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Grahame..

the standard here is 26 infusions in 52 weeks with blood test before each infusion. Most get at least one CT every 3 months. They need to test to see if there is progression or something new and if so then no more infusions. They watch your BUN and Creatinine close and ALT, AST and TSH.       Blood test results 15 minutes, ONC consult about 15-20 minutes then get a chair. It takes about 30 minutes to get the meds and then 1 hr. for the infustion. It may be quicker where you are but the place I go does up to 200 people a day with chemo etc.  I bring my big Ipad with ear phones and a big lunch. A lot of us have a port..

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On 1/15/2020 at 1:37 PM, Grahame Jelley said:

Hi Just joined . Stage 3B adenocarcinoma left lung and mediastinal nodes. Completed radical radiation and chemo with Cisplatin and Etoposide and await commencement of Durvulamab. Interested in others experiences

Hi Grahame, I'm 3B same as you,  mediastinal but Right lung. Also radiation and same chemo.  I recently completed #26. Tomm's description of infusion was same for me. Yes labs were done each time before infusion. They watched thyroid. Actual infusion in chair was just about an hour.  Other then pinch for IV I felt nothing. I only saw my oncologist at appointment after CT scans which was every 3 mos. Otherwise I saw nurse practitioner.  

Good luck to you. 

Opal

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Hi Grahame,

Same here, had labs drawn every two weeks before the infusion and met with my oncologist every other infusion or once a month.

But before I started Durvalumab (and chemo), my oncologist recommended I have a port surgically placed. I agreed as I have a very low tolerance to pain and needles. I have had no problems with my port over the course of the year. I was also provided with a numbing cream to put on my port before the infusions so I essentially did not feel the needle going in and being removed. They also drew all my labs from my port and if I needed a CAT Scan with contrast, again my port was utilized. I guess it's all a matter of preference if you want a port.  I will have my port removed if my upcoming Scans are clean.

Also, before I started Durvalumab, "someone" had to check if my insurance would cover the infusions and you should know ahead of time if there are any costs that you may incur. Durvalumab is a costly medication that even with insurance , you may or may not have a co-pay. If finances are a concern, they have staff, be it office staff or a Nurse Navigator that can provide you with organizations that may assist with costs. 

I also met with a Nurse Practitioner before I started who instructed me on what kind of drug Durvalumab is, what the goal of Durvalumab is and what side effects the doctor would be monitoring and I needed to report. 

I was never on a regular schedule for Cat Scans but because I had some problems with increasing shortness of breath and vocal chord damage, I did have a total of four Cat Scans over the course of a year. 

This is a lot to absorb in addition to your recent diagnosis as well as your recent completion of chemo and radiation. Take care of yourself first, ask questions of your healthcare team and keep a positive attitude as much as you're able. It's a tough road we're all on but doable when information and support are within reach.

Take Care, DFK

 

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Hi Opal,

You are a tough cookie.....As much as I have an aversion to pain, I elected to have a port placed in lieu of lab draws and IV insertions. Now I'm fretting the removal of my port. I know I'll be numbed up good for the removal but it's the healing and the subsequent "healing" pain I dread. I suppose after all that I have been thru, I can weather this too.

Thanks, DFK

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Hey there Everyone, sounds like all is well in Durva land!

Well Hells bells! Been dealing with a whole lotta lotta personal crap, and just not feelin" it. Just came round to see what's going on round here lots I see 😃

Welcome Grahame! 😃 I had the same cocktail as you Cisplatin/Etoposide Yuk! Eh! Concurrent with 31 daily doses of radiation, then onto Durvalumab after 4 wks rest. I too have a port, would not want it any other way, no siree. Everyone here has lots of great things to offer and will never let you down when you have a question or what not so keep coming back now ya hear!

