Give up or try alimta at crossroads - 1248579

ssm
Posts:5

Progressive bilateral metastatic ca lung ( non small cell) off tarceva for 2 months post spine surgery with advancing disease. Was recommended alimta alone. Anyone who has tried alimta with good response ? Major side effects? Tired of taking drugs with adverse effects .. Give up or try alimta ....????

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Reply # - October 2, 2012, 06:48 PM

sherrys
Posts: 212

ssm, I'm sorry you feel you are at a crossroad. I hope you won't give up. I wanted to tell you about my father. He was diagnosed stage IV almost 3 years ago. He was on Tarceva for 2 1/2 years before he had progression. In April, he started Alimta alone. We were told that the drs. were hoping for stability. He had shrinkage in every scan with the exception of the one he just had last week, which showed slight progression. He has been taking Alimta once every 3 weeks. The ONLY side effect he has had has been fatigue. At first he was tired for a day or 2, but the fatigue has increased. I also want to note that he turned 83 this past Sunday, so I am sure that age has something to do with being tired.

Reply # - October 2, 2012, 08:24 PM

lupobuono
Posts: 3

ssm, DO NOT GIVE UP! My story:

A light smoker more than 45 years ago (total of 5 pack-years) I started Alimta (pemetrexed) treatments for Stage IV NSCLC (adenocarcinoma) diagnosed 1 year ago, and was a total mess at first, with a 7 cm primary tumor in the left lung, 30 tiny mets to the brain, mediastinal lymph nodes filled to the brim, bone mets all over the place and a met on my right adrenal gland. Started with carboplatin and Alimta every 3 weeks almost 1 year ago exactly, then added Avastin after two cycles. The brain mets disappeared on their own and without radiation after cycle 2, and by 6 cycles the bone mets were almost completely resolved as well as the lymph nodes, adrenal met, and the primary tumor shrank down to 1 x 2 cm. After a few more "maintenance" cycles of Alimta/Avastin only (which continues to this day) the primary disappeared to a small scar. I have had a "complete response" with this regimen and a PET-CT scan confirmed this in 6 weeks ago. I have absolutely no doubt that Alimta has preserved my life, big-time. The side effects (mostly fatigue) have been manageable. I have yet to have ANY radiation treatments.

Alimta has been described as a godsend to me (some of my docs have used the word "miracle") but I appreciate their sentiments, though I'm an atheist and proud of it. FOR ME IT JUST WORKED! PLEASE TRY IT if your oncologist wants you to!

Best wishes,

The Good Wolfe

Reply # - October 3, 2012, 12:14 AM

certain spring
Posts: 762

Great to hear this, lupobuono. Long may it last.
ssm, I can completely understand your weariness. However there does seem to be a category of people for whom Alimta works really well, and for long periods of time, as Sherry's father and lupobuono have demonstrated.
I guess the other question, depending on where you are, might be whether mutation testing is a possibility, in case you have the ALK and could be a candidate for crizotinib.
As for "giving up", people have different approaches and one cannot know how someone is feeling or how much they have been through. It seems to me that in some situations it can be a positive choice to stop treatment, accept what is coming, and feel freer in the time that is left. I hope you are recovering well from your surgery. Very best.

Reply # - October 3, 2012, 07:00 AM

catdander
Posts:

I just wanted to send great hopes for all of you.

ssm, no matter what you decide it will be the right choice. Alimta does have very good efficacy for many.

Sherry I hope your dad's slight progression is just the cut of the scan. One of D's scans about 6 months into gemzar showed several mm's (5 or 6) of progression but then read continued shrinkage there after.

Good Wolfe, Amazing! Thanks for sharing all that information. My husband's story is very similar to yours.

Certain Spring, you seem to always see things so realistically and with the hope of our Dear Simon.

Much luck and hope to all,
Janine

Reply # - October 3, 2012, 07:20 PM

Dr West
Posts: 4735

I agree that there are certainly options, but if you have a non-squamous cancer, Alimta (pemetrexed) is very often an attractive option. The majority of patients tolerate it quite well, with fatigue associated with low blood counts being the most common adverse effect. Of course, the most important issue is that it works for many patients, either leading to tumor shrinkage or stability with non-progression that can often last for somewhere between many months and a few years in the best cases.

Good luck.

-Dr. West

Reply # - October 3, 2012, 09:41 PM

ssm
Posts: 5

Dear all, and especially Dr West, I am overwhelmed by the loving messages of support, encouragement and guidance ! You are all sooooo.... amazing!!!

I am leaning towards Alimta. I have been recommended in the past to combine Tarceva and Alimta. But my mind tells me without any scientific data, with what appears to be Tarceva resistant cancer with mutations pointing to that, why even consider Tarceva. I am not sure data combining the two drugs is available and supports use of combined therapy.

