Hello from a newcomer!

[CSmith]

My name is Craig.  I’m a 55 yr old guy recently (April 1st) diagnosed with stage IV NSCLC ALK +, primary tumor on right lung upper lobe with diffuse nodules in both lungs, MRI, bonescan and other CT do not show mets.  Had a cardiac tamponade on April 3 that required an emergency pericardiocentesis...recovering well.  Started Alectinib on April 5th and have noticed a substantial improvement in symptoms...less cough and shortness of breath.  Follow up CT on April 18 showed primary tumor size decreased by almost 50% and reduction in size of diffuse nodules.  Now trying to get a better idea of support forums and treatment options and outcomes.  So happy to have found the resources of Lungevity.

[Rower Michelle]

Hello Craig! 

I am a 51 year old fellow Stage IV ALKie.  I started on Alectinib at the end of October, 2018.  My coughing spasms stopped after one dose. I started to feel much better after about a month.  I just had my third CT on Monday with results due on Friday morning.  So far the ground glass opacity and spinal Mets are gone with treatment.  We have every reason to believe there are no clinical changes based on how I’m feeling.  

The side effects are “minor” so let me know if you have any questions.  In the interim- summer is coming so load up on the sunscreen as photosensitivity seems to impact everyone even on zero UV days. 

The peeps on this forum are so awesome.  They are the most courageous and inspiring people you will ever “meet”! There is also a ALK Page on Facebook (I don’t do FB).  There are a number of Alkies on this forum as well.  You can ask about anything here.  

All the best to you as you become part of our family. 

Michelle

 

 

[BridgetO]

Hi Craig and welcome,

The cardiac tamponade sounds frightening. I'm glad to hear the Alectenib is working for you. This site is a good place for information and support. I'm happy to see  that you have a response from Michelle, who can be a good resource for you on ALK and Alectinib.

Best wishes and keep posting.

Bridget O

[CSmith]

Thank you Michelle and Bridget.  Sunscreen supplies are on hand!  I have joined the Facebook ALK group now also, so plan to stay tuned to both of these great sites for information.  At this time I am still trying to find ways to deal with the day in/day out feelings of this new reality....April was quite a month for myself and those around me...as all on this group have experienced in some way at some time and can appreciate.  Spring weather is finally here in Ottawa this weekend...hope you all have nice weekends!

[Rower Michelle]

Hi Craig, 

I really understand where you are at.  The early weeks post diagnosis are such an indescribable roller coaster.  You might be cruising along just fine then whammo- the emotional breakdown happens out of seemingly nowhere.  It's really hard to get your head wrapped around a surprise cancer diagnosis.  What I can say is that as you begin to feel better, your spirits will lift and the sun will shine again.  One of things I did early on was sign up for an ALK buddy on the Lungevity site.  We meet every Tuesday night.  She's about a year ahead of me with remarkably similar circumstances.   She was able to walk me off the ledge of the really dark days.  

My fancy cancer center offers a number of free or low cost programs to help manage the stress and depression that comes with this territory.  Some of it sounded too way out there hippie for me, however, I am willing to do anything to fight.  So I signed up for T'ai Chi, restorative yoga and acupuncture.  The breathing exercises in these activities  really helped.   I just did my first ever deep tissue muscle massage this week  since the  Alectinib leaves me with an all over achey feeling.  I was surprised how well my range of motion improved after the massage.  

Please be sure to take the Alectinib with a fat- it's buried in the package insert. The label will say take with food, however the absorption rate increases 3.1 times when taken with a fat.  At first I didn't have much of an appetite so I washed it down with a shot of Olive Oil.  (Gross but you do get used to it). Now  I use walnuts or chia pudding  along with organic beet juice (liver cleansing and helps with edema).  

I tried to join FB when I was diagnosed however, their algorithms kicked me off thinking I was not a real person.  In order to appeal they want my drivers license or passport.  (No way to that one!).  It's nice to know you'll be hanging out in both places.  There's some great information within our group. Inspiring survivors.  

We're all here for you!  

Michelle 

[CSmith]

Hi Michele,

The roller coaster stuff is full on right now...I am lucky to have a very caring and supportive wife and daughter, siblings ( my parents both passed away very recently) and circle of great friends...we are all struggling with the highs of feeling good and the uncertainty of things overall.  I have promised myself that the positive me will win as the opposite won’t be helpful to me or anyone around me.  I have always been very active and am feeling physically better since my tamponade incident and the start of Alectinib...looking forward to getting back into some fitness stuff.  We are just now exploring support systems/groups in this area...yoga is on my to do list.

We have been Keto light (low carb good fats...after a period of strong Keto) for a couple of years and noticed the improved Alectinib uptake numbers when taken with fats in the patient instructions from Roche.  I appreciate your reminder as it should be highlighted more if it can help so much.

Your comments are very much appreciated Michele.

