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Old 07-06-2006, 09:48 PM   #1
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Angry No avastin for mom

We saw my mom's oncologist the other day he said he will not give her avastin. He says the studies done on it were as a first line drug and it would be her 5th line agent and he doesn't know what it could do also threw in the fact that the elderly have an increased chance of a bleed such as a stroke or heart attack from avastin. When I told him of all the people I have read about on message boards that are on it as a line 4 or 5 agent and even about an elderly woman that is on it as a line 5 agent he said " well I did not say it won't work as it might. However there is no proof and I can not use your mom as a guinea pig" When I did not give in he said " I had to take an oath to become a doctor and the first line of that oath is " Do No Harm" so how could I give that to your mom knowing it is not advised in her case and could cause her harm? I would be violating my oath."

I take that as it is not in the normal protocol and stepping outside of protocol opens me up to law suites and I am not willing to take the risk. Stick with protocol and if a case goes to court you are pretty safe.

I have to wonder doesn't he ever stop to think if a patient and family are willing to take the risk and that patient is terminal meaning they will die from the cancer shouldn't the risk be their choice not his?

We were told from day one that he could not cure her cancer only try to keep her comfortable and buy her time .Well how does he expect that to ever change if people do not take risks? Doctors that will not take risks may not get sued but they also do not save lives while some of the mavrick doctors out there that will take risks have probably seen a few court rooms but they have also probably beaten this disease as I have read a few such stories written by survivors of > 10 yrs that had been told as we all have we have no cure, you have 6-12 months then somehow found the mavricks out there and lived because of it.

There are clinical trials on various new drugs but we have not found any that my mom would qualify for as they tend to have limits as to how much prior treatment a person has had and most want tumor samples and she only had a cytology from the pleural fluid no actual piece of the tumor.

It was amost frustrating day. She does get a CT in a couple weeks so we will soon know if she continies on with this chemo or is offered no more treatment by conventional medicine. I am trying to look at this as she does with the " what will be will be attitude" but it is not easy for me.

Next week she gets no chemo sees no doctors so I actuually get to stay home for the week. I will not miss the drive as with summer here traffic is even worse then ever. I need the rest so it will be nice.

My thoughts and prayers go out to all of you and Stan and Bud get extra prayers as I am conerned about the headaches. Good night and God bless you all. JanMarie

Last edited by Janmarie2; 07-06-2006 at 09:52 PM.

 
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Old 07-07-2006, 02:50 AM   #2
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rwatson908 HB User
Re: No avastin for mom

HI JanMarie,
I read your post and am sorry to hear the news but, Doctors are permitted to use and drug or medical devices for "off label use" if they deem the benifits would suit the patient. Your Mother as for Becky aren't curable and if Becky decides she wants to try an option for comfort treatment permission can be optained and the treatment offered without fear for law suits to the Doctor.
God Bless and take care. Ron

 
Old 07-07-2006, 09:22 AM   #3
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pjoi4 HB User
Re: No avastin for mom

Hi JanMarie,

Sorry to hear about your mom's situation. I gain new hope for my husband from your mom's experiences with the different drugs being used. My husband was using Avastin with the Carbo/Taxol for his first line of chemo. His onc said that since he was only 43 years old and never smoked that he was a perfect candidate to use Avastin. We were excited because the Avastin was supposed to choke off the cancer growing cells. Our onc did caution us about the side effects. After the 3rd round of chemo my husband started to cough up what looked like a pinkish blood like substance in his phelm. The doctor's immediately stopped the Avastin because they did not want to take any chances of my husband bleeding to death or having a stroke.

Lot of hugs and prayers are on the way for you and mom.

Take Care
Renea
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Renea

 
Old 07-07-2006, 07:02 PM   #4
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Re: No avastin for mom

JanMarie, I am of the mind that if there is even a slight chance of a drug helping, then go for it. If your Mom feels the same way then it should be allowed. We never know how things will go if we don't try. I pray for you and your Mom as I can only imagine the worry, pain and heartache you are experincing. God bless each of you who are fighting so bravely against this monster. Love from Ky., Pat

 
Old 07-08-2006, 10:00 AM   #5
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Re: No avastin for mom

Hi JanMarie, I am sorry to hear your doctor prefers to take a "safe and proven" path with your mom. My Bud is of the opinion, I am dying anyway, let me try it and see if it helps. Right now he's sleeping. Feeling chest pain again, but he said it's different -- not the pleural pain, but mainly a throbbing in his left lung. Lets hope it's not something that could rupture on us. He's off next week and looking forward to no needles. He's still free of blood in his phlegm which to me is very encouraging. He bought a Coca-Cola cooler for his sister and was going to give it to her for Christmas. He has decided to give it to her next week, "just in case". He's talking that he might not be here at Christmas. Does ne know something I don't? I was actually feeling pretty optimistic. Last year though, when he went into remission in Sept and came out in October I never dreamed he could go down-hill so rapidly but he did and as you all remember, I came very close to losing him by Christmas. So, I guess, I need to keep one foot on the ground. Last year we allowed our hopes to soar and when the news came about the relapse, I felt like a ton of boulders came crashing down on me. This time I am not allowing myself to soar to such heights, and my newfound ability to live in the "now" is serving me well.

