Rower Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Robert, I’m so sorry for the loss of your beloved wife- we all mourn her.  Thank you for entrusting us throughout her therapy.  My condolences to you and your family. 
Michelle

Wonderful news!! So great to hear from you.  Hope you are enjoying the boys and baseball this summer!  
Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Hello and Good Morning,
We all understand the shock of this diagnosis coming out of nowhere. I too am ALK Positive, diagnosed in 2018 having been on Targeted Therapy and in remission while taking Alectinib. 
I’d like to point out the importance of obtaining a second opinion as it is well known here in the US that immunotherapy is not effective with ALK and their could be serious clinical complications.   
Just last month, ALK expert did a Q & A about the very question your doctor has regarding treatment with curative intent. 
 
I’m hoping that you’ve had a brain MRI as that’s a requirement for all people with ALK many of whom are also under 40 years old  
There are many resources for ALK- on Facebook the ALK Positive Support Group,  the website,  www.alkpositive.org , and the annual conference is this month you can register for virtual or attend in person In Denver CO.  
 
https://www.alkpositive.org/alk-summit-2022
ALK is very rare and requires expert opinions to have access on the best treatment plans. People diagnosed with ALK can live a very long time with a high quality of life.  Let me know if you have any questions.   It’s scary in the beginning but I’m here to say you can do this.  We’ve got your back.  
Michelle

Robert, I’m so sorry for the loss of your beloved wife- we all mourn her.  Thank you for entrusting us throughout her therapy.  My condolences to you and your family. 
Michelle

Wonderful news!! So great to hear from you.  Hope you are enjoying the boys and baseball this summer!  
Michelle

Wonderful news!! So great to hear from you.  Hope you are enjoying the boys and baseball this summer!  
Michelle

Robert, I’m so sorry for the loss of your beloved wife- we all mourn her.  Thank you for entrusting us throughout her therapy.  My condolences to you and your family. 
Michelle

So sorry to hear that. I remember how I felt hearing that I had stage 4 adenocarcinoma NSCLC. That was a bit over two years. I had immunotherapy, target therapy, and now chemotherapy. I would get a second opinion if I got anything I didn’t like in regards to the treatment plan. I have been told to find a “comprehensive cancer” center if possible, as they typically get better results than those who lack that designation.

Immunotherapy and targeted therapy is a game changer for many of us! Trials are also a promising bet, as  I have been told. I think it’s also a wise idea to ask about palliative care to be added to the plan.
 
Last of all, I am getting my fifth chemotherapy infusion (three months so far),  as I am typing. It has not been that bad, hair loss and fatigue for a few days after my infusion. They have found ways to eliminate the agony many experienced in the past, so if they offer it, it’s worth trying. You can also halt it at any point.
 
Lastly, I would ask for a panel of genes from Foundation One to reveal any targetable gene mutations, if you haven’t gotten this information yet. It needs doing before any treatment.
Good luck to both of you!

Hello Paul,
I’m sorry I somehow missed your post. Like Ron, I have the ALK Mutation too.  The initial biomarker testing missed the ALK-fortunately my oncologist had two other patients with ALK and sent my biopsy for comprehensive biomarker testing at Foundation Medicine.  Who knew there was four tests for ALK?   Anyway I’ve been on Alectinib for three and a half years now. 
 
In addition to the ALK FB page, there will be an in person conference in Denver.  I went in 2019 when it was in Atlanta and made many lasting friendships.  
 
The fact you have a low PDL actually is good news as emerging research indicates that patients with a PDL 1 under 50% have a longer response on targeted therapy. 
 
I’m sorry you’ve had to go through all of this but now you’re on a good path! 
@RonH are you coming to Denver? 

It sure helps me sleep when I have insomnia. That’s a big plus for me. As for curing cancer, I am skeptical.

Yes, I still have a low heart rate- around 55 bpm.  Other medical professionals are clueless and I get tired of people saying “wow you’re really fit!”   The low heart rate is what contributes to the fatigue.   
 
I also had edema and had to wear compression socks and then after two years it resolved without explanation.  Lasix never really did all that great of a job.  
 
Do pay attention to anyone “unusual” shortness of breath as I developed pulmonary edema after about a year on Alectinib.  Seems side effects can occur at any time, not just the first few months. 

Thanks Michelle I will pay attention to my breathing. Yes the compression socks do help
Take care

Hey Chuck, that is great news indeed!  I had a similar experience as well.  The remaining area turned out to be scar tissue from where the tumor was.  Doing stairs and walking up hills may always be a challenge for you over time it’s something you can get used to over time. 
 
For some of us there are accumulative side effects with long term use.  I have a palliative care physician to help me manage.  No one has ever really cracked the fatigue and weight gain though….
Carry on.  
Michelle

Hey Chuck, that is great news indeed!  I had a similar experience as well.  The remaining area turned out to be scar tissue from where the tumor was.  Doing stairs and walking up hills may always be a challenge for you over time it’s something you can get used to over time. 
 
For some of us there are accumulative side effects with long term use.  I have a palliative care physician to help me manage.  No one has ever really cracked the fatigue and weight gain though….
Carry on.  
Michelle

Hi Chuck,
Greetings fellow ALK brother!  My CPK levels took a while to even out as well.  I do have long term muscle aches and random joint pain.  As for the water, be cautious not to drink too much as it will decrease your sodium levels and potentially potassium levels which causes- drum roll- muscle aches!  It’s a balancing act the first year on Alectinib.  I drink two 33 Oz smart waters a day, some herbal tea, and at night a glass of lemon water with organic Apple cider vinegar.  
 
I also take a large prescription potassium supplement as well as a calcium supplement called Bone Maximizer.  Those two things recommended by my Integrative Physician helped.  
 
Most of us have at least one dose reduction, since these meds are prescribed at maximum levels sometimes they need adjustments without losing efficacy.  
 
I do light weights, lots of walking and more recently enrolled in the LiveStrong program at the YMCA.  Alectinib is brutal on fatigue so exercise is very important.  Until you get medical clearance to start again check out the Tai Chi videos on YouTube.  
 
Good luck on the scans!  I just had mine, NED 40 months on therapy.  
 
Michelle

Hang tight… The waiting is hard the only way around the anxiety is getting the results, even then it takes a few days to readjust.  Keep us posted!

Yes, we do know how you feel right now!  That’s great news!!! After the next few scans you will get to NED.   Deep breath, carry on. 

As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
Thanks again for all your support...Deb

Hey Deb,
You’ve been on my mind!  Wanted to share one of our group members has had five rounds of SBRT over a four year period.  Dr Camidge calls this “spot welding”.  The only issue she had was some nausea so you might want to ask about being pre-treated.

I would also be inquiring about Proton Radiation which is available at Mayo & KU which is far more precise and less invasive. 
I always admire your grace and determination.   Let me know how we can all help. 
 
Michelle 

Hey Deb,
You’ve been on my mind!  Wanted to share one of our group members has had five rounds of SBRT over a four year period.  Dr Camidge calls this “spot welding”.  The only issue she had was some nausea so you might want to ask about being pre-treated.

I would also be inquiring about Proton Radiation which is available at Mayo & KU which is far more precise and less invasive. 
I always admire your grace and determination.   Let me know how we can all help. 
 
Michelle