Please, help. My Father Needs Encouragement and Hope.

[KC]

Hello everyone. I have posted here before, but mostly just lurk and pray and laugh and cry along with everyone. My father has been battling NSCLC Stage IV since being diagnosed in December 2001. They say it is BAC. Surgery was never an option, although I begged for it because it started out with only 3 small nodules, 2 in one lung and 1 in the other. I couldn't find a surgeon to do it. He has been taking chemotherapy ever since diagnosis with a small break (about 10 weeks) on Iressa. Each time he tried a new chemo drug he had initial shrinkage and stablization and then progression, so it was on to the next. His latest chemo has been Cisplatin and CPT-11, he started that in July after they discovered liver mets. His last scan at the end of November showed shrinkage in all lung nodules (there are many) and 50% shrinkage in the liver! We were thrilled. He continued with the weekly Cisplatin-CPT-11, even though it knocked the heck out of him, but he figured it was working. I also had started him on TM therapy at the end of September. Lately his red blood counts have been taking a beating and he has had 2 transfusions so far along with Procrit. He had been having back pain on and off for a while, but finally told his onc. as the pain was not letting up as much and last week we discovered he has mets to his hips or spine. That is what was causing the pain. He feels fine otherwise, except for this pain in his back. He can't seem to get a break. When one thing goes away, something else pops up. He has now just received his first 2 of 10 radiation treatments. He is in alot of pain in his back and my heart breaks for him. He is so disgusted, depressed and just about ready to give up. I don't know what to say to him anymore, he needs to hear from people who have been there and done that. He doesn't really talk to anyone about what he is feeling or what is happening, especially me, since he doesn't want to worry me. I worry anyway. I'm worried and scared to death. When his friends or his brother calls he doesn't tell them how he really feels and I can see it in his face how he really feels. He said the other day that all he wanted was 7 more years. He has been fighting for his life for two years now. He has taken every treatment, pain and bump in the road with grace and dignity, more than I ever could. His courage is just remarkable. I live with my father along with my 2-1/2 year old daughter who is the light of his life. I know how badly he wants to see her grow up, at least enough so she will have memories of him. I think that is where he came up with the 7 year number. That is what breaks my heart more than anything. She can't lose her Grandpa, the most gentle caring, best man in the world and her biggest fan and I can't lose my Dad. He is only 65 years old. But all of this good news and then followed by bad news is taking it's toll on him. He can't even rejoice in the good news anymore, wondering what it too follow, it's a darn shame! I think my father believes that if he now has bone mets that the other tumors are probably growing too. But it's possible that they aren't, isn't it? If I tell him that, he just thinks I am trying to pacify him. Please, any words of hope, encouragement are greatly appreciated. I am going to print out the responses and let him read them. He really needs hope and encouragement right now more than anything and he needs it from someone other than me. I apologize for the lenghthy post. Thank you all so much and god bless.

[-Cheryl-]

KC,

Your Dad sounds like quite a fighter. Poeple have survived this disease and won at every stage. I can not imagine being on chemo for that length of time, whch is a testament to your Dad's will to survive. Attitude has everything to do with siurvival. Its O.K. to have some down time, but tell your Dad to put the gloves back on. He isn't through fighting yet...He has a grandaughter to watch grow up! Prayers for your Dad.

Cheryl

[dadstimeon]

Hi KC,

Very sorry to hear about your father and welcome aboard. I too have BAC and I’m at stage (see my signature) IV also. Has your father talked to anyone about being depressed? That’s an area that should be addressed ASAP. I to am fatigued and tired. I take Ritalin and it does help. Have they given him anything for his fatigue? I know it is hard. I found it best to take one step at a time and one day at a time. I would highly recommend that your father (if possible) join a support group for people with lung caner or perhaps a phone buddy he can talk with. They also have support groups for caregivers. It’s best not to go it alone. Stay with us. Stay positive and focused. Lots of wonderful and caring people with lots of knowledge to provide. My prayers are with your father, you and your daughter. 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]

https://cissecure.nci.nih.gov/ncipubs (NCI Publications Locator)

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 ... 08,00.html (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)

[KC]

Thank you Cheryl and Rich for your responses. You are both so kind, everyone on this board is. Rich, my father has been on anti-depressant medication for many years, even before his diagnosis. He take 40 mg. per day of prozac. I asked him to please consider upping it to 60mg. but he refuses to take one more pill a day. I wish he would join a support group or have a phone buddy, but it's just not for him. He's a quiet guy when it comes to sharing his feelings. So I have been relaying to him for the past 2 years all the positive stories or survivors and any other positive news I hear. I'm getting the impression after this latest blow, that he doesn't want to hear it from me anymore and it makes me sad because I don't want to stop encouraging him, but I guess he needs time to sort it out on his own, so I try to back off a little. I'm just praying that the radiation kills the bone mets and that everything else will stay stable. Who knows, god willing, maybe the TM will have kicked in by now, it takes 3 full months following the intial dose to take effect. That would have been the end of December. Maybe it will work for my father. I also asked him to ask his onc. for a prescription for Iressa if he decides to stop the chemo. Although he tried it in the past, he only had very slight progression and his onc. back then took him off. I have spoken with others who now say that they had slight progression too at first on the Iressa and continued anyway and remained stable, so who knows. It's better than doing nothing and now that it's FDA approved, I think my dad's insurance covers it, but we'll see. I hate this disease, it still feels like a nightmare to me that I'll never wake up from, even after all this time.

[gerbil runner]

My mom also is not into the "support group" thing - never has been. Just be as encouraging as you can. If you find a post or article you think would be good for him to hear about, just print it out for him with no fanfare.

Your dad's anti-depressant med. could be changed, if necessary. 40 mg of prozac is a pretty good-size dose. Can you talk to his dr?

What I would try to emphasize with your dad is that treatment is always advancing. The trick is to survive long enough to find the treatment that knocks the cancer back hard enough. His will to live is one of his most important cancer-fighting tools.

[Guest Laura]

Dear KC,

Just try to stay positive. When my stepdad, a doctor, would get down in the dumps, it was usually because he was tiered and couldn't work. He would say that he felt so useless. My mom and I would try to lift his spirits by joking that his job was to make red and white blood cells. This was when he was having his chemo. We would ask, "Did you make your red blood cells?" Sending ya a prayer!

[KC]

Thanks Jen and Laura for the encouragement. Jen, I doubt my father is going to change his anti-depressant medication. I can barely speak to him about medication anymore with him getting angry. He's sick of it all right now. I'll see how the next few days go, sometimes he'll just pop out of the depression on his own. I'll try and talk to him again about everything, sometimes he'll say something to me and I'll know he wants to talk. I'm waiting again for that opportunity. Love to all and thanks for the prayers.