RonH

Hi Paul,
If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

Hi Michael, 
I was diagnosed with ALK nearly five years ago now at Stage IV; have been on Alectinib for 52 months with clear scans.  The brain fog and memory issues are very familiar. They are a common reported side effect for many of us.   I have a few ideas depending on what's available at your center: 
1. Ask for a palliative care referral; it's a misperception that palliative care is for end of life.  Today palliative care teams are trained to assess and treat side effects.  Oncologists really only treat the cancer; not the side effects.   Sometimes a short course of Ritalin/Adderal might help.   
2. Some of the larger cancer centers have post treatment cognitive rehabilitation programs to reduce brain fog and improve memory.  That might be worth checking into. 
3. You might want to check into seeing a board certified physician in Integrative Medicine for Functional Medicine.  Here is an article on how to locate one: 
https://www.drweil.com/health-wellness/balanced-living/healthy-living/seeking-an-integrative-medicine-physician/  I had some pesky lingering side effects that the palliative care doc and the integrative care doc couldn't figure out.  So I persisted and found a functional MD who actually did finally get to the bottom of it all.   It's important to find a board certified MD as there are a lot of quacks out there.
4. Finally, you might want to consider acupuncture with a licensed Chinese medicine practitioner (not the kind you find at a chiropractor's office).   It's expensive but sometimes covered by insurance.  In my opinion, it's been pretty helpful. 
If you haven't already found the ALK Community, they have pages on Facebook and a website at www.alkpositive.org 
Hopefully some of this will be helpful for you to consider.  Don't give up... keep talking to your doctors. 
Michelle 
 

Ron, you are an honorary Durva member anyway. I think 18 infusions qualifies you for sure!  
Great good news!

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

So happy to hear from all my dear friends! 

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

Hello all!
Been awhile since I've posted here. Glad to hear all is well with you guys! Sheesh! I went straight to 6 month CT scans after I completed my durva ride. Now I'm waiting nervously for my yearly which isn't until December! My 3yr cancer ned was in May of this yr. My oncologist says I'm fine 🙃 righto! Lots of drama in my Life past 8 months started stupid smoking cigs again tried to stop with all the regular methods nothing is working for me. Oh well hells bells, I'll just keep trying! Congratulations to all and since summer is coming to an end I hope everyone had an enjoyable one!
Namaste Roseann
 
 

RonH... Great news!!  You earned you Duva membership ...
Q: What travels all around the world but stays in one corner?
A: A postage stamp!
 

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

This must be CT season. Even though I didn't "graduate from the Durva club" by only making it to 18 Infusions before being shipped off to the ALK+ mutant gang and started on a Targeted Therapy drug, ALECTINIB, I had my quarterly CT yesterday. Although I don't see my ONC till Thursday, I read the Radiologists report this morning. 
IMPRESSION: Stable exam without evidence of local recurrence or thoracic metastatic disease.
😃

Hi Barb!!!
Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! 
Michelle

Hey all you gals and guys NED!! So happy to hear...hugs and kisses.
Yep, Rower..luv ya and think of my contact with you that dreadful day often. My heart still sad for my hubby. He was a real good guy and never once complained thru that long PanCan "journey". 
TX for your support.  
Anyway, I'm not on site too often as I'm caregiving for my Mom. Last 6-7 years and been one thing after another. And oh yes, I got a puppy who is now 2 and keeps me crazy busy. 
Happy for ya all.. Barb, Jersey girls, Tomm and the entire Durva club.  Wondering does anyone get to stretch scans out to 6 months or annually now??
Rower, 4 years!?   Really??  You always gave me hope!! Thank you. My heart is singing! (Corny but true)
I guess we're part of the new stats now, huh??
Love you all!!
Ps:. Wondering if anyone else has other health blips now going on and wonders/worries if it's the C, radiation or treatment result?  I now have a Cardio doc.
Opal
 
 

Yay Tomm. This was my first 6 month wait as well. We are blazing trails!

This was the 1st time I got to wait 6 months to get my CT and results are NED. I get to wait 6 months again. My 6 year cancerversary is in two days. This is 2 1/2 years after Durva treatment is finished. 
2 jokes bonus
Q: Why don’t oysters share their pearls?
A: Because they’re shellfish!
Q: What kind of candy do you get at the airport?
A: Plane chocolate!
 

Tom-we ended Durva about the same time. I’m thrilled to report that I am still NED!!!  I’m sure you will do well too!
michelle-how was yours?

Still NED here too!   

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

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? 

Hi Paul,
If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

Hi Paul,
If you haven't already discovered it, there a very active Facebook group "ALK Positive" with thousands of members worldwide that we all have one thing in common, the ALK mutation. Lots and lots of experience and very knowledgeable people in the group. I myself was diagnosed 3A 4 years ago, and my ALK+ mutation found 2.5 years ago. I've been on Alectinib (2nd generation inhibitor) for the past 2.5 years with very good results so far. Best of luck. (The Facebook group is private and only open to the ALK patients and their support partners (spouses, children, etc). - Ron

Happy New Year to all! Still kicking the rocks around, gratefully. Everything is stable, since last scan I had in December, except a small 7mm tumor (probably a cyst) the radiologist quoted, my oncologist said no worries, all's good 👍 hmmm. Sometimes I wonder. But hey, been ok so far. So I'll take it. Glad to see everyone is doing pretty ok too. We seem to all be staying ahead of the curves for now.
God Bless, stay safe,
Namaste 🙏 Roseann