Alimta working - why stop it? - Discussion - Lung Cancer Alliance Survivors Support Community

After I flunked the Tarceva trial with/without Avastin in December, I went on Alimta. It was determined I was not receiving the Avastin and the Tarceva was not working.

I just had my 5th infusion and we added Avastin to it. My onc wants to stop the Alimta after the 6th infusion and continue w/Avastin and redo scans in 60 to 90 days. I am wondering why would we stop when it is showing progress. My onc indicates she does want me to build up a resistence to the Alimta and that we can always go back.

I am thinking of seeking a 2nd opinion on this but thought I would reach out to all of you and see what your comments are.

I am a 13 month survivor, IIIb, asymptomatic and the only real problems I have are the 3 to 7 days after chemo - extreme fatigue, mouth sores, constipation, occasional stress headaches that are resolved with Aleve and not much else.

I would rather do a year of aggressive treatment that works than take a break and have all hell break loose.

Comments and suggestions for 2nd opinion locations would be great. My insurance will cover the cost for me to go to any Comperehencive Cancer Center for a 2nd opinion. Suggestions please.

Miracles & blessings . . .

Kathy

By meadowbreeze
Posted April 3, 2008 at 9:44 pm
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Kathy
It doesn't make any sense to me. If it's working why change it. Yes your body might get burned out from it but there are other cocktails you can have. I might be wrong but I think that makes a bit more sense.
What do you think?

By kosby
Posted April 3, 2008 at 10:15 pm
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Nor any sense to me Linda that is why I am reaching out to the site for suggestions. This thing is an an ongoing fight and I don't think all oncs would go for the time out thing.

I just need some opinions and experiences from people who have experienced this type of dilema.

Kathy

By mgmsr
Posted April 4, 2008 at 5:22 am
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By all means, get that 2nd opinion. I'm "stuck" (not the word I want, blame it on the chemo). I started a Early lung screening study in 01 at Swedish in Seattle, I had parts of both lungs removed because of the nscslc, They thought we got it all but still went through 8 weeks of chemo that I guess didn't work or I wouldn't be back on chemo again. Anyway i have an onc in Seattle and one here at home, (Port Angeles) they are working together so it's not a "real" 2nd opinion. I don't think you can have to much information so go for it and good luck. Michael

By CHammett
Posted April 4, 2008 at 10:10 am
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Hi, Kathy.

If I were you, I'd definitely go for a second opinion.

I'd also ask this question of Dr. West over at onctalk.

Good Luck,
Carole
NSCLC IIIB (squamous) 01/07

By skiergirl
Posted April 4, 2008 at 11:01 am
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Kathy -

My feelings exactly! If it's working, why stop it?
My onc says we'll do Alimta until it quits working.
I just had my 12th infusion Wednesday, and it's like a miracle drug for me. So, I'd definitely seek a second opinion.
Good luck to you. Hope it works for you like it's working for me!
Kim

By leilani
Posted April 4, 2008 at 5:50 pm
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Kathy,
I'm so glad to read you are having success with Alimta. I had my 5th treatment and it's not doing anything to my tumor. No changes so far. So I was wondering if there's still hope, and I'll just keep staying positive and see what happens in another month or two.
Best of luck to you.
Leilani

By mgmsr
Posted April 5, 2008 at 8:08 am
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Kathy, I forgot to tell you I had two go-arounds with Alimta, I swear that it was the deciding factor in my breathing troubles. I have Emphysema and smoked for 40 some years, I quit ten years ago, wish it had been sooner. The first day I had Alimta I exercised for 1-1/2 hours, two weeks later I could not walk across the room. All my Doctors think I'm nut's, that the drug did not have anything to do with my breathing. But, I'm now on oxygen-24/7, and I can walk across the room, (as long as my hose is). But breathing is good, my cat doesn't like all the machines with wheels on them tho! I'm really interested to see what your 2nd opinion is. I have an 8am appointment with my P.A. Doctor Monday and will try to get him to say something. Go for the gold. Michael

By kosby
Posted April 5, 2008 at 10:38 am
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Michael -

I oroiginally complained about excessive SOB when I first started Alimta - I had suffered from bronchitis for years and already had Combivent & Flovent inhalers. It seemed like they just weren;t doing the trick any longer. I would go downstaairs to the laundy room and could barely make it up the stairs without huffing and puffing.

I was referred to a Pulmonary Specialist and she told me that SOB was a ig side effect of Alimta. She put me on Prednisone for for a brief period of time and I was breathing great. She also prescribed Advair which has been a miracle for me. I still use my combivent if necessary for immediate relief but seldom do I need it.

You may want to see a Pulmonary Specialist to get your breathing on track - just a thought as it worked so well for me.

Miracles & blessings . . .

Kathy

By SaltyDog
Posted April 6, 2008 at 6:57 am
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I was on Alimta for 19 months, without an interruption. We had a big discussion at the sixth cycle about taking a break. Like you, I had not had success with Tarceva. Nor had Cabrbo/Taxol worked for me.

One ONC group was saying what your Doc is saying: that they wanted to preserve the opton to go back on Alimta and felt that the break would prevent my body from attaining resistence it. Avastin was not approved at the time so Taxatere was the proposed fall back.

My second opinion(another ONC) felt that I should stay on the Alimta for three reasons: The lack of sucess with other drugs, lack of side effects from Alimta and the aggressiveness of my cancer when untreated. I went with the second opinion.
That worked for me, and now, 19 months later I am on Taxotere.
Phil C

Alimta working - why stop it?

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