temodar/Avastin?). So, David has completed four rounds of the 5/28 Temodar.

But now, after his MRI last Thursday, he's going off the Temodar completely. While the scan showed that the original tumor is stable, a new one has showed up on the scan. Now, David is being put on CCNU and procarbezine. His NO said that he is putting Avasin "in his back pocket", for later.

What's surprising for me too is that CCNU is one of the drugs (along with radiation) he took when he was first diagnosed with a brain tumor...medulloblastoma...at the age of 8...26 years ago! So, I have to look at it this way. David got 26 years of life, cancer free (but not without major long-term effects) so maybe it was the CCNU that did it.

Has your David ever taken Avastin?

I find it amazing, and disconcerting, that there is such a diversity of opionions among the neuro-oncology community. Didn't you say that when you went to NIH, you were told that if you went to 10 NOs, you'd get 11 opinions?

Thank you for your updates. I have learned much about this disease through your experience, but it breaks my heart to hear what you have been through. Many hugs and prayers to you and David.

Connie

Raani01
Posts: 68
Joined: Mar 2011

My husband is scheduled to start on Avastin on jan12,2012 after he recovered from the surgery.As I read through all of your response about Avastin, I am not sure what to do! After temodar, there is no other med other than Avastin?!
Cyndy, I am praying for you and David.May God bless you and your family with a peaceful, happy Christmas..
Raani

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

Dear Raani01,

I was concerned that my post about Avastin would be really hard for people. Please don't let my post affect what you and your trusted team decide to do for your husband's treatment. Just because OHSU thinks Avastin should be more of a last resort does not in any way mean that it is true. It's only an opinion, and like I said, not one shared by a lot of other doctors, including David's team at NIH. I don't think I've ever seen anyone else on this site say that their doctors share that same opinion about Avastin.

I also spoke to another doctor on David's team and I mentioned what connsteele said that her son was taking...CCNU and Procarbezine--and I asked if David could take that mix if the carboplatin, etoposide, and methalan didn't work. He said yes, David could do that chemo too. So Avastin is not really a last option for David. David may not take it yet. That dr said that David "has not failed" at the carboplatin mix....meaning that his tumor has responded by remaining stable. Just because he did not tolerate the disruption does not mean that the chemo is not effective for David. That's why they want to keep him on that mix, just without the disruption added. He also mentioned that you can get lasting benefits from Avastin...several (two or more, maybe even four) years from using Avastin. So that made me feel a little better. Of course, he added that there are no guarantees or ways to know if Avastin or anything else will work for sure. But I've seen it before...what doesn't work for one person may work for another.

When I first got on this site, one of the first posts I read was about someone's husband having a bad reaction from Avastin and it must have mentally impacted me because I have feared Avastin ever since. My son's doctors said the side effects are rare. And look at the side effects we are dealing with from the BBBD! I think Avastin would have been a better choice. But if we hadn't tried, we would have always, always wondered...what if???

David is making progress but it is a lot of hard, hard work. The care he requires is overwhelming to me but I am hanging in there. Today was our first full day at home. We are all learning what to do. It's going to take a village---our entire family---to pull together and make sure that David gets the attention and help that he needs. Thank God I don't have to work outside of the home. I don't know what people do if they don't have a family member that can give 24/7 to their loved one. I just cannot imagine how difficult it must be....

I'll update again and share a little more about David's improvements in a day or two.

Love and blessings,
Cindy in Salem (home) OR

Beckymarie
Posts: 358
Joined: Aug 2009

Dear Cindy,

I have followed your postings and my heart bleeds for David and your entire family. We went through this with my husband who was diagnosed with at GBMIV in March 2009. The tumor was massive and inoperable. After the standard course of Temodar and radiation, he went on Avastin. It had dramatic, positive results shrinking the tumor by more than half the first round. We were told right from the start that this was a time-byer and the tumor would eventually find its way around the Avastin and grow in other areas of the brain...which it did. He passed away in June 2010. If I knew then what I know know, I would have passed on the radiation and gone straight to the Avastin. He did not tolerate the radiaion well and was never the same after the treatments. Avastin did buy him time, but it is not without its side effects, one being hemorrages (sp?). He did have a massive nose bleed which required a trip to the ER to get under control. I guess in summary, I think the radiation took any quality of life he had left and perhaps the Avastin would have shrunk the tumor enough to give him a longer period of good time...I don't know.

