Opal

Barb and Rower I'm on the same train your two are. Scan this friday, 2 1/2 years since last durva...   Scanxiety time until results are known... 
What did the beach say to the tide when it came in?
Long time, no sea.

Michelle-me either!  

Hi Barb!!!
Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! 
Michelle

Another CT tomorrow to see if all is still good. 2 1/2 years since last Imfinzi. 
hey Jersey girls, great to see you both still going strong. We are a tough breed. 
hugs and kisses 😘 

OPAL!!!!! 
So nice to hear that you are doing well.  We "walked" side by side through the scariest of times (plus the pandemic was rearing it's ugly head).    Yes, you are the perfect example that there is life on the other side of this.  Jersey girls are tough!!!   Love and hugs... Michelle 

Kelvin- I didn't feel really bad during immunotherapy. Worst side effect was the rash, head to toe. It didnt itch or anything just red blotches head to toe. As it appeared in one new area it disappeared in the last. Dermatologists couldn't figure it just said from immuno.  Also fatigue and lack of sleep. 
I found eating many small meals a day worked better. I got hooked on Ramen noodle soup. And milkshakes to keep my weight on. 

Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!)
Anyway like Tomm, I'm almost 3 years NED.  Yay! Due for next 6 mos CT in September. 
Please tell your Mom to have faith and hope.  At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!?  I did it and survived (without a port no less).  At this time, my husband was going on 3 years in doing treatments for PanCan.  Life was a B_ _ _ _! 
My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. 
Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough.  If that's what I must deal with now, I feel blessed. 
The best to your Mom and you. 
 

Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!)
Anyway like Tomm, I'm almost 3 years NED.  Yay! Due for next 6 mos CT in September. 
Please tell your Mom to have faith and hope.  At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!?  I did it and survived (without a port no less).  At this time, my husband was going on 3 years in doing treatments for PanCan.  Life was a B_ _ _ _! 
My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. 
Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough.  If that's what I must deal with now, I feel blessed. 
The best to your Mom and you. 
 

Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration.

Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!)
Anyway like Tomm, I'm almost 3 years NED.  Yay! Due for next 6 mos CT in September. 
Please tell your Mom to have faith and hope.  At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!?  I did it and survived (without a port no less).  At this time, my husband was going on 3 years in doing treatments for PanCan.  Life was a B_ _ _ _! 
My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. 
Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough.  If that's what I must deal with now, I feel blessed. 
The best to your Mom and you. 
 

I’m so sorry for your loss. She was a great inspiration with her words of wisdom. Hugs and kisses. 

Happy New Year to all! Still kicking the rocks around, gratefully. Everything is stable, since last scan I had in December, except a small 7mm tumor (probably a cyst) the radiologist quoted, my oncologist said no worries, all's good 👍 hmmm. Sometimes I wonder. But hey, been ok so far. So I'll take it. Glad to see everyone is doing pretty ok too. We seem to all be staying ahead of the curves for now.
God Bless, stay safe,
Namaste 🙏 Roseann
 
 

Hi All, and happy new year. It's a great feeling welcoming another year. And hard to believe the time that passed since Durva forum started. 
I was so truly happy to see posts and especially the 5 year cancerversary, Tomm. Way to go! TX for sharing. It is great encouragement, at least for me. November was 3 years I finished my Durva. March are scans and if all is well, I should be able to do scans annually. Makes me a bit nervous but I will think positive.
M Rower, sorry to learn you lost your Mom. I help out to care for mine, she turns 91 end of this week. 
Lexiecat you're in my prayers.
Barb, Ron, Sillycat, Eagle 13, Tom G and anyone I may have left off here it's great to see your posts.
God Bless, stay safe and healthy. Hugs to all.
Opal
 

Happy New Year to all as well. I’ve just been living and working and was football Grammy for a while there, not the pros my grandson. Getting ready to start spring practice, which starts February here in the south. No news good or bad health wise. 3 years since diagnosis, almost 2 years finished with treatment. Now on the 6 month schedule for scans, finally. Still have my port, scared to tempt fate by taking it out. I don’t know how I’ll get over that fear. And I get to see all the great ladies at the doc’s office every 2 months for flushes.  Michelle sorry about your mom. 
Hugs and kisses to all!!

