dad just diagnosed, I'm confused and would appreciate input

[barbara w]

My dad was recently diagnosed with nsclc (large cell carcinoma) at stage iv. He looks and feels fine as I've heard many do. My dad has a solitary small tumor on his liver as well, but his bone and brain scans were thankfully clear. My dad has a wonderful onc and treatment team. They have him set up on a 21 day cycle of carbo/gemzar with scans after two cycles. The oncologist stressed to my dad that this is not a death sentence in that he is in such good health other than this cancer. She pointed out that this was not curable but treatable. She was very optimistic and that is what sort of threw me. Maybe I'm so afraid to feel optimistic because I'm terrified of losing him. We're such good friends and he, like so many others on this board, has so much living to do. My husband and I just had twin girls, my dad's first grandchildren, and he is so hoping to see them grow up a bit. I'm normally the pushy, questioning type with my parents' doctors, but this time I just sat back, wanting so much to believe in what the doctor was saying. It's just so confusing because what I've read with other sources ( stats, NCI, etc.) doesn't seem to mesh with my dad's onc. Are oncologist usually overly optimistic, or was she truly hopeful?

I've just reread this post and realize that I've rambled. I'm sorry. Any input you could provide me would be most appreciated. Thank you for listening.

Barbara

[betplace]

Dear ((((Barbara))))

You aren't rambling, don't worry dear! Welcome to our forum, you have stumbled on just the spot to give you hope and support.

The onc is right and thank goodness you have a good one. Try not to look at the stats, your Dad is not a statistic! And your Dad's onc seems to realize that, you are luckier than you know. I have small cell, so can't answer technical questions for you, but many here will answer you. Again welcome, prayers and hugs coming your way.

Blessings

Betty

[DeanCarl]

barbara,

I'm sorry you had to seek us out, but VERY glad you found us.

First off, you know all those stats and stuff you just read? Well, now that you've read them .. FORGET THEM! Your Dad isn't a statistic, he's your Dad. And there's no reason why your Dad can't be on the high end of those stats.

You're going to meet a LOT of folks here who have blown those statistics right out of the water so rip them up, toss them away and listen to what your oncologist is saying.

Dean

[stand4hope]

Hi Barbara and WELCOME!!

I'm really glad you found this site. You are going to love it, the people and the support! Don't be afraid to be optimistic (the opposite will just make you miserable). I, too, read the stats, spent hours and hours and days and long nights and entire weekends reading everything I could find. Everytime I got exhausted reading articles on the web and got away from it for a week or two, I was right back at it again. I just kept trying to find something more hopeful than what I was reading. It wasn't until I got here with real people with real names and faces, real experiences, and real long-term survival that I started to have hope. That's why my username is "stand4hope" - there is always hope. So, I repeat, don't be afraid to be optimistic. It's going to be a fight, but you said your dad is in good health, so that's a very good reason to be very optimistic!

God bless you,

Peggy

[DaveGr]

My Oncologist is the same way. She never has talked about time with me, only that if as long as there is a way, she will treat me. She stressed that she cannot cure me, as I know the cure has yet to be discovered.

So far I have nothing to complain about. I was originally dx'd a Stage I in September 2001. I had surgery in October 2001 and again in September 2002. In April 2003, following a CT Scan I was told that I had mets to severallymph nodes in my chest. A PET Scan, however, revealed that the mets was systemic throughout my lymphatic system with tumors in my diaphragm, neck, and both groins. I was restaged to Stage IV. I entered a Phase II trial which was 6 cycles of Carboplatin/Taxol, each 3 weeks apart, along with an injectable drug called ABT-510. I had to how to self administer shots, as I was, at first, required to give myself a shot of ABT-510 twice each day. The shots were soon cut back to once each day and my wife began giving me the shots as when I did them myself, I was limited to my legs, however my wife could rotate between my arms and legs.

I completed the chemo on September 2, 2003. A CT Scan, late September revealed that the neck, groin, and diaphragm tumors had disappeared and the chest tumors had either shrunk or had stabilized.

I was again scanned, 6 weeks later, in November, and it was discovered that I had developed mets to my liver. On December 9 I started a Phase II double blind study to determine the efficacy of a new drug (ZD6474) against Iressa. I knew, going in, that I would be getting one of the two drugs, in pill form, plus a placebo. once each day. Being a double blind I was not informed which of the drugs I was taking. In January 2004, I had a change in my EKG, at which point I figured out that I was getting the new drug ZD6474. After a few weeks, of 3 times per week EKG's, I was informed that the study had been opened and, in fact was receiving ZD6474. In order to prevent future occurence of problems with EKG's in patients taking ZD6474, the dosage has been adjusted and reduced.

Out of all this good did come. The liver tumor stabilized and has shown no growth since the original scan in November. So for the past 4-5 months I have been stable. With cancer, "stable" is a good word.