The kids and I and family took him through his final weeks with as much love and dignity as we could provide and were with him at the end.

Again, I am sorry and I keep David and all of you in my prayers and hope some day this horrible disease is conquered.
Becky

cdolive4
Posts: 34
Joined: Sep 2011

Cindy, I have been following David's journey intently, although I haven't posted lately, and wanted to let you know that you and your family have been in my thoughts and prayers. You have had a rough couple of months and the love you feel for David shines through like a beacon. You have also taken time to motivate and help others, and I just wanted to let you know what a bright light you are in the midst of darkness. Thank you for your example of love and faith, and for being the inspirational person that you are. You are definitely a blessing to all who know you. With great respect, CindyO

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

You are always in my thoughts and prayer! I hated reading the news regarding David, but keep your faith! I'm glad that he will get to go home today and play with that darling puppy. I saw the pictures, and I am gled that he was able to get the puppy. I really don't know what I can say to make you feel better other than you will be in my prayers! Have the BEST CHRISTMAS EVER!!! You deserve it and so does David!!

God Bless You!

Michelle in Mobile, AL

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

My prayers are with you, David and your family...Im wishing you a Christmas miracle...Hope that all of your loved ones are there and its the best Christmas ever.
I did a lot of reading on the avastin and Im all for it. I know a lot of doctors wait on it. Our doctor used it first... anyway, I had no fear of it and was glad that we got it.
Your strengh and love shine through all of this crazy deal we were handed. Your a wonderful mother and David is blessed to have you...

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

I will not have the right words to comfort you. I think of you and David often. I hope that the steroid reduce the swelling enough so that by xmas David has regain his normal speech.

I am in agrement with 4theloveofmysis, try the avastin if his docs think it safe to do.

Your journey is a testimony of love.

J.

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

Thank you, everyone, for your kind words and and the comfort that they bring to me. Once again, those who know what it's like can really comfort me with their messages. I am so grateful for you guys.

Well, the brain is a very delicate organ--no doubt--but it also is more resilient than I realized. David is making steady progress. In fact, he's really making great strides. He has a long, long way to go, but he's also come a long way. He's up and walking without a walker, he's much more steady on his feet, he's talking more (still takes a huge effort to form the words and speak them out), he's much more "in touch" with what's going on. He's not doing those "random purposeless repetitive motions" that made me so very concerned. (Have you ever heard of "perseveration"? It's when someone keeps persevering, or doing the same thing, for way too long. Like David would not quit brushing his teeth. He did it for about 15 minutes. Finally the occupational therapist took his toothbrush away. That was when we were still in the hospital.) He still gets "stuck" or "frozen" but he's more aware of it now. Sometimes I ask him if he's stuck and he will nod yes and I ask him if he needs help, and he nods yes again, then I help him. Like for example, I had dinner on the table and he was flicking the envelope to a card that he'd just received. Instead of coming and sitting down for dinner, he kept flicking that envelope. When I asked if he needed help, he nodded yes, and I said, "Let me just throw that away for you," and I took the envelope and threw it away. When I did that, it was like a spell was broken or something, and he went and sat down and ate. It's so strange. It's like he knows he is doing it but he can't break off from doing it. He does more of that behavior when he's really tired. And he's very tired a lot of the time. I figure that the BBBD was like a traumatic brain injury with the swelling, and he had chemo, and he has brain tumors...no wonder he's tired. He needs to rest.

I had to get on Facebook and ask people to please understand that we can't handle a lot of visitors right now. All of our friends and family have been so concerned and they have been coming by and dropping off massive amounts of food. We will never eat it all. It's very touching and I'm so glad for the support but the constant stream of visitors was wearing me out, and I can't imagine what it was doing to David. I finally grew a spine and told people "please, no" when they called or texted and wanted to come over. David still has had a lot of visitors but I've limited how many and how long they stay. David needs the stimulation and the encouragement to talk, but I don't want to overdo it. He will be starting physical and occupational therapy sometime next week and hopefully he will have more strength and stamina then.

