I am very thankful to have stumbled onto this site. I've been reading through post and have a few questions....

My dear dad was diagnosed with Stage 4 lung cancer on Nov 2. The dr's have called it squamous cell cancer. His cancer has spread to his brain, spine, liver, abdomen, adrenal glands. I know they named other places as well but honestly I was weak in the news and trying not to pass out at this point. He had ten days of radiation and one round of chemo. The dr says he can do 4-6 rounds of chemo and then no more. I am trying to understand why they won't continue with more. He had made wonderful progress with the radiation and chemo. From not being able to even get out of bed to now walking with a walker.

I guess I am wondering if there are any people out there who had a similar diagnosis and what their experience has been. I'm told everything being done for my dad is pallative care. I am so naive to all this that I didn't even know what that was. I just can't believe my dad is dying. There has to be more we can do for him. I see the radiation and chemo results there has to be more. I'm 35 years old and single mom to a beautiful one year old daughter and we desperately want many more years with this man. My dad is divorced from my mom but they have remained friends and she is fighting for him too. I have one sister who has never been close to my dad and is sort of shut down to the situation. She is able to go about her every day life like nothing is going on but I am consumed with my dads diagnosis.

I guess its not so much questions I have right now but hope.

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Lyn

Lyn,
Usually when they say "no More" they mean a break from chemo, not no more forever.
4-6 rounds of chemo is pretty standard. Depending on the response to the chemo and the length of that response can determine if they give the same chemo or something different when/if it shows back up. Since the cancer has spread, and there is no way of knowing if all of the cancers cells were killed by chemo, that is why treatment is considered palliative and not curative.

Although, I know from my own experience just how devastating this news can be, remember to BREATHE. As a matter of fact take several deep breaths. It will help to calm you and center your mind so that you can meet these challenges head on and in the way best to help yourself and your father.

Keep your faith, Darlin' it helps loads and also remember you can come back here anytime for a refill on just about anything from information, to (cyber) hugs and understanding.

Dawn

I can answer a few of your questions and this is the right place to find some hope, as you will hear from folks that have continued to kick lung cancer's butt despite the initial diagnosis.

Palliative means that they are treating the cancer to alleviate the symptoms but not with the aim to cure it. However, not treating with curative intent is not hopeless. I once described this to a family member as - you can't 'beat' the cancer, but you can sure as heck beat it back down and hope to do that for as long as is possible. You will find people here that have been doing that for years.

As to why only 4-6 cycles of the chemo - this is standard in lung cancer when you are dealing with the traditional sorts of chemotherapy. These drugs are toxic to healthy cells as well as the cancer cells. After 4-6 cycles, the attitude is that you have hit the point of diminishing return - the point where the drugs are more toxic on the healthy cells and are actually more dangerous than helpful. At the 4-6 cycle point, the risk begins to outweigh the benefit.

But after that point, there are still other drugs that can be given, or the doctors could give him a break on the medications and monitor closely and then go with a new drug once the cancer begins to show any progression.

It is all very overwhelming and everyone here really understands that. Understanding what all is going on helps a lot and you can learn a lot of that here. Don't hesitate to ask questions. You can also learn a TON from www.cancergrace.org - and I'm sure others here will recommend that site to you.

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edited to add - I see you are getting a lot of good comments in another thread. Learning what you can and what things mean really will help you a lot. Knowledge is power, as they say. Just keep asking and folks will help you out. You will feel a little more in control if you at least feel like you understand things. Though everyone here can attest to the fact that nothing makes you feel quite as powerless as cancer. At least here, you can feel like you have taken back some of that power. Good luck, and hang in there. Lots of folks here to help and to support you!

