Hi everyone. I am new to this site. My 64 yo husband was diagnosed with NSCLC Stage 4 in 2008. He was doing well until they found 6 brain mets in May. He had 15 WBR txs and is now back on chemo but he's not eating and barely drinking. His kidney function is down and I am so worried and frustrated. He seemed to have so much hope before and now it seems like he's given up. He won't talk about his feelings and I feel like I am in this all alone.

Char, your not alone by any means ! We have been down these roads lots of times in past! Have your doctors been made aware of everything going on? what chemos has he had? how recent ore these developments?

There is always hope!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

I second what Randy said. You have stumbled onto a site that has members from both sides of this horrible disease. Some of us are survivors and some are co-survivors (caregivers). There are so many success stories here that I hope give you a little comfort where there is little to be found.

Again, as Randy said, I hope you have made your medical team aware of the problems. There are many avenues out there that could help him get over the hump and back on the road to recovery.

Although there are many here that will offer you support and excellent advise you might also find some answers at cancergrace.org.

I know it is hard to find any humor in your situation but look around, join us in the Just For Fun category and take a moment for yourself. Hard to do but when you take care of yourself - it makes it easier to take care of someone else.

If you need anything or have questions please post - everyone here is so very supportive and understanding. It may not seem like much but it would mean so much to everyone here if we can help you "virtually" any way we can.

Take care,
Annette

_________________
5/5/09 Bad Cough - sent for xray
5/6/09 CAT SCAN
5/8/09 Pulmonologist - not good ordered bronch
5/14/09 Bronc 5/19/09 Breathing test & Results - NSCLC (Adenocarcinoma 3cm)
5/22/09 PET Scan - 5/27 referred to surg & onc
6/2/09-met with surg & onc. They say there are two spots. One small on left lung and one larger one on right lung 3.6 x 3.2 cm - they are pretty sure and approaching it as if it were two separate cancers staging the right at II and the left at I.
June 15 - RML removed - Pathology - margins clear and nodes clear. June 25 follow up with surgeon - doc agreed to stage I since it appears he got it all - June 30 return to work
July 7 Oncologist says Stage 1A - we don't recommend chemo for this stage
Aug 17 - surgery - again took ULL and some nodes -
Sep 8 to onc - Both sides IA - no chemo just watch closely
Dec 15, 2009 - CT Results - NED
March 10th, 2010 - CT Scan - Results - NED
June 15th, 2010 - XRay - Results - NED
Sep 15th 2010 CT Scan - Results - NED
Dec 2010 XRay Only - Results - NED
Dec 2010 MRI - Results - Clear
March 2011 - CT Scan - NED
June 2011 - XRay Only - NED
Sept 2011 - Scan & Vampires - Scared to death!!!!

Hi Char,

Welcome here. We hate the circumstances that drive us here, but love when someone new finds us. You are officially no longer alone. As Randy and Annette have said, share the situation with us. There's bound to be someone here with circumstances like yours. It helps to know that.

Getting on-line support is crucial to dealing with the tough stuff of life like this situation. There's always hope, as Randy said. Let us know how we can help.

Judy in MI

_________________
6/07 DX NSCLC, Left Upper Lobe wedge resection: Stage 2.3/4, (2B?) Adenocarcinoma, measures 2.5x1.5x1.1cm. Involving visceral pleura but not through it. 5 rounds chemo, carboplatin and Taxol. Subsequent scans NED.

1/11 3.5 mm node found. 10/11 CT node now 8 mm, and new 6 mm node. 11/11 CT Pet shows slight uptake. 1/4/12 Biopsy - Pneumothorax complication. 1/14/12 Lobectomy of upper rt. lobe. NSCLC Adenocarcinoma in situ, nonmucinous (bronchioloalveolar carcinoma) 1.4cm involves pulmonary parenchyma.
3/14/12 Begin 4 cycles of Cisplatin/Navelbein, with Neulasta shot
4/6/12 Chemo changed to Carboplatin/Navelbine without Neulasta shot. Reduced chemo by 50% due to intolerance.
7/5/12 CT scan is clean, NED for lung cancer! There are issues with liver and stomach that will be investigated but not believed to be because of cancer. Wait and see!

*Avatar was taken 7/3/12 on our way out to see the Fireworks on a friends boat on their lake!