As always, I keep everyone here in my prayers, and outside of this board, I am finding myself becoming a beacon for others that have a loved one diagnosed with cancer. I seem to draw a lot of that, and if God can use me to help and support someone else who is going through this living hell like ours, then I am glad to serve in that capacity. Sometimes, the whole thing still overwhelms me, but I know I have to remain strong and be a rock. Nothing different going on with my son, still very little contact, but we are both hurting still and the time has not come for us to talk. God will bring this about in the right time. Tomorrow we are having all of the kids over for a cookout, he and his girlfriend have been invited, but I seriously doubt they will come or even reply to my message. So be it. I will share in the Bud's joy of having his family over and I know they care for me too, so they will be good to have around.

My new little border collie is fun Janmarie. I thought about you and your doggies as I watched a flyball competition a week ago on TV and an agility competition the other day. Bandit can do "paw", and is just about housebroken. Still an accident here and there but much better. He and Bugs seem to be on better terms now as I have tried to teach Bandit some boudaries. He is very eager to learn and I like this. Teaching him how to fetch. JanMarie, please let me know how you went about training your dogs in flyball. I bought a couple of training manuals but it's mostly for leash training, heel, stay, etc etc...

Love, peace, healing and prayers from Indiana

Jan

 
Old 07-09-2006, 08:43 AM   #6
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helter HB User
Re: No avastin for mom

My dad died from massive bleeding which came out of his mouth from taking Tarceva.
With Avastin the risk increases a lot more.

It's not a memory I like living with.

Last edited by helter; 07-09-2006 at 08:45 AM.

 
Old 07-10-2006, 03:52 PM   #7
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Re: No avastin for mom

Hi JanMarie-
Sorry for the delay in my postings....Stan has been miserable since his chemo started again a week ago and we have also had company for the last week. My neice is staying with me for 2 weeks helping keep my youngest one busy.
Anyway, sorry to hear no avastin for your mom. So frustrating to hear something in hopes that it could help her or it could kill her...you just don't know. Amazing what works for one person, does not work for the other. I hear of miracles of someone using a herb and it works and then the next person uses the same herb and dies. You just never know...
My husband I agree with the taking of risks as you said....they told her and my husband there is no cure...just making them comfortable and trying to buy a little more time. (in hopes a miracle might happen along the way too)
I hope she is being able to enjoy her free week from chemo this week. Based on what you have been writing she certainly has been enjoying life and getting around quite well. Keep us posted when she gets her CT results. Is she still pain free? I thought in the past you had mentioned she had liver pain in the past, but maybe I am confusing with someone else. (sorry if I have confused who is who) I will keep you and your mom in my thoughts and prayers. I also hope you are enjoying your free week from coming to OC! I know the drive can be a tough one, especially during the summer months!
Stan has not been doing the best lately. The chemo he is on right now is getting the best of him and knocking him down quite a bit. His cancer pains don't seem to be sudsiding either...gggrr! He is a little more short tempered lately, but can you blame him?! We are attempting to get away next Monday for a night while my mom is in town. (she will watch the boys and my neice while we are gone)
Anyway, I think I have only visited the board once in the last week or so and have missed my friends here on the board. I think of everyone often and hope things are going smoothly, but as always read something sad and it just breaks your heart.
Kim

 
Old 07-11-2006, 11:57 PM   #8
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Janmarie2 HB User
Re: No avastin for mom

Hi everyone thanks for the replies. My mom did get a CT today and hopefully she gets the results before her next doctors appointment since that is not until Aug. I figure if there is progression he will call her and that it will be it for chemo for her so I feel a bit anxious and am glad I got to escape to Ventura with my friend today. Now I have to keep busy the rest of the week and try not to worry about the CT results,as my mom would say " worring will not change them"!~

Ron, I know Doctors can use drugs "off label" but that can open them up to lawsuites. We use drugs off label quite often at work but not all doctors are willing to do so and my mom's oncologist appears to be one of those. I hope Bec is doing well and is able to enjoy the summer.I also hope that you are doing ok as I know how rough this all is and how we caretakers tend to not take such good care of ourselves.

Kim, I am so very sorry to hear that Stan is still having a difficult time. I hate the fact that the chemo can be so difficult on some people . I think about you and Stan and your boys alot.Being a grown up and having to deal with my mom's cancer and knowing how difficult that is makes me really sad that your boys have to deal with their dad's cancer while they are still kids. I think of how my nephews would suffer if that was their dad so have no trouble imagining how hard it is on your boys.

My mom has not had any liver pain and her liver function tests are normal.It is really amazing how the liver can suffer major damage and still function. I am hoping that her CEA being down means those liver mets are behaving and not progressing but I guess we will not know until we get the CT results.

Pat as always it is nice to hear from you and I always pray that you beat this disease as we need such a person here!

