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KimC

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Hello all. I've been visiting this site since my dad received news of suspected LC Oct 30/09. As our world has changed forever, your info and insight has been a great source of help as we attempt to navigate this new path. The stories you've shared of personal challenge and strength are inspiring and touching. I thank each of you for sharing and would like you to know you're all in my thoughts.

My sweet gentle 67 yr old dad is facing this horror with such grace and dignity. He'd lost a great deal of weight this summer (after losing his 93 yr old mother to a C diff outbreak in March, as well as caring for my 65 yr old mother who has been ill since July) so his family Dr sent him for a chest x-ray.

Oct 30 he was told there was a shadow on the upper left lung. The process since then seems to have taken forever -

Nov 4 consult with respirologist

Nov 10 CT (2.1 cm lung nodule, lymph nodes, thickened pleura - all left lung - plus spot on liver )

Nov 18 - endoscopy & colonoscopy re: weight loss - all clear

Dec - biopsy of lung nodule upper left (cancer confirmed)

Dec 10 PET scan (lung nodule, some lymph nodes in centre of chest & pleura as well as parotid gland lit up - nothing in liver, thankfully)

Dec 17 - got results of PET scan, told stage IV and inoperable & referred (finally) to cancer clinic

Dec 21 consult with oncologist - chemo will start just after Xmas. Will book an MRI.

We've been so worried about dad's weight loss, down to 120 from 160 & accompanying weakness when he needs his strength the most. At our urging the oncologist prescribed a steroid to help with appetite today.

Any suggestions, thoughts would be appreciated to deal with any aspect of what lies ahead.

I've found the Dr's have been upfront but not necessarily positive or encouraging, so it's a hard job to keep dad's spirits up. I've relayed positive stories I've read here & think where there is life there is hope. Sorry this post is so long.

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The best advice I can offer right now is to research the condition called Cachexia. that's what is happening right now it sounds like to me ! This is not good though. Does your dad do the ensure or Boost shakes to help him out?? You have to put the weight on ! Cream based soups are good and you can also try some of the weight gain formulas in a shake mix for him. Now the important thing is to keep Oncologist informed of these to be on safe side though to be on safe side. The other idea is to make sure dad can eat what he wants when he wants! I used to cook breakfast for my wife at 3 am cause that was when she was hungry. and smoothies for dinner for her.

Do a little search for cachexia and start here! You will find some info that I have found on the subject!

Hugs and prayers for you and the Family going into this fight!

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Randy is absolutely right. The best guidance right now is "eat what you want, when you want." Don't worry about that ideal balanced diet for a while. It's more important to put on some pounds. At one point early in my cancer career I needed to drink three of the high-calorie Ensure, Boost, or Walmart clone "plus" beverages every day in addition to whatever else I could get down. Cancer puts out byproducts that cause calories to be burned faster than normal, so you need more calories than normal to have any chance of maintaining weight. My favorite was the packets of Carnation Instant Breakfast mix stirred in milk (soy or dairy). The variety pack has several very appealing flavors, much better than Ensure/Boost/etc.

Let us know what chemo your dad will be receiving so we can give you a heads-up on side effects — also the specific subtype of lung cancer if you have that information. Best wishes and Aloha,

Ned

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Kim

My husband was diagnosed with stage 3A NSCLC in his left upper lung near the pulmonary artery in January of 2007 and didn't start his first chemo and radiation treatment until the 16th of April after multiple tests, broncoscopies and so on. The Doctors were blunt, realistic and to the point without ever completely taking away the feeling of hope but this very site and cancer Grace and all of the super people here supplied all of the hope and experiences that we needed while the Doctors did what they do best.

Ron was spared the massive weight loss that so many dealt with and ate pretty much what he felt like throughout his treatment, upping the ice creams and puddings when the radiation to his esophagus affected him the most. His most favourite was when he found cartons of "strawberry milk" and he downed it like nectarine. During and post treatment, our walks would usually involve a soft icecream sunday at the Dairy Queen.

He would also get lots of rest, if he was tired, he laid down, if he couldn't sleep he would sit back and relax (with his feet up) as they tended to swell more while he was on the Cisplatin. Our walks would be frequent and short and easy going as he experienced poor balance and neuropathy as well but we did enough to keep his knees limber and his heart working out. He took everything in stride and with dignity while allowing himself to be pushed but only so far.

He is almost 64 and it will be three years next month and he is currently NED so please know that anything and everything is possible.

Sandy

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Thank you all very much for the feedback & good thoughts.

The biopsy of the nodule is adenocarcinoma. The additional issues with the lung lining were noted on xray, CT & PET and he had significant asbestos exposure over his 45 yrs as an electrician.

Not much luck so far with Ensure/Boost type drinks. Each bite he manages is a small victory to us at this point. Dad takes many meds for rheumatoid arthritis & finds they upset his stomach & make it difficult to keep food down.

In a bit of a fortunate coincidence, the methotrexate he takes for RA might have been helpful so far in slowing down the cancer due to its properties as a chemo drug.

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Hi Kim, welcome. I was dx'd with stage III adenocarcinoma but am told if I were diagnosed today, it would be IVa. Like your Dad, I had a malignancy and thickening of the pleura. It actually disappeared once and I had no evidence of disease for a year. It came back and the oncs suspected it would but I went back on chemo and am doing fine. The scans get better each time. As long as there is life, there is hope.

Keep us posted on your Dad's treatments and progress.

