Rower Michelle

Hi DFK
So sorry to hear about the flu.  Yuck.  On the bright side you’re immune to that strain for the rest of your life (real bonus?)
On finding a naturopathic doctor, it isn’t easy.  Most of them are out of pocket, some require a retainer.  I wouldn’t work with any of those types.  I had two docs tell me my lung cancer was too complicated for them to handle.  Go figure.  
 I finally found two good Integrative MDs that accept insurance.  You might want to check out Andrew Weil MD’s website, there is a physician finder on his website.  
You can also look for “functional medicine” that seems to be the new buzzword. 
 
Ask the oncology clinic nurses if they know of anyone, I’ve learned the nurses in my clinic have an underground network the oncologists don’t know about. 
Acupuncture is also a very important strategy for me.  No more aches and pains.  
Good hunting!
 
 

Barb- heels should be banished from our wardrobe, they are so last decade.  I tried to sell some new beautiful heels to the consignment store and was told no one is really wearing them. (All about the wedge).  I’m willing to bet that’s the source of your hip pain.  

Barb, Tomm and Roseann, You guys are kicking it. Happy to hear of uneventful infusions as you are nearing the finish line.
Tomm, thank you so much for the link to FABNO Naturopaths. I have been keeping a list of all the complementary medications you and Michelle have mentioned and will follow thru. Forgive me for my ignorance, but do Naturopaths accept insurance or is it private pay? I looked at nearby cancer centers and no one has an integrative team, seems I have to look outside for an independent Naturopath. And the Naturopaths that I found stated cash or credit card payments to be paid with service rendered. 
Roseann, About my right chest front and back muscle aches and pains.....I definitely will be addressing this further as sometimes the pain and spasms can be crippling. I sailed thru my radiation treatments without any skin or esophageal problems, so I just chucked up my pain to damaged tissue and irritated nerve endings....I'd love to find a solution.
Been down for the count the last six days....thought it was a run of the mill cold, nope, I got a touch of the flu and am TKO. Am on the mend but still weak and intake remains minimal. Not a good way to drop 6 lbs., nor a good way to celebrate finishing a years worth of Durvalumab. A visit to Urgent care confirmed I don't have an infection to my ears (it hurt so bad)  and my lungs seem to be handling the coughing without an infection. Thank goodness, the last thing I really need is pneumonia. I always though of myself as pretty darn resilient but I do believe managing our cancer and processing the chemicals in our body does take a toll on our immune system. I've never had the flu and I've never taken a flu shot....lesson learned, things are not as before.
I visited the Air and Space Museum. Nothing was there.
Take Care all, DFK
 

Hello. all is well in Durvaland, what a bunch of problem solvers we are eh!
Barb,
Yes I now wear flats or wedgies like Michelle said, heels are so passe! #19 down yay!
Tomm,
I love your hippie jokes, Namaste haha 😃 #21! I don't have a hippie joke but sheesh your a trooper I can't recall any complaints from you since I've been a part of this group?
DFK,
I only had a few skin issues with my radiation, I had 31 daily treatments same as you 60gy, only a bit of redness in the middle of my chest a the nurses gave me samples of an awful smelling ointment called Aquaphor, really thick almost like a vaseline. But it helped a lot. My skin never peeled. I did however, get a bad case of esophagitis tho. had magic mouthwash for that, minus the benadryl, that has the opposite effect on me, makes me climb the walls! Sheesh, I do not react well to meds, who knew?
Georgia,
Welcome, I started taking Gabapentin, about 2 months ago, after my Neurologist ok'd me to take it. I had awful pain in the middle of my back that nothing would help. He told me to take it at night only. That's when my pain seems to be the worse, when I go to bed, it took a good 4 wks for me to feel the benefits. So maybe your husband should give it another try. I has helped me tremendously, I have oxycodone, but I only had to take one a few weeks ago when I had to use a snowblower for the first time! I'm sure if someone was recording me they could have sent it in to AFV LOL!
Michelle,
I called my Neurologist and asked about Naltrexone, I left a message, my nexy appt is in March, he is a stickler for "I must speak with you" "Your brain is a funny mechanism" kind of doctor, but I love him, so I will wait and see,
 
Good night all
Roseann
 

Barb- heels should be banished from our wardrobe, they are so last decade.  I tried to sell some new beautiful heels to the consignment store and was told no one is really wearing them. (All about the wedge).  I’m willing to bet that’s the source of your hip pain.  