Helter, I know how awful it is to watch someone hemorrage to death as I have seen it happen but any of the chemo drugs have side effects that can kill. I also doubt if there were that many elderly people in the clinical trials to really prove that it is more of a risk to them as it seems most elderly people with advanced lung cancer don't get very aggressive treatments or get included in many clinical trials due to their health issues.I also feel if one is terminal that risks such as that imposed by avastin should be their choice as there is the chance it may help them and to some that chance is worth the risk. I think stopping the avastin at first sign of bleeding like they did for Renea's husband is sometimes possible as not all bleeds start out as life threatening, besides my mom has not had any active cancer in her lungs since the Tarceva so there is no tumor there to bleed unless this next scan shows some lung activilty.

Jan I am so happy that Bud is able to enjoy the summer as I remember how sick he was at Christmas time. I hope that Avastin gives him long lasting results and that it continues to work for him for a long time.

You said Bud acts like he might not be here for christmas weird as my mom has started using the phrase " WHEN I die", she use to say things like " IF I die before your dad" or IF I die before ...what ever she is talking about but If is now replaced with WHEN, so I guess she is accepting the fact that her time may be limited.It is sort of sad to see that change but we do not say what do you mean" When"? as we all know the end could be near especially if the doctor stops the chemo.

As for Bandit I bet he is cute! Is he ball crazy?To make a good flyball dog they need to be ball crazy. Use a ball as a training reward, he does something you teach him throw the ball instead of giving him a treat. The agility club has Flyball classes but my dogs never took them. I started them out by learning hurdles made of PVC pipes and setting up 4 in a row (very low hurdles for a puppy) Then I would key them up with a ball and get them to where they wanted that ball.place it on the ground a few feet after the last hurdle then take them to the first one and release them and say "get the ball"," over" (which they know means jump the hurdle) and repeat it for each hurdle then call them back over the hurdles the same way while waving a toy as a reward. once they learned that I started playing with the flyball boxes and tied it all together,classes are much easier!
Currently only one of them will play flyball as since she "owns" all the toys the other dog is submissive and quite playing with toys so as not to anger her, but he will do the flyball hurdles to get a hot dog off the top of the box and come back over them to me for a treat( his motivator is treats not toys or balls). My dogs both do agility but dogs need to be a least a year as puppies can injure joints jumping. Both are alot of fun and for a border collie type dog one needs such an outlet unless you do someting else like herding.

Well I think I had better get to bed as I want to get up early and get the one dog to the self wash dog wash so he is clean for his recheck at the vets..he got real sick real fast a week ago but is doing much better now As always you will all be in my prayers again tonight and in my thoughts quite often. Have a good day, Janmarie

Last edited by Janmarie2; 07-12-2006 at 09:47 AM.

 
Old 07-20-2006, 11:19 AM   #9
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Re: No avastin for mom

JanMarie,
Thinking of you and the others on the posting board. I have not been visiiting the board as often since my neice came to spend some time to help keep our youngest busy for a couple of weeks. (today he is 10!)
Any results on your mom's scans? Thanks for clarifying that your mom has not had any liver pains....I got confused...sorry. I try to keep everyone straight, but at times it is so overwhelming reading what everyone is experiencing.
Stan has had some tough times lately and we did happen to get away for one night for our wedding anniversary and not even sure how he pulled that one off. It was very special and we had a relaxing time. Since he is not feeling well today we spoke to our birthday boy and he said it is fine that we stay home and cook so now I am off to the grocery store.
Anyway, was thinking of everyone and wanted to touch base and send warm thoughts to everyone.....
Take care ,
Kim

 
Old 07-21-2006, 11:23 AM   #10
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Janmarie2 HB User
Re: No avastin for mom

Kim,

No we have not heard anything about my mom's CT yet so I am hoping that means she is stable. I think the doctor would have the report by now and if there had been progression he would have called and would probably have stopped her chemo but he didn't so I am hoping I am not wrong. Outside of the fatigue and the Taxotere making her eyes watery she is doing ok.

I am so glad that you and Stan got to enjoy your 20th Wedding Anniversary. Congratulations on that! And Happy Birthday to your son!


These two occassions remind me of a conversation I heard in the chemo room.One lady has telling the other that the chemo will not save her life as her cancer is too advanced and when she tells friends this they ask" Then why even bother with the chemo and its side effects?" Her reply was because I am doing chemo I have had two more Thanksgivings, Christmas's, Easters, many more birthday celebrations and even a birth of a grandchild and that has given her family that much more to remember. It made me cry and I think of it when I see everyone here reach yet another important day for their family.

One of my dogs has to have bladder surgey next month, he either has two stones attached to his bladder wall or bladder cancer. My vet says he thinks it is stones thou he may be saying that to prevent me undo worry until we know( as he does know about my mom as I asked him how to help with her dogs stress as the one seems to know she is sick and gets stressed out) Bladder cancer in dogs has a grim prognosis.

I do hope everyone is finding a way to stay cool as I know it is hot in many places right now. I continue to say a prayer for everyone here. JanMarie

 
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