Mom dx SCLC 1/96, passed 10/19/96, age 62
Dad dx Brain cancer 4/87, passed 6/87, age 57
Sister dx Brain cancer 4/83, passed 12/83, age 25

Hello Char

I'll offer you a welcome although it's never fun to have to be on this road. The folks here are so wonderful. If we don't have an answer someone usually has a suggestion or another site to go on to get some answers. CancerGrace.org is an awesome site and the Drs there actually answer questions free of charge. We have all had opportunities to utilize that site from time to time. They're very helpful and compassionate. Here is a link you might want to read

http://cancergrace.org/radiation/2008/0 ... rt-review/

I know that when Bill was on chemo and radiation he too was quite stubborn about drinking. The more I pushed the more he refused. He listened to the Nurse at the Oncology Center where he had chemo much better than he listened to me. He never had brain mets that were diagnosed but he did have PCI to prevent them.

I hope you'll feel safe coming here and asking questions or just venting. I would have been lost without this site.

Blessings to you in your journey as a caregiver

_________________
~~Laurie~~

Bill, I love you so, I always will
(The 5th Dimension - Wedding Bell Blues - 1969)

05/13/47 -- 04/03/08
Small Cell Lung Cancer

Trust in the LORD with all your heart and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6

__________________________________

Welcome Char. Sorry you have to be here but glad you found us. I think I know how your husband feels. When I went into remission early in my treatment, I was sure I had beaten it. I was 3b and the doctors told me to expect it to return but I knew better. It was the worst time in the 3 yrs and 9 mos since my dx when it did come back after a year in remission. Even if he wasn't in remission, when you are convinced you have it knocked, a downturn is an unbelievable blow to your psyche.

Tell your husband he will bounce back and tell him I said so. I never think I have it kicked now. I have realistic goals like going into remission again and a plan as to how I will deal with that when (not if) it happens. But always in the back of my mind is the likely reality that if you have advance cancer, it probably will come back. Each time it does, I vow to meet it head-on and kick it back again. That's what I'm doing right now as I write this--kicking back the recurrence that came last year when my cancer moved it's LC cells to my abdomen. I'm feeling better every day and he will too when they get done treating the brain mets.

People here have had great results with radiation for brain mets and follow-up with chemo increases the odds in his favor. Keep encouraging him and give him time. He's had a terrible shock with this situation. Keep us posted as to how he is doing.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Hi Char, Welcome . I too am sad for your situation, but glad that you found "us". When you read all our histories as I did, you'll see that we all have our own journey. When I was in the middle of all the chemo, I got dehydrated to the point that the nurses nicknamed me Mr. Weeble Wobble. I was so dizzy when I stood up I could barely walk. I even fainted one day as I was getting off the elevator. They stuck me in a room and started liquid drip and O2 for 2 days. Even on days with no chemo, I went just for a big bag of liquid. My throat was also burned from all the nearby radiation so it was hard to swallow. I drank as much as I could.
Most centers offer a support system to help with emotional and spiritual help too. Ask about that. My cancer is in remission now but they told me to expect a recurrence. They suggest that I keep the power port even. So, You are definately not alone. He knows he's not alone too. It is a tough fight and I along with this group can be with both of you through it . It sure helps me just to vent or whatever. There is comic relief over on "just for fun" I'm an admitted babbler so be forwarned. Alan

also in this weather dehydration is not a good thing to be in the hospital for!! No fun at all! Drink up and stay hydrated at the very least! make sure to have on hand any of his fave foods or smoothies and or protein shakes to help out with energy and fighting off other problems!

Ensure and boost are great things and you can add some protein powder for good measure like the body builders drink!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

HI Char,
great advice here so far. These are the greatest folks and you will never be alone here.

How are you doing today? How is your husband?

Just sending a hug your way.
(((hug)))

