PET scan disappointing - 1259292

borntosurvive
Posts:52

After being taken off the Gemcitabine/Carboplatin treatment due to severe blood side effects, I started on Alimta 1st Sept.

My 2nd opinion doctor suggested a PET scan to see if the first chemo had done anything, (did that 13/9) but the result showed that I now have two more lymph nodes affected with the disease. For a total of 7. 3 in my chest, and 4 above the collar bone.

I'd like an opinion about the spread of the disease during the previous treatment, and what the likelihood that Alimta alone can stop the spread, and even clear the cancer?

As it's been 3.5 months since my diagnosis, I'm concerned about what this means.

And, if the Alimta doesn't work, is there another chemo that can be used?

Also, what does it mean that my body had such a severe response to the chemo, and does that make me less likely to respond to any chemotherapy they can give me? I think that's a big concern to me right now.

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Reply # - September 16, 2013, 05:25 AM

JimC
Posts: 2753

I'm sorry to hear of the PET scan results and the trouble you had with first-line chemo. At times, a specific chemo regimen that is tolerated well by some patients is just tough for others, but it does not indicate that other regimens will not be tolerated or will not be effective. So it is entirely possible that Alimta will be effective, and it tends to be one of the best tolerated chemo agents.

If Alimta proves ineffective, there are certainly other agents that can be used, including the approved second line agents docetaxel and tarceva (which can be effective despite EGFR negative status, just perhaps not as well as for an EGFR-positive patient).

Good luck with Alimta.

JimC
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Reply # - September 16, 2013, 05:46 AM

catdander
Posts:

borntosurvive, I'm very sorry your chemo isn't going as planned. While your scan isn't what you'd want either there has been time and dose reductions between the treatments you've had so I wouldn't assume the chemo isn't working but that the chemo you've tried, gemzar and carbo were too hard on your blood counts (both are notorious for just that). Alimta should be given a chance to work. From what I understand you've only had one maybe 2 infusion of Alimta?

I don't remember and perhaps you can add to your bio if you're negative for any mutations. If you've not been tested I'd think that is a good plan to get that started. Usually the testing (It could have changed) is ordered in sequence of odds of having it which I believe is EGFR ,ALK, ROS1. And possibly KRAS if there are possible treatment options for that?

Too the immunotherapy drugs for PD-1 and PD-L1 trials are promising and are being conducted all over the world.
Here are links to the trials one PD-1 drugs for nsclc and one PD-L1 drugs for nsclc. The site is clinicaltrials.org and is very informative for doctors and laypeople.
http://clinicaltrials.gov/ct2/results?term=pd-1&recr=&rslt=&type=&cond=…
and
http://clinicaltrials.gov/ct2/results?term=PD-L1&recr=&rslt=&type=&cond…

If your 2nd opinion doc was a specialist he/she may have gone over all these? If not you may need to advocate more for yourself. Don't be shy, it's your life.

Continued....

Reply # - September 16, 2013, 06:00 AM

catdander
Posts:

I've pasted your biography below so the doctors can see your history. Note day/month/year in time stamp.

You can add it to your posts automatically as Jim and I and others have done so not to have to do it each time you ask a question. This link will help you copy your "profile bio" and paste it to "set your forum signature"
http://cancergrace.org/topic/grace-site-tips-profile-bio-forum-signature

Borntosurvive BIO:

Diagnosed 22/5/13 NSCLC Adenocarcinoma, EGFR negative. Tumor in upper R lung, 2 nodes in chest (both sides) 3 nodes above the collar bone. Started Gemcitabine/Carboplatin early June 2013. Treatment interrupted due to low blood counts; treatment reduced by 25%. With increase in potency @5% each infusion, blood counts again dangerously low; treatment discontinued. Started Alimta (Pemetrexed) 1/9/2013 (Sept) PET scan 13/9/13 showed change in dimensions of tumor and now have 3 nodes in chest and 4 above the neck. So first chemo did not work at all.

Don't hesitate to ask...anything.

Janine

Jim may be swift but I am long winded. :lol:
Good luck with your treatment. I hope Alimta works for a long time and you won't need to make any changes for a long time.

Reply # - September 16, 2013, 08:03 PM

Dr West
Posts: 4735

I don't really have anything to add to the thorough comments from Jim and Janine. There are certainly other options to consider, and while we are always more encouraged when someone has a good response to initial treatment, there are certainly other alternatives that may work more effectively.

Good luck.

-Dr. West

Reply # - September 17, 2013, 02:11 AM

borntosurvive
Posts: 52

Thank you so much Jim, Janine, and Dr. West. I really appreciate your responses.

Those links weren't much use to me, unfortunately, as not only do I not understand them, but I live in Australia, and those were in the USA, I think. I will, however, write them down and bring them to my next consultation.

Dr. West, I'm really interested in knowing what other options can be considered by me/my oncologist? I feel that with my doctor, I'm left hanging, not really being given specifics as if he's saying to me "Let's wait and see." So, after 3.5 months, after weeks off chemo, after waiting and seeing, I'm now on what seems to me to be a maintenance chemo, not one that will, by itself, remove my cancer.

Am I wrong? Is my doctor not fully explaining how REALLY bad my blood was? Or how much danger I was in? Or if I simply cannot, and never will be able to tolerate a full treatment? I feel so out in the cold.