 

Hi All, and happy new year. It's a great feeling welcoming another year. And hard to believe the time that passed since Durva forum started. 
I was so truly happy to see posts and especially the 5 year cancerversary, Tomm. Way to go! TX for sharing. It is great encouragement, at least for me. November was 3 years I finished my Durva. March are scans and if all is well, I should be able to do scans annually. Makes me a bit nervous but I will think positive.
M Rower, sorry to learn you lost your Mom. I help out to care for mine, she turns 91 end of this week. 
Lexiecat you're in my prayers.
Barb, Ron, Sillycat, Eagle 13, Tom G and anyone I may have left off here it's great to see your posts.
God Bless, stay safe and healthy. Hugs to all.
Opal
 

Hello everyone, I was diagnosed with Stage 4 NSCLC one 2015. I am EGFR so have been on both liquid chemos and pills for my EGF. In 2017 my cancer decided to visit my brain so I went through Cyber Knife radiation which worked on my 6lesions. MRI brain scans every 3months plus Pet-Scans every 3months. Since 2017 till now I have had 3 more lesions and thank God for the radiation as so far no activity. Just 1 of them shows a little activity but my radiologist will do another MRI in January 2022 to see if any more growth and if so then another radiation. My lung tumor has been dormant since 2018 but still having the Pet scans done but now only every 4-5 months. I feel so good physically and mentally so I asked my Oncologist just last year(2020) in August if I could take a break from chemo since I have been on it since 2015. I thought about this for awhile and talking to my husband, which was difficult. He of course was reluctant but agreed with my decision. My Oncologist said ok lets see how I do and if any change in my Pet scans then back on. Well it’s now been 15months without chemo and my last Pet scan showed no activity. Yes, indeed I am scared but I was scared on chemo. I am taking chance a but with all the new advancement in Lung Cancer treatment I have a lot of hope. Hope is what  makes me go on living with positive feelings that I can indeed go on with this journey living my best life. I would like to say to all of you out there that I have done a journal from the beginning of  this onset and that is the best medicine for me as I am totally in charge of my mind and say just what my true inner feelings are. This journey has made me a totally different person and in a good way. We all don’t live for the moment but with this now I have looked at my life and I missed out on so much time that I just didn’t have time for. Now I take each moment and cherish it and all the ones in my life that I so love. I see even the little things that it all matters and I feel calmness in me. This disease has maybe taught me a life’s lesion to slowdown and appreciate this life as I now have and it’s a blessing not a disease. Thank you for listening to me and there is HOPE for all of you out there. I have beaten the odds as I read in the beginning maybe 3-5years well I proved them wrong now it will be 7years in February 2022 . As the saying goes “Stop and smell the roses”. Oh so true..

Happy Durvaversary! I wish you many more.

Yeah Barb!! It's hard to believe isn't it!? You go girl!!!
Let all of us in the Durva Club celebrate many more anniversaries with you!
Opal

Yeah Barb!! It's hard to believe isn't it!? You go girl!!!
Let all of us in the Durva Club celebrate many more anniversaries with you!
Opal

Yeah Barb!! It's hard to believe isn't it!? You go girl!!!
Let all of us in the Durva Club celebrate many more anniversaries with you!
Opal

Exactly one year ago I had my 26th and last Imfinzi infusion. So far so good!!  

SteveD,
It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stopped immunotherapy was started on a "Targeted Therapy" med, Alectinib. I've been on that since. Besides the initial liver function side effects, I also had a pretty good Durva itch/rash most of the time. It also apparently damaged my thyroid and I now have to take thyroid hormone replacement pills. Just saying to make sure the doctors are performing the appropriate blood tests, including both liver and thyroid checks. Mine never checked my TSH levels until I inquired about it. I felt miserable until I started the thyroid hormone replacement and my thyroid function tests returned to the normal ranges. -Ron

Lindsay..
real life after Durva, as Doctors tell us after we find out we have cancer and we ask what to expect they tell us we are all different. I was NED when I started Durva and  stayed that way during my entire treatment year. I finished in March and still have some fatigue but am now able to mow my lawn and harvest my garden and  go to the grocery for my curbside pickup. My onc tells me non of his Durva patients has had a recurring cancer   after Durva is done. So real life after is great, your future is Bright.
I got results from my CT last week... still NED
Good news! There are well over 100 labs in America working on developing a vaccine.
Just wait til they get the German shepherds involved!
 
.

As a Stage IV patient (now stable and doing well) 5 1/2 years after my diagnosis -- I have ONLY had ONE Pet Scan and that was done back in 2015 at the time of my diagnosis.  ALL my follow-ups scans are CT Scans and and MRI's -  (I started with a brain met).  
I also know several others who are always have CT Scans.  I know many insurers will not cover Pet Scans as routine, since they are so costly.  I've asked many times and have never totally understood WHY some folks have so many routine Pet Scans.  I've always been under the impression CT Scans are totally appropriate for routine and Pet Scans are primarily for staging and/or done when a patient progressed.   
I did have one BONE scan but that was more for degenerative disc disease and significant arthritis in my hips.  Both not related to my Lung Cancer diagnosis.  
Best wishes to all with your scans -- Personally, I prefer CT Scans (quick and easy and no special prep).   IF and when I may some day have any sign of progression, then I would ask for a Pet.   

Sillycat!!  Congrats!! Welcome to Done Durva Club.  You did it!! 
I survived the infusions, all 26, no port. Went the vein route but my Onc said I had good veins no reason to give me a port. In a crazy way I got used to it  but don't know how because I'm wildly petrified of needles.  Nurses were wonderful!
Enjoy having a little extra space on your calendar now and Best Wishes for great scans.
Opal