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
 

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
 

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-

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.
 

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.
 

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.
 

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
 
 
 

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

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
 
 

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..

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..

Barb and Tomm, you're almost there!  You're doing great. You got this!
Tomm, nice going on NED! 
Wanted to share, I remember I was really feeling the fatigue more and more, as I got closer to #26.  My joints were screaming a little more too, and at #22, I just wanted to stop! BUT.... Now 10 weeks post infusions I am happy to say the fatigue is just about gone and my joints feel much much better. I think part of the secret is to move more, motion is lotion. Once you get moving cause it's hard to start, it gets easier on the joints and feels better. As for fatigue, take a nap if you need to, you deserve it. For a little achy joint or muscle I take an ibuprofen and it helps. For those who gained a few, I will report I'm having to work at losing the pounds I seemed to pick up. It's my current challenge.
Wish you both and everyone else counting down on Durva the best.
Opal

I got #20 yesterday and was fatigue for the rest of the day, recovered today. No other side effects. My glucose is up a bit and so was my ice cream intake.
CT results yesterday... still NED

#18 is done.  Just tired last night. No other side effects. Tomm glad you’re doing well. Only 6 for you and 8 for me. Have a good weekend all. 

I got #20 yesterday and was fatigue for the rest of the day, recovered today. No other side effects. My glucose is up a bit and so was my ice cream intake.
CT results yesterday... still NED

Welcome Grahame,
I'm sorry you have to join us but you are in a group that does share. This group was started last August, you might start on page one to see what a lot of us have learned. There is one thing that has effected most of us:  Primary hypothyroidism was the most common abnormality, occurring in 12% of patients before, 38% during, and 23% after immunotherapy. It is important to have your TSH  tested before and during treatment, unchecked my TSH went up to 139!  I also use a Naturopathic Oncologist  that has me using over 12 natural supplements to help, she knows which ones are safe with Durva.  If you ask a question you will find someone with the answer here..
good luck on you journey

Good Wednesday to all,
Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
Enjoy your day and greet it head on with gratitude.
Take Care, DFK
 
 

#19 infusion yesterday, no side effects and onc asked me to stay boring.  Still taking some CBD tincture in the day and THC tincture at bedtime. 
Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help.
Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden

#19 infusion yesterday, no side effects and onc asked me to stay boring.  Still taking some CBD tincture in the day and THC tincture at bedtime. 
Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help.
Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden

#19 infusion yesterday, no side effects and onc asked me to stay boring.  Still taking some CBD tincture in the day and THC tincture at bedtime. 
Sorry to hear some are dealing with side effect but it sounds like we are all getting the best care with onc that know how to help.
Happy New Year Durvas!! .. the best is yet to come, it's not to soon to plan your garden

Merry Christmas and happy new year to my fellow Durvas. May 2020 bring us all to NED if not there already!!!  🎄

CT results compared to a year ago-from 6.8x5.8 to 2.8x1.9cm. The 5mm found in Sept on left lung is now 2mm. Nothing new.  I guess this expensive stuff is working. Happy Holidays!!!!

Hey!  Are all us Durvas feeling so good we’re running around doing holiday preps? No posts for a solid week. I’m going to take that as a good thing!!🥳