Survivor Stage IV Small Cell Lung Cancer April 10 to Present

lorisoto
lorisoto Member Posts: 14
in Lung Cancer #1
Hello everyone - Just want to send out some encouraging words - I'm 39 diagnosed with Inoperable, Incurable, Termainal Stage IV Small Cell Lung Cancer in April 2010. I've had brain surgery to remove tumor in April 10, Radiation to my whole brain in May 2010, 1 chemo treatment from June to Aug 2010 tumors resolved both in my brain, lungs lymphnodes in left lung. Off from treatement from Aug to Dec 2010. Re-scanned MRI, PET and CT beginning of Dec. all the tumors came back worse then before. 1 in left upper lymphnode, 2 in lower left lung and nodules in middle chest followed by 3 new small tumors in brain. Started immediately with new drug Topotecan received new scans in Feb 2011 to see if Topotecan is working it's not. Was refered to Gamma Knife for brain Mets and the Gamma Knife doctors found 12 tumors on Feb. 24th, 2011. 6 on right side and 6 on left side of brain. 3 large mets over 1.5 cm. They were able to target 6 on the right and I'll go back in a couple of weeks for the other 6 on left side of brain. Very blessed that I was referred to Gamma Knife doctors I believe they have saved my life for now! My local oncologist and radiologist/pathologist were VERY WRONG on my brain tumors and MRI Scans. They said 3 and I find out I have 12?? I was not a happy camper when I found out. Gave the Oncologist a piece of my mind. Will no longer return to that Oncologist and or Radiologist place for my scans. This has taught me that I need to take responsiblitly and stay on top of everything. My LIFE is precious to me and unfortuntaley not to some of the medical professionals. I've learned some oncologists don't look at the bigger picture and just tell you what you want to hear or just follow the basic medical protcol. I'm not allowing this any longer. I'm checking into experienced Oncologists that handle my specific cancer. Looking at going to Stanford or Loma Linda where I will be a top priority and be with medical professionals that are interested in finding a cure or helping my survival rate. If you have any information I'm very interested. I'm 39 and I'm not having any complications, my weight is good, my health other then the cancer is fairly good, I still go to work, I'm fairly active need to walk more. My diet is excellent no problem eating. No symptons of all the side effects of chemo or radiation. Very strong willed person I thank God everyday for another day. I'm truly blessed. Interested in talking to all Small Cell Lung Cancer people to see how you are doing and your stories and survival times. Have a blessed day.

Comments

  • lekkerone
    lekkerone Member Posts: 199 Member
    #2
    God Bless
    God bless you as you obviously are going to fight hard. Good for you. I wish you the best, Diane
  • karenbeth
    karenbeth Member Posts: 194
    #3
    hi
    My husband has ext sclc, diagnosed in July 2010. He too had WBR followed by chemo. He has had 5 rounds of chemo with 1 more to go before scans. There has been some shrinkage, so I am hoping he gets a break for a while, like you did. The last scans showed some new tiny lesions in his brain, so I'm thinking eventually they may propose Gamma Knife. Curious to know what that was like for you--were there any side/after effects from that? Also, are you still on Topotecan or are you going to try something else?
    We live on the east coast and are pleased with his oncologist. You sound like a strong person and a good advocate for yourself. All the best to you.
  • lorisoto
    lorisoto Member Posts: 14
    #4
    karenbeth said:

    hi
    My husband has ext sclc, diagnosed in July 2010. He too had WBR followed by chemo. He has had 5 rounds of chemo with 1 more to go before scans. There has been some shrinkage, so I am hoping he gets a break for a while, like you did. The last scans showed some new tiny lesions in his brain, so I'm thinking eventually they may propose Gamma Knife. Curious to know what that was like for you--were there any side/after effects from that? Also, are you still on Topotecan or are you going to try something else?
    We live on the east coast and are pleased with his oncologist. You sound like a strong person and a good advocate for yourself. All the best to you.

    Side Effects from Gamma Knife - Very very mild
    Gamma Knife is saving my life right now. I strongly believe in it. It's another option. It's been the best expereience so far. They know what their doing all the doctors and nurses. There's so much involved they walked my daughter through everything they were doing to me. First they give you Advan to relax you then they inject you in four places with a numbing solution to screw on a Halo (used when you break your neck) to hold your head still while you undergo targeted radiation. It hurts alot and you feel it but it goes away in seconds. Then they put me in an ambulance to get MRI Scans to see exactly where the tumors are at and in turn that information was transmitted to all the doctors to start the targeted radiation. It took 5 hours for 6 tumors. I slept through the whole thing. My recover was fast. I had swelling but it was controlled by Decadron a steroid and to I had to take my seizure medicine Keppra again in case I had a seizure. I highly recommend this to your husband. In my case the tumors will return but I'm able to get repeated gamma knife treatments as long as there not in the same location as the ones they've already radiated. I have a new oncologist,canceled all my appointments and treatments with other oncologist due to Topotecan is not working plus other reasons. I've learned you really need to stay on top of things and your life. I have 19% growth from scan in Dec to Feb in my left lung. Topotecan is not for me. I'm getting ready to in role in a clincal trial Second Phase to I was just informed they want to do radiation to my left lung tumor that is getting ready to block my air way. My new oncologist suggested this. Due to he's worried I'll end up with pnemonia and I'm getting ready to go to Hawaii at the end of March to get a break from all this.
    Good luck to you an your husband. Gamma Knife is the best. Side effects are a breeze. :)
    Lori

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