I find it hard to believe that I have only received 3 responses...

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I posted this post on November 13, 2008 at 11:35 am · I have only received 3 replies
I find it hard to believe that no one else has any experience with this treatment. Please if you have taken this medicine or know someone who has I would like information on how it worked or did not work for you....
In Non-small cell lung cancer - Stage IV

My doctors have discovered 5 brain Met's all of which have been treated with gamma-knife all are stable accept one which is growing. So as I stated there is one brain met that is not responding to the radiation (little booger) it has grown from 7mm in June of this year to 24mm . The neurologist want to remove it surgically, my oncologist is against this as he feels since that tumor has been treated with high doses of radiation and also because it is near my sight area, that surgery would be dangerous. He is worried that it may bleed and that it may not heal after being surgically removed. He wants to put me on Temodor and Avastin. I have done some research and worry a little about the fact that avastin can cause a fatal bleed in the brain, but I also worry that there are no studies about surgery and avastin it is likely that they will not be able to operate if the avastin doesn't’t work. There do not seem to be many studies on how long they must wait after the avastin is stopped, before it is safe to do surgery…..
I would like to know your true experiences with avastin…. Please I want the good, the bad, and the ugly… Also does anyone have any experience with surgery after radiation. It is my understanding that it doesn't’t happen a lot…

I hope to meet some of you as we travel this journey together.
Michelle
We are not human beings on a spiritual journey, we are spiritual beings on a human journey……….

11 replies

I have ex-sclc since June08. Was on avastin and taxoteere for my second round and was taken off avastin after two infusions. Had problem with noise bleeding all the time. However I know a lot of people who are taking it with not a problem. Hope this helps.
Skip

I have stage 4 NSCLC and received avastin along with carbo/taxol and then avastin alone for 5 months. I had some trouble with minor nose bleeds. Avastin was a breeze compared to chemo. I know it can cause bleeding, strokes and other bad side effects, including high blood pressure. I already have controlled high blood pressure and avastin did not affect it. I don't know if that helps but that is my experience.

Sue M

I am stage 4 NSCLC Dx feb 06. I was on avastin throughout all my chemo's > Stopped all treatment in Dec 07. I needed a break after 21 months of continuous treatment. All treatments gave me time till they stopped working. I am now on 5th line, Gemzar. started Oct 20. 2 cycles. Then scans. Avastin over a long period of time can cause many problems with the heart and bleeding. Hope this helps. Marie

Hi,

My mom is IIIB, inoperable, age 56, dx 21 Feb 2008. Started with CISPLATIN, NAVELBINE and AVASTIN. Did 6 cycles, no radiation and is in remission. Her onc started immediately second line treatment with ALIMTA and AVASTIN. Had 10 sessions so far (one every two weeks). The only problem she had with AVASTIN was high blood pressure which she regulated by adding NORVASC to her mix of bp pills and she had no problems after that. No nose bleeds, in general no bleeding at all.

Good luck to you!
Maria

I was on Avastin in combination with 3 other drugs. It gave me nose bleeds, only heavy a few times but constant with each time I blew my nose, which was frequently. I got high blood pressure that I didn't have before but it was controlled with a med and came down when I finished the Avastin. I was able to take the entire 14 week regimen and it was far from the worse drug in the lineup. How it may affect someone with a brain met and possibly facing surgery is something I simply do not know. Do you have time for a second opinion? Jane

my 1st onc used avastin for my 2nd chemo infusion. I switched to a lung cancer specialist onc at Cedars-Sanai for remaining. chemo. He immediately dumped the avastin; he thought it dangerous because I had brain surgery a few months before. This is apparantly controversial as not everyone agrees that it is. A radiation onc and a neurosurgeon at Cedars did not agree though they highly respect the onc.

Sorry I missed your first post. I never had radiation or surgery, so I can't answer from that angle. However, I did have a collapsed lung, which resulted in surgery, in the midst of my chemo, which also included Avastin. It was almost four weeks after my prior treatment that they did the surgery, and they made me wait two weeks before I could have another Avastin treatment after surgery (minimally invasive). The doctors waivered between thinking I could return to chemo between one to three weeks, so my oncologist settled in the middle. I know my situation is completely different, so I'm not sure how much help that is.

Take good care.

--Stephanie

hello there,
have they tryed gemzar/cisplation together that it what I have for stage 2 lung cancer Non Small cell
And the was done for 8 weeks i think it was. I am going on my 4 yrs frreeee (this is not a type O).LOL
good luck with your chemo and i hope it helps you
Prayers are with you
Leslie
I WOULD LIKE TO WISH
ALL A HAPPY THANKSGIVING
I give thanks for Having my life

I had brain surgery for a solitary brain met after it was treated with radiation.

The type of radiation I had was Linac; this is somewhat similar to cyberknife/gammaknife. It was a "one-shot" dose. That was in Jan 08. Then in Aug, they told me at MD Anderson that it appeared to be growing. It was 2cm x 2cm so it was not small and it was in a very unforgiving portion of my brain...
I found a specialist who is SUPER, world renowned and decided not to have the surgery at MD Anderson but to go to this specialist in Seattle Washington. People go to him from all over the world...his name is Dr. Laligam Sekhar. He practices at Harborview Medical Center which is owned partly by the Univ. of Washington and the community of Seattle.

It was predicted that I may not walk again w/o therapy, may be partially paralyzed on my left side, may have speech impediments...I am healthy as a horse and never had one single problem after surgery. My surgery was over 6 weeks ago and for the last 2 weeks, I have been power-walking 2-3 miles per day and feel wonderful. I was out of the hospital after they sawed the back of my head off in 2 1/2 days, not the predicted 5-10...

The moral of MY story?
Do not listen to just an oncologist. He is NOT a neurosurgeon. (When you have a toothache do you go to a chiropractor??)

Get a 2nd opinion from someone who is credible. I highly recommend Dr. Sekhar. The entire staff at Harborview are nothing short of miracle workers - and they are so very humane, gentle, and kind in addition to being top-notch professionals.

And for your anesthesia, ask for Dr. Arthur Lam. He too is a legend in his field as well...I will NEVER use anybody but him again. I live in Florida but I would fly to Seattle for the most minor surgery of any kind only to use Dr. Lam for my anesthesia.

This group is highly accessible. You would start with Dr. Sekhars office. They will want copies of your scans and records before setting an appointment with you so they know what they are dealing with.
His number is : 206-744-9300

Here's some info on him:
http://depts.washington.edu/neurosur/faculty/sekhar.html

Let me know if I can help in any way. I will pray for your guidance and peace.
God bless you!
Ellen

I have stage iv NSCLC. I could not have surgery since the cancer had spread to the bones from the right upper lung. I was on avastin along with chemo for six treatments and then went on avastin as a maintenance drug alone. I have been on avastin for maintenance since May. I did develope headaches and high blood pressure, which is now being controlled with medication. I really cannot complain about any serious side effects certainly nothing that would stop me from taking it. So far it has worked for me and I am so pleased.
Janet

I have stage 4 NSCLC, diagnosed in Mar05. I had palliative radiation and chemo in the Spring and Summer 05. In Dec05, after metastasis to my spine I was put on Tarceva 150mg. Very gradually all my various tumors shrank in size. In Dec08 a blip appeared in my left lower lobe which gradually over the following 9 months grow into an indisputable tumor about 3 mm at it largest point. I was put on Avastain as conjunctive therapy to the Tarceva. I developed rashes and pimples. I also developed severe diarrhea. I received Avastain by infusion twice. The new tumor continued to grow. We stopped the Avastain and thirty days after that I started on a clinical trial (Phase 1) of SYNDAX. I am twelve days into the trial.

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