Possibly off clinical--Avastin now?

cindysuetoyou

We flew back from NIH on 8/26 (my 33rd anniversary) and David had an excruciating headache on the flight. It was a nightmare, with the stewardesses all clustered around our seats, giving David oxygen, putting icepacks on his head, etc. We finally got that headache under control with a lot of oxycodone. It scared us for David to take more oxy because NIH had just warned us about the possibility of overdosing, but we were desperate.

David and I had hoped that the airplane headache was just a random one, brought on by the stress of the trip and by flying to and from MD in two days. But then yesterday his chronic low grade headache escalated into another terrible one. David said on a scale of one to ten, he'd rate it a nine and a half. I rushed him to ER and they did a CAT scan that showed, thankfully, no bleeding, but swelling in the brain. They gave him Dilaudid to control the pain and a "whopping dose" of dexamethasone for the swelling. It abated to a level two headache, which is not not real comforting, considering all the pain medicine he'd just taken.

I talked to the NIH doctor and there is a strong possibility that David will not be able to continue on this clinical trial. They don't know if Suntent (the experimental chemo) caused the swelling, or if the tumor is growing and causing the swelling. Either way, Sutent is apparently not helping. They told him to stop taking Sutent for now. Our next likely treatment will be Avastin, here in the Northwest, at OHSU. (Oregon Health Sciences University) We are not really happy about that. We had hoped to do another clinical thru NIH if the first one didn't work, but I get the feeling that NIH doesn't think it's in David's best interest to try more unproved chemos and treatments when his tumor may be growing. They seem to want to use Avastin, which I think they believe is likely to at least stop progression for a time. The dr. said Avastin is a good chemo with durable results....not a cure, but will help David right now.

I don't know exactly why I have mixed feelings about Avastin....I am afraid of the side effects. And I thought it was going to be our last option for treatment, though NIH says there are other options besides Avastin. He calls Avastin "Plan B." Do any of you have any comments or opinions about your experiences with Avastin? I'd like to know a little about what to expect.

David is very disappointed (gross understatement) at the thought of being removed from the clinical. We had the CD with the CAT sent to NIH, and they are supposed to call us today and tell us if David will stay on the clinical or not. I'm very scared by the turn in events but I'm trying to be brave and positive for David's sake. He doesn't say much.

Anyway, that's where we are today. I will add a comment to this thread when we know what direction we will be going.

Love and blessings to you,
Cindy in Salem, OR

4theloveofmysis

avastin
A oncolg, doctor I work with thinks its great the doctor that ordered it loved it. The oncolg, doctor that is caring for my sister pulled it when she got a blood clot. I had great hope...

cindysuetoyou

So maybe not off the clinical yet
What a roller coaster our life is.

David felt a million times better this morning. He slept good, didn't need any more pain medicine, didn't take any dexamethasone, and was looking forward to spending the afternoon with friends. The dr from NIH called David and said that he was more concerned with how David felt than what the CAT showed. He asked David if he could get on a plane today and fly to Maryland if he had to, and David said, yes, he could. So the doctors at NIH all discussed his case and they decided to have David stay on Sutent for now, but add dexamethasone to the mix, just to be safe with the swelling issue. We are back on again with flying to MD on Wednesday. When we get there, NIH will do another MRI and that will be the deciding factor for whether or not David stays on Sutent or tries Avastin or some other clinical. We feel a sense of relief. It's amazing how frightened and grief-stricken we were last night, and how much happier and hopeful we are today.

I know that there is no guarantee that David will not develop another horrible headache tomorrow, or the next day, or the day after that...but one thing I've been doing more lately is living one day at a time. Today has enough worries of its own so I don't need to start worrying about tomorrow's troubles.