Michelle-guess it was the heels because it’s much better today. Didn’t see the onc today but got #19. And I lost 1 lb so woohoo-gotta celebrate the small things. 

Rower ..  good information about naltrexone  ..  here is the link to the page about it.   https://www.lowdosenaltrexone.org/    I have been taking it for 3 years.  I also take 900 mgs of this a day Tru Niagen, ask you naturopath.
Georgia .. sorry to about your husbands issues. When I got radiation to my chest they went from the front to the back and I was red like a sunburn on my chest and my back for awhile after treatment. The effects of radiation should improve with time, I put on some Aloe vera  and whole plant CBD cream. If your going to look for a naturopathic doctor you should look for one that is naturopathic onclolgist fabno certified to work with cancer. This is a link to a few in your area  http://www.fabno.org/membership.html.   I believe that whole plant CBD tincture works very well for pain and should help your husband. I know 4 of my nurses and my onc use it for pain and to help sleep. 
Sillycat  ...glad your back on the Durva track
What did the hippy say while being evicted?    Namaste
 

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Hi Rosann
Ask your Naturopathic Doc about the LDN Naltrexone, it’s by prescription at a compounding pharmacy (mail order at Belmar Pharmacy in Colorado). There is a LDN Naltrexone website that talks about the cancer benefits. In addition there is a small published study on LDN and lung cancer in PubMed. 

Naltrexone is traditionally used to detox from opiates at much higher doses (50mg). It was discovered in sub clinical doses up to 4.5mg there are reportedly unexpected benefits to reduce cancer pain, fibromyalgia pain, improve sleep and increase endorphins (which is theoretically hard for cancer cells to metastasize). 
 
I got a second opinion from another Integrated MD at the University of Iowa which confirmed the LDN recommendation. Then I consulted with my pharmacist who surprised me when he said that other Kansas University patients with stage IV brain and pancreatic cancers receive LDN post chemo. Go figure.  
 
My oncologist who didn’t buy into any of the “hippie protocol” was noncommittal, only after my out of whack liver enzymes significantly reduced (way faster than anticipated) did he get curious.  My Integrated MD said LDN reduces inflammation.  
I’ve been taking LDN for 15 months. Is it working, I don’t know but it isn’t interfering and I have no pain despite a history of bone Mets which no one can explain. 

LDN is starting to make its way into mainstream however since the drug is really old the patent is long over so the pharma company has zero incentive to run any clinical trials.  
Carry on!
Michelle
 

 

 

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Hi Rosann
Ask your Naturopathic Doc about the LDN Naltrexone, it’s by prescription at a compounding pharmacy (mail order at Belmar Pharmacy in Colorado). There is a LDN Naltrexone website that talks about the cancer benefits. In addition there is a small published study on LDN and lung cancer in PubMed. 

Naltrexone is traditionally used to detox from opiates at much higher doses (50mg). It was discovered in sub clinical doses up to 4.5mg there are reportedly unexpected benefits to reduce cancer pain, fibromyalgia pain, improve sleep and increase endorphins (which is theoretically hard for cancer cells to metastasize). 
 
I got a second opinion from another Integrated MD at the University of Iowa which confirmed the LDN recommendation. Then I consulted with my pharmacist who surprised me when he said that other Kansas University patients with stage IV brain and pancreatic cancers receive LDN post chemo. Go figure.  
 
My oncologist who didn’t buy into any of the “hippie protocol” was noncommittal, only after my out of whack liver enzymes significantly reduced (way faster than anticipated) did he get curious.  My Integrated MD said LDN reduces inflammation.  
I’ve been taking LDN for 15 months. Is it working, I don’t know but it isn’t interfering and I have no pain despite a history of bone Mets which no one can explain. 

LDN is starting to make its way into mainstream however since the drug is really old the patent is long over so the pharma company has zero incentive to run any clinical trials.  
Carry on!
Michelle
 

 

 

Barb and Opal, I know two ladies here in KC on maintenance Keytruda, they both gained 30lbs.  The weight gain seemed to level off at 30lbs. They’re beside themselves because the treating physicians told them weight loss plans at Stage IV is not permitted.  Doesn’t make sense to me but these were two different docs in competing health systems.  Oh well.  
 

