NSCLC - adenocarcinoma stage III B - IV - 1263370

monikakra
Posts:9

Dear Dr West (or whoever it may concern),
I am new to the forum and I desperately would like to kindly ask you for advice. In brief: I come from Poland. For the last 3 months me and my family we have been struggling with NSCLC of my mother (60 y.o patient with around 30-35 pack years history). In Jan. mom was diagnosed with III B stage of adenocarcinoma with two tumors localized in the right lung: 33x28x27 mm and around 60-70 mm primary (?) tumor. In PET (30th Jan 2014) it turned out that also the selected lymph nodes are swollen and they were active as follows:
- Paratracheal upper left (2L) – 10mm SUV max FDG=3,2, 13.10 mm, SUV max FDG=3,6
- Paratracheal lower right (4Rs) 11x9mm SUV max FDG=3,6
- Behind the trachea (on the level of the lower brim of the aorta curve) 13x9 mm SUV max FDG=5,8
- Paratracheal lower left (4Li), 12x11mm SUV max FDG=2,7
- Subcarinal lymph nodes SUV max FDG=3,8
- Lymph nodes in the right lung cavity SUV max FDG = 6,2
- Lymph nodes in the left lung cavity SUV max FDG=3,9
Due to the fact that the lymph nodes were swollen almost everywhere in the thoracic cage we were informed that the cancer was inoperable. In Feb mom was enrolled to the clinical trial of a new drug by HelixBioPharma, that is: LDOS-47. Altogether mom (throughout Feb-April) received around 3-4 cycles of this chemo. Unfortunately, to no avail. Yesterday we received the results of a CT scan which showed the tumor's progression (enlargement of the primary tumor by 34 mm and a new 6 mm meta in the right lung). The remaining tissues were "clear". All in all, we are now awaiting the new chemo scheme and this makes me ask you the following questions (if I may):
1. Is it normal that such a monotherapy (LDOS47) to be administered as 1st line treatment?
2. What chemo scheme (cisplatin + etoposide or cisplatin+vinorelbine or cisplatin + pemetrexed) would be most suitable now? Any need for radiation? If so in what scheme?
I look forward to your kind reply.
Yours sincerely
Monika

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Reply # - April 23, 2014, 04:38 PM

monikakra
Posts: 9

PS. Last but not least, would you conisder adequate to check ALK mutation of the tumor and seek apropriate treatment (most probably a clinical trial) related to ALK mutation? I am asking you this since our doctor declined the necessity of checking the ALK mutation as she said it was more common in patients who had never smoked than in heavy smokers. (mom's tumor's tissue was also EGFR tested, but it turned out that there was no mutation of this type in her tumor's tissue, so no treatment with Tarceva was proposed).
PS2: I know that in FoundationOne many other genetic mutations are tested / found within the tumor's tissue - do you think it would be a good option to undergo such 'tissue genetic scan'?

Reply # - April 23, 2014, 06:25 PM

Dr West
Posts: 4735

The treatment that she received is a clinical trial, so it is not a standard treatment. It would be most common to receive a combination of chemotherapy and radiation.

Now that the cancer has progressed, the treatment would generally be a platinum-based doublet, such as cisplatin or carboplatin with a partner drug. There isn't a clear best choice among these, as they produce very comparable results in most patients. The only real exception is that Alimta (pemetrexed) would only be indicated for a non-squamous lung cancer, including an adenocarcinoma.

Radiation would be used primarily if there is concern that the cancer is going to cause some problem from its bulk compressing an airway or blood vessel. Radiation is more reliably effective for shrinking cancer in a limited area, but for metastatic disease, the larger goal is to treat disease everywhere, so systemic therapy becomes the main focus in most cases.

