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Hi everybody,

Got some very good news today post scans.  The brain MRI is clear, the lymph nodes are stable, the bones are stable and the right lung is “stable and improved consistent with radiation”. What?? I’ve never had radiation, however the onc translated that means the area where the tumor was is scar tissue from the targeted therapy (alectinib) doing its job.  Doc wants to start spacing scans out so this next one is 3 1/2 months out, then we will creep for 4 months.  Labs will continue every six weeks.  
 

The pulmonary edema is improved too. We settled on Lasix 20mg, five days a week with an occasional “social break day” if we’re heading to a movie.  
 

There’s always a hitch at these appointments and this time we’re going to need to address persistent weight gain from the alectinib. After 15 months of therapy,  I’m 23lbs above my normal weight (30lbs from my rowing weight).  Unfortunately the dietician at the clinic is so terrible even my doctor agrees. He said I’m resourceful enough to find one independently. ( I think that’s code for he doesn’t want to hear anymore complaints about the in house dietitian because he’s stuck with her.) Normally he would recommend intermittent fasting but that is not possible on this drug due to the food requirement for absorption rates.  It’s a sh** load of calories with a high fat twice a day twelve hours apart.  It’s hard to do.  We’re going to continue to closely monitor my thyroid too.  

I’m enrolled in the LiveStrong program at the YMCA for the next 12 weeks which might help. 

Next week we’re off to Amelia Island, upon return I will endeavor to find a nutritionist.  
 

Thank you guys for being there, we’re all playing the long game here!  
Carry on! 
Michelle
 

 

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Michelle,

I love seeing posts like this and am so glad for you and your progress.  I can't wait to see the time between scans increase again and again for you.  You're very savvy on all things recovery so if the dietician stinks, drop her and do it yourself.  Obviously they either find her acceptable or she pictures of somebody from a past Christmas party.  :)

Keep up the good work and the updates.  CONGRATULATIONS!!!

Lou

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Hi Michelle,

WooooooHoooooo on wonderful news on your scans.....stable, stable and more stable is music for the soul. What a nice send off to Amelia Island. Enjoy.

At 5’7”, I have always enjoyed my weight at 125lbs. I was nimble, active and spry. Now, after 17 months from diagnosis, I am 155lbs and not entirely happy with carrying this extra weight. I told my husband I feel clunky and heavy. Granted, I did scarf up the calories during chemo and radiation but that was before and now is B-5. I also understand, Durvalumab can claim some credit for the weight gain.

I'm hoping, without Durvalumab and fatigue nipping at my heels, I'll be able to lose a few pounds and increase my level of activity. Here's hoping we both get to our goal of a weight that sustains our health, and allows for an active lifestyle. 

Take Care, DFK

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Hi DFK,

Yes we’re similar in stature, my competing weight was 130lbs and before rowing I was 140lbs at 5’7. Now I’m 163 and I feel it going up each stair (not to mention I’m on my third set of “fat clothes”).   So will try and inch it down to 155lbs- that’s the insurance policy “new normal”     What really sucks is I’ve strictly adhered to this anti inflammatory diet.  It would be totally different if I chowed my way via ice cream.  
This too shall pass...   so glad about your post Durva results!!!   
Michelle

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Michelle...Just Saying.....I am SO happy to hear your good news!! WooHoo!  I've been off site a little wearing my caregiver hat X2 but I have you in my prayers every day. 

Great on joining the Live Strong program. I'd love to do same just cannot find time for another schedule right now. Let me know how it goes.

Amelia Island sounds wonderful. 

You are not alone in that third size wardrobe. I'm right there with you. 

Enjoy your trip and again, so glad to hear your scannews.(new word).

Opal

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Thank you Opal!  Wouldn’t to be fun to establish an on line swap shop so we can trade wardrobe’s along the way?  I would have busted the bank if one of the church ladies didn’t manage a consignment shop.   Jersey Girl all the way!  Thank you for all the support! 
 

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Well, how about that! Michelle's got results moving in the right direction. Wonderful news indeed!

The weight and problem dietitian are an inconvenience but if the next scan is NED, you'll knock the weight off pronto!

Stay the course.

Tom 

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Such terrific news, I hope you have a great trip.  I have my 6 month scan at the end of feb. and I’m starting to freak a little so gonna road trip to Colorado with some girlfriends and do a little snowboarding 🏂 right after the scan ...love and light ❤️

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Hi Michelle,

I'm really happy to hear of your great scan!!  I just added "Back to the Island"  Leon Russel to my chair playlist  ..sounds like a good plan after all your hard work.

A few years ago I decided to loose some weight and started by only drinking water, one coffee a day, hemp milk in my cereal and no other liquid. All juice has natural sugar as does wine..I didn't change anything else and lost 40 lbs. and kept it off. I do drink coconut water now.

Thanks for sharing so much information as it has been a big help to me and I'm sure others.

