NSCLC IV Adeno ALK+ resolution for brain lesion

Portal Forums Q&A, Ask Us New Questions NSCLC IV Adeno ALK+ resolution for brain lesion

This topic contains 7 replies, has 3 voices, and was last updated by JimC Forum Moderator JimC Forum Moderator 2 weeks, 6 days ago.

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September 21, 2017 at 4:47 pm  #1293155    

ikhlaq1

Hi,
My question is about my brother.
his history
Diagnosed NSCLC Adeno with ALK+ and started cisplatin + Alimta and then Alimta maintenance had a very good response and then disease progress. Started Xalkori and after a year, it stops working and again went back to Alimta for few months but after progression he has started Zykadia, it works very well from last 7 months as his lymph nodes disappear and tumour of one lung turns into scar and left lung tumour reduced in size, but as soon as he got report he had a bad rash (last couple of weeks)on his face and body and then he stop taking Zykadia and dermatologist gave him medicine for rashes but suddenly he had a swear headache And by taking Dexa it gets normal, now he had CT scan report just today and it says
There is a 41* 34 mm hyperdense lesion with areas of punctate calcification in a target like fashion within the right parietal/temporal lobe. Lesion is demonstrating intense post contrast enhancement and extensive vasogenic oedema. This is causing effacement of ipsilateral lateral ventricle and subfalcine herniation along with mid line shift. No other pathological brainparenchymal lesion is identified. Foreman Magnum and basal cisterns are capacious without any evidence of transtentorial herniation.
Conclusion. Imaging features are in keeping with metastic deposit within the right parietal/temporal lobe.
Whole brain radiations suggested.
My Questions
1. We are scared of radiations, do we have Cyberknife in option? Or Gammaknife? Which option should be the best?
2. He shouldn’t stop taking Zykadia or not? Or if he needs to stop Zykadia then is it for few days till radiation or he has to stop Zykadia and jump to Nivolumab? As his Zykadia results were better except this brain lesions?
3. If he need to carry on with Zykadia then what he should do to avoid brain lesions as Zykadia doesn’t cross brain barriers.
4. Can he get Alimta once every three months as Alimta cross brain barriers. Sorry if my questions sounds

September 22, 2017 at 8:44 am  #1293157    
JimC Forum Moderator
JimC Forum Moderator

Hi ikhlaq1,

I’m sorry to hear of the progression of your brother’s cancer. Although it is understandable to have concern about brain radiation, it is the best option to treat brain metastases. Often, when there is only 1-3 metastases present, focused radiation such as Gammaknife or Cyberknife can be used. They are pretty much the same, just different trade names for the same type of high-dose, focused radiation. When there are more brain mets present, then whole brain radiation (WBR) is favored. WBR uses a lower dose per treatment, but a greater number of treatments.

In your brother’s case there may be concern that there are more lung cancer cells in the brain which will in time produce additional metastases. With that in mind, WBR can more or less “sterilize” the brain of cancer, destroying all the cancer cells which may be present. It certainly makes sense to contact your brother’s doctor to discuss the reasons for recommending WBR rather than radiation targeting only the existing brain met.

As far as stopping Zykadia during radiation, although there isn’t a great deal of data, many oncologists will stop any systemic therapy, especially if it is known (as is Zykadia) to penetrate to blood brain barrier. As GRACE faculty member Dr. Nathan Pennell states “Both alectinib and Zykadia have been shown to have efficacy in brain metastases, in addition to the rest of the body.”http://cancergrace.org/lung/tag/zykadia/

Xalkori, on the other hand, does not tend to reach the brain, so it is possible that the brain met formed and started to grow before switching to Zykadia. Only a brain scan performed prior to the switch would help determine that.

In any event, when a systemic therapy is controlling disease in the rest of the body, it’s not uncommon to continue that therapy after treating the brain mets with radiation.

Good luck to your brother in treating the brain metastasis and keeping the rest of his cancer under control.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 29, 2017 at 8:38 am  #1293198    

ikhlaq1

Hi,
Thank you so much for your reply JimC. We tried to get brain mets resolved by Cyberknife as one of Radiologist suggested that he can do Cyberknife but when he has done Scan and checked he said that he got different mets on left side as well and he got lining on meningitis, so he said Cyberknife is not the option and he has to go for Wbr. Plus he said he can go for Cyberknife later on once they do Wbr and control the lining of the brain.
My question is that he can not switch to Alecensa to avoid radiations if Alecensa penetrate Brain barrears? Or he must have to have WBR?
Is that possible to do Cyberknife after WBR?
How to cope with side effects of WBR? Anything helpful like any medicine?
What to expect after WBR in terms of complete resolution of brain mets without Cyberknife, I know I sound bit silly as every case is different but still any chances, my brother age is 43 and he is in good spirit, he was happy with Cyberknife but he don’t want to go for WBR.
Will wait for your reply and thank you so much for your time.
Kind Regards

September 29, 2017 at 2:05 pm  #1293202    
catdander forum moderator
catdander forum moderator

ikhlaq1,

Yes, alectinib has proven to be effective in the brain for many people in whom alectinib is effective in the rest of the body. Since leptomeningeal disease (lepto, cancer in the lining of the brain) is so difficult to treat alectinib would be a leading choice of treatment. Since this is a new treatment many oncologist still want to use radiation for areas that are causing symptoms. If your brother has symptoms from the brain met outside the lining stereotactic radiation may still be an option then move on to alectinib. Again, being a new drug without much research directed at lepto in ALK + patients his oncologist may not have that info and may need to be introduced to the idea. This is an excellent example of being partner in ones own treatment (a busy medical oncologist who is treating many types of cancer may not know of this new practice that is very promising but isn’t written in standard practice flow charts.)