When I took David to the emergency room yesterday, he was cold and deathly white, and his head hurt so bad. He was throwing up in the car on the way to the hospital, and he was choking and saying he couldn't breathe. His face turned so red when he threw up, and the veins were sticking out on his temples, and sweat was running off his face from the pain. I was so scared that he was bleeding in his brain---a possible side effect from Sutent--and I texted my family and friends while I was waiting in ER and asked everyone to pray. Now today he is so much better....I believe that God in His mercy touched David and turned it around for us and answered all the prayers. I know that tomorrow is not guaranteed to us, but I am so grateful for today.

Love and blessings,
Cindy in Salem, OR

momsworld

cindysuetoyou said:

So maybe not off the clinical yet
What a roller coaster our life is.

David felt a million times better this morning. He slept good, didn't need any more pain medicine, didn't take any dexamethasone, and was looking forward to spending the afternoon with friends. The dr from NIH called David and said that he was more concerned with how David felt than what the CAT showed. He asked David if he could get on a plane today and fly to Maryland if he had to, and David said, yes, he could. So the doctors at NIH all discussed his case and they decided to have David stay on Sutent for now, but add dexamethasone to the mix, just to be safe with the swelling issue. We are back on again with flying to MD on Wednesday. When we get there, NIH will do another MRI and that will be the deciding factor for whether or not David stays on Sutent or tries Avastin or some other clinical. We feel a sense of relief. It's amazing how frightened and grief-stricken we were last night, and how much happier and hopeful we are today.

I know that there is no guarantee that David will not develop another horrible headache tomorrow, or the next day, or the day after that...but one thing I've been doing more lately is living one day at a time. Today has enough worries of its own so I don't need to start worrying about tomorrow's troubles.

When I took David to the emergency room yesterday, he was cold and deathly white, and his head hurt so bad. He was throwing up in the car on the way to the hospital, and he was choking and saying he couldn't breathe. His face turned so red when he threw up, and the veins were sticking out on his temples, and sweat was running off his face from the pain. I was so scared that he was bleeding in his brain---a possible side effect from Sutent--and I texted my family and friends while I was waiting in ER and asked everyone to pray. Now today he is so much better....I believe that God in His mercy touched David and turned it around for us and answered all the prayers. I know that tomorrow is not guaranteed to us, but I am so grateful for today.

Love and blessings,
Cindy in Salem, OR

Hi there
My daughter was on Avastin for 10 months and she did not have any problems with it. There are many possible side effects that the doctors need to tell you about but ALL medications
have possible side effects. Please do not be offended by this but, I would rather my daughter be on Avastin than a clinical trial. Why? because to me a clinical trial is the last option. To me it means that nothing that is out there will work. If the doctor feels that the Avastin is a good treatment, then go for it. There is nothing to lose, and I think that it's worth the shot. My daughter just had her 4th clear MRI and I feel it is because of the Avastin and the tumor blocking meds that she is on. We Actually just went to partial treatments for her. She was on 2 oral chemo based drugs, Cyclophosphamide and Etoposide plus the Avastin. She has stopped all of those. She still takes Fenofibrate and Thalomid. It doesn't really matter what I or anyone else thinks though, it really is what you both feel is best for him and his situation. I wish you all the luck in making these hard decisions. It took me a week of debating whether or not to take my daughter off chemo. If it's working, why stop? She is 13 and she wants to have a normal life and for her happiness, and her wishes, we made the decision. I am at peace with my decision now.
Good luck

DistancerunnerXC

momsworld said:

Hi there
My daughter was on Avastin for 10 months and she did not have any problems with it. There are many possible side effects that the doctors need to tell you about but ALL medications
have possible side effects. Please do not be offended by this but, I would rather my daughter be on Avastin than a clinical trial. Why? because to me a clinical trial is the last option. To me it means that nothing that is out there will work. If the doctor feels that the Avastin is a good treatment, then go for it. There is nothing to lose, and I think that it's worth the shot. My daughter just had her 4th clear MRI and I feel it is because of the Avastin and the tumor blocking meds that she is on. We Actually just went to partial treatments for her. She was on 2 oral chemo based drugs, Cyclophosphamide and Etoposide plus the Avastin. She has stopped all of those. She still takes Fenofibrate and Thalomid. It doesn't really matter what I or anyone else thinks though, it really is what you both feel is best for him and his situation. I wish you all the luck in making these hard decisions. It took me a week of debating whether or not to take my daughter off chemo. If it's working, why stop? She is 13 and she wants to have a normal life and for her happiness, and her wishes, we made the decision. I am at peace with my decision now.
Good luck