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My sister Kelly was diagnosed with 3b NSCLC in May of 2007. A nodule on her adrenal gland has at times been thought to also be involved, but I, her surgeon, her radiation oncologist, and many oncologists I work with don't think it is. So we're going with that. She completed 5 rounds of carbo/taxol on a weekly schedule with concurrent radiation for 37 days. CT and PET showed nodes were clean but still residual activity in the tumor, which was reduced in size from 8x5 cm to 3x2cm. She attempted a lobectomy on 22 January 08 but the tumor resides a bit in the lower lobe in addition to the upper lobe, and the surgeon would not remove the entire left lung. She started Tarceva on 27 February 08. Her first scan showed decreased activity in the tumor and yet again, nothing new outside of that tumor. Her Dr. and I were actually kind of shocked! June '08 she had a total of 48 Gy of radiation via cyberknife. Her PET from 10 Sept '08 showed nothing new, the tumor size not really changed, but the SUV went down again, from 3.9 in May to 3.1, down from about 19 when this all started. She took a bit of a Tarceva holiday as we had some electrolyte issues due to not eating anything. She is currently back on it and taking 50 mg with tolerable toxicity. December '08 scan showed stable disease and yet again, less activity than before. April '09 scan actually said "area of hypermetabolic activity previously noted is not visualized today"! I could hardly believe my eyes and read it over and over. August and December '09 scans nearly identical! Now the June 2010 scan is just like the last ones - no uptake in the tumor, no new sites! Scan in January 2011 showed something on a rib on the contralateral side. Everyone in agreement that she broke a rib when she took a really bad fall a couple months ago. No one seems to think it is cancer, since the PET showed nothing in the lung or lymph nodes! Not moving to yearly scans yet though, so back in July! Our family really needed that good news as a month before we buried our 26 yr old nephew and are all still reeling from the shock and pain. July 2011 scan showed nothing new and she and the dr agreed to give her a drug break, so she went off Tarceva and so he wants to scan again in 3 months. There was a 3 mm nodule in the other lung and he didn't want to wait too long to scan given that and the no drug status. Scan in October of 2011 again showed nothing new, no growth, all is stable. The nodule in the other lung still listed as 2-3 mm. February 2012 scan was same as it ever was. :) Next scan is in August and she'll have gone one year without any treatment at that point. On May 19th it was 5 yrs from the day we heard she had lung cancer and we marked the occasion with a big party full of family and friends! She had a scan on Aug 24th and the results were more of the same, and marching orders from her oncologist that he doesn't need to see her for another year!

My dads oncologist did say after the second round of chemo they will do another scan to see if its making a difference. It has to be though I mean it really is amazing the difference I see in his abilities. I don't believe his dr has ever mentioned the drug Triceva (SP?) I keep seeing mentioned on this site and have read about. My dad goes for his second chemo in a week and I am going to ask about it.
Thank you for your replies.

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Lyn

Lyn, I know I did a reply post yesterday but somehow it didn't go through. We are here with information, support and most especially with HOPE. It is what we all survive on, whether we have cancer ourselves or one of our loved ones does. Stay in touch and keep us updated on your Dad's treatments. We care.

Judy in Key West

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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.

Lyn,

When cancer has spread beyond the organ of origin it is considered Stage IV and most all treatment is technically considered pallative. My mom has been on pallative treatments for almost three years. She was stage IV at diagnosis too. My mom's oncologist told her at the time that he didn't think he could cure her cancer, but he was pretty sure he could control it. And until lately, he has.

This diagnosis is a hugh shock. Try to take it one day at a time. If you see your father improving--GOOD! He will need an advocate so make sure you ask any questions you need and we will help you as much as we can.

Susan

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76 year-old mom diagnosed with stage IV lung cancer January 5, 2007.

15 radiation treatments to the spine and four rounds of chemo, Jan-May, 2007.

Stable disease May, 2007-May, 2008.

Bone scan May, 2008 shows new mets in the spine, pelvis and ribs.

July, 2008--finished radiation and has a Quadramet treatment.

October, 2008--Scans show mild progression. Began chemo (carbo/taxol/avistin). Will have four rounds of threatment (every 21 days) and scan in January.

01/05/2009--TWO YEAR SURVIVOR!

4/2009--STABLE! No treatment. Next scan in July

7/2009--Scan shows pleural effusion. Fluid drained and malignant. Cancer has spread to other lung and a 13 mm lesion is seen on the liver. Mom to begin Alimta on 8/3

11/2009--Alimta was hard on mom and scans showed progression.

12/2009--began Tarceva, noticed almost immediate improvement.

2/25/2010--Celebrated Mom's 80th birthday!

5/15/2010--Mom watched her oldest granddaughter graduate from college and then paritied well into the night! She's still feeling great.

6/15/2010--Mom watched her youngest granddaughter graduate from high school. Still feeling great!

8/2010-10/2010--Mom begins feeling tired and stays in bed more and more. Scans reveal that the cancer is moving rapidly throughout her body.

10/13/2010--Mom wins her battle once and for all, and passes to a place where the cancer can no longer touch her.

For a more detailed timeline see:

http://www.lungevity.org/l_community/viewtopic.php?p=360385#360385