Durvalumab

[DFK]

Happy Sunday to all,

Joe-Good to hear from you. Is my tumor gone? I suppose, since a PETSCAN measures uptake, then in that sense my tumor is "gone" since there is no SUV reading. I was also told by my Pulmonologist that I will have scar tissue where my tumor was. Now, on my CatScans, over the course of a year, you can definitely see the large tumor at diagnosis and subsequent scans show a smaller and smaller mass until the last cat scan showed no mass at all. So again, my tumor is "gone". I have a high probability of developing pneumonitis and/or pulmonary fibrosis where I was radiated. Pulmonary function tests will show how effective my lungs are functioning and how much pathology has taken place because of the radiation. I did develop Pneumonitis 4 months post chemo/radiation or 3 months into Durvalumab. This was treated by one month of high dose Prednisone and one month OFF of the Durvalumab. I included the little "blurb" of 3 years after diagnosis, if you are still in remission, it is probably due to the immunotherapy's success in training my lymphocytes to recognize and kill my cancer cells. My oncologist was very adamant in saying it is much to early to tell if my NED or remission is due to immunotherapy. My oncologist, when questioned about the efficacy of chemo/radiation never fails to tell me how I always have cancer cells circulating in my body, and how conditions have to be right for a tumor to start. Then he throws in the Carl Sagan billions and billions of cells are needed to make up a tumor. Lovely!  I started my Durvalumab treatments January 2019 and completed 26 doses January 2020. Though catscans throughout my treatment always showed my tumor decreasing in size, this PETSCAN done one month after my last Durvalumab confirmed my tumor is "gone". Surveillance scans in the future will be where the rubber meets the road.

Opal-Thank you for your kind and encouraging words. I am disheartened to hear of the challenges you have been experiencing caring for your husband. Please know that you and your husband will be in my daily prayers. I wish for you a clean scan and for your hubby, a resolution to his pain and forward movement to his chemo.

Kate-You are a survivor and I love that you are still swinging at bat despite your many challenges. Taking off the brakes on your immune system does wreck havoc on your body, no question. Your adverse response started early on which was very disconcerting for sure.  Good luck on your PETScan coming up in a few weeks. Not tolerating the Durvalumab has put you without any treatment? I'd be interested to know, after all this doctor hopping and smoothing out the wrinkles that Durvalumab brought on, what, if any treatment will your new oncologist recommend? 

Ron-Thank you for such a detailed and heartfelt update. My sense of it all is that you're hanging tough, taking the hits, making adjustments and carrying on. Admirable. Very good point you make about Durvalumab having an end point and is given with a curative intent whereas your TKI is a maintenance drug that has no end point unless it fails.  That’s a lot to wrap your head around. It never ceases to amaze me how much, as cancer patients, we are asked to shoulder, and adjust...again and again and again. Resiliency prevails and I suppose that is a good thing for us. The decision to retire is a tough one.....I wish you an easy road in making that a reality should you want that route.

Georgia-Did your husbands skin sensitivity resolve? 

Tomm- Thank you for the link and recommendation for Saturday Market in Eugene.....sounds like a fun place to hang. I especially love the artwork that comes out of "Oregon". I went to school in Corvallis and frequently visit a gal pal in Portland. Love the Pacific Northwest area and we are looking at trains, planes and automobiles for upcoming vacay.

I was having a bad day so I bought a bottle of vodka, gin and whisky and put them in an elevator and sent them to the top floor. I didn’t have a good reason. I just needed something to lift my spirits.

Take Care All and I ditto Ron....very well wishes to all as we navigate....... DFK

[TJM]

DFK. Go Breavs! (Not sure if that is the school). If it is OSU and you haven't walked the campus in years I highly recommend that you take a stroll. Nicest campus in the Pac 12. Corvallis is the best town in the Pac 12.

Avoid Eugene at all cost and NEVER wear green and yellow... 😎

[Tomm]

TJM ... your are incorrect , Eugene is the best PAC 12 football team and town with the best Green and yellow,  we won the Rose Bowl this year.  Go Ducks!!

"Worrying works! More than 90 percent of the things I worry about never happen."

 

[Kate7617]

DFK

thank you for your very kind words

no treatment now 

I asked for clinical trials, nothing being offered so needless to say I sit on the edge of my seat everyday. Not sure of anything, however Who is? I’m going to talk to new onco this week local papers are showing promising hopes about clinical trials. I don’t understand why nothing but every 3 months have PET SCAN. I don’t know???? Wishing you all the best DFK I’m so happy you made NED! Stay close, we need your optimism! Kate

[Georgia]

Quote

 

Kate,

I'm a "newbie" so keep that in mind, lol.  I read most of the postings re Durvalumab and did see one that had a resource to find a clinical trial. This may be 2nd guessing your onc but I don't believe any one doc can know about everything either.  Since you mentioned clinical trials, on this site, I found clinical trial resources Including a Clinical Trial Navigator if you want to pursue that. The link is below.

https://lungevity.org/for-patients-caregivers/lung-cancer-101/treatment-options/clinical-trials

My husband has stage 3B lung cancer, had chemo/radiation last year and has Durvalumab now #11 so far. Has had some side effects but progress is good so far. We want to be optimistic.

