Log in or Register to participate in these discussions

Non small cell lung cancer patients

Non small cell lung cancer patients

Posted by Humming bird on Apr 8, 2019 6:26 pm

I was diagnosed have lung cancer 2 years ago. Taken the first line cancer drug Irissa for 23 months. Now I must change to a new drug as IRESSA no longer can counter the cancer cells. I am looking forward to know more about their experience who had been in similar situations before. Thanks. Any advice are welcome.

Re: Non small cell lung cancer patients

Posted by Lianne_adminCCS on Apr 8, 2019 6:47 pm

Welcome Humming bird‍ 

I am not familiar with IRESSA. Do you mind if I ask what medication you will be changed to? Perhaps others will then be able to share any experience they may have with it
Have your doctors given you any indication of what to expect from the new drug?

Lianne
 

Re: Non small cell lung cancer patients

Posted by Humming bird on Apr 8, 2019 8:26 pm

TAGRISSO is the new drug given to me 4 days ago by my oncologist. IRESSA is a gefitinib tablet and TAGRISSO is a osimertinib tablet. I was told that the new drug will give me 6 to 12 months, after that I may enter chemo treatment. That’s all I know at this point. 

Re: Non small cell lung cancer patients

Posted by jorola on Apr 9, 2019 7:40 am

Hi Humming bird‍ 
Welcome to the site!
Tagrisso also known as  Osimertinib is one of the newest drugs approved to fight lung cancer.
Here are some links from reputable sites on more information:
https://www.cancer.gov/about-cancer/treatment/drugs/osimertinib
https://www.cancer.gov/publications/dictionaries/cancer-terms/def/tagrisso
https://bodyandhealth.canada.com/drug/getdrug/tagrisso
I am trying to recall if other members  are on this. Ugh too early in the morning 😉I shall endeavour to search my memory and get back to you today.
I am hoping in the meantime others with experience with this medication will hop on here and share their experience.
Are there any other questions or concerns you have about lung cancer? There are, unfortunately, a number of us with experience on here.
I am glad you found this place. Be sure to explore it. There is tonnes of information on here and great people to meet.
Have an awesome day!
Jodie

Re: Non small cell lung cancer patients

Posted by Humming bird on Apr 9, 2019 11:18 am

Thank you Jodie for yr message. Additional information I am looking for is ‘high protein’ food for cancer patients to take in order to gain weight, to get ready for chemo. Some references and advice are welcome.

Actually, I was searching G for info on this subject. But some how I came cross to see CCS which is one of my 4 donations organizations. I trust CCS and registered, here am I. Looking forward to hear from you. Thank you again.

Re: Non small cell lung cancer patients

Posted by Momordica on Apr 9, 2019 11:42 am

Good day Hummingbird‍   I thank the discussions in the forums here as they provide a lot of information and support for those who are in need.

My wife was diagnosed with Non small cell lung cancer in 2012.  After undergoing lobectomy, chemotherapy and radiation, they found her cancer had come up again.  She was given Iressa in either late 2013 or early 2014 until around 2016.  When they figured that Iressa was no longer effective, then they switched her over to Tagrisso, which was a trial drug then.  She was basically one of those in the clinical trials, with great thanks to her systemic oncologist who got her into the study.  So, she has been taking Tagrisso since December 2016.

With regard to experience with Tagrisso, my wife mentioned the side effects were much less than those of Iressa.  She has diarrhea sometimes so she take immodium when she needs to and that definitely helps.  She was active while on the drug.  Appetite was good and she was maintaining her weight. She was told she does not have any dietary restriction except avoid grapefruit and pomelo as they affect the efficacy of the drug. This is based on my experience as her caregiver.  She religiously took her daily pill.  She was able to travel with out any problem except of course she has to consider if she feels she is going to have diarrhea.  Other than that, everything was good.  

Her oncologist did mention that if and when the Tagrisso had lost its ability to control the cancer, then her next option would be chemotherapy again.  

John

Re: Non small cell lung cancer patients

Posted by WestCoastSailor on Apr 9, 2019 11:49 am

Humming bird‍ 

Welcome

I'm a little further down on the NSCLC chain being at 3C. Still I had aggressive chemo/radiation to get me ready for durvalumab and that gave me some eating challenges. I was struggling with swallowing issues and the cancer center hooked me up with a dietician. I should say that I have tracked my food for years with an app on my phone so I knew exactly what I was eating and that made the process of figuring out how to adjust it easier. I had lost 40 lbs over the previous seven years slowly and steadily which is the weight loss should happen.  So the switch up to hold my weight was a challenge.

My goal was about 25% protein on 3,000 calories. A real switch from 15 to 20% on 1700 calories.

