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3 months later


Chuck K

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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

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Hi Michelle 

It's good to here from you good to relate to someone with the same mutation and treatment. You are spot on about the stairs and walking. I'm having a hard time with knee and leg pain .Told guys at work if it gets worse I may have to take an early retirement. I started wearing knee high compression socks and it helps with the pain a lot. I am very pleased with how fast the Alectinib is working 

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Almost 30% of us taking alectinib have joint pain/ mystery pain and that doesn’t mean we have to suffer. I had terrible knee pain too, spent months in physical therapy.  Finally we found something that did the trick- low dose Cymbalta- 30mg in the morning.  Technically it’s an anti-depressant but at low doses works well for joint pain.  
 

Alectinib penetrates the brain l some believe reduces neurotransmitters which causes joint pain… it’s worth a shot. 

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Hi Michelle 

I've had bad experience with antidepressants in the past but a low dose may work. I'll mention it to my Oncologist next visit. Michelle do you or did you have a low heart rate from taking Alectinib? Started taking COQ10 it seems to help some

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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. 

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