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Rower Michelle

Starting Alectinib today

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Hi and good morning.  This afternoon I have a chemo teaching appointment with the nurse practitioner before starting Alectinib today.  Do you have any insight as to what I need to be looking when starting the treatment?  Common side effects and how to manage them?  Thanks very much.  I appreciate any information! 

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Hi, Michelle,

I’ll reach out to some of our members who have experience with ALK targeted therapies and ask them to respond in this thread. Thinking of you today!

With gratitude,

Lauren

Digital Community Manager
LUNGevity Foundation

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Lauren- thanks for the outreach.  I did send a request to the ALK Facebook page as well.  I had to set up a FB account, I'm probably the last person in the country not to have a FB page. Unfortunately, FB disabled the account as "suspicious" activity.  I filed an "appeal" explanation to explain yes, I'm a real person.  Bizarre.   

Mary- I hope your husband does well on the treatment.  Please keep us posted! 

I went  on Friday for my chemo teaching.  The nurse practitioner told me I'm the first patient she's had on the Alectinib. So we will be trailblazers together.  Thanks to Dr. Google, I knew as much as the ARPN.   Alectinib needs to be taken with meals  high fat, high calorie to enhance the absorption.  (Good grief, I see a heart attack coming!!)      "Absorption increased active metabloite M4 by 3.1 fold"  (Greek to me but I will track the translation down). 

Here is the monitoring protocol from Wolters Kluwer the nurse downloaded for me. 

Monitoring Parameters: 

Liver function tests (ALT, AST total bilirubin) every 2 weeks during the first 3 months of therapy, then monthly as clinically necessary (monitor more frequently in patients who develop transaminase and bilirubin elevations; CPK levels every 2 weeks for the first month of therapy then as clinically necessary; monitor heart rate and blood pressure regularly, monitor for signs and symptoms of interstitial lung disease/pneumonitis and myalgia. 

 

Monday I have a baseline CT and Tuesday is the Integrative MD appointment.   I will ask about the best food for absorption and pass along the information. 

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Great that you're getting all that info--and I'm sure that sharing here what you will learn will be helpful to those folks who will be prescribed this drug in the future.

So "comfort food" is actually part of the plan!  :) 

Keep us posted--I love learning about this stuff. 

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Hey LexieCat- I wanted to let you know that while I've lived in KS for the last 8 years, I'm actually born and raised Jersey.  (Exit 150 LOL!).  Those poor docs don't know who they are dealing with!!    

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There ya go--I'm not a native Jersey Girl (from Colorado originally) but I've been here since 1981.  But I'm in South Jersey, which really might as well be another state, lol.  I'm right across the river from Philly (Camden County).  

I definitely think living here has toughened me up.  :)

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Hi Lauren, 

Thanks for checking in.  It's been a miserable week with a trip to the ED on Monday night (evidently fevers don't operate on a 9-5 schedule).  The ED was able to rule out anything nefarious and would seem this is a pesky virus.   Here's the best thing that came out of the trip!  A CT Scan was done to rule out a pulmonary embolism.   They were able to compare the CT to the first one I had in September when initially diagnosed and there's been IMPROVEMENT in the lymph glands noted!!  

I didn't need a scan to tell me the meds are working.  I took the first dose of Alectinib on Friday, October 26th.  That night, the violent coughing fits miraculously stopped.  For the first time in six weeks I was able to sleep through the night!   So far no more violent coughing fits have occurred since then.   The port catheter was removed last week and I'm finally rid of that little bugger.  It was eroding through the skin (from the coughing fits) and will take a few more weeks for the surgical site to heal completely.   Maybe I'll be able to get back on the rowing machine before Christmas. 

I'm being detoxed off that dreadful codeine cough syrup.  Four more days to the final dose.  So glad to be detoxing so I can have a glass of wine with Thanksgiving dinner!  

Today was my first set of labs.  Generally tolerating Alectinib well.  My platelets were a little low (102) and will be redrawn next week.  I've got some mild edema, but it's nothing compared to what I've been through recently.   I will return to the Integrative Medicine doc on Tuesday to review  a treatment plan- which I'm really looking forward to. 

It's hard to believe it's only been seven weeks since I've been diagnosed with lung cancer.  I still have trouble getting my head wrapped around it on some days.  The first three weeks were an emotional roller coaster.   Now with treatment underway, I feel battle ready for this.  It's great to have this forum to see the fighting spirit of survivors.  

Appreciate having the support of this community! 

Michelle 

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Hi, Michelle,

Thanks for posting an update! I hope you’re feeling better and that you’ve recovered from that virus. I’m very glad to hear that your scans are showing improvement! How did your appointment go last week?

We’re glad that you’ve found this community of support. We are always here for you.

With gratitude,

Lauren

Digital Community Manager

 

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Hi Lauren-

Thanks for checking in on me.  I’m on the tail end of this creeping crud and managed a short walk this afternoon.  

The appointments are going well thus far. There are some concerns about my liver enzymes being elevated so they were redrawn again today.    My former port site continues to heal and after Thanksgiving I will be able to start the wellness programs.  It seems this a two step forward one step back process over the last month.  In general I feel pretty positive!  Hoping for a good stretch in December.  

Hugs!

Michelle

 

 

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Brief update: the liver enzymes continued to increase so I need to take a drug holiday over the weekend.  New labs for Monday.   Most likely will restart at a lower dose. 

For the weekend I will rely on the curcumin, fish oil & Turkey Tail to keep the fight going.  The pharmacist called this cocktail “ your hippie meds”. LOL. 

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Hi there, and welcome.  Nobody has posted on this specific thread since November.  

A full list of the forums is here:  https://forums.lungevity.org/forum/31-discussion-forums/  I suggest posting on the "Introduce Yourself" forum for new members, and then exploring the site.  If you're particularly interested in Alectnib, you can start a new thread in this forum, too.

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Hi there! 

Most of The ALK Positive peeps are over on Facebook.  They have a very active site which is a private group.  If you look at www.alkpostive.org there is a sign up form.  I don’t do Facebook- tried to set up an account & well that’s a story for another day. 

I’m an ALKie- new to this journey.

Personally I likenhanging out with this group.  Awesome people with amazing strength.  

Welcome aboard,

Michelle

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I also do not do Facebook. My ALKie journey will most likley begin next week after another CT scan and dr. appt. I had chemo last week while awaiting for my pills to arrive.

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Great to have a fellow ALK here.  Let me know if you have any Alectinib questions.  It’s fairly new so I’ve learned the docs & pharmacists do not have a lot of experience with this.  Lots of trial & error on my part to manage the side effects. Excellent results so far. 

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I was diagnosed with ALK+ lung cancer in 2015 at which time I was started on Xalkori (crizotinib) which worked amazingly well for 29 months before I had progression and was switched to Alecensa (alectinib). I have been taking it for 16 months now and all the side effects that I had in the beginning (muscle pain, diarrhea, sun sensitivity and some edema) have all gone. I try to eat a well balanced diet and drink lots of water. I stay as active as possible and that is about it. I am still doing great on the Alecensa at this point. I am a member of the Facebook group ALKpositive.org. If you prefer not to be on Facebook I will be glad to run any questions you have by the group and I can assure you someone will have an answer. Wishing you all the best. Sam McBride

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Thank you Sam! I never did FB as I was a professional I only did LinkedIn.  After I was diagnosed I tried to join FB, set up a page just before the election in October. I think I got caught up in their new security algorithms & my access was blocked for not being a real person. I’ve filed three appeals & don’t want to give them my passport at their request.  

I was started on Alectinib in October & I think the side effects are subsiding.  

I appreciate your offer of embassorship!  

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