Enjoy your Island time

 

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Happy to come here and read your good news Michele. I have not been participating on a regular basis and always feel some panic / fear when I do get a chance to check in and see how others are doing...

So glad to read your posts. You are very well-informed, a true fighter and invoke a sense of humor into a lot of this as well. I just don't have your energy and persistent optimism... but it is so inspiring!

Well, I felt a little better reading that others are on their 3rd set of clothing changes/sizes, although I can't say it's due to any treatment! I have gained over 20 lbs since my lobectomy and I can't blame it on chemo or any drugs. I only had surgery. I honestly don't get it as I don't consume any more food than I used to. I am vegetarian (probably too many carbs) considering going all vegan. I don't get exercise like I used to / would prefer... Weather has been horrible for too long. I used to walk a lot, but I'm finding the damp and heavy rain makes breathing harder for me and I cough. Maybe I need to move to a dryer part of the U.S. (but I wilt with too much heat / humidity and would miss the green!)  I worry a lot about the weight gain when I read how it raises the risk of some cancers... and inflammation has been a problem as well. I just switched medical clinics and will be seeing a dietician at no charge (the other clinic would not refer; said insurance would not cover!), so hoping that will help.

I did attend a Livestrong program at our local YMCA for about 6 weeks and had to quit for family-related reasons. Hoping to start it again if my next scan shows I don't need any treatment. I found the program was good for strength training, but I did not find it helpful in addressing breathing / lung issues like endurance. (i.e. I wanted to use the treadmill as it really seemed to help with deep breathing, but they wanted to focus more on weights).  Unfortunately, the group for the session I was in was not the most social of groups - this was not a place or program to seek camaraderie within - but I think the Livestrong program itself is a great resource and gift to those communities that can provide it.  I really do hope to start and do it over again - and complete the 12 weeks sessions this time!  Good luck!

Again, really happy to "see" you here and to read how you are progressing. Thank you for all of the info and hope that you share with all of us. Hope you have a wonderful trip! 

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Thank you all for the kind words, support and prayers!  I appreciate our family friendship we have here!

Lisa,  I hope you have a great time on the slopes! 

Deb- I hope you're enjoying some indoor tennis this winter

Hope- I think and pray for your husband regularly. 

Tomm- So good to have a "hippie" to keep us on our toes- that last joke was pretty funny!   

Ro- I  hope Bean Town isn't too snowy &  cold.  I pray regularly for the clinical trial to get going for you too.  One of my ALK peers is going into some super high tech trial  at MGH for TROP2 a novel approach in lieu of TKI targeted therapy.  Next generation mutant treatment.... hmmmm.... 

Colleen Rae- So good to hear from you! I totally understand why you would want to take a sabbatical from the forum.  This isn't easy stuff we're dealing with! 

  I think  cancer does something to mess with our metabolism.  Just before I was diagnosed, but before I got really sick, I started to gain weight out of nowhere which made no sense since I was training for head race season (5K regatta's  in the Fall). My PCP wrote if off to menopause.   Another one of my rowing team mates had a similar experience before his cancer diagnosis.  Weird.  I have to say that it took me a year to make enough progress to get to the LiveStrong Program.  I think Tai Chi really helped to repair my lung capacity.  My right lung was a real mess, going up a flight of stairs was such a challenge.   

What's interesting about this LiveStrong Program is that there are a total of four ladies, three of us have lung cancer.  I had expected a cliquey bunch of breast cancer survivors (like my yoga class).  The oldest participant is 75 years old with Stage IV NSCLC PDL-1 AND brings a portable oxygen container with her!   Our trainers are totally into rebuilding our lung capacity (safety in numbers???).  We'll be doing all sorts of things from water aerobics to yoga.   

Try not to get too discouraged about the weight gain, we're all in the same boat.  Please let us know if you learn anything useful from the new dietician.  It's not like we can join weight watchers, there's got to be a sneaky way to trick our metabolisms into firing on all cylinders again.   Those grey days can be such a downer, especially this time of year in your neck of the woods.  Spring is coming soon!  Just one more month of really crappy weather (and February is a short month).

Love to you all! Packing complete, I am so ready for some sunshine!    

Michelle  

 

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I’m so happy to hear you are stable Michelle.  I’ve gained about ten pounds since surgery last February.  I believe that has as much to do with the emotional side as the the physical.   I’m embarrassed to say that the surgery hasn’t motivated me to lose the weight as much as an upcoming trip to Hawaii has. The trip is pretty close to my one year anniversary.  That anniversary is also motivating me to focus back on my overall health and well being.  It’s a constant battle.  
 

Have fun in your trip.

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Thanks Curt- glad to know we’re not alone in the “reverse weight watchers club”.  HI is a fantastic motivator as pictures in swimsuits can theoretically last forever, the camera doesn’t lie.
Fortunately for you “youngster” guys, ten pounds will melt away.  What a great way to celebrate!   

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