Update on my husband, D

Portal Forums Lung/Thoracic Cancer Lung Cancer Member Updates Update on my husband, D

This topic contains 74 replies, has 27 voices, and was last updated by  slimer 3 years, 2 months ago.

Viewing 15 posts - 61 through 75 (of 75 total)
Author Posts   
Author Posts
February 7, 2014 at 2:46 pm  #1262119    
catdander forum moderator
catdander forum moderator

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.

With Love,
Janine

February 7, 2014 at 3:24 pm  #1262120    
JimC Forum Moderator
JimC Forum Moderator

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.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

February 7, 2014 at 3:24 pm  #1262121    

cards7up

Congrats to your D! And here’s to many more years of NED!
Take care, Judy


Stage IIIA adeno, dx 7/2010. SRS then chemo carbo/alimta 4x. NED as of 10/2011.
Local recurrence, surgery to remove LRL 8/29/13. 5.2cm involved pleura. Chemo carbo/alimta x3. NED

February 7, 2014 at 5:01 pm  #1262126    

slimer

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!

February 7, 2014 at 8:03 pm  #1262130    

heartspy

Dearest CD:
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


My Beloved,43 year old husband passed away on 4/17/13 from NSCLC w/ EGFR+ mutation. My heart hurts with grief, but remains full of gratitude to GRACE .

February 7, 2014 at 10:29 pm  #1262139    
Dr West
Dr West

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!

-Dr. West

August 27, 2014 at 10:08 am  #1265602    
catdander forum moderator
catdander forum moderator

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.

xoxo,
Janine

August 27, 2014 at 10:21 am  #1265603    
catdander forum moderator
catdander forum moderator

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!

August 27, 2014 at 11:11 am  #1265604    
Dr West
Dr West

Janine,

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.

-Dr. West

August 27, 2014 at 6:32 pm  #1265607    

Luke

Dear Janine

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.


Dad (then 63) dx Stg.IV lung adeno with brain mets in 2011. EGFR / ALK negative. BRAF positive.
First line: Carbo+Gem / WBRT
Maintenance: Alimta
Second line: LGX+MEK clinical trial
Third line (present treatment): Keytruda

August 27, 2014 at 8:38 pm  #1265608    

bob4beth

Dear Janine

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

Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

August 27, 2014 at 9:09 pm  #1265609    

sawyer6

Janine,

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.

Best,

Seth


March 2014: 83 y/o dad dx with stage iv squamous cell carcinoma, mets to spine, rib
Initial treatment plan 4-6 rds carbo/taxol
April 2014: dx changed to adenocarcinoma, continue original treatment plan
May 2014: 33% shrinkage of tumor in lung; treatment break after 4th round carbo/taxol
July 2014: Lung stable; growth of spine and rib met; radiation to spine

August 28, 2014 at 9:08 am  #1265615    
JimC Forum Moderator
JimC Forum Moderator

Janine,

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!

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

August 29, 2014 at 7:16 am  #1265618    

marisa93

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!!!!


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

August 29, 2014 at 11:59 am  #1265628    

slimer

That’s wonderful Janine. Sorry about the loss of your pets. I well know how that feels.

Viewing 15 posts - 61 through 75 (of 75 total)

You must be logged in to reply to this topic.