I had to skip Infusion #11, really upset me, seems I may have fallen into the 1% category of rare side effect of something called Uveitis? Another freaking "itis" that we as cancer patients have come to know all too well, well myself anyway. I have been complaining about my vision for about 2 months now. I was told to try eye drops or artificial tears. Which I would not, because a long time ago, an eye dr had told me never to use them because my eyes would become dependent on them and my eyes wouldn't make tears naturally. If that was true, idk. But I never used them only when I had hangovers LOL! To get the red out! Any way I have an appt to see an Opthamologistt on Wednesday. My eyesight is pretty important.

I sort of remember Charles I think it was having trouble with his eyes at one point? 

DFK you will not be having Twilight to have your Port removed? With my level of anxiety I could not handle that! When I had mine put in I told my surgeon, the way it goes in, is the way it comes out, he said of course! I hope so.

Tomm Congrats on still being NED!

Opal there are a few tough cookies as DFK says at my Cancer Ctr that have their infusion like you did, Nope I could never do that, I have the worse veins and I cringe at the site of needles still. I like your comment about motion lotion, it works.

You can beat me up, but ya can't keep me down!

Roseann

 

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Thanks Roseann

great post on here and most helpful . Good to hear various options port versus peripheral vein 

This was second go at Etoposide and Cisplatin  I also had 29 radiation. 
2009 I had seminoma (testicular cancer) and had Cisplatin daily for 5 days eveyb4 weeks x 3 cycles , Etoposide and Bleomycin . I found that regime much more challenging I must say. Quite surprised how I got through the last 6 weeks with as little side effect as I did. We imagined much more significant disability 

. now we wait and see what happens with Durvalumab

Have a great week

grahame

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7 hours ago, DFK said:

Hi Opal,

You are a tough cookie.....As much as I have an aversion to pain, I elected to have a port placed in lieu of lab draws and IV insertions. Now I'm fretting the removal of my port. I know I'll be numbed up good for the removal but it's the healing and the subsequent "healing" pain I dread. I suppose after all that I have been thru, I can weather this too.

Thanks, DFK

Hi DFK,  Thank you, but no tough cookie here. My doc said I have good veins (hope they still are) and there was no need for a port unless I really wanted one. I get weak in the knees and was more afraid of a port so I declined. I will say some infusion staff were so good I never felt  the needle. 

Anyway, I think you got this and will breeze thru your port removal just fine. Remember you came out on top before and you will do it again. Sending good wishes and prayers your way.

Take good care,

Opal

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Sillycat  Roseann,

sorry to hear you missed #11 .. I found this link that may be of interest to you.  https://www.cbdhealthcentral.com/can-cbd-help-treat-uveitis/  ..you may find more info. if you search for cbd-uveitis.  If you do try CBD try whole plant and not Hemp.

What do you call the wife of a hippie?

Mississippi

 

 

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Tomm,

Thanks for the joke, maybe that's my problem I need a wife not a husband LOL!!!! Just kidding, I read the article very interesting. However, I am starting to get a little dismayed about my vision here. I started to complain about it quite awhile ago, I looked back in my side effect journal that I was keeping it started in October. So that's 3 months, maybe that's not too long? I guess I will find out when I see the doctor on Wednesday. I do have arthritis too. Durva has a neat little way of turning that into Rheumatoid arthritis, so I'm hoping that I just have an infection brewing that can be treated with an antibiotic, I am already on 5 mgs of steroids daily for my side effects. I sure as heck do not want any eye pokes!

I wouldn't be against CBD oil, but it's still not legal in my state CT as far as I know. We can get the kind with Hemp but that is useless as far as I am concerned,. I know at one time my Neurologist was going to give me a script for medicinal marijuana for my Epilepsy.  I was a hippie back in the day when things were easy to come by LOL! Now, I would have to depend on a doctor, do they even prescribe CBD oil? I'm not up on that. I am scheduled to see a Naturopathic doctor on Thursday too Yay! 