As of September I will be a 3 year survivor, now of Stage IV NSCLC, adenocarcinoma. What I am stressing her is, Lung Cancer can be survived and we do have many long term survivors visiting this site on a regular basis. We're not cured, but we are either stable or show "no evidence of disease" (NED). This what you need to pray for with your father. By the way I was just short of my 58th birthday when I was diagnosed and am now 60. I play golf almost daily, and last summer, while going through chemo, I tried to play golf as often as my body would allow. I did not play a great game, as my strength was greatlyy reduced, but I still tried to play. Staying active and having a positive attitude are the keys to my survival, plus a trendously great faith in God.

[gerbil runner]

Welcome, Barbara.

Your dad's onc sounds good - their attitude counts for a lot. And listen to what you're hearing here: there are a lot of long-term survivors. Your dad could be one of them.

[TBone]

Hi,

I,too,am sorry you had to search for us but I can assure you that you have found the right place.My introduction to lung cancer and stats was on Christmas Eve of last year.I went to the emergency room with severe headaches.A CAT scan revealed 3 tumors to the brain.A neurologist,not a cancer doctor,came in and told the wife and I that I had 30 to 45 days to live and that if he were in my shoes he would go home and enjoy what time I had left.He guessed right that it was lung cancer with mets to the brain.By only looking at the brain mets he made this prognosis.I went home devastated as was my whole family.We decided to at least call a cancer doctor and luckily found a good one.He immediately started whole brain radiation and although it was a terrible ordeal I am here and kicking and ready to start the next round of therapy.It is here on this board that I found the courage and hope that I needed.Stay here and keep posting.Sounds like you have the right doctors.Just never stop asking questions and be aggressive.Love and prayers to you all.TBone

[Don Wood]

An optimistic onc with a good plan is the kind of have. Count your blessings. Don

[dadstimeon]

Hi Barbara,

Sorry to hear about your dad. This is the best place with the best people. That’s exactly what you want an Onc with a positive approach and a good game plan. Statistics are just that. Do not dwell on them. Stay focused and positive. Take one step and one day at a time. Research as much as you can. Next month I'm coming up on two years and have no plans of going anywhere soon. I live just outside of Boston. I also go to The Wellness Community in Newton for (support group) Lung Cancer. Worth looking into for your dad. Anything I can do for you just PM me. Hope this helps. My thoughts and prayers are with you guys. Peace, take care and God Bless.

Rich

[The Power Of People Helping People / The Power Of Knowledge / The Power Of God / The Power Of Believing / The Power Of Positive Thinking / The Power Of Never Taking No For An Answer / The Power Of Laughter / United We Stand, Divided We Fall / That’s The Key]

http://www.ncbi.nlm.nih.gov/entrez/quer ... h&DB=books (NCBI / BookShelf)

http://www.usnews.com/usnews/health/hos ... p_home.htm (Directory Of American Hospitals)

http://www.lungcanceronline.org/tests/index.html (Lung Cancer Online / Test And Procedures)

http://www.vh.org/adult/patient/cancerc ... index.html (Understanding Blood Tests / A Guide for Patients with Cancer)

http://www.cancer.gov/cancerinfo/pdq/tr ... ng/patient (SCLC)

http://www.meds.com/pdq/smallcell_pat.html (Medicine OnLine / SCLG)

http://health.allrefer.com/health/prima ... -info.html (Diseases And Conditions / SCLC)

http://www.hospicefoundation.org (Hospice Foundation Of America)

http://www.hospiceweb.com (Hospice Web)

http://www.hospice-america.org/consumer.html (Hospice Association Of America)

http://www.hospicenet.org (Hospice Net)

http://www.plwc.org/plwc/MainConstructo ... 151,00.asp (PLWC Feature: Talking to Someone With Cancer)

http://www.zanesvilletimesrecorder.com/ ... 87526.html (3-year-old keeps her smile in battle with rare cancer)

http://www.rfalung.com (Radio Frequency Ablation Of Lung Cancer)

http://www.lungcancercoalition.org (Global Lung Cancer Coalition)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (PLWC Feature: Financial Support Resources)

http://www.usnews.com/usnews/nycu/healt ... hqcanc.htm (Best Hospitals)

https://www.alcase.org/advocacy/sign_the_petition.html (Advocacy /Sign the Petition)

http://www.cancersymptoms.org (Oncology Nursing Society)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Questions to Ask the Doctor)

http://www.alcase.org/education/publica ... reath.html (With Every Breath A Lung Cancer Guidebook / From ALCASE / A Wealth Of Information / Free)

http://www.cancersurvivaltoolbox.org (The Cancer Survival Toolbox / Free / From NCCS)

http://www.centerwatch.com (Clinical Trails Listing Service / Center Watch)

http://news.google.com/news?hl=en&editi ... ung+cancer (Lung Cancer In The News)

http://www.thewellnesscommunity.org/pro ... /guide.asp (The Wellness Community / National Cancer Support, Education And Support / Free)

http://www.drugs.com (Drug Information Online)

http://www.alcase.org (ALCASE / Alliance For Lung Cancer Advocacy, Support, Education)

http://www.nlm.nih.gov (Unites States / National Library Of Medicine)

http://www.nlm.nih.gov/medlineplus/encyclopedia.html (Health Information / Medical Encyclopedia)

http://www.google.com (Great Search Engine)

