Well It's been a hell of a ride and the ride is not over, I can promise you that. First I need to bring you all up to speed. I am the longest living survivor in the world that was in the first phase of the Avastin trial for Stage IV Lung Cancer. Given 3 months by four very good oncologists, one of them suggested that I try to get into a new trial that was closing within 60 days. What was there to think about- in I went. Well I am now on my 6th year and was going strong until about two months ago, when I started having a problem with my breathing. I had gone thru my 86th or 87th treatment with Avastin, Taxatere, and Cisplantin and I had to finally give up Cisplantin after it was determined that was the cause of my breathing problem. Just to clear up any thought's you may have the original protocol called for me to have Taxol, Carboplantin, and Avastin which after 4 years made me cancer free. My tumors have have grown for the first time in over 5 years and I will be seeing my oncologist on Monday 1/5/09. Has anyone had any feedback on a trial that was or is still being given at MD Anderson called Phase 1 trial of Bevacizumab (aka Avastin) and Temsirolimus (aka Torisel) in patients with advanced Lung Cancer??. I have been very involved with speaking engagements and will continue to bring hope to people with this dreadful disease. I also believe that this was meant to be and I hope to go to the next level, whatever that may be, so please dont feel sorry for me, as maybe were on to something. I will keep you all posted.
G-D Bless all of you and we should all have a Happy, Healthy, and Peaceful New Year
Skip
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Longest Living Survivor on Avastin for Lung Cancer in Trouble???
- By SKIP1
- Posted January 2, 2009 at 7:18 pm · 29 replies
- In Survivor stories
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Explore topics in this discussion:
Cancer Taxol Diverticulitis Surgery Avastin Taxotere Pain Heart attack Tarceva Carboplatin Lung cancer
29 replies
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- Newest first
- By cosmogal_7
- Posted January 3, 2009 at 8:13 am
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I am so sorry for your news. I hope you haven't given up. Your an inspiration to everyone here. My thoughts and prayers to you.
Paula
- By elkspringer
- Posted January 3, 2009 at 8:28 am
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Oh Skip,
My mom was diagnosed with Stage IV, and they have given her 9 months to a year. You have just given me hope. She would be a stage 2, had it not been for a tiny spot on her brain. May god less you, and know that we are here for you. XOXO
- By windrider
- Posted January 3, 2009 at 8:55 am
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You continue to be an inspiring example of what can be...fight on.
Peggy
- By SKIP1
- Posted January 3, 2009 at 9:24 am
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Giving up is not in my vocabulary. As I said in my post, This was meant to be so I can go to the next level. I will keep you all posted after Monday. Thanks for your prayers
Skip
- By peyz33
- Posted January 3, 2009 at 12:33 pm
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You are truly an inspiration - keep on fighting - keep on showing us and everyone else that this beast can be tamed - if not destroyed - Good for YOU!!!!!!! I hope the next trial works and that you are here for a long time to keep reminding us that there is hope.
Praying for us all
Karen
- By VickyLynn
- Posted January 3, 2009 at 2:17 pm
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Hello,
My sister had her first round of chemo on Dec 15 for small cell lung cancer. She got sick the first day and is just now feeling better but her white blood cells are low and they decided not to give her chemo Jan 5th. She didn't want to do chemo but given 7 months without treatment or a 25% change of controling the turmor she decide to do it. She is a picky eater and I think that is part of her sickness. How do you get into the trial studies. Is there anything to do to get white count up?
Thanks for anything help
- By dawn2441
- Posted January 3, 2009 at 2:23 pm
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vickylynn you have to try other treatment before you can go clincal and that is if the insurance companies will approve it
- By malisu1255
- Posted January 3, 2009 at 2:51 pm
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There is a shot your doctor can give you to get you white count up. I was given a needle to take home and my husband gave it to me 24 hours after every cycle of chemo. I understand it is very expensive and my insurance company had to approve it before they would give it to me.
- By SKIP1
- Posted January 3, 2009 at 4:17 pm
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As far as the white count is concerned there are medications available, when my counts were down and sometimes they were as low as close to 0 I just stayed in my house until they went up. But it was so long ago I really dont remember. As for the trials go to clinicaltrials.gov and perhaps this will help
- By arlene
- Posted January 3, 2009 at 9:10 pm
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skip- do you mind clarifying? do you mean that you have had that many 87? treatments with cisplatin? after about 8 cisplatin, taxotere and avastins, my husbands oncologist worried about kidney damage and said enough was enough. have you had any problems like neuropathies with so much cisplatin or is it a reduced dose? thanks for your help- just trying to figure it out. have you tried tarceva yet? it has held my husband for about 18 months and is just now weakening. other drugs suggested for next treatments have been gemzar, alimta and erbitux. we haven't heard about the new drug at md anderson. for a phase 1 trial, they are testing dosage. good luck. you are an inspiration to us all. arlene
- By emilyjane
- Posted January 3, 2009 at 11:34 pm
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Did your husband have any side effects with the tarceva? It sounds like it stabilized his cancer, is that right? Did he have only tarceva and nothing else? I am on tarceva now but only on day 11? or something.