There were some simple things though that helped. Peanut butter became my friend. Part of it was the swallowing issues but mostly it was just a good source of protein and calories. I'm kind of an experimental guy so I added almond butter and hazelnut spread to my repertoire too. Nuts were kind of an unconventional source of protein and got added to salads as well.

I'm not a big milk drinker. On my cereal in the morning (Oatmeal in the winter and shreddies in the summer) is pretty much it. So adding a tablespoon of milk powder to it was an easy way to boost protein. I found a few other places to throw in an extra scoop of powder too. Sauces, soups and gravies often work and they help with calories too.

And I had days where I just waved the white flag and drank Boost or Ensure. My favorite trick was to make hot chocolate with it and top it with mini-marshmallows. Sometimes you just need the comfort.

Stay in touch. I don't know anybody else on Irrisa or Tagrisso and that's likely where I'm headed EGFR+ when the durvalumab stops working.

Angus

Re: Non small cell lung cancer patients

Posted by Lianne_adminCCS on Apr 9, 2019 12:28 pm

Thank you jorolaMomordica‍ and WestCoastSailor‍ for sharing your experiences to help Humming bird‍ ‍ . Just one of so many examples how we can all help each other.

Humming bird‍ ‍ I will also give you a link here to one of our groups Eating well when you have cancer .
I am not sure what province you are in, but every province has a health line. For example in BC it is called healthlinkbc.ca 8-1-1 and they have an oncology dietician/nutritionist as a resource. You may want to see if your province has something similar. Most cancer centres will also be able to help in this regard as well.

Wishing you well. Keep us posted as you are able 

Lianne

 

Re: Non small cell lung cancer patients

Posted by Humming bird on Apr 9, 2019 12:39 pm

Thanks. I am in Richmond, BC. I wil click on the links you gave.

Re: Non small cell lung cancer patients

Posted by jorola on Apr 9, 2019 8:05 pm

Hi again Humming bird‍ 
I am going to tag Rosie39Carolmcn‍ and marescow‍ who have all mentioned they have been on Tagrisso. I am hoping you all can connect up.
As for high protein diet well my husband just got a lot of steak LOL. I know he used the excuse well. Often your cancer clinic has nutritionists available for you to speak to. Maybe check into that.
Hope this helps!
Jodie

Re: Non small cell lung cancer patients

Posted by marescow on Apr 10, 2019 11:28 am

Hi there, I have been on Tagrisso for 21 months & doing fine. I am stable. I go for CT scans every 2-3 months- ECG every few visits & a brain CT every 9 months or so. I am stage 4 lung cancer but feel good. I can do everything I ever did it seems. I have a bout od diarrhea every month or so, but for the first year had several explosions- even when shopping. Since I have taken Calcium & vit .D for my osteopenia my bowels have changed for the good. I told my onc. that it might be worth telling other patients, but he said it is only me & a study of 1. Seeing as Calcium usually causes constipation, I felt it would help & it does. Other than that I have dry skin, thin nails, cracked fingers- especially in the winter- I use liquid bandage for that. I'm happy to answer any questions- this seems to be a wonder drug & is a brain barrier too. I travel for expended times- 5 weeks or so with no problem. It's a daily pill & we are supposed to treat our disease like a chronic disease like diabetes.

Re: Non small cell lung cancer patients

Posted by Jlo on Apr 10, 2019 3:38 pm

Hi Hummingbird:

i used the Healthlink resources in B.C. and found that they were very helpful. The dietician reviewed my diet to ensure I was getting enough protein. Like you I was concerned about weight loss, so I asked my oncologist for a referral.   I found that there was a day or two after chemo when I was not hungry so I just drank a lot of fluids and ate several snacks.  I don't recommend Ensure or Boost as I was appalled that they were full of sugar and chemicals.  The receipes the dietician provided were great.  I was treated in Surrey. B. C.  

There is also Inspire Health in Vancouver who have a dietician on hand.  I didn't go myself, but heard they were very good.  Best wishes with your journey.

jlo (Joan)


  

Re: Non small cell lung cancer patients

Posted by Lacey_adminCCS on Apr 15, 2019 10:04 am

gladup‍ - I just wanted to tag you into this thread and introduce you to these wonderful folks who have a similar diagnosis. To tag someone or reply to them hit reply and type the @ symbol and their username.

Re: Non small cell lung cancer patients

Posted by gladup on Apr 15, 2019 6:08 pm

Lacey_adminCCS:
gladup‍ - I just wanted to tag you into this thread and introduce you to these wonderful folks who have a similar diagnosis. To tag someone or reply to them hit reply and type the @ symbol and their username.

ok
 

Share with your friends: