DFK

DFK,
Thanks for your comments;  I did read them right away (& passed on to husband) but am just now getting back to reply but I do appreciate them. No his skin on back was only slightly light red after radiation, seemed to be OK with some cream on it. You made a good point about the Gabapentin - had not thought about a different dose, etc.  He did ask the doctor at next appt but she said if the Excedrin (acetaminophen, caffeine, aspirin, 565 mg) was working to just stick with that.  He  has not yet tried the heating pad we have - will bring it up again. More recently, his nipple was very sensitive, and he put a gauze pad over it which helped a lot.
Tomm,
Thanks also for your comments. I had not  heard of a naturopathic oncologist but it sounds like a good idea. I did find one only in Spokane where he goes for treatment. Unfortunately, our insurance is a Medicare Advantage Plan and there are no naturopathic doctors at all in their network; will phone but believe from the web site that there is no coverage at all if doc is out-of-network. We cannot afford to private pay. The whole plant CBD tincture sounds promising and is legal in Wa state. Believe he wants to stick to trying only one thing at a time so will keep that as an option.
Silly Cat,
Thanks much. Do you know what dosage Gabapentin you took only at night?  Will see if  he agrees it might be worth another try. As usual, your experience is so valuable to other patients - thanks for sharing.
He will have Durvalumab #10 next week and is also scheduled for a CT scan - his doctor left clinic in Dec. and he now  has a young female doctor he  has only seen twice I believe (also sees ARNP, backup for doc); from earlier scans, the tumor has shrunk a lot and the lymph node is also much smaller, which is great news; look forward to further reduction hopefully.  Just got a flu shot myself recently but cannot persuade him to get one or a pneumonia shot - both are covered by ins. Will ask doc about it at next appt if he doesn't, oh well, something to argue about I guess, lol. I don't want to "micro-manage" but he is a "hunt and peck" typist so would never post on a forum and usually dictates what he wants help with on the forum so I can pass it on.

Oh Tomm,
I think it's great you carved some time and made an effort to have your teeth checked but whoa, you sure got handed a hell of a lot to contend with. But on the other hand, priceless to have your teeth in good order.
I was fanatically religious about having my teeth cleaned and checked every 6 months which is why it was so shocking for my dental issues to rear their ugly heads BUT it's no secret that former smokers contributed to compromised dental health and yes, chemoradiation and our age makes us prime candidates for bone loss and gum recession resulting in tooth decay. Both of my "root canals" were the result of decay right under the edge of my crowns that had been in place for over 20 years....I had a good run. But still, what a miserable hand to be dealt with, on top of my flu. I remain completely indignant.....well at least a little bit. Hope your diligence for your tooth health is seamless and painless.
Finished my PETSCAN today.....managed to control my dry hacking cough (somewhat) during the procedure. Felt great to get that out of the way. Tomorrow root canal....knocking these annoyances to the side is a good thing.
Started my Vitamin C 1000mg/day. I feel so empowered!
Happy Valentines Day my friends:
I was arguing with my husband at Luigi's Diner when my best friend came over, grabbed the garlic bread and coleslaw from our table and ran off. I wish she would stop taking sides.
Take Care All, DFK
 

Oh Tomm,
I think it's great you carved some time and made an effort to have your teeth checked but whoa, you sure got handed a hell of a lot to contend with. But on the other hand, priceless to have your teeth in good order.
I was fanatically religious about having my teeth cleaned and checked every 6 months which is why it was so shocking for my dental issues to rear their ugly heads BUT it's no secret that former smokers contributed to compromised dental health and yes, chemoradiation and our age makes us prime candidates for bone loss and gum recession resulting in tooth decay. Both of my "root canals" were the result of decay right under the edge of my crowns that had been in place for over 20 years....I had a good run. But still, what a miserable hand to be dealt with, on top of my flu. I remain completely indignant.....well at least a little bit. Hope your diligence for your tooth health is seamless and painless.
Finished my PETSCAN today.....managed to control my dry hacking cough (somewhat) during the procedure. Felt great to get that out of the way. Tomorrow root canal....knocking these annoyances to the side is a good thing.
Started my Vitamin C 1000mg/day. I feel so empowered!
Happy Valentines Day my friends:
I was arguing with my husband at Luigi's Diner when my best friend came over, grabbed the garlic bread and coleslaw from our table and ran off. I wish she would stop taking sides.
Take Care All, DFK
 

Good Thursday Morning to Tomm (#22) and Barb (#20),
The countdown is on. Wishing you both uneventful infusions today. 
 
Barb, sorry to here about thrush issues from inhalers. What is MD giving you for your Thrush? I am taking Trellegy, a steroid inhaler and yes, I'm suppose to rinse my mouth after using. I will try to be more consistent. 
 
I feel like part of the Lungevity side line cheering squad holding that paper cup of water.....wishing you both uneventful finish line crossings. 
 
Recap, got the root canal for abscessed tooth behind me, and the head cold with infected sinuses with piercing ear aches behind me, then finally am looking at the flu in the rear view mirror though residual annoying cough persists.... but I am determined to finish my PETSCAN tomorrow. Results to be discussed on the 20th with Radiologist and Oncologist. But hey surprise surprise, my dentist was concerned that my tooth decayed so fast since my last x-rays were done in December and I had no dental issues.....so he had another good look at all my teeth. Well, well, well, I have another tooth abscess and this tooth may not be salvageable.....I find out Saturday after excavation if it’s s a root canal or extraction. One of my wisdom teeth. Dentist said pretty common for radiation and chemo to affect bone loss, gum recession and promote tooth decay. I was beyond upset, had my melt down and made all the appointments that need to be made. It's been a rough month but I am taking care of business and it's all okay. 
Take care everyone, DFK
 
 

Greetings to group. So #1 successfully authorised and infusion done and dusted. Mild flush is all I felt. CT scan yet to be formally reported but oncologist happy with what he saw and gave authority to proceed. Great news. Fortnightly schedule in place and presuming no significant side effects for two years maintenance according to my onocologist
whoopee 
Grahame

Thanks Tomm. Good luck on #22. I remember when I was happy to make it to #13, halfway there. Doc says it’s thrush from the inhalers so rx called in. 

Hi Barb..   Good luck today, I go for #22 in a few hours, I found this-->> 
https://www.oncnursingnews.com/conference-coverage/ons-2018/monitoring-adverse-effects-of-immunotherapy
May 29, 2018 - Schwartz suggested. She added that some toxicities have been reported that aren't yet included in guidelines, including lyphohistiocytic infiltrate around salivary glands that could be mistaken for thrush, or lichenoid reactions on the tongue. These can also be treated with steroids.

Good morning all. On my way to #20. One question please-can this immunotherapy cause thrush?  Like someone started a fire in my mouth 

Flu sucks. Yep, get the flu shot. if you get the flu anyway after the shot, it will  be less severe, or that's the theory anyway, And the flu is depressing.  Your husband is right--at least partly- you will be better. I think there can also be an end-of-treatment depression effect. Kind of like post partum depression but no baby. We get focused on getting through treatment and it keeps the mind and body occupied. We have these frequent appointments, scans, tests etc, and then it all stops and now what? We can feel like we've been cut off or set adrift to deal with the new normal. It can be disorienting.  If it's affecting you, it will get better, too. In the meantime, feel free to come on this forum to complain, vent, grouse or whatever you need to do. We get it. It's OK.

Good Thursday Morning to Tomm (#22) and Barb (#20),
The countdown is on. Wishing you both uneventful infusions today. 
 
Barb, sorry to here about thrush issues from inhalers. What is MD giving you for your Thrush? I am taking Trellegy, a steroid inhaler and yes, I'm suppose to rinse my mouth after using. I will try to be more consistent. 
 
I feel like part of the Lungevity side line cheering squad holding that paper cup of water.....wishing you both uneventful finish line crossings. 
 
Recap, got the root canal for abscessed tooth behind me, and the head cold with infected sinuses with piercing ear aches behind me, then finally am looking at the flu in the rear view mirror though residual annoying cough persists.... but I am determined to finish my PETSCAN tomorrow. Results to be discussed on the 20th with Radiologist and Oncologist. But hey surprise surprise, my dentist was concerned that my tooth decayed so fast since my last x-rays were done in December and I had no dental issues.....so he had another good look at all my teeth. Well, well, well, I have another tooth abscess and this tooth may not be salvageable.....I find out Saturday after excavation if it’s s a root canal or extraction. One of my wisdom teeth. Dentist said pretty common for radiation and chemo to affect bone loss, gum recession and promote tooth decay. I was beyond upset, had my melt down and made all the appointments that need to be made. It's been a rough month but I am taking care of business and it's all okay. 
Take care everyone, DFK
 
 

Thank you Bridget for your kind and encouraging words. It's no fun being sick that's for sure and I'm usually not one that gets TKO'd, both physically and emotionally at the same time. This flu sure as heck took me by surprise and really mopped the floor with me. But I am on the mend and feel tons better than I did a few days ago. 
Take care all, thank you so much for your support and caring, DFK

 

Hi DFK-
The flu bites big ones.  I wouldn’t beat yourself up about it though. One of my LiveStrong LC ladies got the flu shot and she just dropped out because she got the flu anyway.  

I had an interesting meeting with my social worker recently, similar to your “why now” depression.  Her insight was we fight so hard to live “normal” lives with a big diagnosis that something pre diagnosis which normally wouldn’t have have caused us to pause becomes an uncharacteristic set back.  Another entirely unwelcome reminder that our bodies aren’t the same anymore. Take care of your mind as well as your body. Scanxiety stinks.  
A lot can happen in the next seven days to improve before the PET scan.  Prayers for you! 
Michelle

Grahame 
you may know about this drug used to treat malaria  "artemisinin" but is also used to treat cancer. Artemisinin is a chemical compound in a traditional Chinese herb called Artemisia annua, or sweet wormwood. Some research suggests that it may show promise in future cancer treatments. I got it for several months  in an IV, something else to look at.
  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872176/
DFK  Hope your feeling better.  Use a CBD oil tincture for fast results if it doesn’t bother your throat. A tincture is the fastest way to get relief, so it might be your best bet if you’re hoping to stop a cough.  https://www.wikihow.com/Take-CBD-Oil-for-Cough

Thanks Tomm
I have friend based in Zimbabwe who is a naturopath and grows artemeta in their garden and swears by its properties. Thanks for link 
was not aware could use it in an infusion
grahame

Thanks everyone......put in a nutshell, I was disappointed because so many of my plans had to be shelved because of this unexpected flu. Plans that I had so looked forward to.
I have already paid for flights for Friday's PetScan for husband and I. Chances are, I should be able to complete it without a hitch, but that's predicated on my nagging hacking dry cough being resolved. I am optomistic. 
 
Take care everyone, DFK

Hi Everyone,
I think Michelle's hello (Above)  was a wake up call for me to put a halt to my current pity party. As most of you know, I completed my year/26 doses of Durvalumab on January 22nd. 
 
Man was I flying high. I did it, I finished a whole year. I had a bunch of lunches to attend, I had a list a mile long of all these projects I had put on hold. I was a force to contend with. Even increased my bike riding to every day. My husband and I were finally making plans about taking a long extended vacation. The world was my oyster. 
 
THEN, I got sick with the flu....five days home from my last infusion and BAM, I was laid out, TKO. Headaches, sore throat, queasiness and nausea, vomiting, diarrhea, ear aches, my entire body shrieking in pain. Coughing non stop. Two visits to Urgent care and 12 days later, I am finally feeling a little human again but remain weakened with about half my appetite back.... dropped a total of 10 lbs, not the best way to lose some weight. I mention this prolonged "illness" because my lungs seem to be my weak link. I was able to shake most of my aches and pains with OTC medicines but this nagging hacking cough is really quite challenging and lingering. I have a PETSCAN in 7 days and my cough has to be resolved......I am praying so hard.
 
So what's all this verbose complaining about.....we’ll, for me, it showed me I'm never far from falling apart emotionally despite all the strides I've made in the past year. I told my husband I am so depressed, why now,? why so sick? Why, why, why, I just couldn't get off of it. Him being of the male variety was very matter of fact, "You got the flu, you need to ride this one out, you will be better". Maybe from his perspective it's as simple as that but when you're the "injured" party and can barely lift your head off the pillow for almost two weeks, the light at the end of the tunnel seems miles away.
If you haven't received the flu shot, I highly recommend you get it. As I mentioned before, I've never had the flu before so never took a flu shot. Well that cocky attitude didn't serve me well. These are different times and I will never refuse to take a flu shot again.
I love you guys, thank you for letting me spout my misery.
Take Care, DFK

 

DFK-hope you feel better soon. 

Hope you on the mend soon DFK. As a medical practitioner I always have a flu shot and recommend all my at risk and over 65 get their shot.
trust you will be back on your bike soon .
lots of fluids and 1 gram Vit C a day usually helps me plus lemon honey ginger drinks plus or minus a tot of brandy. We call it “ kill or cure” remedy
Grahame 

Hi Durva Club! 
Just want to give a heads up there’s a newbie over in the Intro section, Polly, recently diagnosed with Stage IIIb NSCLC about to start immunotherapy.  She sounds like she can really use a hug.  Can you guys take a minute to send a little welcome?  
 
Hoping all is well with this gang, it’s been a quiet week!  
Michelle 

You guys 🤣 

Michelle, you are a dear and on top of your game. With your recommendations and Tomm's links, I should be in pretty good shape to find myself a Naturopathic doctor or an Integrative MD. 
Thank you for being so kind and generous.
Take Care, DFK
Tomm, Did you hear about the Origami factory? It folded.....
 

Michelle, you are a dear and on top of your game. With your recommendations and Tomm's links, I should be in pretty good shape to find myself a Naturopathic doctor or an Integrative MD. 
Thank you for being so kind and generous.
Take Care, DFK
Tomm, Did you hear about the Origami factory? It folded.....
 

You guys just kill me with your jokes!!!! Keep 'em coming 😃
My sense of humor is sadly lacking these days. As I told my Oncologist this week at my visit "The only stability in my life right now is my Cancer" She said "that's a great thing" I have to agree!
Tomm, I do get my TSH levels checked before every infusion so far they have been ok, I did have Thyroid issues in the past so I am always asking about my levels.
Here in CT, especially where I live Naturopathic doctors are a dime a dozen and tons of them take insurance, but like Tomm said the supplements are what are costly, because they are out of pocket, unless they can be billed, some will do that. Not sure if they are all Oncology types tho.
DFK, I hope you feel better soon, you need some old fashion chicken soup!
Good Night All
 

DKF   .. when you look for a  naturopathic physician look for one that is a naturopathic oncologist, that's the FABNO part and there are only about 115 in the country. Mine is cash when I see her but free to email question. The real expense are the supplements that you will need for your care plan. I take 15 different ones like curcumin, fish oil, vit d and more. Hope you feel better soon..
nice jokes..
Don’t interrupt someone working intently on a puzzle. Chances are, you’ll hear some crosswords.

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!