It is certainly appropriate to test for an EGFR mutation or ALK rearrangement, and this is the standard of care for patients with a metastatic non-squamous NSCLC, even if they have a smoking history. Foundation One testing is an option, but there is no clear role for testing for a battery of rarer markers that don't have a clear treatment to pursue after finding them. FoundationOne testing is not standard of care at this time and doesn't have a proven improvement in survival when doing it.

Good luck.

-Dr. West

Reply # - April 24, 2014, 11:27 AM

monikakra
Posts: 9

Dear Dr. West, thank you so much for a prompt reply! We've received the new chemo scheme today (no radiation included). It includes PG plan, so I assume it is the doublet: Cisplatin + Gemzar (gemcitabine), right? If so, does this mean that mom will receive something "better" than a standard doublet (cisplatin+etopozide or cisplatin+vinorelbine)? (or is it hard to say that Gemzar is better then etopozide or vinorelbine?) Does Gemzar provoke more side effects than Alimta? The thing is that Alimta in Poland (most probably) is not reimbursed by Polish NHS (national health system), so in other words: once we've decided that we want to stick to Alimta I would have to fight for it with NHS or seek help with ElilLily and Company. Do you think that I should turn directly to EliLily (or search a hospital in Poland that conducts clinicaltrials with Alimta) in order to receive the Alimta treatment for mom or should we stick to EliLily's Gemzar as it functions more or less the same? Sorry for posing all of these questions, but as far as it concerncs oncology we are so to speak "laymen"... and I do not want to miss the opportunity to both: prolong my mom's life and to cater for its quality at the same time. Thank you in advance for your response/ Best regards/ Monika
PS: I heard that introducing radiation into PG scheme is very risky as taking Gemzar provokes more side effects of the radiation. Is that correct?

Reply # - April 24, 2014, 02:34 PM

catdander
Posts:

Correct you wouldn't pair gemzar with radiation but separate it with a week or 2. We can't answer should questions. One doublet over another is probably of no big consequence except cisplatin tends to cause more side effects for some than does carboplatin.

We have a great deal of info for the questions you've asked and our search engine is very handy (though you may need to log off to get results depending on your browser).

http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed…
http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

I hope this is helpful and all the very best to your mom,
Janine

Reply # - April 24, 2014, 07:01 PM

Dr West
Posts: 4735

Cisplatin/Gemzar (gemcitabine) is a standard treatment that isn't clearly better, just a very fine doublet alongside a platinum/Alimta (pemetrexed) or platinum/taxane (Taxol (paclitaxel) or Taxotere (docetaxel)) or a platinum with etoposide or Navelbine (vinorelbine). They have all been tested against each other and really show rather modest differences or no real difference at all. Accordingly, I think most lung cancer specialists wouldn't be inclined to recommend fighting for or paying out of pocket for Alimta, a rather expensive medication, over alternatives that produce very comparable results.

And yes, Gemzar leads to significant side effects if given concurrently with radiation. We try to avoid having them overlap if at all possible.

-Dr. West

Reply # - June 16, 2014, 04:28 PM

monikakra
Posts: 9

Dear Dr West,
having written in April about my mother's cancer I didn't even expect I would be forced to return back to you with another question on cancer again... In April I was 6-7 month pregnant. So, I gave birth to my beautiful baby boy on 10th June 2014. Unfortunately it turned out that my son has malignant tumor (!!!). How is it possible??! I donno. And I guess this question will remain unanswered :( Nevertheless, I have other multiple questions arising on the subject of cancer diagnosed in newborns. To whom in this forum may I write in order to receive information on this subject? The diagnostic process is under way. By this time doctors haven't establisthed yet what kind of cancer my son has got. They did biopsy. Today we shall hear the results. The doctors suspect: RMS, PNET, neuroblastoma or nephroblastoma. The tumor, which is almost 10 cm in size, is localized in abdomen. It constitutes nearly 3/4 of my son's abdominal space... Since the tumor is rapidly growing (approx. 2 cm since the day he was born) my son received chemotherapy: on 15th June (vincristine) and yesterday he received Endoxan. I would like to ask you what are the treatment standards in the USA for those four suspected types of cancer (RMS, PNET, neuroblastoma, nephroblastoma)? I mean: doctors gave my son chemoteraphy without even establishing the final diagnosis on the type of the cancer, but this is a somewhat life-saving procedure, as we were told, in the sense that we cannot wait standing idle while the tumor is so rapidly growing and we haven't established what kind of tumor it is. What chemo scheme might be applied in this situation in the US? What further diagnostic tests should we consider in order to deepen the diagnosis? Should we do PET or is it unnecessary?

