Lorrie, D is still paying for over 2 years of chemo with his own veins. One year off and he has neuropathy and cold hands. I don't think it will be an option moving forward.
Speaking of moving forward........D is still NED 1 year without treatment.
Next scan, CT in 6 months.
Thank you all for being so supportive, I just wish everyone could be as lucky.
Fantastic news, Janine! So very, very happy for you and D! Enjoy the scanxiety-free months!
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Congrats and here's to continued success and NED! Take care, Judy
That is wonderful! So happy for both of you -- congratulations!
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
What great tidings. Still NED and 6 months to next scan! Go D! I almost would be willing to take the risk with active cancer to have a scan every 6 months. This every 3 months is getting old, and you are almost in perpetual Scanxiety mode.
Right now I am on my second and final month of a shortened Gemzar cycle. Will have my 73rd Gemzar infusion later today and will complete 75 before the next CT. If further growth beyond the two areas of 5mm growth on last scan, I will go for the Merck PD1 trial. If stable, I'll argue to continue Gemzar even if I lose out on the trail. I just feel too good.
Dr. West doesn't know this, but he saved me from being taken off Gemzar almost 1 year ago because I read his review of the MSK radiology accuracy study. I argued that the radiologist measurements finding progression were wrong because it was just mm and the smaller the tumor the easier to get 20% growth. There was also big growth in mediastinals that I just couldn't buy. I asked my onc to go by the "clinical correlation", which was that I was looked perfectly normal and felt better than before cancer. He agreed to another cycle. Sure enough, on the next scan the &^%%$# radiologist had me shrinking, when the truth was probably just a more accurate measurement or another imprecise measurement but coming in lower. I hope that is my case again, but I doubt it. Now I am just hoping for STABLE. D's story still keeps me hoping and going.
This is exhilarating news! You and D DESERVE to be this lucky.
slimer, D had a small progression about 6 months in gemzar that really was close to enough to make a switch in treatment. I don't remember what the numbers were but I put in my 2 cents worth to stay the course which he did and next scan there was shrinkage. I wouldn't have had that kind of assurance in my input if it weren't for Dr. West and Grace.
They're actually seeing real faux progression then shrinkage with the pd 1 and or pd l1 drugs.
Thanks to all for your excited words of congrats. We all deserve to be so lucky. Cyber xoxo to my Grace family.
Congrats Janine! Happy for you and D and wishing you continued good news.
D's CT scan on Monday was NED. That's NED for 2 years, 1 1/2 years of which he's been off treatment.
Dr. Gore didn't speculate about indolence this time instead his speculation focused more on the idea that the 2 mets weren't mets; 1 spine, 1 opposite lung. That leaves us with what we know for sure, D doesn't biopsy well, after 2 core needle and a VATS negative biopsies, an open thoracotomy/biopsy found cancer cells to the pancoast tumor that caused destruction of 3 ribs, reached just into lower brachial plexus, and so very close to a vertebral foramen (all quite unresectable as we well knew). He had concurrent chemo/radiation etc. for 3 years. This all has left his 115 lb 5'11" body quite well devastated yet he will no doubt finish the job he started this past fall, deroofing/roofing our house
You'd have to be a Grace member type to know just how lucky we feel. I cannot, cannot, cannot express my joy for myself and for the spark I've seen in D since Wednesday. We're so lucky. Small words for the enormity of the emotions I feel.
I still hope, as I have all along that he is cured. Hope isn't something that I try to control, though I do maintain it with a healthy dose of real possibilities. No matter what, we are so lucky.
Two weeks ago I ran out of my antidepressants and didn't get around to filling it because it seems I'm doing so well. I started taking them a couple of years ago and immediately enjoyed not crying so. Since we got the results Wednesday I noticed I've started crying more. Not the least of it over Jim's love story and of course D's wonderful fortune. So mostly over good things. Though just earlier I couldn't read posts from certain spring while looking for info. I felt so devastated. Not to mention how overwhelming reading through this thread just was. So I don't know yet whether I'll weather going drugless, we'll see.
D's next CT will be August 25, 5 years to the day that he was dx with lung cancer.
Wow, Janine, that's just such incredible, wonderful news!!! I am so happy for both of you. I know exactly what you mean about how good it can feel to get a great scan report, and to see your best friend/love of your life jump started by the excellent news.
I'm also in tune with you on the crying thing. I've never taken antidepressants (although perhaps I should have), but I do know that I became much more emotional after Liz's diagnosis. Not only did tears come more easily for both good and bad news, but I became much more open about sharing my feelings with others. Being active on GRACE, I have also shared the triumphs and tragedies of many members and their loved ones. But though I've suffered the loss of a number of friends here, those friendships have a special place in my heart that makes the pain of losing them at least a little more bearable.
As far as not trying to control your hope, I totally agree. As a long time follower of the hapless Chicago Cubs ("anyone can have a bad century"), I have always told friends and doubters they need to enjoy the good games and successful parts of a season and not worry about the end of the season, otherwise you'll never have anything to enjoy. Kind of what life is all about, right?
Please give my best to D.
Congrats to your D! And here's to many more years of NED!
Take care, Judy
Wow, Janine, you know how thrilled I am by that news. Congrats to you and D. Sure sounds as close to cured as you can get!
