Durvalumab

[Sillycat1957]

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

 

[Opal]

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

[Rower 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
 

 

 

[Barb1260]

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

[Rower 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.  
 

[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

 

[Georgia]

NEED HELP RE SIDE EFFECTS OF DURVALUMAB

Hello,

I last posted info in August last year about my husband Foster (70 yrs) who has stage IIIB lung cancer in the right side upper lobe diagnosed in April, 2019. He began radiation and chemotherapy on June 17, 2019 and had 30 sessions of radiation and 6 of chemo. He was not able to start Durvalumab immuno until Sept 17 (had severe esophagitis and lost about 35 lbs, had no strength or stamina).  He has had 9 infusions (every 2 weeks) so far (one was cancelled in Nov. after CT scan showed lung inflammation & infection).

Current side effects are:  right front rib cage - skin is tender almost like it's bruised but nothing visible; right nipple is extremely tender; what feels like bee stings on the base of his shoulder blade on the back right side and occasionally under the right arm pit, again there are no visible signs. Front chest area over ribcage on right feels uncomfortable and tender, wearing a shirt aggravates the uncomfortable feeling, it feels like chafing against raw skin, again nothing visible. This is a consistent, daily uncomfortable feeling.

Extra strength Excedrin (or equiv.) seems to help. At his last appt on Jan 22nd with an ARNP, he described these side effects and was prescribed Gabapentin which he was told can be used for nerve pain. He took it only at bedtime for 4 nights and decided to discontinue it. After taking med, during the day he felt like a zombie and not fully awake.  The side effects seem to be worse now.

Would love to hear from anyone who has had similar side effects and find out what helped you. Have been reading through the Durvalumab forum and find a lot of useful info.

Always look forward to sharing what helps and what does not.  Thanks much.

Georgia

[DFK]

Hi Georgia,

Sorry to read that your husband had such a bad case of esophagitis and later lung inflammation and infection, but that only reinforces how sensitive he was to the radiation treatments. Did his skin remain intact during his treatments? I only ask because I have seen some pretty bad cases of radiation burns and in my mind, if that's what happens to your skin on the outside, I can only imagine what happens internally.

I can't speak directly about Gabapentin but I'm sure someone will chime in regarding their usage and dosage. I do know if it's being prescribed for neuralgia, titration of dosage takes a while to find that perfect match of pain relief and maintaining alertness. 

I noticed that all of his discomfort and pain are on the right side. I also had 30 radiation treatments at 60gy for a right lower lobe tumor and subcarinal lymph node. I completed my radiation in December of 2018 and I still have much discomfort in my right chest, right ribs and right back area. My back muscles on the right side aches all the time and standing at the kitchen sink doing dishes really irritates my right chest and back muscles, sometimes to the point where I have to wash dishes in increments. I just chalked up my pains to my radiation treatments and use Tylenol 1000mg and/or Motrin 800mg for relief.  I might have mentioned this continuous pain to my oncologist a few times and I always got the same answer, use my analgesics and if I don't get any relief, he would recommend alternatives. I never sought anything else. I do find a warm heating pad/compress comforting for my chest/back aches and pains.
 

There are other pain relievers that others have used and their experiences should be forthcoming. 
 

Take care, keep asking the questions, DFK

 

[Tomm]

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

 

[Barb1260]

Tomorrow is #19 unless the onc wants to send me for scans. All of a sudden yesterday when I woke up my hip was painful when I walk. Doesn’t hurt otherwise. I’m thinking it’s overuse from walking or wearing heels 👠 for the first time in over a year on Monday.  My fear is this is now in my bones. Tired of worrying about every ache. 

[Tomm]

Barb..

sorry to hear of a new pain ..  there is nothing to fear except fear itself 

#21 for me tomorrow .. 

[Barb1260]

Tomm you are almost there!!!

[Rower Michelle]

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.  

[Barb1260]

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. 

[Sillycat1957]

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

 

[Tomm]

#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.

[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

 

[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!
 

 

[DFK]

 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.....

 

[Tomm]

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.

[Sillycat1957]

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

 

[Barb1260]

You guys 🤣 

[DFK]

8 hours ago, Sillycat1957 said:

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!

Roseann, I love what you said, I love what your Oncologist agreed with. What a beautiful thing to be stable.

 

9 hours ago, Tomm said:

when you look for a  naturopathic physician look for one that is a naturopathic oncologist, that's the FABNO part

Tomm, Amazingly enough, there happens to be a FABNO Naturopathic doc fairly close (another plane ride but who's counting!!!!!) who also happens to have a 2018 Naturopathic graduate under him doing his residency. He will be able to write for FABNO exams upon completion of his residency, which makes two of them in the same clinic.
 

I also will take Michelle's ideas and ask around for recommendations. 
 

I think ideally, I would like to establish care with a Oncology Naturopathic doc and be able to do video-conferencing or FaceTime for follow-up. I don't want geography and location to restrict my choices, but I know I also have to be financially responsible too.....we shall see. 
 

Thanks everyone for your support and steering me in the right direction......DFK

Have you heard about the corduroy pillow......It's making headlines.

 

[Barb1260]

Ok call me dumb but what does FABNO stand for?

[Tomm]

Barb 

FABNO =  Fellow of the American Board of Naturopathic Oncology     http://www.fabno.org/

Why did Beethoven get rid of his chickens..?    all  they said was "Bach,Bach,Bach