Judy in Key West

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Kim

I'm sorry you have to be on this site, but glad you found us. Like you this site was a big relief, everybody understands here and has great experience and ideas to share. Like every one has said Dad needs to eat. Like you said one bite is a victory. I ate every couple of hours, it doesn't have to be a lot in fact the idea of "meals" got thrown out the window in my case. I would have half a cup of soup, ice cream or half a sandwich or just a piece of toast. What used to be my "favorite" foods sounded horrible and things I never really ate that much of all the sudden that's all that sounded good. Just go up and down the aisle at the store and by differant things, little cans of fruit, jello or pudding. I also liked cheese and pretty much anything dairy. Also one day I would like something and the next day I couldn't stand it. Trying to get somebody to eat with cancer is a challenge. Good luck to you and Dad.

Dana

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  • 2 weeks later...

Hello all. Hoping that everyone enjoyed a special holiday with their loved ones.

Just an update since my dad's first visit to the oncologist Dec 21. His MRI is scheduled for Jan 6 & hopefully there will be no surprises.

As of last week's meeting, dad was to start chemo (the only option offered) this week. He saw the Dr. yesterday, had an xray & bloodwork & was told he wasn't strong enough for chemo at this point. His potassium dosage was increased & he's being referred to a GI specialist to look into the trouble he's having eating/keeping food down or passing through so quickly - something I'd pushed for 6 wks ago.

Interestingly the Dr. mentioned radiation as an option this time, and that my dad's cancer isn't straightforward. This was the first appt I've missed, though my brother and mother were there, and I wish I'd been there as I have many more questions.

The concern I've raised with the 4 Dr's he's seen over the last 2 months (respirologist, GI surgeon, family Dr & now oncologist) has been his condition. I've asked if getting fluids or even TPN would be an option. All have dismissed this & shuffled him along to the next person & I'm frustrated as he's so weak, tired and shaky which is surely affected in part by dehydration. And I'm finding it difficult when IMO everyone seems so cavalier.

If anyone has experienced something similar, or has suggestions I'd be grateful to hear from them.

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Kim,

I've not had a chance to welcome you yet. It sounds like there may be something else going on with your father that is affection his ability to eat. Does he have a primary care physician who can review all of the meds he is on. Sometimes too many meds can cause siginficant problems. Beyond that my mom's onc prescribed megace to help stimulate her appetite when she started loing weight. That might be an option as well.

Keep us updated.

Susan

ps--my mom will mark the 3-year anniversary of her dx with stage iv nsclc on Jan 5th. There is hope.

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I haven't had a chance to welcome you here myself either, I just wanted to send along my best wishes and prayers for your dad and your family.

My dad took megace and it was successful for his appetite as well. Lots of great advice here already-

Just wanted to give a welcome and let you know I look forward to more posts and updates and will keep your dad in my thoughts for encouraging results on the 6th.

PS The inspirational stories here are a great way to boost his moral. I print off stories here often for lc patients and even many many years ago for my own dad.

Hugs,

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  • 2 months later...

Hi all - it's been a while since my last post.

Dad was taken off many of his RA meds & has been eating more and feeling far more energetic. His stomach is still unpredictable, but He looks 100 times more like himself compared to a month ago.

A CT scan last month showed no significant change since the one in November so his Dr. is holding off on treatment for now & set dad's next appt for 5 weeks. The Dr. still isn't very encouraging and for lack of something positive from the Dr and being left in a holding pattern, dad is understandably downhearted.

My brother and I have decided to request a meeting without my dad to get more info & share our concerns. Not sure whether that will be possible but we feel we have to try. If anyone has suggestions on how to approach this we'd appreciate it.

Good thoughts to all!

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Time for a second opinion! and possibly a switch in Doctors! just come right out of the gate swinging! Ask any and all the questions you have! If you don't like the answers pursue a second opinion from another doctor! This is your dads life your talking about here!

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  • 3 months later...

Hi everyone - I'm heartbroken to report that we've lost my amazing Dad. He'd had a stay in hospital just after Easter with a collapsed lung (the good one). Spontaneous pneumothorax. After 3 chest tubes and a month in the hospital, during which time he dropped from the already painfully thin 121 lbs down to 109 lbs and developed a horribly painful Stage 4 bedsore, he was finally released home.

We were as thrilled to have him back home as he was to be there again. The lung cancer had remained unchanged since dx in October '09, so we'd hoped that he'd finally be able to focus on getting stronger & ready for any treatments needed when the time came for that battle.

Monday, June 7 he died suddenly while putting air in the tires of his car at the gas station 1 block from home. The coroner was uncertain but ruled it a cardiac event, which is peculiar as Dad had no history of heart trouble. He'd been suffering dizziness and fainted the week prior. Dad suffered a nasty head trauma when he fell to the ground so we believe he fainted, hit his head and somehow passed away as a result. About 15 minutes passed before someone spotted him (no vital signs) & began CPR.

This beautiful man never complained and deserved so much more than the hand that was dealt him. We are devastated.

I wanted to thank everyone for their comments and kind words over the past 7 months. I wish you all the very best. My thoughts and prayers to everyone.

Kind Regards, Kim

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Kim, I want to offer my condolences on the loss of your wonderful Dad. I did post your Dad's passing in the Obituary forum but am glad you updated everyone here as well. I realize that in my immediacy in posting for you, I failed to send you a reply to your pm. Forgive me dear and know I feel for you and the sadness you must be feeling. I hope the coming days pass gently for you.

Judy in KW

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