Judy M2

Hi Judy, 
Thank you so much, I’d really appreciate it if you have referrals to new doctors and palliative care.  I apologize for the late reply, cause of thanksgiving and doing chemo this week. The palliative care physician in might be a bit far for me since I live in Lakeside. My oncologist here in La Mesa, Dr. Kai Zu, although he might be a good doctor, but his bedside manner I find is a bit dismissive. He mentioned to a pulmonologist that I was “incurable”, who later relayed the message to me, this was when I was hospitalized in the beginning of November when I found out the cancer spread to my other lung. It’s concerning, given he made this comment before I even started chemotherapy. 
 
Anyway, I just hope to get a second or third opinion from a medical professional who also cares. I’d appreciate your referrals for oncologists, if you have any that are not to far from central San Diego. I hope you had a good Thanksgiving and a joyful Christmas with your family.
Sincerely,
Rosie

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

Great news, Karen! 

Rosie, there are other pain meds besides oxy and morphine. I can't tolerate either of them, so my palliative care doctor prescribed methadone first, and she switched me to a Fentanyl patch when I went on Tagrisso. I'm happy to give you my palliative care doctor's contact info, I will send it in a private message. She has privileges at the big Palomar Hospital in Escondido. 
My husband is finding that CBD oil helps with his painful hip that needs replacement. I'll get the specifics to you also. 
I'm not sure what oncologist you go to, but if you ever want to make a switch or need a second opinion, there are a couple of names I could give you. 

Great news, Karen! 

Great news, Karen! 

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 
https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 
https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 
https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

I just shared this with the EGFR Resisters Group on Facebook (I'm not in the Exon 20 group). A local oncologist recently presented the findings. One of the EGFR members is in this trial. In California it's available in San Diego, Irvine and Whittier. 
https://www.targetedonc.com/view/sunvozertinib-shows-activity-and-tolerability-in-egfr-exon-20-nsclc

MzShannon, it's really vital to wait until all test results are in so that your mom's doctor can create the appropriate treatment plan. You wouldn't want to start a treatment only to find it was the wrong one or unnecessary. There are so many treatment options these days. One thing cancer teaches us is how to wait. It's a hard lesson, to be sure. 

Like Justin, I had terrible esophagitis after radiation. I couldn't eat or drink, and I couldn't get effective pain management for a while (long story). 
I basically lived on Ensure or Boost Soothe for a few months. I never knew what I could tolerate from minute to minute. People recommend smoothies but I can't stand them. You need a bland diet for now, and if all you can manage is ice cream, then so be it. 
My palliative care doctor helped me so much with pain management, but they do more than that by helping manage side effects. And THC can also help minimize some side effects too. 
When I was so sick, I was miserable and didn't think I could survive, but here I am almost 3 years later. Try to take things one day at a time, even one hour at a time. If your oncologist gave you a prescription for anti-anxiety meds, I recommend taking them. They're sort of standard for chemo patients. Hang in there. 

Hi
Thank you everyone for your kind messages and support throughout my journey,all of you have really helped me and I have needed your support along with my family and friends who have been absolutely fantastic and so loving and caring and strong for me and each other, they really are a special family that I have been lucky to be part of and really couldn't have done it without them and I can't forget my lovely puppy bonnie who I got at the start of my cancer battle who really has made me so happy and been there every step of the way,
Hopefully now I can just get on with living and enjoying my life,
Thank you again all the best and take care Justin x 

I just learned that prominent EGFR Resister Annabelle Gurwitch (who is on Tagrisso for Stage IV lung cancer) has had ongoing UTIs for 1.5 years and is switching to a new gynecologist. She may post here but she definitely posts on the Facebook group EGFR Resisters Lung Cancer Patient Group. I've asked her to let us know what her new doctor says. 

Great news, Justin! Better days are ahead. Enjoy the little things. 

Thanks for the encouragement.  I was in the waiting room the other day and a stem cell replacement patient was there.  Poor guy had seven months of chemo and countless replacement therapy cycles.  I got a sense of my pain isn’t nearly as bad so mind over matter.  Two weeks in now, no hair loss and swallowing is fine.  As you say, five weeks of hell for years of health.  I’m trying, just had a mental meltdown.  Love everyone’s encouragement.  Kindly

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

Great news, Justin! Better days are ahead. Enjoy the little things. 

I just learned that prominent EGFR Resister Annabelle Gurwitch (who is on Tagrisso for Stage IV lung cancer) has had ongoing UTIs for 1.5 years and is switching to a new gynecologist. She may post here but she definitely posts on the Facebook group EGFR Resisters Lung Cancer Patient Group. I've asked her to let us know what her new doctor says. 

Great news, Justin! Better days are ahead. Enjoy the little things. 

Hi 
I really hope you get some good news from the pet scan,I know how worrying it is but it's great news that the other lesions are no longer viable and hopefully these others can be sorted out soon, I recently had a tumor removed and am hoping no more come up so I have an idea of how you and your wife feel and you are right all we can do is take one day at a time,
All the best Take care Justin 

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

Here in San Diego we have world-class lung cancer care. I've sent Rosie some contacts by private message.
I agree with Karen about use of the word "terminal". I'm fact, when I was diagnosed, my primary doctor said that lung cancer isn't a death sentence anymore. And my oncologist is such a great cheerleader that I've never felt like he'd just give up on me. 

Lots of Tagrisso folks adhere to a BRAT diet. And I personally think that consuming dairy without a Lactase enzyme causes problems. 
I don't think I've heard any complaints about UTIs. However, if your side effects are intolerable, ask your oncologist about reducing your dosage to 40 mg. This has to be done with a new prescription, you cannot cut the pills in half. I know of many people who've had success with the reduced dosage. Maybe you can give your system a rest and try to increase the dosage later.