Everyone here has been so helpful to us, I just wanted to chime in.  Please keep posting your updates - we care and want to help if possible

Georgia

[Kate7617]

Georgia, thank you for showing you care by messaging me, truly appreciate you doing that! I made an appointment for this Wednesday to speak to my new onc regarding clinical trials and hoping for good news. thanks again, and I will keep you posted. Enjoy your day!

[RonH]

On 2/22/2020 at 10:00 PM, Rower Michelle said:

Hey Ron-

Good to hear from you.  I know you’re probably active on the ALK FB Page, I’m the lurker with ALK here.  Just a thought on the disability/retirement. I filed for disability and didn’t regret it. I received a list of key phrases from a disability attorney for my doctor to document in my medical record.  Wasn’t a fun process and the private employer sponsored disability insurance company did send at least two private investigators to keep an eye on the house (ugh).  
Social Security was a piece of cake in comparison. 
Alectinib kills my energy too while the scale increases 1 1/4 Lbs per month.  As Bob says Que Sera Sera.   Hope to see you in Denver this summer.  
Michelle

Michelle – I had remembered that you were also ALK+ but that you don’t do FB. I do routinely read the 5 to 10 posts a day on the ALK Positive “private” Facebook page that has almost 2000 members. It is quite an active page and very “international”. It’s very informative, sometimes to a point well above any possible comprehension by a non-medical person such as myself, but it is interesting to hear about what the various standards of care are in other parts of the world. Just in the past few days there have been posts from people in Russia, Sweden, Malaysia, UK…and the list goes on and on. The Admins of the FB page are quite knowledgeable regarding ALK+ NSCLC and several have direct contact with the countries top Oncologists and Researchers.  Since you mentioned the ALK Summit in Denver this summer, yes I am considering going. I would certainly like to hear what Doctors such as Lin, Lovly, Camidge and Shaw have to say on current research. There is also talk about having discussions on ST and LT disability as well as Medicare, etc.

Yea I kind of figured that the Insurance company that handles my employers LT Disability Program would be difficult to deal with and that I would see strange cars parked outside from time to time. Plus part my company's program is that you also have to apply for Social Security Disability at the same time, and appeal it if denied, and then they deduct what ever you get from Social Security from what the Insurance company pays out. It all sounded like a big hassle.

I was planning a road trip out to El Paso anyways to visit an elderly cousin this year, and although Denver is not quite in the same neighborhood (but it is in the general region), I may just add a week onto my trip and attend the Summit first and then spend a few days in the Rockies as well as stop by Pikes Peak on my way south to El Paso from Denver. I’ll probably make my decision on how my health as well as my CT results are in March and then again in early June, but at the moment chances are good that I’ll be there. 

Sorry to the Durva group for this off topic posting!

Later - Ron

[Opal]

BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.

Best wishes for continued Durva treatment.

Opal

 

[BC JOE]

1 hour ago, Opal said:

BC Joe, If I remember correctly that is what my Onc/Rad doc told me, there was slight shadow n could be scar . I don't know how they know. Im on way to get scan and meet with him now. If I find the answer I'll let you know. Finger, toes and eyes crossed for good results.

Best wishes for continued Durva treatment.

Opal

 

Good luck!

[DFK]

Opal-Prayers and positive vibes for your scan.

Michelle and Ron-Reading your posts about Alk+ was like having a Sunday coffee on my deck with you two. Very nice.

Take Care, DFK

[Tomm]

#23 done last thrusday, blood work in normal range.. just some fatigue on the day.

Barb ... how was your #22? Hope your doing well.

Money talks. But all mine ever says is goodbye

[Grahame Jelley]

Hi Grahame here 

#2 done and dusted on Friday. Bloods all at normal parameters . Scan prior to commencement  of #1 infusion showed 2 mm reduction in Lung primary and 5 mm reduction in R4 contra lateral node as result of radiation and chemo. No new disease. Next scan 3 months. So far”touch wood” minor side effect of mild dry cough , midday fatigue and minor aches and pains . Hope that side effect profile remains minimal. 
 

great support on this forum. Thanks 

 

[Barb1260]

Hi all. #21 done Thursday. Blood work ok. Just a little tired so made myself be lazy all weekend. Don’t know what it’s going to be like mentally after this is done. 

[DFK]

Barb and Tomm- Great on continued uneventful infusions.....so close to the finish line.

