CT scan and starting alectinib

[Chuck K]

Hey gang 

I'm having a ct scan tomorrow, right side of stomach still swollen from robotic surgery (biopsy) from little over a month ago. Dr thinks may be hematoma. Also my alectinib coming tomorrow fed-x. 11/10/21. Hope this cancer hasn't spread since pet scan and biopsy. I did get one cycle of chemo. Glad to finally start alectinib. Can anyone tell me what to expect for side effects, right now I feel great besides the emotional roller coaster ride

[Rower Michelle]

Hi Chuck,

For me the big three are fatigue, weight gain and edema.   In the beginning I had elevated liver enzymes which required one dose reduction without any issues.  I also had muscle pains & joint pain-Advil didn’t help much but Low Dose Naltrexone did. 
 

Alectinib must be taken 12 hours apart with a high fat high calorie meal, for best absorption and lower risk of nausea.  Avocado and nuts/seeds/hemp hearts work well.  Also constipation is common so lots of organic fruits and vegetables   

Here is a document from ALKPositive.org:

https://static1.squarespace.com/static/5b6cc61596d4557796b187fe/t/5c50df3cc74c507564e98e64/1548803900278/ALK-Positive_Medication-Help_Alectinib.pdf

[Chuck K]

Thanks Michelle I'll take it one day at a time. Hope I do well I've been reading where alectinib is helping a lot of people for a lot of years

Chuck

[Rower Michelle]

I’ve been on Alectinib for three years and my phone buddy has four years in.  What’s strange about the side effects is that they all don’t hit at once. Some of them take a long time.  
 

I developed pulmonary edema after a year on treatment-and I’ve gotten used to having abnormal labs.  Hemoglobin, sodium and potassium all tend to run on the low side therefore I pay close attention to my diet for foods that are high in iron and potassium.  
Don’t be alarmed if you develop a fever in the first few days, let your doctor know.  I ran a low grade fever for about ten days.  My cough resolved immediately and after 8 weeks I felt pretty normal.  
 

I will say the fatigue is cumulative and I have less energy now than I did when I first started.  I’m glad we got a lot of things done in the first two years.  We didn’t take a wait and see approach- he did lots- six vacations in the first year.   
 

You’d be surprised how quickly these drugs work.   Please don’t feel like you’re completely to the doctor, it’s a mind shift of informing so your side effects can be managed.  For the most part these side effects are a minor nuisance we all learn to live with. 

[Chuck K]

Hey Michelle

I saved the chart on side effects this will help thank you. You asked me a couple weeks ago which alk variant I have ,from what I can read on the report it looks like variant 2 was detected not sure what that means. I'm starting day 3 on alectinib so far I feel fine.

[Rower Michelle]

Well you’ve got great news!  ALK is categorized into “good” ALK and “bad” ALK, super scientific right?   Good ALK is variant 1 and 2, which means a longer than average response to Alectinib.  Variant 3 is typically more aggressive and less likely to respond to second generation ALK inhibitors.  Variant 3 ALK is more closely monitored while variant 1 & 2 is a little further apart.  
 

I have something else, that occurs in less than 1% of ALK tests.  I did speak to Ross Camidge about it.  He said he’s never seen my variant in clinic but would categorize it with Variant 1 based on the duration of the response so far.  
 

I’m glad you started the meds and are feeling well.  All great news!  

[Chuck K]

Thanks Michelle I'll keep taking the good news