http://blochcancer.org (R.A. Bloch Cancer Foundation, Inc. / Please read: A Letter to all newly diagnosed cancer patients)

http://www.cancer.org (American Cancer Society)

http://www.cancer.gov (Cancer Information Service / NCI)

http://www.cancerresearchcenter.org (Cancer Research Center)

http://www.aicr.org (American Institute for Cancer Research; Nutrition Hotline / AICR)

http://www.cancerhopenetwork.org (Cancer Hope Network)

http://www.acor.org (Association of Cancer Online Resources / Free Online Lifeline For Everyone Affected By Cancer & Related Disorders)

http://www.meds.com/lung/lunginfo.html (Lung Cancer Information Library)

http://www.lungusa.org (American Lung Association)

http://www.ama-assn.org (American Medical Association)

http://www.docguide.com/news/content.ns ... g%20Cancer (Doctor’s Guide / Lung Cancer)

http://www.healthfinder.gov/Scripts/Sea ... ?topic=506 (Healthfinder)

http://www.medicinenet.com/Lung_Cancer/article.htm (Medicine Net)

http://www.cancerindex.org/clinks2l.htm (Cancer Index / Lung Cancer Resources Directory)

http://www.nfcr.org/site/PageServer?pag ... ncers_lung (National Foundation For Cancer Research)

http://www.patientadvocate.org (Patient Advocate Foundation)

http://www.lungcanceronline.org/effects ... fects.html (Lung Cancer Online / Hematologic (Blood) Effects)

http://www.cancerlinks.org/lung.html (Lung Cancer Links)

http://www.cancer-free.com (Cancer Free Connections)

http://www.healthinsite.gov.au/topics/C ... ung_cancer (Health Insite)

http://www.lungcancerclaims.com (Lung Cancer / Lung Cancer Information Page)

http://www.cancerlifecenter.com/engine. ... =dictionar (Cancer Life Center/ Cancer Dictionary)

http://www.canceryellowpages.com/Resour ... G%20CANCER (Cancer yellow Pages)

http://icare.org (ICARE / The International Cancer Alliance)

http://www.vh.org/index.html (Virtual Hospital)

http://www.lungcanceronline.org/support/financial.html (Lung Cancer Online / Financial, Legal & Insurance Issues)

http://cancernews.healthology.com/focus ... cancernews (Cancer News)

[kimblanchard]

Barbara,

Welcome to this wonderful board. You will get so much information here. It sounds like your Dad has a good Dr. There are many people living Stage IV way past those silly stats. ignore them as everyone else says. I would recommend that you read and research as much as you can. I read Fighing Back by Richard Bloch ( H&R Block). It was a great place to start. I also read "Love, Medicine & Miracles" ...forget the author.

Don't hesitate to ask questions and speak up, ever! That is very important and take notes or start a diary of things (note medications, etc.) I would also ask about chemo. sensitivity testing to see if your Dad's cancer will best respond to what he is taking. Time is always of the essence when it comes to cancer. Be proactive all the way!!!! Don't ever take a back seat.

Best to you.

Kim

[Ry]

Welcome!

The author grix mentions is Dr. Bernie Siegel. All of his books are wonderful.

[Margaret]

Barbara,

You have the first ingredient to success with this disease...a doctor who is there to fight with your Dad. I don't look at the approach as overly optimistic, but rather one that confirms hope and there is hope! I'm glad you signed on to the list...you'll never be alone in this battle. Welcome and I look forward to reading more about your Dad's progress.

Margaret

[S. Jane]

Welcome Barbara. My Dad also has lung cancer (SCLC) and what makes me feel like I can help him the most is by doing research, and asking questions. You said that you normally ask the questions, go ahead! It helps! For my Dad it has been overwhelming, and the information at times hard to take. I have been able to help him by filtering information a bit at a time, when he is ready. As time has gone on, he has been getting more positive. This forum has helped me tremendously in the short time I have been here.

[barbara w]

Thank you all for your warm welcomes and encouragement. It is truly comforting to know that there are so many other people going through these same tough times. I'm also inspired by the many survivors here. Again, many thanks.

Barbara

[Carleen]

Welcome Barbara,

As everyone before me has said, so sorry that you have cause to join us, but glad that you did.

There a many positive things to focus on at this rough time. First and most important is that you have found a good oncologist who sounds like a fighter, and one willing to fight and be optimistic for your father. Second is that your father's diagnosis is Large cell carcinoma. Of all the LC diagnosis' that is the slowest growing cancer type, and it is possible that through aggressive treatment your father can have a long life ahead of him.

Statistics are very misleading, and I am a firm believer that we shouldn't dwell on them. We must remember that not only is your father not a statistic, but that the statistics themselves are usually based on averages of patients over the past 10 years. That seems like it should therefore be considered credible, but on the contrary, there have been more advances in lung cancer research in the last 3 years than in the past 20 years. That makes the research skewed and more gloomy than it is currently.

So, in essence, research is making more advances each day, and your father's cancer is slow growing. There is no reason not to be hopeful and be optimistic. The only thing all of need is a little more time until that cure is found.

I will be praying for you and your father

God Bless

Carleen