- By Chi-Dreamer
- Posted January 4, 2009 at 9:25 am
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Vickilynn,
The name of the shot is Neulasta and is given 24 hrs after chemo. I happen to have one file from Walgreens unopen. It costs about $7,000 without insurance. So if her insurance doesn't cover it she is welcome to have it. It was an extra I was given and no longer take.
Neulasta does have some side effects but thankfully for me it only lasted a few days. But it does help the cell count.
Linda
- By arlene
- Posted January 4, 2009 at 12:21 pm
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hi emilyjane- the intial treatment with cisplatin, taxotere, tarceva and avastin took away all but 3 of his many tumors. when he was not allowed to take anymore cisplatin, he had radiation and then started back on daily tarceva and avastin every 3 weeks. it held his 3 tumors for about 17 months at which time some of the ones that had been "dead" or PET negative started to light up again. he remains on daily tarceva and avastin every 3 weeks because we have not decided where to tread next!!! his only debilitating side effect with the tarceva is constant bowel upsets. he really has to be careful with what he eats. his eyelashes are growing so long that i have to cut them ( a side effect) and we were able to control the face rash with minicycline sp? antibiotic. good luck to you. there are folks on this site who have been disease free for years on tarceva. i hope it works for you. arlene
- By erinroro
- Posted January 4, 2009 at 12:26 pm
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Skip,
You keep at it! You are an inspiration to us all - you are leading the way for so many! Keep us posted on what the doctor says tomorrow. I will send postive thoughts your way!!
Erin
- By SKIP1
- Posted January 4, 2009 at 2:46 pm
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Hi Arlene, I had a feeling that my post would be confusing so let me try and clarify. I was in the 1st phase of the Avastin trial with 166 other patients. My protocol called for me to get 8 treatments of Taxol, Carbo, and Avastin, every 3 weeks. After that period of time I was doing so well it was continued for another 26 or 27weeks. Remember this was phase one and avastin was not at that time approved from the FDA. I continued on this cycle until I was declared cancer free.The Mfgr was learning so much from my results that I decided to stay on this drug voluntarily and had another 20 treatments of just Avastin. I did have a couple of life threating issues and one of them was my kidneys. I had a extremley high level of protein in my urine plus I had developed diverticulitis which required me to have surgery and due to the seriousness of this disease I had to give up my cancer treatments and get thru my surgery. In intensive care for 10 days i remained in the hospital for a total of 60 days as I also had a heart attack in the hospital. One very important thing. My oncologist came by to see me every day. Anyway this really gets confusing, after my stay in the hospital I went home and started re-hab which lasted a couple of months, and then had surgery again to put an end to my diverticulitus. It took almost a year without knowing where was my stage 1V lung cancer. So i had a catscan and found out that I was the same as 1 year before and no changes. Then 3 weeks later I developed a lump in my neck and a scan showed that my lung cancer had spread to my neck, and there was something brewing again in my lungs. After 15 rounds of Radiation my neck tumor was gone and I could now concentrate on my lungs. Back I went on chemo but this time it was Taxatere, Cisplatin, and Avastin. This went on for about 15 treatments which was once a week and I developed a new problem being out of breath. Cisplantin was dropped and I continued on Taxatere and Avastin. My tumors were almost all gone again and my latest scan showed that they were growing. Thats where I am right now. I hope i did'nt bore you all. But as I said many, many times before, Attitute is 70-80% of survival, and I'm just going to go to the next level. Keep you posted
- By jazzbo
- Posted January 4, 2009 at 10:57 pm
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Hi Skip, Glad to hear your still at it buddy. You have been through it all. And you still smell like a rose to us. Keep up the attitude, it'll see ,you through. My best always and my prayers, John
- By Shar815
- Posted January 5, 2009 at 7:20 am
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Hi Skip, Sorry to hear you have a setback, but as your post says you will never quit fighting! You are an inspiration to the rest of us. Hang in there and know my thoughts and prayers are with you. God Bless, Sharon
- By J-me
- Posted January 5, 2009 at 8:07 am
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Hey Skip!! Great to hear from and I am sure through your positive outlook and attitude all will be well!!!
Keep the faith!
God Bless!
J-me
- By Cali
- Posted January 5, 2009 at 4:54 pm
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Hi emilyjane - I am currently taking Tarceva and have been for 2 full months now. After my first 30 days I was tested and it had already worked wonders. I was diagnosed with NSCLC. I do suffer from the side affects which usually kick in around week 3 of taking it. My skin is really dry and the rash is random coming and going and has also supressed my appetite. Eucerin can help with the dry skin. Good luck on the Tarceva I hope it works for you!
- By SKIP1
- Posted January 5, 2009 at 7:14 pm
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Hey J-me,
I do hope you are the same great young lady that did all the TV and radio interviews with us in Chicago. If so I hope every thing with you is teriffic. Saw my oncologist today and he is putting me on a new protocol of Avastin (I wouln't take anything with-out Avastin, not after this 6 year love affair) and Alimta. There are several options open but as my Dr said this combo he feels very comfortable with, and with my history of being the miracle of Avastin I am open to anything. It won't matter because Im going to beat this monster again even if they gave me manure with Avastin. 3 times and the beast is out. Keep you posted.
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