With increasing cough and wheezing and consolidation in right lower lobe and increase in size of all nodules diffusely bilaterally with many new nodules, I might regret not giving Alimta at least a try for shrinkage of nodules to decrease symptoms, I am opting for Alimta alone but would welcome any guidance and report from this 'very special and loving community' based on their experience and information.

I send a virtual hug to each one of you!

May you be surrounded by the Divine and Heavenly light and peace be unto you in your heart, mind, body and soul.. Wishing you all and your loved ones best of health and happiness..

With my sincere gratitude. <3

A special thanks to Dr West. I am amazed how he finds time to respond with such kindness to so my people.

Sarwat.

Reply # - October 4, 2012, 12:16 PM

catdander
Posts:

Sarwat,
Thank you for your kind words. I think most of us are here because it is so helpful in our journey to help and speak to others who are going down similar paths.

You haven't given us much background on what treatment you've had, how long, and how it worked and what if any mutations you've been tested for and those outcomes.
If you made a "signature" in your "forum profile" it would give context from which the doctors can provide better input.
To add your signature:
click on your user name, ssm, to the left of one of your posts.
click on "edit signature".
click submit.

Also you wrote about tarceva/alimta combo. That combo is a rising consideration for those who have had very good response to tarceva but are now showing some resistance to it. I don't know how you fit into that picture but this is a very recent post on the subject.
http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/

There is quite a library of blog/posts by our doctors on the site. Our search engine is quite good and the "Focused" and " General" Cancer Info menus can help guide your search also.

If you have more questions don't hesitate to ask.
I look forward to hearing good news from you soon,
Janine
Janine

Reply # - October 4, 2012, 04:35 PM

Dr West
Posts: 4735

I agree that there isn't a clear incentive to combine Alimta with Tarceva (erlotinib). I think the only time that is very compelling as an idea is when someone has a known EGFR sensitizing mutation, has a good response for a long time on Tarceva, then progresses slowly -- that's a situation in which I might add chemo to ongoing Tarceva. Otherwise, there is really no evidence to support doing concurrent therapy.

Thank you for your very kind comments. Good luck!

-Dr. West

Reply # - October 4, 2012, 06:26 PM

ssm
Posts: 5

Thank you Janine and Dr West for your thoughtful comments. I guess since the site was updated, my profile may have been removed. I will update that for future reference. Thank you for bringing this to my attention. I will check the link and update.

I have had good response to ( initially started in July 2007 Egfr Positive, pleomorphic, multicentric non small cell bilateral lung ca.. Never smoked) initially shrinking the tumor by 25% within months but gradually progressive disease. Rebiopsy in Oct 2010 with complete investigational panel ( challenge to understand this alphabet soup and its clinical relevance), significant for T790M mutation, positive for EGFR exon deletion( associated with sensitivity to EGFR inhibitors) and 15bp deletion and negative for KRAS exon 2 mutation.
I was briefly 3 months clinical trial with BIBW2992 plus Cetuximab ( 3 months) meningitis due to Cetux was manage with Steroids, significant tumor regression was seen but has to get off trial due to severe mucosal and dermatological toxicity. Was on Tarceva for a year with gradual progression, but in the last 2 months progress has accelerated with increase in size of the mass RLL and multiple pulmonary nodules with many new nodules with pleural involvement & increase in severe cough and new onset of wheezing. Shortness of breath is minimal as my activity is somewhat limited due to Spinal fusion and I may be adjusting to
treated at MSKCC since 2008 by ( Dr Vincent expert in Nsclc ) I have also informally consulted with Dr Lecia Sequist, a cutting edge researcher over the last 5 years via email, though not in the last 1 1/2 year. Renal nodule with h/o intermittent hematuria.

I am getting Vit D tomorrow and begin Alimta next week thanks to all the encouragement and support in getting me there..... That support as been invaluable, knowing that many have blazed the trail for me with fortitude and have tolerated it well and that they are willing to be a guiding light.. Ever so grateful !!!

Reply # - October 4, 2012, 06:31 PM

JimC
Posts: 2753

Hi ssm,

Just to add some personal experience, my wife was treated with carbo/alimta first-line, then switched to Tarceva for maintenance. When she began to progress, we added Alimta, then eventually dropped the Tarceva. She got a good response from Alimta for a while and as a single agent tolerated it very well. I hope it will be effective and tolerable for you.

JimC
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Reply # - October 5, 2012, 01:54 PM

ssm
Posts: 5

My sincere condolences Jim on your loss.. May her soul RIP and may you find continued strength to deal with her untimely loss, through the prayers of those you continue to help . I am very impressed with your willingness and diligence in helping other on their path. Unfortunately, sometimes the 'sufferings' of care givers is ignored or not recognized as they have a dual challenge.

Peace be unto you Jim..
Sm

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