Update on my sister's visit with the oncologist today.

[2020CURE]

We met with the oncologist late this morning. All of my sister's markers for the immunotherapy came in negative so she is not a candidate for the treatment. There is one additional test to identify the EGFR marker (I guess that's what is called), for the targeted therapy. We are hoping that that will be positive, and we should have that result by Monday. We are also making an appointment with a psychiatrist to prescribe an antidepressant to combat her depression. She was prescribed diuretics since her legs are really swollen and something for her appetite since she is not wanting to eat much. I wish there was something more we could do to make her feel better. I brought her a chocolate milkshake from McDonalds' yesterday and she loved it! I'm telling my niece to make her milkshakes at home with ice cream, milk, fruits, etc. Anything with enough calories.

Thank you so much for being here for us! Please keep the prayers coming......

Betty

[2020CURE]

The EGFR test came back positive and my sister will be able to take a pill for a targeted therapy. We are so greatful for this development - prayers work! We will know more in the next fee days about the particular pill they will recommend - we now see light at the end of the tunnel! Grateful!

Betty

[Denzie Moderator Volunteer in reply to 2020CURE]

Wonderful news. And you are very smart about that milkshake. Anything that will help increase her weight is good. There are also appetite stimulants-Marinol and Megace- that can help.

[JeanE41]

That is great news. Targeted therapy is so much easier on the body than chemo. I hope it works well for her.

[2020CURE in reply to JeanE41]

Thank you Jean!!!!

Betty

[woonsin]

Having target medicine is better than immunotherapy treatment.Congratulation!

[2020CURE in reply to woonsin]

Thank you! Xalkori is what they plan on putting her on.

[2020CURE in reply to woonsin]

Why is target medicine better than immunotherapy?

[Denzie Moderator Volunteer in reply to 2020CURE]

Approval for immunotherapy was fast tracked and they are still gathering data on side effects and who will benefit from it the most.

The Xalkori that your mom is getting has much more information about it detailed. I know several people who’ve been on it for 3 & 4 years versus the 2 years immunotherapy patients are permitted to use their meds.

[2020CURE in reply to Denzie]

Thanks Denzie! Good to know!

[Lovey1000 in reply to Denzie]

My oncologist offered me immunotherapy... why my pet scan shows NED.. he said after 30 treatments of radiation.. not sure why he wants me to do immunotherapy ... any idea?

[Denzie Moderator Volunteer in reply to Lovey1000]

That’s something you need to ask your oncologist. If there’s more questions let’s do private messages so we don’t hijack this thread.

[scifiknitter Blogger in reply to 2020CURE]

Betty, for those of us with driver mutations, like your sister, they are finding that we have a low response rate to immunotherapy. A few people with ALK, EGFR, etc. do respond to immunotherapy, but they are the exceptions. It is currently recommended that we try immunotherapy only after exhausting targeted therapies and chemotherapy.

People with ALK mutations now have excellent drugs that follow Xalkori, so your sister's prospects for a good long time before she has to think about immunotherapy are very good.

Anita

[2020CURE in reply to scifiknitter]

Thank you Anita, We are hopeful with this treatment - we just got everything finalized and approved with Medicare and insurance and tomorrow we have an appointment with the oncologist to move forward. She just has to eat more to get strong to deal with the meds. One day at a time. Thanks again for your input!

Betty

[ronnie1943]

Hi,...My name is Lynn, my husband Sam is waiting to be approved for fincial help for targeted therapy. 🙏🏻 It's pill form and his oncologist says that you take three pills at once each day. We figured out at that price the pills would cost a half a million a year. Thats just crazy!! The pill if we can get it is called Cabozantinib. I did read that targeted therapy is a real game changer for cancer!! His oncologist did tell us that by the time targeted therapy were to quit working they will have something new. Always something in the making! Keep us posted!!

Best wishes and prayers coming be your way!!

Sincerely, Lynn.Pa

[2020CURE in reply to ronnie1943]

Thank you Ronnie, Xalkori is what they plan on putting her on. I wish your husband much love and strong healing thoughts!!!

[FtB_Peggy]

Betty, such good news, will pray for the best results. Thank you so much for keeping us updated. We all hold you and your sister in our thoughts.

[2020CURE in reply to FtB_Peggy]

Thank you Peggy! Xalkori is what they plan on putting her on.

[anrean]

So great to hear!! Thank you for keeping us updated! I agree with Denzie - it doesn't matter what she eats so long as she gets calories. My granny ate rice pudding every day - better she eat that and take a vitamin pill than not eat at all!

Praying for you and your sister. Remember, you cannot be a good care taker if you burn yourself out. Take time that you need to recharge your batteries.

