Longest Living Survivor on Avastin for Lung Cancer in Trouble???

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

By JC2009
Posted September 26, 2009 at 12:23 pm
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Hi Skip
Your positive attitude has really inspired me. My mom was diagonised with stage IV lung cancer that has spreaded to the brain and possible liver in July 2009. She completed 10 days of full brain radiation. Now she is on her 3rd cycle of chemo. Her 1st cycle was Carboplatin and Taxol. We noticed swelling in her feet and legs which became hard for her to walk. Her balance is a little off. The main problem was alot of body pain from the booster shot she received the next day. Then we noticed some tingling and cramping in fingers and toes. Also,She received Carboplatin only on her 2nd cycle because her doctor believed the side affects was too much from the taxol. We had a follow up appt last week and the results were the lung and brain mask is shrinking. Thank God. Her 3rd cycle is Carboplatin, Gemzar, and Avastin. Her doctor wanted to remove her from the Taxol because of the side affects and he believes that at age 51 her body can handle the Avastin. I am scared but trusting in the Lord that she will be fine. Have you ever received the Gemzar? Any advice or information you can give me will be greatly appreciated. I will pray for you and your family.

By beckylynn
Posted March 1, 2009 at 11:10 am
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Hi Skip how exciting you are beating cancer. I'll pray you can get the cancer back into remission.

I have a question for you. Are you doing any PH protocol in conjunction with the conventional therapy?
I read this book PH Miracle Living by Dr. Robert Young about how the body is either Acidic or Akaline and if you can get your body in a PH Akaline state cancer cannot exist. It's not easy to become and stay PH. Also on your breathing problem. Do you nebulize?

Dr Young recommends "nebulizing Gluthothine & NAC to help with the brain and lungs. I would also recommend all of our salt products for cleansing and building."

He also says it's important to get oxygen to the blood cells he recommends a rebounder and deep breathing. I've asked my sister to get a prescription for oxygen and to do straight oxygen for 15 minutes a day. Anything to get the oxygen to the cell. Supposedly the cancer cells are depleted of oxygen. I wanted to get her in a hyperbaric chamber but it is $250 a session and not covered with insurance so we cannot do the chamber right now.

You're inspriation to anyone out there dealing with Lung Cancer. Thanks for being here.
Becky :)

By duds
Posted February 5, 2009 at 5:44 pm
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Hi, I've just been reading your postings, My father has just been diagnosed with stage 4 NSCLC and has been given a prognosis of a few months to a year to live dependent upon how he responds to treatment. It was a real comfort to read your story and just hope my father will respond well. We haven't reached treatment stage yet - that should start in the next couple of weeks - the waiting seems endless although we only found out two weeks ago that he had a tumor. Is there anything/ anywhere you can suggest to me to look at in terms of treatment my father can request - obviously this Avastin worked for you - we're in the UK so I don't know if it's available over here.Just at the beginning of this fight, but want to do something positive for my father as he's been such a positive force in my life.

By MariasFriend
Posted January 26, 2009 at 2:23 pm
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Dear Skip,
Please check out "Cesium" on the web. There are many accounts of people with Lung cancer who have turned around completely using this to change their ph balance.

By jr1
Posted January 8, 2009 at 9:09 pm
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Hi Skip,
I started chemo 12/2007 with Taxol, Carbo, and Avastin for 6 rounds every three weeks. Since May I have been on Avastin every three weeks. My doctor said I cannot stay on it forever. He said it would eventually damage my kidneys. He stated that I could stay on it for about one year. I have had two scans with no new activity so far with a third coming up this month. The doctor doesn't know if it is because of me or the Avastin that the cancer is quiet. I hate the thought of going off the Avastin if it is keeping the cancer inactive.

Janet

By emilyjane
Posted January 6, 2009 at 10:05 pm
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Arlene - Thanks for the info about your husband's experience. It is so helpful to know about others who have been on same med, especially with good outcomes. I wish him good outcome with whatever he tries next, maybe the tarceva will keep it somewhat at bay for awhile longer.

By arlene
Posted January 5, 2009 at 9:53 pm
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you sure have been through an amazing journey skip- alls well if it ends well- keep the faith and keep up the good work. we will all be cheering you on. arlene

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.

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 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 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 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 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 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 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 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 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 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

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