DFK

Tomm you are almost there!!!

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. 

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
 

#21 done yesterday, blood work is fine but I do have a few small spots that itch. My CBD tincture is helping. I'll be done in 9 weeks and 6 days but who's counting.
Silly Cat..  I did have an issue before you were here. I started this last April and was getting more fatigue with each infusion and by mid-july I needed a cane when I was outside. In late July they tested my TSH for the 1st time and it was about 30, and then it was 139 in as few weeks. I am now taking 150 mg of levothyroxine and that has me back to normal range. So make sure you get your TSH checked.
I have many jokes about unemployed people, sadly none of them work.

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
 

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
 

Congrats Roseann on finishing #11 and you are so correct, Durvalumab and it's pesky little side effects has a way of playing hop scotch with our calendar. I too gave up charting it out to #26. And very good that you dodged another "itis" on your eyes. Drops and wipes are very doable. I had a friend who had collagen plugs inserted into her tear ducts because of the hassle of using eye drops. She chose Collagen as it's a temporary measure and will dissolve on it's own in a couple of months, she can then chose to have a more permanent plug if it works for her. I'm in your camp, give me the drops and wipes. I know Tomm mentioned in previous posts that he was receiving IV Vit C prior to Durvalumab but was told to stop VIT C infusions until Durvalumab treatment is over. I have a Medical Marijuana Card but find the availability of products limiting and expensive, so I have yet to utilize it. 
Opal, Barb and Michelle
Unfortunately, I don't have access to a LiveStrong program but I'm hoping being off the Durvalumab and continuing with my biking will get some extra pounds off. Thirty pounds is a lot of extra weight to put on in a short period of time....it does stress the body. I've been a practitioner of Tai Chi (Chuan Style) and Yoga for the past 20 years. I find that Tai Chi is like an internal massage where as my Yoga ensures my core strength. Thanks for the information on Low Dose Naltrexone.....more questions for my doc.
Carrying on......DFK
 

Barb..
sorry to hear of a new pain ..  there is nothing to fear except fear itself 
#21 for me tomorrow .. 

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
 

Congrats Roseann on finishing #11 and you are so correct, Durvalumab and it's pesky little side effects has a way of playing hop scotch with our calendar. I too gave up charting it out to #26. And very good that you dodged another "itis" on your eyes. Drops and wipes are very doable. I had a friend who had collagen plugs inserted into her tear ducts because of the hassle of using eye drops. She chose Collagen as it's a temporary measure and will dissolve on it's own in a couple of months, she can then chose to have a more permanent plug if it works for her. I'm in your camp, give me the drops and wipes. I know Tomm mentioned in previous posts that he was receiving IV Vit C prior to Durvalumab but was told to stop VIT C infusions until Durvalumab treatment is over. I have a Medical Marijuana Card but find the availability of products limiting and expensive, so I have yet to utilize it. 
Opal, Barb and Michelle
Unfortunately, I don't have access to a LiveStrong program but I'm hoping being off the Durvalumab and continuing with my biking will get some extra pounds off. Thirty pounds is a lot of extra weight to put on in a short period of time....it does stress the body. I've been a practitioner of Tai Chi (Chuan Style) and Yoga for the past 20 years. I find that Tai Chi is like an internal massage where as my Yoga ensures my core strength. Thanks for the information on Low Dose Naltrexone.....more questions for my doc.
Carrying on......DFK
 

DFK, Wonderful news! My heart is happy for you! A long and winding sometimes treacherous road you have traveled my friend, but you did it  Congratulations 🏆
I finally had infusion #11 today, my port was a little wonky, but my nurse got it going Phew! I hate when that happens, but I'll take some pumping of my port over a needle stick any day. Labs are good, magnesium a little low, but nothing a little or a lot of greens won't fix in my opinion. My eye appointment went well, seems I have yet another side effect of Durva, Dry Eyes, thank goodness it is not Uveitis. Just need to use those eye drops for dry eyes and some wipes because my eyes get some crusty stuff between my eyelashes that I guess only the eye doctor saw, who knew! But I'll take that, the alternative, if it persists is some kind of plugs in my tear ducts to keep the tears in my eyes. That's not happening!
Also saw a Naturopathic doctor, he wants me to have Vitamin C infusions, Oncologist said No, when I'm done with Tx ok, because of antioxidants, makes sense, plus not covered by medicare. I have paperwork for a medical marijuana card. I spoke to my Onc about that too, she feels I wouldn't benefit from the tincture at this point, because I am managing my pain and sleep with non narcotics and am doing well, she feels it is a benefit for cancer patients who are not in as good as shape as I am, she said if I felt like getting some medicinal marijuana to help with my appetite and anxiety it would totally be my call, but it is expensive, I am on SSDI that is my only source of income so I think I may have to just forget about that. Here in CT it's $100.00 per year just for the card. Oh well. 
However, my cancer pays for a 12 week membership at our local YMCA it's called Living Strong and I get to utilize all the programs they have, it starts on Feb 11th I have been waiting since October for this to start! I have always been a Yoga Mama, so I am going to try Tai Chi, I am so excited about it yay me!
Grahame, looking forward to seeing you in our club!
Have a good nite all 
Roseann
 
