Chuck K Posted February 13, 2022 Share Posted February 13, 2022 Hey everyone I've been taking Alectinib for almost 3 months now started Nov.15. Side effects are swollen legs above ankles ,wear compression socks and they help.My resting heart rate gets as low as 45 bpm started taking COQ10 and seems better. I've been doing lab work once a week and at the beginning the cpk (muscle enzymes) were slightly elevated so Dr told me to drink more water and after a couple weeks the cpk number went down to safe level 160. Two weeks ago cpk went up to 216 and Dr said drink more water. This week cpk is up to 430.He asked what I'm doing different.Told him I've been taking 2 antibiotics for tooth infection and I've been working out with weights and treadmill every night while watching tv. Dr said stop the weights and drink more water and check labs next week .Dr said cpk number not high enough yet to make changes to meds but if it increases meds will have to change. Now that puts my stress level to the roof I need this medication. So I stopped COQ10, stopped treadmill and the weights and drinking lots of water. Forgot to mention my first 3 month scan is on Feb. 21st Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 14, 2022 Share Posted February 14, 2022 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 Tom Galli, Justin1970, Deb W and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 14, 2022 Author Share Posted February 14, 2022 Hi Michelle It's good to here from you. My family and friends don't really know what I'm going through so I follow this group every day and it helps thank y'all for what you do. I did back off on the water ,drinking around 80 oz daily. I have labs again this Thursday hopefully the cpk number is down. As far as fatigue It's not bad yet I'v been back at work and so far I'm ok. I do hope to get back to excersizing and lifting some weights to try to keep this weight down,haven't ever weighed this much. Fingers crossed for the scans Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted February 14, 2022 Share Posted February 14, 2022 Chuck, Welcome here. I've got my fingers and toes crossed for clean scans! Stay the course. Tom Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 14, 2022 Author Share Posted February 14, 2022 Thanks Tom much appreciated Tom Galli, LouT and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 14, 2022 Share Posted February 14, 2022 Oh Chuck.... the weight gain..... it's real. I'm the heaviest I've ever been too. No one has figured out how to crack it on Alectinib.... how does anyone get fat eating Brussel sprouts??? Tom Galli and LouT 1 1 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 15, 2022 Author Share Posted February 15, 2022 That's OK I'll take the extra weight,could be worse.Hope to get back to some kind of excersize routine next week.I did check out the Tai Chi video I'll try it next week Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 15, 2022 Share Posted February 15, 2022 Chuck, It's nice to meet you. I must say, every time your doc told you to drink more water, I couldn't imagine how you would do it. I'm glad you could back off on it. Good luck with your scans! Karen LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 15, 2022 Author Share Posted February 15, 2022 Karen Nice to meet you ,best wishes to you and thank you Justin1970, LouT and Karen_L 3 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 18, 2022 Author Share Posted February 18, 2022 Hi Michelle Had my labs today and the cpk number dropped from 430 to 138 woo hoo. Scan is this Monday and wow scanxiety is real. I'll update next week Chuck BridgetO, Scruboak, Rower Michelle and 4 others 7 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 19, 2022 Share Posted February 19, 2022 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! Tom Galli, Justin1970 and LouT 3 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 22, 2022 Author Share Posted February 22, 2022 Hey everyone Scan was yesterday, results came in on my chart .wasnt brave enough to look at it so I called Dr office. Scan said findings consistent with positive results from treatment. Dr said the limphnodes not showing up anymore and cancer in shrinking. I went from my stress level to the roof to ,y'all know how I feel right now LouT, WalkingHorse and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted February 22, 2022 Share Posted February 22, 2022 Love positive results. Congratulations! Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Rower Michelle Posted February 22, 2022 Share Posted February 22, 2022 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. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 22, 2022 Author Share Posted February 22, 2022 Michelle I've read and heard a lot about Alectinib just wasn't sure it would work for me. I'm so glad it's shrinking.Thank you all for what you do for this support group Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted February 23, 2022 Share Posted February 23, 2022 Great news Chuck...keep on keeping on and you'll continue to improve. Lou Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted February 23, 2022 Author Share Posted February 23, 2022 Thanks Lou I haven't felt this relaxed in months glad to see some progress Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted February 23, 2022 Share Posted February 23, 2022 Hooray! Such a great feeling! Karen LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted June 9, 2022 Author Share Posted June 9, 2022 Hey everyone Been on targeted therapy Alectinib for 5 1/2 months now I had my pet scan done last week. Seen Oncologist today and he said no cancer is detected or lighting up.He did say there is a 1cm spot on lining around lungs that is questionable may have residual cancer cells in it but it's not lighting up. The other cancer isn't detected on the scan.Nothing lighting up sounds like Ned to me but he wants to wait for next scan before he says I'm Ned. What I have to say to y'all waiting on your treatment plan it does get better I was diagnosed stage 4 lung cancer last October. As Tom Galli says if I can live so can you. RJN, LouT, BridgetO and 2 others 5 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted June 10, 2022 Share Posted June 10, 2022 Great news. Congratulations! LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Pstar Posted June 10, 2022 Share Posted June 10, 2022 That is awesome Chuck. So happy for you. LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Chuck K Posted June 10, 2022 Author Share Posted June 10, 2022 Thanks Judy and Pstar. So excited right now such a relief. Now this dang port can be removed. Thanks guys my prayers are with you LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 10, 2022 Share Posted June 10, 2022 Congratulations! LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted June 10, 2022 Share Posted June 10, 2022 Hi chuck That's brilliant news really pleased for you Take care Justin Izzy and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted June 10, 2022 Share Posted June 10, 2022 Chuck, What a great result from your tests. So glad to hear that you are doing well. Congratulations on the results and I hope you'll have many more positive results. Lou Justin1970 1 Quote Link to comment Share on other sites More sharing options...
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