Lung Cancer Support
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Update: Change of treatment again

Friends:

I had a difficult couple of months on the MSKCC clinical trial ( combo of Tarceva and MEK inhibitor trametinib) that concluded with leaving the trial. My first scan showed some shrinkage in the lung, but still those pesky lymph nodes all grew. Gastric effects were terrible - lots of diarrhea and loss of pleasure in eating. I now have PTSD if I walk into a restaurant.

After leaving the trial, I took a 3 week break from treatment. We visited my dad and celebrated his 93rd birthday with him, I celebrated my 66th, and we went to DC to participate in the Life and Breath Rally, where I got an excellent hug from Denzie! It was a moving day that included a visit with my Congresswoman that may be fruitful in unlocking more money for reseach.

I have now started chemo - carboplatin/alimta. I'm hanging in there, but these first days ain't no picnic.

Love you all. One of these days I'll be able to write again... I've discovered that it's very hard to focus on anything when I feel bad. Even my knitting time has been on the decline! 😳

Anita

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Anita,

You have certainly had your share of treatments crammed into the last few years. As someone who did the carboplatin/Alimta route, I can tell you that it is promising (and gets easier after it gets worse). Carboplatin is a mean little beast, and it did wear me down over the three months I was on that -- then I went into maintenance mode with only the Alimta and life became markedly more bright. Then I was on it for over two and a half years, infusions every three weeks; Alimta is a lot easier for many people to tolerate and I hope it does well by you. I hope that the chemo kills off your tumors completely, of course, but at the very least I hope you get the long-term stability it gave me. I've recently moved to Gilotrif (afatinib), but it is too early to tell what it is actually doing to the tumors. Still, I'm targeting a mutation that they didn't even check for in 2014 -- buying a few more years on one treatment opens the doors to new ones and, as you know, we live in a time when new treatments are coming out with some frequency.

I wish you the best of luck. Sorry that you're on a tough cycle now, but it is an effective one and I'm sure you'll get used to the ups and downs without letting the downs keep you there.

- Jeffrey

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We can debate all day about who gives the best hugs because I’m pretty sure you did. It was wonderful seeing you and when I can figure out how to post pictures I will do that.

Sending hope that this works for you for a very long time.

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I'm so sorry you have had such a rough time on the clinical trial. I understand your ptsd entering a restaurant having had ibs for ages. Never know what will set it off. Glad you had the opportunity to go to Washington. Now I hope you soon feel well enough to indulge in our mutual compulsion, namely knitting and that chemo works on those nasty cancer cells.

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Ohhhh Anita! Ick. I am so sorry for all you have been through and for how you feel now. You deserve grace and mercy, not feeling like you were hit with a sledgehammer. Honestly, I don't know how you folks do this. Big virtual hugs and loving thoughts.

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Anita sorry to here that the trial didn't,t work out. Hopefully they will have another trial.,you are a very strong woman so Dom,t give up keep fighting I know you can do it. Be here if needed. Hope you can forgive me for the other I was just starting to get sick,that's no excuse but that's not me.susiejo1948

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You never have to apologize to me, Susie Jo, you have never caused any problems for me.

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Anita, sorry to hear of these rough days. I’m so grateful that you went to the rally in DC-thanks for representing all of us. Carbo/pem is tough, but ii can’t imagine it will be harder than what you just endured.

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I pray you do well with your new treatments and that your appetite will improve. May God give you strength to face each new day.

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Anita I hope this new treatment helps if any one needs some luck with treatments it's you. Hoping new treatments help ,I,'ll be thinking of you hoping treatments are better and they help.miss you. And your blogs just get better. Love Susie

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Anita, you were on my mind this morning so thought I should tell you! Hope you are more comfortable today (she says with a hopeful heart). Give yourself one of your famous hugs and know someone is sending caring thoughts your way.

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Hi, Peggy! Now that the first week has passed since infusion, I am starting to feel better, right on schedule. Thank you for your caring thoughts.

Anita

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You are so right! Carbo/Alimta - definitely no picnic. I hope it gets easier for you and brings good results. Wishing you all the best.

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I am so sorry to read that you are having a tough time Anita! I hope the chemo gets easier for you and gives you great results. You are a strong lady, keep fighting! X

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I was first on 150 mg.of Tarceva ,but had 11 side effects so put down to 100mg.did better got a good pet scan .So my Dr put me on Iress a ,that did nothing so as of today I started on IV chemo once every 3 weeks

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