Judy M2

Thank you Judy M2! I researched but did not find this site. Very helpful. 

Hi everyone 
I had the appointment yesterday with the neurosurgeon and they want to to a craniotomy this Friday to remove the tumor, I'm really hoping that it will work this time but I'm absolutely worried sick about the procedure, they have said my right hand side will probably get worse before it gets better,has anyone else had this done and any advice on how to get over the anxiety and recovery process 
Hope your all well 
Take care Justin 

That is my hope anything besides progression or it spreading will be a win in my books

According to drugs.com, there is a moderate risk of interaction. You'll want to ask your cardiologist about this. 
https://www.drugs.com/interactions-check.php?drug_list=4151-0,3438-16026

My first scan was a couple of weeks after chemo and radiation ended, and there was actually so much inflammation and scarring that it was hard for the radiologist to read. I had gradual improvements. Remember that stable is good. 
Wishing success for your mom! 

My first scan was a couple of weeks after chemo and radiation ended, and there was actually so much inflammation and scarring that it was hard for the radiologist to read. I had gradual improvements. Remember that stable is good. 
Wishing success for your mom! 

Hi Karen,
Thank you for your message, I really do feel a bit better about it all now I'm just worried that they won't offer me any treatment and worried about having the operation if they do it, I hate being away from my family and don't want to go to hospital basically I'm a coward lol, 
I think once I have the appointment on Monday I'll feel like something is being done and get it out the way and move forward, I wish I could go to the West Coast of America, I have been to the South a few times because I love elvis so spent alot of time in gracelands lol, I would really like to go to montana one day if it's possible, I bet it's lovely where you live I think I was supposed to be American I have owned quite a lot of American cars and still have a couple now 
Take care Justin x

When we sold my childhood (and adult) home 8 years ago, a required radon test detected radon in the basement. No surprise, it was an older home in the Northeast. But I was the only person in the family who got lung cancer. Turns out that my EGFR+ lung cancer was presumably caused by post-9/11 toxic exposure. 
Like Karen said, you could drive yourself nuts trying to figure out the cause. The fact is that our DNA happened to get messed up, possibly by environmental causes. Don't blame yourself. In the last 3 years, I've let go of worry, regret and blaming myself. My cancer journey has not been easy but I actually consider myself very fortunate. 
By the way, here in the U.S., the American Lung Association endeavors to raise awareness of radon:
https://www.lung.org/clean-air/at-home/indoor-air-pollutants/radon

When we sold my childhood (and adult) home 8 years ago, a required radon test detected radon in the basement. No surprise, it was an older home in the Northeast. But I was the only person in the family who got lung cancer. Turns out that my EGFR+ lung cancer was presumably caused by post-9/11 toxic exposure. 
Like Karen said, you could drive yourself nuts trying to figure out the cause. The fact is that our DNA happened to get messed up, possibly by environmental causes. Don't blame yourself. In the last 3 years, I've let go of worry, regret and blaming myself. My cancer journey has not been easy but I actually consider myself very fortunate. 
By the way, here in the U.S., the American Lung Association endeavors to raise awareness of radon:
https://www.lung.org/clean-air/at-home/indoor-air-pollutants/radon

Same with me. I'm a Stage IIIB 3-year survivor so far and feel good. Let's keep going! 

Same with me. I'm a Stage IIIB 3-year survivor so far and feel good. Let's keep going! 

Hi Sally and welcome. I had a severe case of esophagitis that started 2 weeks into a 6-week course of radiation. The mistake I made was not getting a palliative care specialist on my team before treatments started. I just didn't know any better. My radiation oncologist was sympathetic but unhelpful. 
I can't tolerate oxycodone or morphine. My wonderful palliative care doctor prescribed methadone for the pain, which helped tremendously. After I went on a targeted therapy, I was switched to a Fentanyl patch. My esophagitis took 5 months to heal and then I was discharged from palliative care. (During the time I had esophagitis I had acid reflux as well.)
For swallowing difficulties, there are swallowing therapists who should be able to help. The foods you can tolerate might change from hour to hour. It's best to stay with soft, non-acidic foods. 
Many people only have esophagitis for a few weeks. I'm happy to report that mine healed completely, as confirmed by an upper GI endoscopy. 
I was diagnosed with Stage 3b EGFR+ adenocarcinoma in October 2019. I had 6x chemo (carboplatin and taxol), 30x radiation and am now on a targeted therapy. I have been through the absolute worst but am grateful to be cancer-free 3 years after diagnosis. 
My best advice is to get pain management from a palliative care doctor and also see a swallowing therapist. I hope your side effects heal quickly. 

Same with me. I'm a Stage IIIB 3-year survivor so far and feel good. Let's keep going! 

