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Inkerdoodler

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Hi I'm Sandy: DH Jim age 61 diagnosed 12/03. Strong spirit and wonderful sense of humor keep us going all the time! We have 5 grown children and 5 grandchildren. Being treated at Dana Farber in Boston. Initial tumor location close to heart, so surgery was not an option. Chemo+radiation shrunk tumor and nodes. After 6 mos. remission we went on a 2-wk cruise but he developed severe edema in legs/feet. PET scan showed "unclear spots" - diagnosed as apparent recurrence. Had 6 Alimta treatments to no avail, PET showed increased growth. Alimta caused severe fatigue; decreased BP (always "cold");loss of appetite (nothing "tasted good");decreased red count required 2 transfusions. After 2 treatments with Taxotere CT shows no apparent progession so we opt to continue as Taxotere side effects (leg cramps,neuropathy)are tolerable. Pleural effusion is causing more SOB during hot/humid weather. Considering pleurocentesis. He does not want to know any "details" but I want/need to have as much information as possible! Self-employed in sales, he is unable to travel so income has decreased substantially and we rely on my income/health insurance - becoming challenging. Young resident advised him in July to "see people you want to see and do things you want to do quickly while you still feel reasonably well" - he refuses to accept this and stays optimistic, but feels depressed and "guilty" because he is no longer able to do any yard work/household chores. We try to stay positive!

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Welcome Sandy/Jim, Sorry you had to find us, but you are at the right place with the best people for support, caring and sharing. Stay positive and focused. Keep busy, keep moving. Might want to try The Wellness Community for support, here is the link http://www.thewellnesscommunity.org/pro ... /guide.asp support. Helps to be with people going through the same thing. Not sure where you are in Mass, I'm just outside (north) Boston. Feel free to PM me you/Jim if you need an ear to listen. Also below are some links you might find helpful. Hope this helps. Keep us posted. Prayers for the best. Rich

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

http://www.tarceva.com/tarceva/patient/contact.jsp (Tarceva Hotline)

http://www.yourcancersource.com/useful.html (Your Cancer Source)

http://www.merck.com/mmhe/index.html (Merck Manuals / Medical informations)

http://bmj.bmjjournals.com (British Medical Journal's)

http://www.cochrane.org/index0.htm (The Cochrane Collaboration / The reliable source of evidence in healthcare)

http://cancer.gov/dictionary (NCI Dictionary of Cancer Terms)

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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Welcome to our group. I hear Dana Farber is suppose to be a great place for care. Do they suggest another round of chemo? Does he have a pleural efffusin? Keep us posted. Donna G

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Welcome Sandy;

I hope your husband's cancer remains stable or diminishes. I have heard that carboplatin with taxol and avastin is a very promising chemo combo. Some insurance companys will pay it or the company that makes avastin will pay for it if the insurance does not. You have to fill out a form at he ocologist's office to get it free from the drug company.

I guess I pretty much got my diagnosis in December 2003 too, after a PET scan. I have had cancer twice now, but am fortunate in that it was early stage both times. Your husband and you have my best wishes to beat the cancer.

don M

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He does have pleural effusion, which has increased in last month with increasing SOB (could be also related to another drop in red count) - considering pleurocentesis... I have not been able to find any info on this procedure in a search so would appreciate any information on it. I would prefer NOT to have it done in an ER so if possible we will wait till next week. Have been advised by RN daughter to make sure it is done by a pulmonologist, not ER doc or resident. Anyone have experience with this?

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hi Sandy.

I have had 3 or 4 thoracentesis done. That is where a needle is inserted between the ribs and into the plueral "space" where the fluid accumulates. A tube is hooked up and using gravity the fluid drains. It is tested for cancer cells with the results available in a couple of days.

I had the first by a pulmonologist and the others by interventional radiologists. I prefer the radiologists as they can "see" the fluid. Two were with an ultrasound and one was with guided CT scanner.