Avastin
My wife is having only a few minor side effecs.
Slight nose bleed and headaches after aboutthe 3rd infusion.
Last night she had a 100.2 temp BUT we got that down with excedrin xtra-strength..
Avastin's side effects are minor. Good luck with it!

cindysuetoyou

momsworld said:

Hi there
My daughter was on Avastin for 10 months and she did not have any problems with it. There are many possible side effects that the doctors need to tell you about but ALL medications
have possible side effects. Please do not be offended by this but, I would rather my daughter be on Avastin than a clinical trial. Why? because to me a clinical trial is the last option. To me it means that nothing that is out there will work. If the doctor feels that the Avastin is a good treatment, then go for it. There is nothing to lose, and I think that it's worth the shot. My daughter just had her 4th clear MRI and I feel it is because of the Avastin and the tumor blocking meds that she is on. We Actually just went to partial treatments for her. She was on 2 oral chemo based drugs, Cyclophosphamide and Etoposide plus the Avastin. She has stopped all of those. She still takes Fenofibrate and Thalomid. It doesn't really matter what I or anyone else thinks though, it really is what you both feel is best for him and his situation. I wish you all the luck in making these hard decisions. It took me a week of debating whether or not to take my daughter off chemo. If it's working, why stop? She is 13 and she wants to have a normal life and for her happiness, and her wishes, we made the decision. I am at peace with my decision now.
Good luck

I know what you mean...
Hi, Momsworld.

I'm not at all offended by your comment on preferring Avastin to a clinical. I always value input and I know that you know where I am coming from. I also know what you mean about the clinical being a last resort. We were so torn about what direction to go after David had a recurrence after 2 years and 5 months of clear MRIs on Temodar. I still struggle with anxiety about whether or not it was the right decision to go for a clinical trial.

First off, David is 28 and he is his own man. The decision is his, and his alone. I do have influence and he values my opinion, but I am very, very careful not to try to sway him in one direction or the other. I can't take on the responsibility of influencing him because I don't know what's best either. He made the final decision to do a clinical and I had already determined in my heart that whatever he decided, that would be where I threw 100% of my support.

From the day that David was diagnosed, he said that he wanted to try cutting-edge treatments and techniques. We didn't like the results they were telling us we'd get with standard chemo (3 to 5 years) so we had planned on doing clinicals before David even had a recurrence. We initially stayed with OHSU partly because they had a clinical in progress that looked promising. That was the blood brain barrier disruption clinical that our insurance denied. Now that some time has passed, we've heard some less than favorable reports about that program. I guess it all depends on who you talk to. The dr in charge of it believes it gives a longer outcome. NIH doesn't agree. That's one of the things that frustrates me....such different opinions from the drs on the best treatments. I guess it's just because even they don't know.

Anyway, we didn't want to wait until David was really sick and in a bad way before we tried clinical trials. We wanted to do them while he was still on top of his game. If they don't work, we will do Avastin. We felt like that would be our last resort. I don't know if I still feel like that about Avastin. I don't know what I feel! It's all so scary and it's such a huge decision.

Our original NO at OHSU and the drs at NIH both agreed on one thing......doing a clinical or doing standard chemo are both good options. Neither place tried to sway our opinion either way. I am grateful for that.