Life after Durvalumab-My observations after 6 weeks

1) Significant lessening of joint aches and pain. Chest muscle pain non existent. Was taking Motrin 800mg alternating with ES Tylenol daily for comfort, have not taken any analgesics in weeks. This is huge!

2) Weight stable and unchanged whereas during infusions I gained a pound every two weeks.

3) I'm not a bundle of energy but I can meet my daily responsibilities without crippling shortness of breath or fatigue and needing rest breaks. Not having to plan and be absent for every two week infusions is pretty sweet. I am enjoying my respite.

4) My heart continues to go from 75 beats per minute to 120 taking our stairs.....just 13 of them. I suppose to meet my respiratory needs, it is what it is. Saturation steady at 98-99%. After my 8 mile bike ride, I'm taching away in the 140’s, with my Saturation at 96%.....still within my target parameters. This has not changed at all since completing Durvalumab.

Take Care, Blessings, DFK

[Grahame Jelley]

Hi DFK

 

thanks for always posting such positive thoughts and giving such hope 

 

grahame

[DFK]

Grahame,

You are doing wonderfully and I am thrilled your scan showed a significant decrease in size.

Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you.  

A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal.

I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". 

I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you.

Take Care, Blessings, DFK
 

 

[Grahame Jelley]

Thanks DFK

you are so eloquent. Had you considered a career as an author?

grahame

[DFK]

Ha, ha, ha Grahame.....pretty funny, almost as good as Tomm's quips. My husband might say I try to get my point across but mostly he would say I am a great actress, as in Drama Queen 🤗

Will add one more post Durvalumab observation-No more headaches. This one was a real humdinger. Worried me the whole year but my Oncologist never batted an eyelash. Though my headaches were fairly consistent, they were never NOT alleviated with analgesics AND they were NOT consistently in the same area and the dull pain was variable from one day to the next. 
 

Take Care, Blessings, DFK

[Kate7617]

Hi everyone! Been a while wanted to let you know Monday I get a PET SCAN and follow up with Onco  on March 11th, scary times for me, needless to say. The Durvalumab didn't work for me, as I said I got Hashimoto thyroditidis  heart problems, skin basel cell cancer, my spine is degenerated, had pnemonuitis so basically my health is not all that. It truly sucks, because my former Doc wouldn't listen to me when I said what was happening. I wish I had happier news, but I am very happy that some of you guys it is working for! I could certainly use some encouragement now, I did sign up for respiratory therapy, so that is covered by insurance. I am going to wait and see how this test goes on Monday! Keep on keeping on, like I do against the odds, hey all things are possible with God!

[Eagle13]

Request a biomarker test.  It can be done with a blood draw.  Depending on the results you may match with one of the targeted therapy drugs like Tagrisso.  Durva didn’t work for me.  I was biomarker tested and prescribed Tagrisso.  I have been on Tagrisso for ~18months now with no progression.  
 

Never forget the power of prayer! 🙏🏻
 

🦅

[Tomm]

Eagle 13  ....   good to hear you have no progression.. OK more than good ... That's Great!!

Kate 7617     I hope you get good news on your Petscan.  I second Eagle13.. Request a biomarker test, they may have something like he has for you. Please check in and let us know results..

Grahm  Great news on your reduction and a good start on Durva

Carry on Cancer warriors as we fight the good fight..

I don't suffer from insanity. I enjoy every minute of it

[DFK]

Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know.

Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain  hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus".

Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. 

By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know.

Take Care, Blessing, DFK

 

[Kate7617]

Thank you so much to Eagle 13 and to DFK, inspiring and uplifting messages, needless to say! I believe I had a bio marker EFGR and it is no, if there be any others I am all ears! And thank you Eagle 13! Hey its hard enough to be diagnosed with stage 3b lung cancer, then to have Doctors that tell you....We aren't expecting a miracle, and looks like you have one or two years to live was really the worse thing a Dr could possibly say! Well I am a firey red head ( back in day) lol and now I got my Irish up again, and with God willing we will show those former Drs Just what I am made of! I'm not going to worry, worry is useless, and I continue to be grateful for each day! You are all  in my prayers and with all the prayers coming around I can't lose! Thank you again, and I will let you all know what happens with PET SCAN when I know! Kate7617 

[DFK]

Kate7617-How could you not be Irish with your fiery red hair and a maiden's name like Kate. Sounds like you got your boxing gloves back on.....a prayer jab to the right and a prayer upper cut to the left. You got this covered.

Take good Care, Blessings, DFK

 

[PShsy]

Hi everyone,

Just finished infusion #1 and am a little worried about side effects. 

Had scans done and left nodule  reduced from 4.2 x 3.2 to 2.4x 2.0. Other nodules reduced is So grateful. But am feeling more out of breath?? 

Love reading up on everyone. 

Polly