It is not uncomfortable for most people, and I do tolerate procedures well, but this one gives me the creeps. So I ask for a light sedative.

Pleurodesis is a procedure that I am looking at now. That is where that sack that lines the lung is "glued" to the lung so that no more fluid accumulates. That is an inpatient stay from 1 to 4 days depending on what technique is used. They either would put talc in there or put a semi- permanent tube in there so that I could drain the fluid myself at home.

Good luck to you. Hope this helps. If you have any questions, please pm me.

Cindi o'h

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Welcome Sandy and Jim,

Just the place to get all the answers to your

questions.

Will leave the place to those that have knowledge

but wanted to say Hello! and Welcome.

J.C.

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Hi Sandy,

Welcome here, I am so sorry you had to find this site.

I feel so bad for Jim. This all must have thrown you guys through a loop as he stopped smoking 20 years ago. I am so sorry he is going through such a horrific time.

I know he is so scared especially what the doctor told him, but let him know that statistics do not mean anything. People are told those things all the time and ya know years later they are still here. So so many on this site and the numbers keep growing and growing.

There is light at the end of the tunnel. Keep a postive attitude and faith that things can and will turn around for him.

He may want to look into social security disability for money. He seems to be a good canidade for that.

We are here for you 24/7.

Prayers being sent to Jim.

Maryanne

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Sandy,

Welcome. We often downplay the emotional and mental effects of serious disease while to scramble under pressure to do anything we can for the body. Sounds like Jim is having as hard a time with his feelings about himself as he is with his physical symptoms.

Would he consider going with you to a support group "just to check it out?" Even if he doesn't feel like talking about himself, he might be surprised to find how much he has in common with others going through the same thing. Just that realisation can start a person on the road to feeling better about himself.

I've read posts here from people of all ages and both sexes who have had to give up their employment because of the disease and the stress and depression that has caused. If Jim doesn't want to post here himself, maybe you could read him the posts you find that address his issues.

Glad you have joined our family, even if I'm sorry you need to.

Leslie

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Welcome Sandy and Jim,

I am so sorry that you are going through this but I will say you have found the right support community. This is a family of loving, caring people made up of patients, caregivers, people that have lost their loved ones and so on.

I would have been lost without them through my Brothers sickness and passing. Here it is a yr and 2 months later and I am still here as you become very attached to the wonderful people here.

I am praying for Jim and you and hoping you stay with us and get the support you need, the cheers you need when things are good and the shoulder when things are bad. There is also an ask the experts forum for questions you want to ask of a professional.

God Bless you both,

Jane

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Welcome Sandy & Jim. This is a wonderful group of people that have all been affected by lung cancer. Some are patients, while others are family members, freinds and caregivers. I'm sure you will find a lot of support and information here.

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Had thoracentesis a few days ago... done in office of thoracic surgery in teaching hospital. Found out afterward that it was done by a "fellow" rather than the regular surgeon (we should have asked the questions in advance). Difficult procedure... painful and taxing... they allowed me to be in the room with him, but he passed out during the procedure (I thought I was losing him when that happened). They extracted 2 liters of fluid before he passed out and that was not all there was (he knocked out the needle and they did not want to put him thorugh the insertion again). Don't know if it will have to be done again. They are talking about the possibility of the "talc" procedure to prevent future accumulation of fluid but we will need to do some more homework on that procedure. We feel very naieve about everything but welearn more about our rights/options and mistakes we've made with each one!! He feels somewhat better afterward but we are not sure whether the lung has re-inflated or not. He is having less trouble sleeping, which is good.

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Welcome Sandy & Jim

I have also had the procedure done twice. Both times was in the E.R. with a thoracic surgeon. When I needed it done again we decided on a Plurex cath. now I drain at home whenever it gets uncomfortable.

Since radiation we don't get any fluid any more so I think it has finally dried up.

Vicky

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