 
 

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-

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 Barb,
Yes that is one of the tricks the nurses have me do in addition to the pumping, it's amazing what they have up their sleeves isn't it! I know know you certainly are doing the count down now for sure, I have my calendar marked with the infusion number I'm on so I can keep track of them. But dang it, I keep having to cross them off and change them, so now, I will just go with the flow until I get close. Like around week 18 maybe LOL! As for gaining weight, I'm right there with you, I've gained 30lbs! but I did need about 20 of them! But now it has to stop. I got my T&A back Yay! I will certainly enjoy the Y 😁
Hi Michelle,
I am so looking forward to Tai Chi, my balance is so off kilter. Can't do a tree pose in Yoga any more.  I will ask my Neurologist about the Naltrexone, is it a prescription medicine, or over the counter? Glad to hear how the Live Strong Program improved your Lung function that's awesome, I could use some of that, my oxygen levels are are anywhere from 96-98 when my levels are checked I would love to be at 100%
Wishing everyone a great night,
Roseann
 

Kind of seems like only us ladies are putting on the pounds. No where on Durva adverse effects did I see weight gain mentioned.

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
 

 

 

Hi Opal. My doc says no. The nutritionist agrees that it does cause weight gain as everyone in the practice on it is complaining about gaining weight. Que sera sera

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.  
 

Good Thursday to All,
Crossed the finish line yesterday. Very uneventful #26 infusion.
And to be honest, a little bittersweet. I was saying goodbye to the very people that have carried me for the past 17 months. The same staff who:
taught me about my cancer as I cried and sniffled,
who navigated ALL my appt's in a different city,
who taught me about my Durvalumab,
who laughed at my comedic antics and stories,
who allowed me to slum in a private infusion room for a couple hours with laptop set up while waiting for my drug,
who juggled appointment times so I didn't have to fly in an extra day,
who held my hand during numerous procedures,
who massaged doctors offices so I could see Specialists a little earlier than the usual 4 months waiting time
who kept me up to date in copies and DVD's of my medical records,
(My Pulmonologist) who gave me his personal cell so I could call him instead of flying in for ONE. MORE. APPOINTMENT, ditto for my PCP,
(My Cardiologist) who at first staid and stiff now smiles and gives me a hug when we pass in the hallways. 
(My ENT) who apologized for the long wait but had me diagnosed and fixed within two weeks of our meeting, and who explained in detail how radiation paralyzed my vocal cords, 
(And my Oncologist) who though rarely uttered more than a few words, always smiled at me and shook my hand (18 times) as if meeting me for the 1st time and always told me what my next step would be. I learned to trust this quiet and kind man in my journey, and together with the loving help of all, they have brought me fairly unscathed to NED. I am more than appreciative, I am overwhelmed with my good fortune.
So for each "today", I will do my best to be mindful of my blessings. I'll be sure to post follow-up progress reports. 
Take Care, DFK
 
 
 

I look forward to such a successful story to report when I complete my upcoming course of Durvulamab. Thanks for sharing 

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. 

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. 

Good Thursday to All,
Crossed the finish line yesterday. Very uneventful #26 infusion.
And to be honest, a little bittersweet. I was saying goodbye to the very people that have carried me for the past 17 months. The same staff who:
taught me about my cancer as I cried and sniffled,
who navigated ALL my appt's in a different city,
who taught me about my Durvalumab,
who laughed at my comedic antics and stories,
who allowed me to slum in a private infusion room for a couple hours with laptop set up while waiting for my drug,
who juggled appointment times so I didn't have to fly in an extra day,
who held my hand during numerous procedures,
who massaged doctors offices so I could see Specialists a little earlier than the usual 4 months waiting time
who kept me up to date in copies and DVD's of my medical records,
(My Pulmonologist) who gave me his personal cell so I could call him instead of flying in for ONE. MORE. APPOINTMENT, ditto for my PCP,
(My Cardiologist) who at first staid and stiff now smiles and gives me a hug when we pass in the hallways. 
(My ENT) who apologized for the long wait but had me diagnosed and fixed within two weeks of our meeting, and who explained in detail how radiation paralyzed my vocal cords, 
(And my Oncologist) who though rarely uttered more than a few words, always smiled at me and shook my hand (18 times) as if meeting me for the 1st time and always told me what my next step would be. I learned to trust this quiet and kind man in my journey, and together with the loving help of all, they have brought me fairly unscathed to NED. I am more than appreciative, I am overwhelmed with my good fortune.
So for each "today", I will do my best to be mindful of my blessings. I'll be sure to post follow-up progress reports. 
Take Care, DFK
 
 
 

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