Frustrated

[JanMarie]

Right now I am feeling somewhat frustrated and just need to vent.

Took my mom to see her oncologist today and I brought up Avastin (again). He is dead set against trying it. In my opinion he only colors within the lines!

He says the studies done on it were with first line treatment not 4th or 5th line treatment and that combined with the fact there is increased risk of bleeding in the elderly he can not give it to my mom. I mentioned the people I have read about on various message boards that are getting it later in treatment and seeing good results but his reply was " well I am not saying it will not work as it might.I am saying I will not use your mom as a guinea pig".

He says that the first thing in the oath he took to become a doctor is " Do No Harm" so if he gave my mom avastin not knowing what the effects are when given later in treatment and knowing the increased risk of bleeding in her age group and she did indeed have a stroke or heart attack he would in his mind be violating the oath he took.There is no way he will see it any other way. I think the fear of lawsuites maybe a huge factor as if you stick to protocol you are somewhat protected,step outside protocol and you open yourself up to lawsuites.

I see it as he told her from day one that he can not offer her a cure he can only try to buy her time and he is now telling her her current chemo will be her last so what would she really have to lose? Maybe a few months if it did indeed cause a stroke or heart attack that killed her? But what about the possible time it could buy her if it worked? He says stage IV is uncurable well how will that ever change if doctors are not willing to take some risks?

I am not saying I want my mom to be a guinea pig but if SHE sees her time as running out and is willing to take the risks of trying something that may buy her more time shouldn't that be her choice and not a doctor that has trouble doing something that isn't in a published study?

She belongs to an HMO and can not afford treatment outside of it and he seems to feel the others in the HMO would agree with him so we do not have the option of going else where. I feel so darn frustrated as I would give anything to buy her enough time for HKI 272 to be on the market for her to try since she did respond to Tarceva so well. ( she has had too many chemo's to be in the clinical trials for it). She got her chemo after we saw the doctor and after I got her settled in at the chemo room I just wanted to go bang my head on a wall!

On the bright side of the day her CEA is still coming down. So far anytime hers has gone up she has indeed had progression and in Feb. It skyrocketed to over 1000, then last month it was in the 700's and now is in the 500's thus we are all hoping that it is indicating that she is at least stable.We will take stable! She does get a CT in a few weeks so we shall see.

Anyway I guess I am done venting for now as I need to get to bed as I have my 120 mile drive through Los Angeles to get home in the morning. Thanks for the spot to come vent as it hurts less then head banging! Jan

[missyk]

You're welcome to bang your head against this "wall" any time you'd like.

I know your frustration at what the doctor's think are best compared to your thought on it. Sometimes they are right, sometimes they're not. It's the nature of the disease and of being human beings dealing with it. The effects are different for every single person doing whatever treatment there is out there.

From the sounds of it (Just my opinion) the Oncologist seems to think that with your Mom's history, it wouldn't be a good idea. Have you asked another oncologist? Or two? Second opinions (and thirds) never hurt and can sometimes give some perspective when it seems so far away. Sometimes they'll do it right over the phone.

My best to you and your Mom...much love and many prayers...

[Ann]

I can only imagine how frustrated you must be at this point. Normally, I would definitely say you should get a second opinion. But, if your mom is covered by an HMO, all of the participating doctors might very well agree with each other in order to keep things simple. If I were you, I would go ahead and try for a second opinion. What harm could it do? Apparently, it sounds as if your current oncologist has completely closed his mind for some treatment options. Sometimes, it's very hard to find proactive oncologists that don't give up easily. Although Dennis lost his battle against cancer, we were so fortunate to have a doctor that never stopped trying to find something that would help extend his life. I hope you can find someone that will help your mom.

[Don Wood]

Glad you came and vented. You needed that. I don't understand her onc, except that he is stubborn. Lucie is on Avastin, she is 69, this is her 5th chemo and she seems to be doing well. I would definitely get a second opinion, but also respect what your mom wants to do. Don

[richinsdakota]

Yes; sounds like a 2nd opinion is in order here, to clear up the issue if nothing else. Someone else may offer other options..? Id check it out with cancer specialists somewhere.

Good luck and hang in there...Rich B.

