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Mostly a lurker, I have a ?


dena

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Hi Everyone

I mostly lurk on this board, partly because I could not remember my user or my password, I am computer iliterate. Anyway, Everyone on this board has helped my greatly over the past year. My mom is soon to be 57 and she was diagnosed last May with NSCLC stage IIIb inoperable with some limph node involvement. She had chemo and radiation and has been done since December. The latest scan showed everything stable. No other hot spots luckily. She is doing great she is back gardening and exercising lightly at respitory rehab where they can keep an eye on her. My question is she said the doctor did a blood test (could not remember the name) that would show any elevations I guess in her blood if anything was going on anywhere else? the normal range he said was between 0-30, Hers was a 17. Has anyone heard of this? Also, there is a women I am sorry I forget her name that her husband has the same diagnosis and he is on I think Iressa or another form of meds. My mom is not on anything and her Doctor said there is no trial drugs for stage III, and it is a malpractice suit waiting to happen if he gives her something. I am sure you can imaging how Frustrated I am. She has been to DanaFarber in Boston as well as her regular Oncologist. I do not have a lot of Faith in this Doctor because he is her primary Doctor as well and she told him for 1 1/2 years she did not feel right but could not pinpoint it. He basically told her her blood work was fine and that it was all in her head. He knew that she smoked heavy for 30 years and has not smoked in almost 5 years. He was very defensive when I asked why they do not do yearly chestX rays on People who heavily smoked. He said it is not a good indication. However if my mom did not ask for one after her phnemonia, When when he had done something. Anyway I am sure someone can answer these queations for me. I am sorry this is so long.

I am 37 married with 3 young terrors I mean boys LOL, My mom is my very best friend she had me at 18 and it has only been her and I until she got remarried 13 years ago. She is very very close to my children. I can't even think about loosing her I start to loose my breath. I can't imagine my life without her. I love my husband but your mom is your mom and loves you no matter what. My name is Denise, I put my username as Dena just incase my mom goes on the board she wouldn't realize it was me right away. She hides some things from me because she knows how upset I get. The only time I saw her cry is when my son pulled her wig off, She was scared they would be afraid of her. And they were not but it crushed her. I just want to know that we are doing everything we can to give her the best chance .

Thanx so much for listening

Best to you All

Denise

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Denise,

Sounds like it's time for a new doctor.

Trials are NOT a "lawsuit waiting to happen". In fact, when embarking on the journey of a medical trial, there's a crapload of paperwork to sign stating that you know it's a trial and you do not hold the doctor/hospital/etc. liable for any thing considered out of their realm (side effects, etc.).

Try another doctor and do some online research. Dadstimeon (Rich) has many, many links to share on where you can start your search. If she is still fighting "active" disease, it would seem to me she would be a candidate for some trial.

Good luck,

Becky

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Hi Denise, welcome to the board. She is correct about Rich, and he lives in New England also. Your Mom is still young, a second opinion is a good idea. I hear though that Dana Farber is a good place. Is the cancer in bothe lungs? Why can't they operate. Donna G

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Hi Dana, Very sorry to hear about your mom and as everyone stated a second/third opinion is needed. I see your mom went to the Dana Farber. I can give you the name of my doctor who is right down the street from the Dana Faber if you would like? Have had great success (see my profile) under her care and trust her with my life. Please feel free to PM me if I can be of any help. Also below are some links that I hope will help you. Prayers for the best for your mom and you. Rich

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

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

http://lcam.org (Lung Cancer Awareness Month / November)

http://www.nccn.org/patients/patient_gl ... tents.asp# (Lung Cancer Treatment Guidelines for Patients – Version II/May 2004)

http://cancerweb.ncl.ac.uk/cancernet/600081.html (National Organizations That Offer Services to People With Cancer)

http://www.acscsn.org/books (The ACS and NCI Offer Free Cancer Survivorship Books)

http://www.cancercare.org/FinancialNeed ... .cfm?c=388 (Financial Needs: Internet Links for Financial Assistance)

http://www.cancermonthly.com/ (Cancer Monthly (The Source For Cancer Treatment Results)

http://www.roycastle.org (Roy Castle Lung Cancer Foundation)

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

http://www.plwc.org/plwc/MainConstructo ... _id=&state (Caregiving)

http://www.cancer.org/docroot/MON/MON_1.asp (Track Side Effects)

http://www3.cancer.gov/cancercenters/centerslist.html (NCI-designated Cancer Centers / Cancer Centers Listed by State)

http://www.healthology.com/focus_articl ... cancernews (How To Eat Well During Cancer Treatment)

http://www.lifeclinic.com/focus/nutrition/nutrition.asp (Nutrition Facts and Information Center)

http://www.about-nsclc.com/content/patient/nsclc (Iressa)

http://www.about-nsclc.com/content/prof/about (Iressa)

http://www.findcancerexperts.com (Find Cancer Experts)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Making Decisions About Cancer Treatment)

http://www.chemocare.com (ChemoCare)

http://www.curetoday.com/currentissue/d ... index.html (Toolbox: Resources You Can Use)

http://www.cancerindex.org/clinks8h.htm (Resources for Caregivers)

http://www.google.com/search?hl=en&ie=U ... sa&spell=1 (Medicaid)

http://www.thehealthinsurance.com/medicaid.htm (Medicaid)

http://www.thebeehive.org/health/contests/medicaid.asp (Medicaid)

http://www.lungcancerfyi.com/lung_cancer_faq.html ((Lung Cancer - Frequently Asked Questions)

http://www.lungcanceronline.org/treatme ... osurg.html (Surgery - General Information & What to Expect)

http://www.lungcancerfyi.com/lung_cancer_glossary.html (Lung Cancer Glossary)

http://www.plwc.org/plwc/MainConstructo ... 008,00.asp (Receive the PLWC Bulletin)

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://www.lungcanceronline.org/index.htm (Lung Cancer Online / HomePage)

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

http://cis.nci.nih.gov/fact/7_48.htm (Follow-up Care: Questions and Answers)

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Hi Denise,

I am definitely with everybody else on this issue. Run, don't walk to get a 2nd opinion. That doc is wrong, scared about a malpractice suit. This is your moms life we are talking about. Your best friend..

Seek out a 2nd or if you have to a 3rd. opinion.

Prayers sent to you and your mom.

Maryanne

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Hi Denise:

your post indicates that your mom has no evidence of disease now. When was the last ct scan? I think I would want one every 3 months for the first year. The only thing you are unsure about is the blood count. I can't help you with the blood count. I may be wrong, but people don't go on second line drugs like iressa unless there is disease present. I have heard of people taking celebrex to stay disease free.

At any rate, I don't like the malpractice comment your mom's doc made. It indicates that he may not be very proactive in treatment. I think you should see another oncologist and you can take a copy of the blood test report with you and ask about it. The doc Rich mentioned looks like a good choice. I hope your mom stays disease free. You sound like a loving daughter.

Don M

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Hi Dena.

I am with Don M. on this.

I think your Mom should be followed closely by a good onc. that she trusts. I don't know about any blood tests to tell about lc. activity.

As far as the chest xray and lc dx, mine was on multiple chest xrays, but missed everytime by MDs. I wrestled with it too.. and finally let it go...you can't "shoulda" nothing. What is done is done. It is in the past. All you can do is move forward.

I asked my lc doctor about following up with a drug like Iressa or Tarceva just to put some ummph into my treatment. He said that as long as there is no evidence of disease this far out from treatment that it would not be a recommendation of his.

Good luck with all you have going on. I am glad that you are finding some help here.

Cindi o'h

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