I had read about your struggle about whether or not your daughter should stop taking that chemo mix. I can imagine how hard that was for you. I'm glad that you are at peace about it. And for what it's worth, I think that was the right choice. NIH talked to us about not keeping someone on such toxic drugs when there wasn't a tumor for it to be attacking. And I think that it's very important to consider your daughter's wishes. She wasn't wanting to go against what the doctors specifically thought she had to do. She just chose one of the options that they gave her. She's only 13, but it is her life. Oh, I pray that God blesses your little girl and keeps her safe and healthy.

Thank you again for your input.

Love and blessings,
Cindy in Salem, OR

PS if we didn't go to NIH and try a clinical, OHSU was not going to put David on Avastin. They were going to use carboplatin and etoposide. I don't know what they would treat him with now. I called them when it looked like David was going to come off the clinical and go back to OHSU and they took my message and said they'd call me back, but they never did. That's one of the issues I have with OHSU. They do not get back to you like they say they will. When I call NIH, the doctor HIMSELF answers the phone. I don't get routed thru nurses etc. I can't say enough good things about NIH.....

I_Promise

cindysuetoyou said:

I know what you mean...
Hi, Momsworld.

I'm not at all offended by your comment on preferring Avastin to a clinical. I always value input and I know that you know where I am coming from. I also know what you mean about the clinical being a last resort. We were so torn about what direction to go after David had a recurrence after 2 years and 5 months of clear MRIs on Temodar. I still struggle with anxiety about whether or not it was the right decision to go for a clinical trial.

First off, David is 28 and he is his own man. The decision is his, and his alone. I do have influence and he values my opinion, but I am very, very careful not to try to sway him in one direction or the other. I can't take on the responsibility of influencing him because I don't know what's best either. He made the final decision to do a clinical and I had already determined in my heart that whatever he decided, that would be where I threw 100% of my support.

From the day that David was diagnosed, he said that he wanted to try cutting-edge treatments and techniques. We didn't like the results they were telling us we'd get with standard chemo (3 to 5 years) so we had planned on doing clinicals before David even had a recurrence. We initially stayed with OHSU partly because they had a clinical in progress that looked promising. That was the blood brain barrier disruption clinical that our insurance denied. Now that some time has passed, we've heard some less than favorable reports about that program. I guess it all depends on who you talk to. The dr in charge of it believes it gives a longer outcome. NIH doesn't agree. That's one of the things that frustrates me....such different opinions from the drs on the best treatments. I guess it's just because even they don't know.

Anyway, we didn't want to wait until David was really sick and in a bad way before we tried clinical trials. We wanted to do them while he was still on top of his game. If they don't work, we will do Avastin. We felt like that would be our last resort. I don't know if I still feel like that about Avastin. I don't know what I feel! It's all so scary and it's such a huge decision.

Our original NO at OHSU and the drs at NIH both agreed on one thing......doing a clinical or doing standard chemo are both good options. Neither place tried to sway our opinion either way. I am grateful for that.

I had read about your struggle about whether or not your daughter should stop taking that chemo mix. I can imagine how hard that was for you. I'm glad that you are at peace about it. And for what it's worth, I think that was the right choice. NIH talked to us about not keeping someone on such toxic drugs when there wasn't a tumor for it to be attacking. And I think that it's very important to consider your daughter's wishes. She wasn't wanting to go against what the doctors specifically thought she had to do. She just chose one of the options that they gave her. She's only 13, but it is her life. Oh, I pray that God blesses your little girl and keeps her safe and healthy.

Thank you again for your input.

Love and blessings,
Cindy in Salem, OR

PS if we didn't go to NIH and try a clinical, OHSU was not going to put David on Avastin. They were going to use carboplatin and etoposide. I don't know what they would treat him with now. I called them when it looked like David was going to come off the clinical and go back to OHSU and they took my message and said they'd call me back, but they never did. That's one of the issues I have with OHSU. They do not get back to you like they say they will. When I call NIH, the doctor HIMSELF answers the phone. I don't get routed thru nurses etc. I can't say enough good things about NIH.....

Dear Cindy
I have been following your posts about your son. I am very hopeful he will pull through. Love,

Julia