Being a Caregiver for a Parent
https://www.lungevity.org/blogs/being-caregiver-for-parent
Posted on October 25, 2022
Nick Baker, Website Content Manager
Being a caregiver for a parent means helping in different ways and playing different roles. For Aimee Yairi, it started when her dad told her that he was having a lingering cough in early 2021.  The fear was that he had caught COVID. His primary care physician continued ordering x-rays for her father and prescribing different medications for pneumonia, asthma, and GERD—but resisted sending him to a specialist. Aimee advocated for her father to get a CT scan. And that was when the 7 cm tumor was discovered. 
Despite her father living in the major metropolitan area of Honolulu, Aimee knew that he had to seek specialized care and time was of the essence. Within one week of the CT scan results, Aimee’s father was on a plane from Hawaii to seek care in the San Francisco Bay Area, where Aimee and her siblings lived. It was May of 2021 when he was officially diagnosed with non-small cell lung cancer (NSCLC).   
Aimee’s First Steps in Being a Caregiver for a Parent 
Upon arriving in the San Francisco Bay Area, Aimee encouraged her father to seek care at a local academic center and then subsequently, a second opinion at a different nearby academic center. This was the first step in her caregiving journey, and she became the primary caregiver and advocate for her parent. 
“The first few months after the diagnosis were taxing and so intense. I was very overwhelmed but incredibly grateful for the support network I found,” says Aimee. 
Never did Aimee expect her professional background in the biotech and pharmaceutical area, focused on oncology, would help her with the medically focused role she would take on in her father’s care. She knew that connecting with lung cancer organizations like LUNGevity would help her learn how to support her dad in many additional ways. 
Her key responsibilities were finding the right doctors, communicating with medical staff because her father is a non-native English speaker, researching treatment options and clinical trials, joining support groups, finding patient resources, managing doctor’s visits, and helping her dad understand treatment options, risks, and possible outcomes, including the role of comprehensive biomarker testing. 
This is how they found the EGFR-mutation, specifically exon deletion 19, in his lung cancer tissue. And with this new information, they could offer him a more tailored plan including targeted treatment, rather than traditional chemotherapy, with or without radiation.  
“One thing I want to get across about treatment today is that lung cancer is diverse and heterogeneous. There are many types of lung cancer and many treatment options. But, you need to know the type of lung cancer you’re dealing with. Comprehensive biomarker testing gives you that information so that you may have the option of a treatment designed to treat your type of lung cancer,” says Aimee. 
Changing Roles as Treatment Changes 
At this point, Aimee’s role of being a caregiver for a patient expanded. She went from managing her father’s doctor appointments to learning about the treatment options he had moving forward. 
“It’s important people make the decisions that are best for them and their families. At the time of diagnosis, my father was 78 years old, and quality of life was important to him as well as to our family. At the same time, I wanted to know as much as possible about treatment options for this type of lung cancer, including what was not yet standard of care and specifically what clinical trial options were there for my dad. I knew my dad had choices. I just had to figure out what choices he had and to share them with him so that he could make an informed decision,” says Aimee. 
This is an example of how being a caregiver for a parent is different for everyone. It’s about working as a team where each person takes on different roles to form a strong unit. Aimee knew her strengths, such as understanding and being able to navigate a complicated healthcare system and the complexities of oncology care in the community vs. academic settings.   
She also knew to ask his healthcare teams about clinical trials and learned of a local one for patients with EGFR-positive lung cancer. The rationale for the trial sounded reasonable and other data appeared promising. And it would be significantly more convenient if he stayed with her in the San Francisco Bay Area while undergoing treatment. 
Caregivers Need Support Too 
But no caregiver journey is easy. While Aimee focused on helping her father with his cancer treatment, she also had a young daughter who needed support with remote learning due to COVID. Additionally, Aimee went through her own medical issues at the same time, including abdominal surgery and a broken foot.  
No caregiver can give 100% of themselves to someone else. And that’s okay. 
“You will feel like you’re giving 200% and you’re not alone. But know that life is not static. This too shall pass. One of my father’s “cancer buddies” told me that the first 6 months after diagnosis is the hardest. That was certainly our experience,” says Aimee. 
Today, Aimee’s dad is over a year out from his open thoracotomy and continues to stay on a targeted treatment as maintenance therapy plan. He is now home in Honolulu and continues to rake the leaves under his mango trees and look forward to visits with his grandchildren.   
Aimee has stayed in contact with the lung cancer community, and she continues to support her father by managing his healthcare team appointments and other needs. As her dad continues his lung cancer journey, Aimee continues her journey by giving back to the lung cancer community through outreach programs, like the LifeLine Support Partner program, that help connect her to other newly diagnosed patients and caregivers.   
“The journey, especially at the beginning, can be so scary and disorienting. I hope to be able to lend an ear and share some of the wisdom others kindly gave to us during our darkest times.”
 
Related Links:
Visit the LUNGevity Calendar to join upcoming caregiver events 
The Caregiver Resource Center has more helpful tips and information 

Thanks for your positive response Lily he certainly needs it at the moment, it’s a very scary time for him so he needs all the support we can give him, I know your replies mean a lot to him and hopefully he will come to the right decision, thanks again for your support, lots of love Isla ( Justin’s mum ) xxx

Richie,
Welcome to our forums.  SCLC is a tough one to fight, but there are more treatment options today than at any time in history.  I want to share a couple of areas you should read up on (knowledge is true power with this disease).
 
