I'm due t have another PET scan on the 17th, treatment on the 18th. Treatment now is Alimta/Cisplatin/Avastin. Last CAT showed 'minor' spread of disease.
I have a question before I get the results of the PET. If the PET shows yet more progression of disease, say more lymph nodes are lighting up. Do you have any suggestions as to what I should do next? i.e., this is me asking for a 2nd opinion, before I get the 1st.
I'm nervous that if there is progression again, that they will stop my treatment (do they do that after a set # of treatments with Cisplatin? I think I read that here or on Inspire once, that Cisplatic becomes toxic) and I'd like to have some suggestions on where I might go from here.
I'd also like to remind that I am negative for all the mutations, so no targeted therapy for me. I have nsclc Adenocarcinoma, non-squamous.
Reply # - December 4, 2013, 08:55 PM
Reply To: Before my PET scan, question.
And I can't see if my bio shows up after my post, so here it is: Diagnosed 22/5/13 NSCLC IIIB Adenocarcinoma, Immunohistochem w EGFR19, EGFR21, & ALK-1 are neg.; Molecular testing EGFR neg, mutation not detected. Original dx: Tumor in upper R center lung, +2 nodes in chest (l&r) 3 nodes above the collar bone. Started Gemcitabine/Carboplatin 6/13. Treatment interrupted due to low blood counts; treatment reduced 25%. With increase @5% each infusion, counts again dangerously low. Started Alimta (Pemetrexed) first treatment 3/9/13. PET scan 13/9 showed change in dimensions of tumor and now have 3 nodes in chest and 4 above the neck. 24 Sept 13 Cisplatin added to Alimta. UPDATE: CAT today mass 3.4cm x 3.0cm (prev 2.7 x 2.0), newly prominent node superior medias; + irregular7mm nodule r lung. i.e. slightly worsening of disease. Avastin added last 2 treatments.
Reply # - December 5, 2013, 06:44 AM
Reply To: Before my PET scan, question.
Hi born, yes you're right that cisplatin and all platinum based drugs have such a rate of hypersensitivity to it after 6ish cycles that it is usually stopped after 4 or 6. Following treatments are often single agent.
As for PET scans, progression is determined by size of tumor not from whether they light up on PET because they're often false changes. There's a discussion on another thread about their worth and even dangers compared to CT. Too that same thread discusses other issues involved in making treatment changes. You can read it here, http://cancergrace.org/topic/maintenance-on-pemetrexed-post-chemo-and-r…
If it's found that chemo isn't very effective for shrinking your tumors tarceva is still an option even without a mutation. Clinical trials especially those including PD-1 and PD-L1 drugs are very promising and may be a good direction for those who aren't responding well to standard chemo.
I'll ask a doctor to respond but in the meantime I hope this helps,
Janine
Reply # - December 5, 2013, 02:47 PM
Reply To: Before my PET scan, question.
Janine, Thank you for your reply.
I sort of understand what they are saying about the scans. But my doctor told me that the PET is the only way to see if the cancer is active, and not just scar tissue. Also, I have lymph nodes involved in both my chest and neck, so the CAT scans I've had don't show most of that. I don't understand how they can determine if treatment is working or not without a scan?
Now that I'm on a triplet of Cisplatin/Alimta/Avastin, they need to determine if the Avastin is working on the tumor, but also if the other two are working on the lymph. Especially if I may be reaching a point where I may have worn out my welcome with Cisplatin (not sure how they determine that though; my blood is ok).
But you've given me more information that I understand on tarceva, PD-1, and PD-L-1 that I can bring up with my doctor!
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Just as an aside, here in Australia, PET scans are done in public hospitals and are paid for on the national health scheme. CAT scans are more common, and are paid by a combination of the patient and the health system. In all of Australia, there are no cyber knives. Not one. And there is no proton radiation. Not until about 2015. We are very backwards. Until the government decides they want Australians to have the proton treatment and cyber knife treatments, we don't get anything because they are too expensive for private companies to set up. We have a very small population.
My Alimta is paid for by the national health system as it is approved for my type of cancer, and the fact that I couldn't tolerate the first two types tried. My Avastin is not paid for. I get two free from the company that makes it, then I pay for the third. If we continue treatment, I then switch to me paying for the first two, and the company pays for the third. $3,000 ea. time!)
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I also have Hashimotos thyroiditis, and have just found out that I am terribly hypothyroid. So my tiredness from chemo has been compounded by this.
Reply # - December 5, 2013, 02:48 PM
Reply To: Before my PET scan, question.
...I have also found a study that connects lung cancer in women to synthetic thyroid hormone replacement. But that's a whole different story. Just thought I'd mention it. The people who did the study (Italy) think the link they found is worth further study.
Reply # - December 5, 2013, 08:53 PM
Reply To: Before my PET scan, question.
A few thoughts.
First, here's a discussion of the leading options we favor in people who demonstrate progression of their lung cancer after it progresses on first line platinum doublet chemo:
http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…
Second, it's worth knowing that policies about using PET scans to monitor disease progression are changing rapidly, as repeated PET scans have been identified as one of the most wasteful expenses in medicine. While it may be that it's hard to interpret if findings are cancer or scar tissue, a reasonable interpretation is that if a CT scan doesn't show things getting clearly worse, it's not significantly worse -- in other words, if you need a PET scan to find progression, the progression must be so subtle that it's arguably a mistake to change treatment because of it. There are rare exceptions, but it's fair to say that PET scans are wildly over-ordered and are now being limited far more than we have seen historically.
Third, the most common conclusion of any paper is that the people who did the study think it's worthy of further study. It's about as objective and meaningful as a mother thinking her baby is cute. This doesn't mean that there is nothing to the work, but the comment "worthy of further study" is so commonly stated that it's a meaningless throwaway statement.
-Dr. West
Reply # - December 5, 2013, 08:59 PM
Reply To: Before my PET scan, question.
I saw an orthopedist today who was very upset to learn that I hadn't been getting regular PET scans for my lung cancer since the recurrence in 2007. She had no real reason to support this position.--Neil
Reply # - December 5, 2013, 09:48 PM
Reply To: Before my PET scan, question.
I think that it makes sense to wait for the PET scan first before making any further decisions. There are usually several chemotherapy options, targeted therapy as 2nd line (ie tarceva), and clinical trials are also options. However the rate of progression on the scan will allow you and your physician to make further judgments about whether the therapy is working.
If the tumor is growing, it does not necessarily make sense to continue on the current regimen, because that would be added toxicity without necessarily good benefit.
I hope the scan brings good results for you and this decision making process can be postponed.
Warmly,
Kavitha Ramchandran MD