Alimta/Cisplatin fail - 1260286

borntosurvive
Posts:52

Well, after 9 weeks, my CAT scan today shows slight worsening of disease. Another node is 'prominent' although not enlarged, the original tumor is larger by .7 x 1.0 cm, and another 7mm nodule which is suspicious for pulmonary metastasis. i.e.: "There appears to be slightly worsening of the disease."

I have a call in to my oncologist, as I'm not due to see him until during my scheduled chemo on Wednesday. But I've been 6 months now on treatments that have not worked at all (so it seems) and I'm wondering what would be the next step in chemo and what are the chances that anything will work on me?

This is not a life. I don't feel very grateful at the moment.

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Reply # - November 3, 2013, 10:03 PM

Dr West
Posts: 4735

I'm sorry the results have been disappointing and that you're frustrated by treatment -- certainly understandable, though I thin it's important to note that the progression was characterized as slight.

I don't recall the treatments you've received, but I'd refer you to this link that reviews my general thought process about treating advanced NSCLC after prior progression:

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

Good luck.

-Dr. West

Reply # - November 3, 2013, 10:18 PM

laya d.
Posts: 714

borntosurvive:

I'm so sorry to read about your progression. . .and I can only imagine how disappointed you must be feeling having had to endure a cisplatin doublet and then seeing progression (no matter how slight). But, as noted in the link provided by Dr. West, lots of options still may be available to you. I hope that your doctor calls you soon and that there is a new game-plan in place for you come Wednesday.

Laya

Reply # - November 4, 2013, 10:41 AM

catdander
Posts:

born, I'm so so sorry you're showing some progression. It's important you speak to your oncologist to get her/his take on the situation. I doubt Dr. West saw or noted your thread title. It is understood that first line platinum doublets will be the best chance at efficacy with typical chemo drugs, but not always. Many doctors would look at alternative choices such as tarceva or a clinical trial with novel therapies such as the promising immune therapies targeting pd-1 and pd-l1.

Each trial has it's own set of criteria that allow people to participate. Often it includes someone who has only had one line of treatment so it's important to get input at each juncture in treatment to insure best options.

There's a series of blog videos (transcripts too) about trials that may be helpful.
pt 1, http://cancergrace.org/cancer-101/2013/01/06/clin-trials-ramalingam-pt-…
pt 2, http://cancergrace.org/cancer-101/2013/01/18/how-are-clin-trials-develo…
pt 3, http://cancergrace.org/cancer-101/2013/01/27/ramalingam-clin-trials-pt-…
pt 4, http://cancergrace.org/cancer-101/2013/02/02/qa-with-ram-on-clin-trials/

This blog post describes the many helpful attributes of second opinions including help to find trials, http://cancergrace.org/cancer-101/2011/11/13/an-insider%E2%80%99s-guide…

All the best hopes,
Janine

Reply # - November 4, 2013, 10:21 PM

borntosurvive
Posts: 52

UPDATE:

I saw my oncologist this afternoon. Like Dr. West, he also focused on the 'slight increase' and does not think that the doublet I am on has necessarily not worked.

He also thinks that this scan has been my best one so far. I guess because of the word 'slight' and no additional lymph nodes in the chest area.

He says we'll go another two rounds, add in Avastin (capsule), and then do another scan in 6 weeks.

The Avastin is not approved on the health care system here in Australia, nor does my private insurance insurance cover it. But apparently we may be able to get two treatments free before we have to pay. Won't know until tomorrow.

So I'm going in for the doublet of Cisplatin/Alimta in the morning, and will get the Avastin when they can get it, since it's not an i.v. treatment.

I do feel a bit better, a bit more positive than I was after the report, although still also a bit unsettled.

Reply # - November 5, 2013, 07:15 AM

catdander
Posts:

Yes your signature is there now. I'm glad you're feeling a bit more comfortable today. One of the scary parts of getting scan reports before the onc appointment is it's hard to know what the onc will read from it. The radiologist doesn't know anymore about you than the scan or series of scans he/she writing about. It's important to know the context surrounding the scans to understand the whole picture.

Janine

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