This article is titled "10 Steps to Surviving Lung Cancer; from a Survivor" and it is my "go to article" for newcomers.  It was written by a member who was Stage III and Stage IV over 18 years ago.  It can be found here. Next is a forum on SCLC where you can be in contact with people on the same journey as you.  Always feel free to ask any questions here, but you may find some help information at this forum.  You can see it on this page. So many of us have shared here the shock, disbelief and dread we felt at our diagnosis.  Stay connected to your friends and family for support.  You can also come here with any questions and our Lungevity Family will share their experiences and knowledge with you.  Many of us find that once we start treatment our anxiety levels go down as we are now focused on our treatment and defeating this disease.  Know that LC (lung cancer) is no longer the automatic death sentence it was years ago.  Advances in treatments are occurring every day and there is hope for us.  On the other hand, if you find yourself sinking to deeply into depression and/or anxiety please speak to a professional.  In that case, some treatment now can put you in a better frame of mind to engage in the treatment plan and enjoy the life that you are fighting for.  

Lou

Lily, your new side effects are also common, believe it or not. You're getting all of them at one time. Certainly call the nurse line but you may need to see a dermatologist for your itchy red spots. The dermatologist will be your new friend. They should be very familiar with TKI side effects. 
When I first started Tag, I felt like there was a hand pressing on my back. That feeling eventually went away. I've heard of the involuntary muscle twitches, and they should go away too. 
I don't remember when your next scan is but when you get it, you should get some comfort that the Tag is working. 

Lily, your new side effects are also common, believe it or not. You're getting all of them at one time. Certainly call the nurse line but you may need to see a dermatologist for your itchy red spots. The dermatologist will be your new friend. They should be very familiar with TKI side effects. 
When I first started Tag, I felt like there was a hand pressing on my back. That feeling eventually went away. I've heard of the involuntary muscle twitches, and they should go away too. 
I don't remember when your next scan is but when you get it, you should get some comfort that the Tag is working. 

Lily, your new side effects are also common, believe it or not. You're getting all of them at one time. Certainly call the nurse line but you may need to see a dermatologist for your itchy red spots. The dermatologist will be your new friend. They should be very familiar with TKI side effects. 
When I first started Tag, I felt like there was a hand pressing on my back. That feeling eventually went away. I've heard of the involuntary muscle twitches, and they should go away too. 
I don't remember when your next scan is but when you get it, you should get some comfort that the Tag is working. 

Hi lily 
Thankyou for asking about me, my Dr has advised me to get the treatment done in Bristol before I change hospitals because he doesn't want me to get lost in the system and there might be a delay in where they send the results, he doesn't think there will be much of a delay but doesn't want to take a chance, I haven't heard from the brain cancer hospital yet apparently they are having the meeting this week hopefully they will sort it out sooner than later because last time the brain mets doubled in size after 4 weeks before the gamma knife radiosurgery, 
I feel a bit better I think in myself and have a bit more movement in my right arm and leg but still can't coordinate properly maybe the concussion is getting better and the fluid is going down due to the dexamethasone steroids, 
I hope you are feeling a bit better now and your fingers healing take care Justin x 

I've never had a brain MRI in the 3 years since my diagnosis, but I don't have brain mets (Stage 3b). I probably should have had one at the beginning. 

Lotions are the lightest moisturizers, creams are a little thicker and ointments are the thickest. I moisturize with a lotion, but for areas that have had eczema (caused by Tagrisso), I use an ointment accepted by the National Eczema Association. The steroid my dermatologist prescribed for eczema is in an ointment base. 
It's been impossible for me to preserve my nails, they are a super short, breaking mess after being on Tagrisso for so long. My dermatologist says there is very little I can do about that. 
Here's some info from Cerave, which many Tagrisso users swear by:
https://www.cerave.com/skin-smarts/skincare-tips-advice/the-difference-between-lotion-cream-and-ointmentI

Use super glue on the cuts. I know this sounds crazy but woodworkers use it when they get small cuts like this. These cuts are another common side effect of Tagrisso and many people get them. Be sure to wear dishwashing gloves if you put your hands in water, even if it's for a brief time. Overnight, use a moisturizing ointment (not a lotion or cream) on your fingertips and cover with cotton gloves. 
You should report all side effects to your doctor. If they become too unbearable, you might ask for your dosage to be reduced to 40 mg, but remember, never cut those pills in half. 

Muscle cramps are from not drinking enough water. Have your primary doctor do bloodwork to test for electrolytes, B12 and iron. Your oncologist likely is only looking at liver and kidney function. Some people find that pickle juice or mustard helps with cramps. Magnesium also helps. Tagrisso also can cause low sodium, especially if you're drinking a lot of water. When I had low sodium I used LMNT electrolyte powder, which has the highest electrolyte values out there. I only occasionally get muscle cramps in my hands and feet. 
For diarrhea, you might want to reconsider dairy or take a lactose enzyme when you do have dairy. At least for a while you'll want to stick to a BRAT diet. 
Your side effects should subside or disappear once your body gets used to the Tag. 

I've never had a brain MRI in the 3 years since my diagnosis, but I don't have brain mets (Stage 3b). I probably should have had one at the beginning.