Thank you,

Craig

[Rower Michelle]

I think your diet is perfect so you’re not likely to get the constipation. 

I actually couldn’t find a support group anywhere so I worked with my social worker to start one up (long ago I was a a clinical social worker).  Don’t be surprised or discouraged if there seem to be limited LC resources.  I had to get creative & piggy back on other programs.  I’ve been adopted by a bunch of breast cancer survivors in yoga.  

You will be able to begin a fitness regimen pretty soon.  I’m riding my recumbent trike and have learned to budget my energy.  It was a tough transition to manage the fatigue.  It’s normal. 

There are two books I found very helpful at the beginning- Anti-Cancer Living  and “Something More Than Hope”.  It’s a “mutant” survival guide written by Diana Lindsay.  Very inspiring.  

One of my other homework assignments was Viktor Frankel’s “Man’s Search For Meaning”.  If he can live so can we.  

Give yourself time to adjust to this new world. It took me about 3 months or so to start to feel “normal” again.  

Michelle

[CSmith]

Hi Michele,

Thank you for the reading material suggestions...will definitely follow up on them.  An additional resource for me has been a connection to Dionne Warner and her husband Graham.  She is an eight time cancer survivor!  They wrote a book called “Never leave your wingman” about their journey together with cancer.  The Warners are very good friends with my cousins...they have helped me in dealing with the early days of this new reality.  If you google her name and look at some of the short videos online you can get an idea of how positive they have remained despite many bumps in the road.  I’m now Warrior Craig!

Thank you for the advice on giving myself some time.  I am at my office half days now and explaining my situation to many long term clients on a daily basis ... which means I’m watching the look of sadness creep into their faces over and over again.  I’m trying to say and be more positive about the hope that some of the newer treatments like Alectinib can bring to the situation.  I’m trying to not to worry that every little ache is a failure of the treatment and likely just a normal thing that everyone has and dismisses regularly.  At this point fatigue around mid afternoon is my main symptom.

Thanks again,

Craig

 

[Rower Michelle]

Hi Craig, 

Great to hear from you!  I appreciate the additional reading material.  We need all the inspiration we can get to fight this ALK monster!  You are in the process of transitioning to FULL SURVIVOR mode.  It's empowering.  Every once in a while the worry monkeys will hit out of nowhere.  This seems to happen to most of us. My doc believes because the Alectinib passes the blood brain barrier, our ability to process information and the "coping" section of our brains gets somehow impacted.  The key is to learn how to "ride" the day out.  The anxiety will pass.  

Fortunately, I had already filed for disability when I had pneumonitis and plural effusion so I didn't have face to face meetings with my customers- just the sad phone calls.  It's like PTSD, relieving the trauma all over again.  I developed about a 90 second elevator pitch that kept my story pretty succinct and ended on a hopeful note and some stats about LC under funding.  I leave out the Stage IV part because it just freaks people out.  

The fatigue is part of the ongoing side effect so learning how to chunk things down is helpful and takes a little while to figure it out.  I get acupuncture once a week which helps. I totally get the aches and pains.  My onc has a motto of "ABC" alway bet on cancer.  I landed in the ED for a simple fever of unknown origin. Turned out to be nothing but in our case could have been a pulmonary embolism.   I tell my onc about everything-almost to the point I feel like a hypochondriac.  Better to over report than miss something.  

The trips to the clinic will get spaced out over time and your new normal will soon be on the horizon.  I hope you are able to join us for the ALK Summit in Atlanta.  I think it will be inspiring to meet our peers, some of whom are in the ten plus year club.   

Glad to hear that you feeling better.  I say that this journey is like the Tom Petty song,  We're learning to fly but we ain't got wings.  Each day no matter how fatigued I am, I choose to FLY.  

Have a great week.  

Michelle 

[Curt]

Hey Craig.  Telling people about this diagnosis is tough.  I’ve had to tell family, friends, employees, vendors and customers over the last two months.  I share what I’m comfortable with.  I use it as an opportunity to raise awareness of the disease, there is so little understanding of it with a very heavy bias because of the smoking aspect.  I try to focus on the positive outcomes and treatment advancement when discussing it.  I will say it is helpful to try and  find someone “else” you can have the less positive “real” conversations with.  I found that while I as trying to put on a positive image I wasn’t letting all the negative stuff out.  On the outside I was positive but on the inside was feeling pretty negative at times.  I had to find a way to let the negative feelings out to make room for the positive ones.  

[LouT]

Hello Craig,

Sorry to hear about your diagnosis, but glad you found this group.  You'll get a lot of good counsel, coaching and listening here.  I can tell you that I went through so much of the emotional journey that you are experiencing and every day brought a new set of emotions for me.  The more progress you make against the disease the more solid you'll begin to feel going into the future.

Ask questions and look around, there is a load of information in this forum and I can say that it (and the great folks here) got me through more dark, lonely nights then I care to count.

Lou