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Fadi

Please help me help my mom

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Hi all,
I'm all over the internet search in desperation trying to find anything or something to help my mom. I stumbled upon this forum and I'm hoping someone can provide me with glimpse of hope so I can help my mom.

My mom was diagnosed with stage 4 NSCA in her left lung. She did 5 courses of chemo with immunotherapy which helped slow down the growth but it wasn't shrinking. The doctor suggested to increase the dosage but gave my mom 10% of shrinkage. As a result, my mom wanted to give alternative treatment a go and so far she did 4 sessions and we don't know yet whether it's working or not.

I keep reading online that there clinical trials that offer immunotherapy and many people say it works, anyone has more information about this?

Others say CBD oil would also work, anyone tried it? How/where to administer?

Please provide your input. My mom is the first family member diagnosed with Cancer and I don't know what else to do.

My mom appreciates your time and help. Any further information you need from me I would happily provide.

Thank you.

 

 

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Hello @Fadi.  I’m very sorry to hear about your mom’s diagnosis.  What alternative treatment plan has your mom tried?   

Has your mom been tested for any genetic mutations or biomarkers?   Having that done can help identify more specific treatments.   
 

 

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12 hours ago, Curt said:

Hello @Fadi.  I’m very sorry to hear about your mom’s diagnosis.  What alternative treatment plan has your mom tried?   

Has your mom been tested for any genetic mutations or biomarkers?   Having that done can help identify more specific treatments.   
 

 

Hi Curt,
Thank you for your kind words.
Please see attached file for her current treatment.
I will get you the information requested shortly.

IMG_20200121_165637486(CS).jpg.png

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Hi Fadi,

I want to make sure I know what kind of cancer your mom has - I am assuming NSCA means non-small cell adenocarcinoma????  I try to stay up on all types of lung cancer, but some get past me and just want to make sure I know what I am speaking to.

If it is adenocarcinoma, that is what my mom had, originally staged 3a and has had 1 recurrence since original diagnosis 4 years ago.  She was on immunotherapy (Keytruda) and chemo (alimta = carbo) for 6 sessions and proceeded to immunotherapy only for about 1 year afterward.  While my mom saw shrinkage within 3 months, many do not see results as quickly.  In fact, many folks (my mom included) see "growth" early in immunotherapy treatment.  Ultimately the cancer becomes inflamed and swells due to being attacked by the immune system and looks like it is growing.  My mom had this happen after her initial tumor shrank, but other areas of her lung "grew".  Ultimately, immunotherapy is not a quick fix, nor is it a quick treatment plan.  People usually take it as long as their body can tolerate it or if docs see it isn't working.  

While chemo + immunotherapy is a standard of care for some types of lung cancer, it is not standard for all types.  Has your mom had biomarker testing/gene mutation testing of her cancer? These tests tell docs if there are any markers within the cancer cells that make it more or less affected by certain treatments.  These tests are becoming standard here in the US, but some people still need to ask for them.  Be sure your mom requests these tests if she has not had them.

While it is easy to lose hope when a first line of treatment does not give you the results you are looking for, that doesn't mean the fight is over.  Many lung cancer survivors have had to go through several different types of treatment to keep the cancer at bay.  Today, lung cancer is being treated as a long term, chronic condition rather than a death sentence.  There are so many different types of treatment and mixes of treatment modalities that it's hopeful that docs can find a "cocktail" that helps keep the cancer controlled or shrink away.  The road is not easy, but many people on these forums are triumphant in their journey.  So, there is hope.

Finally, I am not familiar with alternative treatments and will not try to speak to it.  I can tell you that my mom takes a CBD tincture twice daily for chronic pain (not cancer related).  She did not begin taking it until well after her lung cancer treatment ended.  She spoke to all of her docs before starting it and they agreed that if she wanted to try it, she should.  But if she needed to go back onto immunotherapy or do a clinical trial for her lung cancer, she would need to stop using it as they don't know if/how it can interact with cancer drugs.

Hope this helps a bit,

Take Care,

Steff

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Fadi,

I gather your mom is being treated outside the Canadian Medical system by Sunridge Medical Wellness Center. The attached file you provided shows what are collectively known as naturopath treatments. There are touted success stories about naturopath curative treatments for cancer and other diseases, but there are also many treatment disappointments. Here is a weblink that has more details about naturopathic medicine.  

My difficulty with suggesting clinical trials is I do not know the Canadian trial system. The US and Canada have different medicals systems and differing approaches to trial eligibility, methods, and practices. One of our forum members, Robert Macaulay, started a forum on his experience with immunotherapy drug Durvalumab as a clinical trial participant. Here is where you find his discussion board. Robert is a Canadian and seems to have insight into how the Canadians conduct trials. He might also have information about how to find where and when immunotherapy trials are being conducted in Canadian Medical Centers. When you pull up the Durvalumab link, hover your cursor over Robert's name and a window opens with a message link. You can use this link to write Robert a private, email like, message asking for his insight into Canadian immunotherapy trials. 

I wish your mom the best and hope you find an immunotherapy trial that arrests her cancer.

Stay the course.

Tom

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Thank you all for your responses and so sorry for my late response. My dad was looking for the reports and finally found them.
My mom decided to stop her nephropathy treatment in Arizona and go back to Toronto to continue her conventional treatment.

I'm including a link to screenshots of bio-marker testing/gene mutation reports as requested.
Please let me know if you need anything else.
Looking forward to your responses.

On 1/29/2020 at 10:05 AM, Steff said:

I want to make sure I know what kind of cancer your mom has - I am assuming NSCA means non-small cell adenocarcinoma????  I try to stay up on all types of lung cancer, but some get past me and just want to make sure I know what I am speaking to.

Steff, Yes it is.

Tom, Thank you for the information and your kind words.

Bio-Maker/Gene Mutation Reports

Edited by Fadi
Included Link to Reports

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Hi Fadi,

 

Here is a link to the LUNGevity Clinical Trial Finder.  https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

Hopefully that can get you started in the right direction.

Also, this is the HELPLine that is staffed by oncology social workers. https://lungevity.org/for-patients-caregivers/support-services/lung-cancer-helpline  They might also be able to help you find services in your area.

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Just thought of sharing my findings for others to benefit form.

I found this drug which sounds promising for MET Exon 14 Skipping. We will discuss with the oncologist.

Tyrosine-kinase inhibitor
https://www.targetedonc.com/news/met-inhibitors-may-prolong-survival-in-met-exon-14-mutated-nsclc

Thank you all for your responses and kind words. Please keep me in mind should you hear anything that might help my mom. She is in a lot of pain.

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Another update:

Oncologist will start my mom on TKI medication. I'm not happy with the Oncologist handling of my mom's situation. She should have given my mom this drug since day 1. First she puts my mom on a target therapy that would not target my mom cancer cells gene mutation, then on another drug that did not do anything and now, finally on TKI for the MET exon 14 skipping. Very frustrating.

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