This makes "the spy's heart" very happy. I think of you and D, so often. This news of hope brings a smile back to my face. Thank you for sharing and please tell D I love his stamina! As for you and the tears...let em' roll..they cleanse the darkest fears from our soul. Meds or not, they are a part of our experience and strength. Ginormous hugs to you. xoxo
I also want to express how happy I am for both of you, and how lucky the GRACE community is to have you so deeply involved, both for the knowledge and the hope you provide.
Here's to many more joyous anniversaries!
Jim, Judy, slimer, heartspy, and Dr West,
Thank you all so much for sharing in D's best of luck. It means the world to me to share our experience with those who understand all to well what it means to have or love someone who has lung cancer.
Monday August 25 marked the 5th year anniversary of D's open thoracotomy dx. He celebrated by having a CT. Today an appointment with his onc revealed another stable scan and it was good to watch his face relax as his scanxiety has been building for over a month. As has happened before with both good and bad news D's nurse let us know the results so we didn't have to wait on the onc to arrive. As happens with good doctors he spends as much time as needed with his patients so you never really know how long you may wait in that last spot before finding out results. So I'm eternally grateful to our nurse for handing me the report before we even entered the exam room.
I don't know where I'd be without Grace but I do know I'd be a different person today without it and all of you that make this site.
I'd like to use this space too to share some other news. For anyone whose spent anytime here and looked at any of my profile pics you know D and I have dogs and cats we love. About 6 weeks ago our 12 year old husky girl died unexpectedly after being sick just one day. A week later we had to have our 15 year old german shephard dog euthanized after a 9 month long illness (he'd not walked on his own for 9 months). We are obviously devastated by our loss.
D was a cabinet maker before nsclc with his shop in our backyard so Jocko and D were able to spend all their time together. With few exceptions they were inseparable, working, camping, canoeing. When Jocko was 3 a friend brought over a found young husky. She got along with all our other pets (2 ferrets, 2 cats, a dog and a plethora of fish and turtles). I've never seen 2 animals so bonded as these 2 dogs. It's been such an experience just watching them.
When D was dx our german shepherd boy, Jocko developed a skin condition and lost most of his hair along with a lot of zeal for life. In fact he seemed to be following a similar path as D, hair loss and extreme fatigue to name just 2 obvious symptoms they shared. When D finished first line chemo his hair was all but gone as was Jocko's. At this time Jocko developed hip problems that were soon wonderfully stabilized by surgery. Soon they both grew their hair back and began to feel better.
I'm glad D's cancer is...where ever it is if it is...and sad our 2 wonderful dogs are gone. Alas we're not dogless. My mom's dog, Holly has lived with us for 5 years.
Life is a roller coaster, HOLD ON!
I'm so happy for your 5 yr anniversary from D's surgery, a real reason to celebrate, especially with another stable scan. You both deserve it.
I'm very sorry for the loss of two loved dogs. Mine is only 6, but I am thinking about getting another in the next few years so that he has a companion and so that we are never dog-less...or even just quickly buying a "rebound dog" immediately after losing Bear, hopefully still a long ways away. I know that I'm not alone here in recognizing the place a beloved pet can have in your life.
Overall, though, let's focus on the great results and occasion for you to celebrate. Thanks for all you do here and for the GRACE community.
I am very happy to hear that D and you celebrated the 5th year anniversary, and especially with an uneventful scan. Here's to more uneventful and unremarkable scans!
I am of course saddened to hear that your dogs have passed. I had a schnauzer which died about the same time my dad was first diagnosed. She was loving, loyal and also, I would like to believe, clairvoyant. This may sound romantic but I would also like to believe that she guarded us against all threats, including the threat of disease. Perhaps, at a spiritual level, our dogs laid down their lives so that we may go on.
I would like to join the happy chorus celebrating D's 5th anniversary. I was not involved in Grace when D was first diagnosed but I can appreciate what both of you have been through. To be NED after five years battling lung cancer is simply amazing and I am so happy for both of you. This has got to be a source of inspiration for many victims - just to know there are some who beat the odds. Sorry to learn about the dogs. Pets are so important for both victims and caregivers. I absconded my daughter's poodle when Beth got sick (while she was in the hospital I could not bear coming home to an empty house) and I do not think I could have made it this far without his constant devotion.
Congratulations on the wonderful news about your husband's scan! I hope he continues to have good scans for a long, long time.
I'm sorry to hear about the passing your dogs. We have three dogs and two cats, and their unconditional love for us humans is quite a remarkable thing to be a part of.
I'm so happy for you and D! Five years is a terrific milestone, and for someone like you who has provided so much help to GRACE members over the years...this great news couldn't come to anyone more deserving. As Bob said, D's success is an inspiration to anyone who reads about it.
Condolences on the loss of your dogs. I know how much a part of the family pets can be, and I'm glad that you have Holly to keep you company and help celebrate your good news.
Best wishes to you and D, with hopes for many more NED scans to come!
So glad to hear of D's stable scan!!!! How wonderful to be 5 years out, yay!!!!!!! :-P :-P :-P
I'm am also very sorry to hear of the loss of your beloved pets. Euthanasia is a very tough thing to do, even though it's in the best interest of the dog. We had a shepherd that had to be put down(for other reasons) and it was a very difficult decision. A sudden loss of a pet is just as difficult. How does Holly seem to be coping? I'm glad you have her to help you adjust to the loss.
Life is for sure a roller coaster! All we can do is hang on and enjoy the ride as much as possible!!!!
That's wonderful Janine. Sorry about the loss of your pets. I well know how that feels.