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Hi Roseann,
I’m excited for you!  I’m in week two of LiveStrong, so far very happy with the program.  I don’t expect it’s going to take any of this alectinib weight off but it will help with strength.  I’ve been doing Tai Chi for a year now. I believe it helped restore my oxygen capacity back to 100% (doc said given the condition of my right lung at diagnosis he’s surprised I’ve had a such significant increase) and greatly improved my balance.  I sailed through the balance assessment at LiveStrong.  
 
If you’re looking for a creative non opioid pain relieving potential cancer fighter that is inexpensive ask your naturopathic doc about low dose Naltrexone.  It doesn’t interfere with immunotherapy- my friends on Keytruda also take it.  
Keep us posted!
Michelle

Sillycat-glad you’re doing well. My port gets wonky but at the last infusion a new older nurse said to turn and tilt my head away from the port. The line runs right up into the crease of my neck and she said probably gets a little kink in it. It worked!  And to think nobody else thought of this and it’s been a problem almost every time. 
Now if she has any wisdom about how to stop this weight gain I hope she shares. I eat like a bird and walk miles most nights and still it doesn’t matter. My major complaint about this Durva journey. #19 tomorrow. May 7th is the last and I cannot wait. Enjoy the Y-

Thank you everyone for your kind words and induction to the POST Durva Club (PDC).
There's not much written about returning to a symptom free pre Durva life so I will do my best to journal my "findings" and share with all. I am still officially, with a BMI of 24.58, within normal weight parameters for my height. Of course 25.0 is considered overweight. "Overweight" is not a label I'm comfortable using but I do understand the stress of our bodies carrying that extra weight. So my 30lb weight gain, fatigue, joint/muscle issues and headaches are annoyances I look forward to looking at in the rear view mirror....adios, au revoir, goodbye and good riddance. We shall see.
Barb, Tomm, and Roseann-Opal and I (Official PDC's) are waving you forward......as well as all your faithful Lungevity cheerleaders. 
Thanks all, Take Care, DFK
P.S.-Yes Michelle, my oncologist shaking my hand at every visit was a quirky little deal and I did ponder the whole Ground Hog Day aspect, "Have we met?". But after awhile, I realized that he's just a sweet gentle man as in Gentleman, and it truly was a sweet greeting gesture. 

Rock on Wonder Woman!  I chuckled this morning about your oncologist, reminded me of the movie Fifty First Dates.  I’m quite sure you left your mark and due to your tenacious spirit you have paved a smoother road for future Durvas.    I suspect the team learned more from you given this new world of high tech treatment.  
Well done!   Just like Tom Petty said... “now I’m FREE”.   I hope you “fly like an Eagle” into this next NED chapter.  Hugs to you. Hooray!  
Michelle

Rock on Wonder Woman!  I chuckled this morning about your oncologist, reminded me of the movie Fifty First Dates.  I’m quite sure you left your mark and due to your tenacious spirit you have paved a smoother road for future Durvas.    I suspect the team learned more from you given this new world of high tech treatment.  
Well done!   Just like Tom Petty said... “now I’m FREE”.   I hope you “fly like an Eagle” into this next NED chapter.  Hugs to you. Hooray!  
Michelle

Hi Grahame,
I see an Intergrative Medicine Doctor who looked at some of the off label usages.  For my subtype of NSCLC, we elected to go with low dose Naltrexone 4.5mg qhs.  There were some small studies done in LC.  The metformin data is all over the place so it was hard for me to find a doc willing to prescribe it.   
In the book, “How to Starve Cancer” there is a great deal of discussion about this topic, particularly Metformin and statins.   
 
We’re holding IVC in reserve for now. The IM doc says you don’t want to hit this disease with the full arsenal initially but find what works best and incrementally ramp it up as needed.  She said if you go in with guns ablazing then there is no “room” if there are clinical changes.  I was diagnosed at Stage IV so this might be different for Stage III.  Let us know what you end up selecting.  I’m definitely interested in learning more.  
Michelle

Aw, Opal!  Thank you both!  

Opal-
What an awesome timely post!  This morning I woke up lethargic, feeling fat, with achey alectinib ankles.  Then I read, “motion is lotion” so here I am at the gym doing my thing.  Thanks for the little push, I needed it today!!!  Go Durva Club Go! 
Michelle

Opal-
What an awesome timely post!  This morning I woke up lethargic, feeling fat, with achey alectinib ankles.  Then I read, “motion is lotion” so here I am at the gym doing my thing.  Thanks for the little push, I needed it today!!!  Go Durva Club Go! 
Michelle