For me, the commitment to David's care is like having a newborn. I have to set my iPhone alarms and give David all kinds of medicines all day and even through the night. Everything I do and plan is based on David and his needs and whether someone can be with him. My family helped me out today and stayed at the house with him so I could finish my Christmas shopping. I think that as David improves, I won't feel the pressure so much. Today I was tiptoeing around, thinking David was still asleep, and I took his puppy outside to go potty, and there was David, fully dressed, sitting in his car, trying to start it. Gave me heart failure. I went and asked him what he was doing, and he seemed totally normal. He said he was trying to start it because he's worried that the battery was dead. But what if he decided to drive it around the block? I had no idea that he even knew where I had put the keys. And I was shocked that he got up and got dressed and went outside and I never even knew it. My house is pretty small, and the front door is central in the floor plan. It's great that he could do all that (he was in a wheelchair two days ago) but I don't trust his judgement. I hung a big ribbon with Christmas bells on it on the front door so I'll hear him if he goes out the door again. I'm pretty crafty, huh? :)

Anyway, I just wanted to let you all know that I appreciate you , and I wanted to let you know that David is improving. Since I am with him just about 24/7, I don't notice it as much, but when I think back on how he was, I realize just how far we have come in a short time.

David is amazing to me. Never complaining or railing against God or anyone for his situation, always trying so hard and fighting so hard. He is working so hard at talking, working so hard at being positive with all of his visitors, working at his physical and occupational therapy...he is my hero. I love him with all of my heart.

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

Wikipedia definition of perseveration:
Perseveration is the repetition of a particular response, such as a word, phrase, or gesture, despite the absence or cessation of a stimulus, usually caused by brain injury or other organic disorder.[1] If an issue has been fully explored and discussed to a point of resolution, it is not uncommon for something to trigger the reinvestigation of the matter. This can happen at any time during a conversation. This is particularly true with those who have had a traumatic brain injury.

momsworld's picture
momsworld
Posts: 135
Joined: May 2010

My daughter also needs alot of assitance since her latest set back. Like you said, it is like taking care of a baby again. My daughter cannot walk on her own and has vision problems. I have gone back to work 3 days a week and I am paying someone to stay with her while I am at work. I applied for emergency medicaid for her to help cover some of these expenses and I got the letter yesterday that she was approved, YAH!!!
This will cover in home nursing care now and I wont have to pay out of pocket. I wanted to mention something about the Avastin, my daughter was on it for 1 year and she was cancer free for 1 year. She wanted a break from treatment, so with 4-5 clear MRI's, we decided to give her a break. Unfortunetly, her 1st MRI after stopping the Avastin showed new tumor growth. I believe that the Avastin does work while you are on it. Every situation is different though and my focus now is on quality of life for her. I cannot put her through anymore. I do not want her to die, but I cannot watch her suffer either.

Beckymarie
Posts: 358
Joined: Aug 2009

I was moved by your last sentence regarding your daughter. When my husband's last MRI showed new growth, we made the decision to stop treatments. We were presented with several options that would buy him a month, perhaps two. I looked at him, and knew he could not continue any more. Like you said, I loved him and could not stand the thought of losing him, but I could not watch him suffer any more.

As much as our children and I miss him, I am thankful that it is over for him..and for us. I wish you peace through this holiday season.
Becky

Girl2010
Posts: 26
Joined: Jan 2011

My parents had the hardest time deciding to not treat my brother anymore. They would have went to the end of the world and back for him .. He was miserable on the mess though. Absolutely miserable.. This disease is so awful...I'd give anything for one more day with my brother.. I almost feel jealous when I see people surviving for years with this .. He was only 19 when he passed away. He was a few weeks shy of the day he got diagnosed.. I know what you must be going through and I admire every parent and or caretaker - your daughter is so lucky to have you! Prayers for your daughters comfort, your comfort

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