Lauri-Anne

[2020CURE in reply to anrean]

Thanks so much Lauri-Anne

[ronnie1943]

Hi.i accidentally deleted all my emails, Betty was it you that was going to send me some information on fincial help for my husband to get the targeted therapy.?? Someone sent there email address and I deleted it?? I'm new at all this technology and at 74 I'm trying to teach myself. I appreciate all the help I can get. My email address is: [e-mail]

That's such great news about your sister!! I've read so Much positive information about targeted therapy. I'm anxious for my husband to qualify for financial help. 🙏🏻 please let me know and all of us which targeted therapy pill your sister will be taking .

Prayers to all!! 🙏🏻 Lynn Pa.

[2020CURE in reply to ronnie1943]

Sorry Lynn, I was not the one that sent you the info. My sister has been prescribed Xalkori which I was asking about. All of this is foreign to me too, so anything I can do to help I’ll try to help you with. Much love your way,

Betty

[ronnie1943 in reply to 2020CURE]

Boy, I'm a real mess!!! Lol!! Thank you so much for getting back to me.... So happy they are getting your sister on the right medication. My husbands oncologist gives much hope in that she says when one medication tops working there is more in the making everyday! Keep me and all on the site posted, much prayers and love coming your way also...

Take care, Love, Lynn Pa.

[2020CURE in reply to ronnie1943]

Thank you Lynn, you’re not a mess. It’s really confusing and a lot to grasp for all of us. We’re all in this together! ❤️

[ronnie1943]

Thank you also!! It's so good to know that we all have each other for support and know that there are people who really know what we are going through and care. Have a nice weekend, keep in touch. Love, Lynn

[Vekim2018]

Betty.. I had pretty much same thing happen re the EGFR mutations and other KPI's all of which were negative meaning I'm not 'qualified' or a good candidate to use immunotherapy.. Drs are saying I have stage IV lung cancer which has metastasized into a lymph node RT side of neck an another in my chest area. However, they can't find anything in my lungs?! Even tho' reports and PET scan were negative for the needed indicators the Dr still wanted my treatment to include "Keytruda" with alimta and carbo platin. A 2nd opinion Dr has told me I don't really need the Keytruda and can 'opt out' to include it, if 'I' chose after I asked why is being included if the factors needed to make it effective are not present. When I asked what's the best case scenario being treated with chemo can bring none of the Drs know for certain they just tell me.. maybe a few months, maybe a few years more life than if you choose no chemo therapy .. doesn't seem worth the time, trouble and expense so I choose not to go with it for now .. looking into CBD oil treatment for now .. have you looked into CBD at all?

[2020CURE in reply to Vekim2018]

Hi Vekim2018, I am not too well versed in lung cancer - just beginning; I have done some research on-line and have received lots of information and support in this Health Unlocked support group. The people here are great! I understand that targeted therapy (pills) are better than immunotherapy and it shows reduction in the tumors by 50% to 60% which I think is phenomenal.

Someone in this site directed me to a website verywell.com; specifically the following link: verywell.com/alk-positive-l...

My sister is being prescribed Xalkori and is now going thru the Medicate/Insurance approval process through the cancer center. I am not too sure about why your cancer has been identified as lung cancer if there are no tumors in the lung - is there fluid or something outside the lung that they have been able to identify it like that? You need to ask lots of questions with these doctors now-a-days. My sister is in Miami, Florida and going to a brand new cancer center (Baptist Health through Baptist Hospital) where the attending oncologist is also a researcher. Her cancer was detected at the regular hospital's emergency room when I took her close to a month ago as she was having difficult breathing and walking. Her cancer is in a tumor in the right lung which has metastasized to the pleura (membrane that outlines the lungs). She had so much liquid there (pleural effusion) that it had to be removed via surgery (VATS) where they removed her spleen, fluid and at the same time discovered that the cancer had metastasized to the outside of the lung. Quite a mess as her right lung is now very small as a result of the effusion.

Are you going to a hospital that has a specialized cancer center? You might want to research a third doctor and get a third opinion. But most of all, I find that researching on my own helps tremendously and lets me ask many questions. I learned this through experience for a carcinoid tumor prognosis as well as prostate cancer prognosis for my husband. Everything now thankfully under control. At the time I found on-line the most incredible individual who is retired and now an advocate for prostate cancer. Through him I found the right doctor for the surgery and also the right type of testing, etc. I still communicate with him and anyone with prostate cancer I send his way.

Wishing you all the best for a successful recovery!!!

Betty

[Cerwin]

Hi Mitchell. Positivity is her best medicine. It’s very important

[2020CURE in reply to Cerwin]

I wish I could inject a big amount of positivity in my sister. She’s about given up. Hopefully, the antidepressant she started taking will help. Hopeful!