The following quote along with the article from the National Institute of Health may be helpful in talking to your brother’s onc. ” Additionally, alectinib was reported to have activity in ALK+ NSCLC patients with leptomeningeal disease (15,16).”

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5401676/

In case your not aware of the new conference videos this is from the Targeted Therapies in Lung Cancer Patient Forum held in Cleveland, OH a couple of weeks ago, http://cancergrace.org/lung/2017/09/28/targeted-therapies-in-lung-cancer-patient-forum-2017-presentations-and-handouts/

Keep us posted and Best of luck to your brother.
Janine

September 29, 2017 at 4:20 pm  #1293203    

ikhlaq1

Hi Janine,
Thank you so much for your prompt response. Yes you are right Oncologist is not really aware of Alectinib role. As you said Alectinib is very good for leptomeningeal, do we have option not to go for WBR at the moment and start Alectinib and if it helps to resolve lesions or meningeal from the brain then we might have option to go for cyberknife? I know Oncologist has a final say but just for an advise, do we have option to hold on WBR for time being and start taking Alectinib and if it effects we might be able to go for Cyberknife later on? As my brother is not willing to go for WBR.
Yes he is having a pain and he has started dexa and dexa is controlling his pain. Plus he had an appointment for WBR on 11th of October and we might get early appointment on 4th of October. Please advise if any chance of avoiding WBR and start Alectinib with the hope that it will resolve his brain lesion as this cross brain barrier.
Second option can he go for Alimta as Alimta cross brain barrears too? Previously he had stop Alimta because of side effects were getting worst and he got sick of continuous chemo.

But if still Alimta is not possible we would love to go for Alectinib if by any chance we can avoid WBR. Please need just an opinion as finally we have to follow Oncologist but because of possibilities at least we may convince him, as we are getting treatment privately.
Waiting for your reply.
God Bless
Kind Regards

September 30, 2017 at 6:57 am  #1293204    
JimC Forum Moderator
JimC Forum Moderator

ikhlaq1,

The standard treatment for brain metastases is radiation, which has a high rate of success and tends to provide symptom relief faster than systemic therapy (chemo or targeted therapy). Although alectinib does not have the long track record of success that radiation has, it is an option. But in making that choice it would be important to consider the current level of symptoms from the brain mets and whether those symptoms are getting worse relatively quickly. More significant/burdensome symptoms and a fast rate of progression of those symptoms would tend to tilt the balance in favor of radiation. If the mets are less symptomatic, then it’s reasonable to try alectinib. If a follow-up scan doesn’t show it to be effective or if symptoms start to get worse, then radiation would still be an option.

If Alimta was stopped due to side effects and not disease progression, then it could be tried at some point, but most likely only if the brain mets were brought under control and Alimta was being used to treat the disease in the rest of the body.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 30, 2017 at 9:09 am  #1293205    

ikhlaq1

Hi JimC,
Thank you for your reply. I am quiet clear with your explanation, only thing as we have to make decision by tomorrow as if we go for Alectinib then it takes 10 days to get it delivered. Our Cyberknife Radiologist is refusing Cyberknife just because of leptomeningeal. As you mention above Alectinib is very good for leptomeningeal then what we are thinking that he should start Alectinib for four weeks and if it resolve issue of leptomeningeal then we can go for Cyberknife to zap main lesion.
Although his symptom started couple of weeks ago, worst headache plus he had balance issue just one day but when he has started dexamethasone his symptom disappear.
My question is that is it good idea to go for Alectinib to see if it resolve leptomeningeal and then Cyberknife just to avoid WBRT for time being or it will be a mistake. Again just asking for advise, it doesn’t involve any kind of responsibility on you or your site.
Sorry for taking your lot of time, just trying hard to avoid WBRT as he is not willing. Hopefully your answer will resolve our confusion so desperately waiting for your answer.
Summary of my question ( you explained very well for WRBT and Cyberknife but Radiologist is willing to treat with Cyberknife if leptomeningeal issue resolved.

Hope I won’t bother you again and your answer will help so many patients of same type.

Kind Regards
Waiting for your answer to make decision.
Thank you

September 30, 2017 at 10:21 am  #1293206    
JimC Forum Moderator
JimC Forum Moderator

Hi khlaq1,

I understand your desire to make a good treatment decision. Here at GRACE, we can provide information but not specific advice as to what a patient should do. Your brother’s medical team has a great deal more information about his situation than you have provided or could provide, which is needed to make good therapy choices.

I will add that it is premature to state that “Alectinib is very good for leptomeningeal”. The article at the link Janine provided states that there is evidence that alectinib “was reported to have activity in ALK+ NSCLC patients with leptomeningeal disease.” The footnotes to that statement reference two reports, one which discussed a single patient, and another dealt with four patients. As you might imagine, doctors tend to write about success stories, but we don’t necessarily hear about the patients who did not respond; that information is more likely to appear in the results of large clinical trials. We don’t yet have full data on just how effective alectinib is for leptomeningeal disease in lung cancer.

In addition, the report states that “Early small data sets showed that the intracranial response rate of alectinib ranged from 40% to 57%.” Two things to note from that statement: these are small data sets, which may not reflect the experience observed in a larger group of patients, and the response rate quoted indicates that 43 to 60 percent of patients treated with alectinib did not respond.

I’m not in any way attempting to talk you out of trying alectinib, but the purpose of this site is provide relevant information to help you and your brother and his doctors make good choices. Leptomenigeal disease is difficult to treat, and the reports cited in the article are encouraging, warranting further study, but we just don’t have enough data at this point.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

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