Char -
I can totally relate to this post. I was diagnosed in Dec 2006 and had 4 1/2 years of good reports, NED, no progression of disease. I knew the cancer was still there - with Stage 4 it is always there - but I started to think I would be the one who beat it, I would be the miracle.
Then, in April, the scans came back bad. I too had Mets in my brain - at least 3 - turned out to be 6. I went through Gamma Knife radiation, and changed my meds.
It put me in a bad funk - for quite a while. I have been trying very hard to be very positive through this whole thing - but after so many years of good news, the bad hit harder than I expected. On top of that, when I was first diagnosed, I had a list of things I needed to get accomplished, organized, cleaned up etc. And, although I did a lot of it, I got complacent and started putting things off. With the new news, I went into the crazy, things have to get done mode, which caused me more stress. Then, add to that the new meds I am on - which make me very jittery, very sleepy and very "fuzzy" and I am not the same person I was a few months ago.
So, I understand what your husband is going through. This is hard. But, what makes it easier is talking it out. I try to always put my best face on for everyone, try never to complain, or say I don't feel well. That has gotten harder lately, but I thought I was still covering up pretty well. It turns out I was not! Now that my family understands how I feel, I feel more free to feel bad when I have to, to let myself be down sometimes. I would never have come out and told them, that is just the way I am - but when they came out and told me I was acting different it opened the lines of communication.
I think it is very important for you to let your husbands doctor know what is going on with him. Again, I thought I was hiding things pretty well, until my family told my oncologist what they were seeing - If there is one person we have to be totally honest with in this journey it is our oncologist - so if it is not going to be the patient it has to be the caregiver! His doctor may be able to change meds, help with anti depressents, suggests alternate therapies etc.
Take care of yourself Char - don't forget that part of it. You are in my prayers -
peace

_________________
Diagnosed at 47 years old - never smoked
3 amazing children, now 27, 25, and 24
Married 30 years

12/22/06 Diagnosed NSCLC Stage IV - Adnocarcinoma
Tumor in Rt Lung, 3 on Spine, one on the Pons of the brain
Radiation to the spine
Fractionated Linac Stereotactic Radiotherapy to the Pons of the brain

2/15/07 Start Tarceva 150 mg
4 1/2 years of "no progression of disease"

4/11/11 New mets on brain, Gamma Knife Radiation
Probable Leptomeningeal Disease.
Start "pulsing Tarceva" 1500mg 1xweek

7/11 - Brain mets swelling as an after effect of Gamma Knife, put on anti seizure meds, steroids.
New mets on spine and lung - watching.

9/11 - No new growth in Brain - more growth on spine and ribs. Back to Tarceva 100mg daily, adding Avastin every 3 weeks.

12/11 - Scans show no new growth, some mets stable, others have shrunk!

12/22/11 - 5 year survivor!!!!!

7/20/12 - scans show new growth in lungs and spine. Staying on Tarceva and Avastin and adding Alimta and Carboplatin.

10/12 Taken off Alimta and Carboplatin due to extreme side effects, continuing on Tarceva and Avastin - scans stable

Winter/13. Scans show growth again. Bones, lungs, lymph nodes, spleen. Time to look into clinical trials

4/13. Started clinical trial at Yale AP26113 by ARIAD, a "second generation Tarceva", side effects so far, diarrhea and nausea.

My story - http://lungevity.org/l_community/viewtopic.php?f=47&t=46162

Thank you all for your replies. It gave me a lot of comfort in knowing that others have been in this same situation. I think your are right on jaminkw on how he has been feeling. He did so well with his initial chemo (carbo/taxol/avastin) and had tolerated all so well that the doctors were calling him a medical miracle and said they did know quite what to do. The kept the chemo going for about 6 months and then cut back to just the Avastin for 4 months and then nothing! Life seemed normal and it seemed we had beaten this monster. He had 4 clean scans before he got one showing a small lesion in his right middle lobe. No problem; we'll just do the chemo. Then they decided to do the MRI to make sure there were no brain mets before the Avastan. They found 6 individual lesions. I guess it has taken our safety net away and it actually feels worse than when he was first diagnosed. He was quite heavy when he was originally diagnoses (300#) so I know he's glad he's losing weight and I think that's why he doesn't eat. We did discuss this with his doctor who talked to us about Megace but George said he wouldn't take it. I'm still fighting with him over the fluids. His creatinine goes up to 2.5 if he doesn't drink enough fluids. We are trying all different liquids since he says nothing tastes good. The past two days he has drank diet Peach Snapple Iced Tea and says that tastes good.
Thanks for the hugs and well wishes. People want to help but unless they've been through it, they don't know what to say.
I'll move to a more appropriate subject now.
Char

Weight loss in moderation is good thing! Weight loss to fast is a bad thing!!! Do a search for cachexia here and you will see what I mean!!