I'm not going back to see the other oncologist, because he's a surgeon. So I'm going to try to get a referral to another oncologist just so I can get a second opinion here locally. I'm just not feeling like I'm in the loop about where I REALLY, REALLY stand and what my chances are of surviving this and for how long. He did tell me that my type of cancer is harder to get under control, but that it is easier to keep under control longer once we do that.

It's causing me a lot of aggravation, just feeling this way. Feeling like I'm not being aggressively treated for this life threatening disease.

If you could suggest to me some "other possibilities" that I can have on my 'question list' when I see him, I'd really appreciate that.

Also, is there any way to improve my own blood marrow so that I can tolerate chemo better? (not that I know how the Alimta is affecting it yet). And, is Alimta by itself a good course of treatment for them to be following? Sometimes I feel they are protecting themselves more than me.

I look forward to your reply

Reply # - September 17, 2013, 06:04 AM

JimC
Posts: 2753

In particular, platinum agents such as carboplatin can be very tough on bone marrow, so in most cases platinum is not used after first-line treatment (although there are plenty of exceptions). As far as subsequent treatments, single-agent regimens are very common. Alimta is a drug used very often as first-line therapy as well as in later lines. It's proven effective and tolerable for many patients.

The goal of chemotherapy in stage IIIB/IV lung cancer is to kill as many cancer cells as possible. Unfortunately that treatment does not often "remove the cancer" from a patient's body (a "complete response"). The more common response is tumor shrinkage or stability. A relatively well-tolerated drug such as Alimta can be used and provide stability for extended periods of time.

At this point it really does make sense to continue with Alimta, then rescan to evaluate its efficacy. If you tolerate it well and achieve stability, that will be a very good result. If not, your doctor will assess the situation at that time and make recommendations as to subsequent treatment.

JimC
Forum moderator

Reply # - September 17, 2013, 06:08 AM

Dr West
Posts: 4735

It's potentially possible to add a medication like neupogen or Neulasta, called "colony stimulating factors", that can lead the marrow to recover white blood cells faster. Carboplatin/gemcitabine is a notoriously difficult regimen for the blood counts, so you may well have an easier time with Alimta. The options that have really been studied for people who have had their cancer progress on prior chemotherapy are Alimta, Taxotere (docetaxel), and Tarceva (erlotinib). Tarceva isn't a standard chemotherapy and rarely has much impact on blood counts, so that's certainly likely to not lead to similar problems. Beyond that, clinical trials are an option we often favor when available.

However, as I intimated above, because carbo/gemcitabine can be particularly problematic for blood counts, there's good reason to be more hopeful about some other regimens being easier to get in on a regular schedule.

I do think it would be helpful for you to talk to another oncologist to either corroborate what your current oncologist has been doing or create a more therapeutic relationship. Please forgive me for saying so, because I certainly don't have all of the details, but I am not reading a lot of trust in or connection with your oncologist in your comments, so getting another opinion may help clarify whether your fears of being under-treated are well-founded or your expectations may not be realistic. I must say that it isn't rare to have a lung cancer that progresses through very appropriate chemotherapy, and this doesn't mean that the treatment was deficient but rather that the cancer just happens to be quite resistant. Nothing you're telling me leads me to think that your oncologist is clearly to blame for the disappointing outcome of the treatment you've received thus far.

Again, I don't pretend to have all of the details, so a second opinion from another oncologist may help clarify things better.

Good luck.

-Dr. West

Reply # - September 17, 2013, 07:32 AM

borntosurvive
Posts: 52

Thank you both, Jim and Dr. West!

I feel like I have a clearer understanding of my concerns having read your very clear and thorough replies.

I think, Dr. West, that you correctly picked up on how I feel about the oncologist. It might just be paranoia on my part, because I really do want a lot more information than some other people might. I think they call it complicated. Or, call me complicated I should say.

On the other hand, having had the problem I had with my blood marrow, it bothers me a little that it went ignored that I told them in the forms I initially filled out that I've had problems with hypothyroidism (re: Hashimotos Thyroiditis and unstable thyroid tests/doseage) and anemia in the past couple of years.
I would think that might make them reconsider using a drug that is known to be hard on bone marrow. Especially after my first reactions. That doesn't give me confidence, if I feel I have to go over every single detail with a fine tooth comb.

On the other hand, with our socialized medicine here, I could NOT have gotten the Alimta until I had twice been taken off the other. It's not covered. So they had to wait until I fit the profile. But it took 3.5 months for me to get there.

Anyway, you both really gave me enough information to make me feel that I understand the treatments more clearly, and at least can ask better informed, targeted questions.

A lot of this is knowing, learning, what questions to ask.

Thank you so very much! I'm sure I'll be back here again! Much appreciate all your time and effort.

Reply # - September 17, 2013, 10:47 PM

borntosurvive
Posts: 52

Thank you very much for these. I'll print them out and add them to what I'm bringing in to the appointment on Monday.

Just fyi, my first Alimta treatment was 2.5 weeks ago, and since yesterday my cough have improved quite dramatically. Not sure what that means, but it was getting progressively worse with the other treatment.

Thanks again!

Reply # - September 18, 2013, 04:48 AM

JimC
Posts: 2753

That's good news...not only that you are feeling better but that it could be an indication of a good response to Alimta. There are two ways to evaluate whether a treatment is working - evidence of tumor shrinkage on scans, and improving symptoms.

It's too early to be sure, but this is certainly encouraging!

JimC
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