[RandyW]

there are 183 Current studies involving Avastin. Click here to be redirected to clinical trials Link;

http://www.clinicaltrials.gov/ct/search?term=avastin

You may find somethhing in here to show your moms Oncologist. This disease is considered uncurable right now by many but they are looking it as becoming looked at as a chronic disease similiar to treating Diabetes. You do not beat it you live with it for now. I personally prefer the curable thoughts not the live with it theory. Also on a personal note after doing so much research on clinical trials prefer to think of people who participate in such programs as PIONEERS not Guineau Pigs. HTey are pioneers for this disease.sending prayers for You and Mom and family

[john]

Avastin (Bevacizumab) can cause some very series bleeding problems. Patients with squamous cell can not use avastin. Bleed events were fatal in 1.9% (avastin-chemo) compared to 0.7% (chemo-only) of patients in one clinical trial.

http://www.medicalnewstoday.com/medical ... wsid=41539

Your mom seemed to do well on Tarceva. There are trials for HKI-272.

HKI-272 is a drug that is supposed to work once Tarceva stops working

I think the side effects are less than chemo.

There are other clinical trials to research also and ask about if your mother wants a clinical trial

I vote for a 2nd opinion

[Don M]

Jan:

Avastin is known to be risky for beeding.

Anyway, I think you should get a second opinion too.

Also, your mother may be a candidate for cyberknife surgery to kill the mets in her liver. The primary tumor is gone. I think that makes it easier to control the mets. Here is a link where you can ask radiation oncologists about cyberknife. They answer within 24 hours.

http://www.cyberknifesupport.org/forum/default.aspx?c=4

Insurance could be an issue. I don't know if HMOs address using cyberknife surgery on soft tissue. Some centers may cover the cost even if the insurance does not. The center I visited at Swedish Cancer Institute in Seattle, said that if my insurance balked at paying for cyberknife, they would probably write it off.

Don M

[JanMarie]

Thanks for the replies.It helped just to vent to others that are walking or have walked in these shoes.

I have to stress that my mom has final say in any of her treatment and we all accept that (thou my dad has a hard time with that) as she is the one that would have to deal with anyside effects or discomforts.It is her life and it is her death and I am ok with that as that is how it should be. I view death as much a part of life as birth.

God knows due to my job I have seen plenty of death these past 25 yrs at the hospital.I am not afraid of death as I feel it is only the end of our human experience but I also know that it brings with it alot of pain and a huge void in the lives of loved ones.

That being said my mom is of the old school where one does not question doctors and when asked if she would like a second opinion she says "well my doctor must know what he is talking about so I will do what he says"...ugh!!

When I was a teenager the dentist we went to called about 4 months after I had seen him and said he was going over old Xrays and discovered a cavity in one of my teeth and said I needed to come in so he could fill it. My mom just accepted that but I refused to go back to him and finally got her to agree to let me see a different dentist and that "cavity" was never found, nor has it ever been. My mom just puts blind faith in such people and she will until the day she dies.

As for cyberknife..here is a story for you. Over a year ago when the one liver met went to multiple I asked her oncologist about cyberknife. He and I went around and around as he kept saying they can only do it on brains despite my telling him I had talked to a doctor at Stanford that told me they were doing it on livers. When he realized I was not going to let it go a good 15-20 minutes into it he finally admitted his speciality is chemo and he knows very little about cyberknife.He could have saved himself face with me by admitting that when I first brought it up! Yet he still said I was wrong about using it on the liver as we walked out the door!

I did get him to refer us to Kaisers radiation oncologist and after many weeks we got an appointment. One of my questions was how many mets are we talking about? Stanford said 3 maybe 4 they could do but no more. Well this doctor walks in the room and reads us the last CT report that we already had a copy of. When I asked How many mets she said "it says multiple but I have not seen the scan myself". I said can't you pull it up on the computer and was told no. ( we have been doing it where I work for several years and even the dcotors in town can do so in their offices!)

Next she told me that she met with several other specialist and they all felt that cyberknife did nothing they could not do with RFA and they did not feel RFA would do any good ..yet non had even seen the CT!

A few weeks later my mom had her next CT . I asked if we could get a copy and was told no so when the tech came to get my mom I asked her and she said " sure no problem" and we got a copy that we sent to Stanford. Turns out there are too many small mets to do cyberknife,but I still will always appreciate the doctor at Stanford as he acted like my mom's life was important while too many others act like "Oh well she is an old lady with terminal lung cancer..why do anything as it will kill her in the end".

If nothing else this experience has taught me what it is like to be on the patient/family side of the bed rail and I have found myself being an advocate for some patients that have non. It has made me better at what I do as I have a ton of empathy for those I come into contact with.

Thanks again for all the input as it does help alot . Please know that you are all in my prayers and what I would like more then anything else is to see someone with advanced lung cancer win the battle! Maybe someone here can do it! Godbless you all. Jan

[kamataca]

Oh, the frustrations! I always say that if we were just fighting the cancer, it would be much easier. It's fighting the insurance companies and the doctors that can be the hard part.

Keep up the good fight! Your mom is lucky tto have you in her corner.

Kelly