So with all of that being said, Thanks again for the funnies and the link. Have a great evening

Roseann

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Roseann..

here are a few links on CT pot laws and where you can buy it.  Your Naturopathic doc. may be able to help you. It's good for arthritis too. I take some tincture most days... really good for sleep.

https://portal.ct.gov/DCP/Medical-Marijuana-Program/Qualification-Requirements

https://portal.ct.gov/DCP/Medical-Marijuana-Program/Connecticut-Medical-Marijuana-Dispensary-Facilities

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Tomm,

Thank you! I did not know this. There are some not too far from me, how about that! I never knew. I will have to see if they are still there, one street I go down all the time, there are no signs posted? Seeing how it's in a crazy town I can understand why. Gonna have to check it out. Next time I pick up my grandkids from school

Have a good night 😃

 

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Greetings to forum.  I wondered whether any of you have had any experience or advice around the use of “ re-purposed drugs. We have a local clinic here where Inam going for Vitamin C infusions in between Radiation and chemo completion and start of Durvulamab. They also recommend use of met form in , a diabetes medication, a statin as used for cholesterol lowering and mebendazole a deworming medication.

I am interested in the forums comments , experiences etc

thanks Grahame

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Grahame-I have no personal experience with Vitamin C infusions, Metformin, a cholesterol lowering Statin or Mebendazole that is used either alone or in conjunction with Durvalumab immunotherapy. I have read on the benefits of Vitamin C and Metformin. The dog dewormer has been making the rounds recently but I have not read enough about it to have an opinion.

Roseann-So sorry to hear your #11 has been held in lieu of possible Uveitis. Hoping you get that eye evaluated el pronto. And please share what your Naturopathic MD has to say. You seem very spirited and focused to take care of business. Good for you, keep blazing.

Opal and Roseann-I am beyond ecstatic to have had my port inserted but it was a traumatic insertion. I requested conscious sedation because I KNOW I cannot handle even the mention of pain. But the radiologist took quite a bit of time convincing me it would be a short procedure, a walk in the park, most patients get by very easily and comfortably with just local anesthesia. We went back and forth about it and he told me that on the day of my procedure, I could opt for either. Well stupid, stupid me believed him about it being nothing more than an IV stick.....so I gave consent just for local numbing.
 

And for me it was horrific. Though I was numb, I felt every tug and pull and manipulating that was going on and it was not conducive to feeling calm and nurtured. I could hear the Radiologist instructing his team on what he needed and on how the catheter was not cooperating.....words no one should hear when you're lying on the table, AWAKE and anxious. To add insult to injury, they bandaged me up good and secure, only for me to hear the words, "Aw shucks, I forgot to flush her port". Off came all the layers of occlusive bandages stuck like super glue to my skin because they used benzoin tincture. So my skin was ripped raw and ANOTHER dressing was applied after I was flushed with Heparin. Took my skin a couple months to heal from that assault. 

I love my Port, but I will never let another Physician convince me what is best for me when I KNOW myself better than anyone. I really wanted to trust what my radiologist was saying but he should have listened to my aversion to pain and needles and my ease into anxiety with intrusive procedures. So after grand standing about this whole Port thing, you bet'cha Roseann, I'll be knocked out plenny good with conscious sedation for the removal. Opal, again, you are some tough cookie to have had the fortitude to take those needle sticks week to week. I applaud you. 
 

Take Care all, DFK
 

 

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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

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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

 

 

 

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DFK, welcome to Post Durva Club 👏. You did it!!

Your updated post gave me goose bumps. So can relate.!  Did you ring tge bell?  And may I say YOU are a "tough cookie" or wonder woman. Your  travels of getting up and going to the airport then same return trip. Yikes, I complained some early mornings walking to the car cause I hated the depressing ride into the city. I stopped complaining after I read your post on your infusion trips. 

Will be looking for your follow up progress. My progress report on weight gain not great. I only lost 3 pounds since November and I'm not eating ice cream or junk. A ways to go. 

Also mindful of my blessings,

Opal

 

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DKF

really great news that your NED and treatment is complete, sounds like you had a great team. I want to thank you for posting the good and the not so good of your journey.

 

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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

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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. 

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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

 

 

 

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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-

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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

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