_________________
April/03 My Wife Deborah, age 46, diagnosed adenocarcinoma NSCLC
1/20/2006 Admitted to hospital Respiratory distress
1/23/2006 Ran to the light and is waiting for us to be rejoined in the Kingdom Of Heaven Her journey is Over but mine lingers on for Now!!!
4/23/07 DEb is joined in Peace by her Puppy Dawg Daisy from Cancer
8/30/07 Got new Pup named Mocha!!

"No matter hnow much it hurts, No matter how alone you feel, Your friends will help you get through anything!!"
Scrubs!!!!Yes the comedy show!!!

The Reason I advocate
If you would like to see our family photos Click on this link!
http://deborah-wallin.memory-of.com/

My memory-of Link is good to go now if you want to see it!!

Yes Char, been in his shoes. I was the wonder woman of lung cancer in the beginning too. Makes it tough but tell him he'll bounce back. I did. Hardest thing is learning to do what the doctors tell you to do lol.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.

Hello...I am new member to this site.

Hi Andrew. Glad you found us, sorry you needed to. Are you a cancer survivor or a caretaker. Love to know more about you. You should have your own thread though. Go to Welcome New Members, Introduce Yourself and give yourself a new title. Just change it a little, like I'm New to this site or anything you'd like. I'll be watching to see more information about you and your situation.

Judy in KW

_________________
Cytology report on fluid removed from lung after pleural effusion and pneumonia Sep 07 showed adenocarcinoma cells. Dx IIIb NSCLC Oct '07 at MDACC, Orlando. Fol 6 rounds Taxol/Carboplatin/Avastin and 2 Avastin, CT/PET 4/1/08 pleural thickening gone and no active cancer cells. 11/3/08 STILL NEVD. CT/PET/MRI 5/4/09 Cancer back, still in the pleura and chest wall, small amt of fluid, all in left lung.
5/11/09 Start on Alimta every three weeks.
7/13/10 Had Alimta on road in Corning NY.
8/24/09 Scans show some improvement. Continue on Alimta.
9/14/09 Chemo on road in Mt Holly NJ.
10/6/09 Started regular Alimta infusions in Key West.
11/3/09 CT and PET scans showed significant improvement. Some issues already resolved.
2/3/2010 No evidence of residual or recurrent disease. NED! Stay on Alimta.
5/6/10 Am considering myself still NED until/unless proven otherwise in July. Rabid radiologist thinks he sees something suggestive of similar to some abdominal cancer. No light up on the PET. Am hoping for the best. Stay on Alimta and scan in 9 wks instead of 3 mos.
7/8/10 Chest CT unchanged (NED Feb '10). Infiltration in the region of the omentum is probably slightly more prominent than before. Diverticulosis requiring antibiotics.
Jul, Aug, Sep, continued Alimta in Corning NY, Portsmouth OH and Mt Holly NJ.
10/14/10 Chest CT unchanged from Feb '10. Findings likely representing progressive nodular peritonal carcinomatosis in the midabdomen. Treatment changed to Tarceva started in Nov.
12/15/10 Chest CT unchanged. Abdomen changes compatible with peritoneal carcinomatosis again identified with mild progression noted.
3/16/11 CT chest unchanged. CT abdomen progression ascites (fluid). Progression of soft tissues nodularity on the peritoneal surface anteriorly with diffuse omental involvement.
4/13-15/11 Hospitalized at MDA. Removed 4 1/2 litres (8-9 lbs) of fluid from abdomen 4/14. Started on taxotere before release on 4/15.
5/16/11 Hospitalized for fever, neutropenic. Treated with intravenous antibiotic and antiviral. Given blood transfusion. Note that KW Cancer Center did not give me my Neulasta shot after my chemo on May 6. Onc had me cancel my 5/26 chemo until after my scan on Jun 6. Was discharged on oxygen. Test w/Dr Gerth 5/26 indicated I could go off sitting and sleeping O. Will do walking test 6/2.
6/2 Did not get requisite numbers on walking test. Left for Orlando 6/5 still on oxygen.
6/6/11 MRI normal; CT stable. Taxotere and Neulasta at MDA 6/7 and 6/8.
6/13/11 Appointment with Dr Olham in KW. Off oxygen week of 6/16.
8/8/11 CT scan showed stable with perhaps some lessening of fluid. Stay on Taxotere.
10/10/11 CT chest still clear, CT abdominal lining stable. Stay on taxotere.
12/19/11 CT chest clear, CT abdominal lining stable, MRI clear. Stay on taxotere.