Reply # - June 16, 2014, 06:43 PM

Dr West
Posts: 4735

I'm truly sorry, especially that your son was born with this tumor, but also that pediatric oncology is a completely different world from adult oncology, and in fact a completely different specialty. Unfortunately, we don't have anyone here who can provide any insight beyond what the doctors there are saying.

Good luck.

-Dr. West

Reply # - June 17, 2014, 06:20 AM

monikakra
Posts: 9

Hi Dr West, thank you for a quick response. I understand the problem :( However, is there any specialist on neonatal oncology in the US whom you might recommend for consultation? Best regards / Monika

Reply # - June 17, 2014, 11:56 AM

catdander
Posts:

I'm so sorry your baby is so sick. St Jude's is a leading research hospital for childhood onc.
I think I'd look to them first if I needed to find out what's going on today in cancer care for a baby. They have partners or locations in several countries. edit to give a more central web addi, http://www.stjude.org/patientresources

I'm sending hugs and healing thoughts to you and your baby boy.
Janine

Reply # - June 17, 2014, 06:38 PM

Dr West
Posts: 4735

I don't know enough about the field to make such a recommendation. The network of children's hospitals -- those that only specialize in pediatric care -- would be the best place. That may not be possible on an urgent basis, but if/when possible, places like Children's Hospital of Boston, or Philadelphia, or in Seattle, or St. Jude's, or a few others are major centers of excellence. Pediatric oncology often gravitates to these very centralized, specialized hospitals, more than adult oncology.

-Dr. West

Reply # - September 4, 2014, 03:44 PM

monikakra
Posts: 9

Dear Dr West,
could you please tell me if there is any treatment available (in USA or in the world) for ADENOCARCINOMA after a patient finishes 6 cycles of GEMCITABINE-CISPLATIN scheme? Should we seek for any other chemo or maybe ask the doctors for radiotherapy? My mother is now finishing her 80% doses of GEM-CIS chemo scheme and we are looking for other treatment options. My mother's general condition is satisfactory. Her blood tests are ok as well. Thanks to the chemo her primary tumor has shrunk by about 1.5 cm (which is great!). The main problem for the time being is the fact that she has got atelectasis in both her lungs (parts of her lungs). Is there any possible way to fight the atelectasis off? How can we help my mother to breathe freely? She is afraid of suffocation. Is there any possibility to prevent the events of apnea she's been having for some time now?
Thank you in advance for your reply.
Best regards
Monika

Reply # - September 4, 2014, 05:48 PM

Dr West
Posts: 4735

I'm sorry to say that there's no specific treatment for atalectasis or her other breathing issues, except perhaps for deep breathing/exercise, perhaps best achieved through a pulmonary rehab program.

With regard to your question of how to approach management in a patient who isn't showing progression after completion of 4-6 cycles of first-line therapy, there is no answer to a "best" approach, but I describe the leading options in these links:

http://bit.ly/MaintRx

http://cancergrace.org/lung/2014/04/13/what-is-the-value-of-maintenance…

Of course, there are also some clinical trials around the world in this setting, but they are changing all the time and depend on where you are.

Good luck.

-Dr. West

Reply # - September 5, 2014, 01:35 PM

monikakra
Posts: 9

Dear Dr West,
thank you for a quick response!
Best regards
Monika

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