Jump to content

dadstimeon

Members
  • Posts

    5,866
  • Joined

  • Last visited

Everything posted by dadstimeon

  1. dadstimeon

    Roll Call

    Diagnosed Stage IV NSCLC (BAC) in May of 2002. Almost 7 1/2 years.
  2. Congratulations Patti on 3 years and many many more, way to go! Rich
  3. Fantastic news Joel/Maryanne-- that is wonderful to hear for sure! Rich
  4. Welcome Mariola, Sorry to hear about your dad. I was diagnosed in MAY of 2002 Stage IV with mets to my adrenal glands and I'm still here. My only option is chemo. So there is hope. Stay with us and keep us posted on dad and ask questions/research. Glad you found us. Rich
  5. Diagnosed Stage IV NSCLC (BAC) in May of 2002. Almost 7 1/2 years.
  6. Here is a good site you might find helpful. http://chemocare.com/eatingwell (Managing Eating Problems)
  7. Hi Kimberly, I have tried Provigil, Megace (also increases appetite), Concerta, and Ritalin. Right now on Concerta and does help get me through the day. Exercise helps (ride a stationary bike an hour per day) also. Below is an article on fatigue which is posted on GRACE. Also (see below) posted in Lung Cancer In The News forum is Provigil: Narcolepsy Drug Fights Cancer. I’m on a lot of meds which also can cause fatigue, just a thought. Other reasons lack of nutrition, stress anemia and depression. Worth discussing with Mom’s doctor. Of course everyone is different and reacts differently. Hope this helps. Rich http://lungevity.org/l_community/viewto ... t=provigil http://cancergrace.org/cancer-treatment ... ed-fatigue Fatigue is one of the most common symptoms for patients with cancer, reported in up to 90% of patients undergoing chemotherapy or radiation therapy. Patients who are cancer survivors can still be affected by fatigue months to even years out from their last treatment. Cancer-related fatigue (CRF) specifically refers to the distressing tiredness or decreased energy out of proportion to activity associated with cancer or cancer therapy. It does not respond to rest. It can affect concentration, sleep patterns, and emotional coping, separate from depression. It is also a symptom that is easily overlooked, as it is often “expected” or assumed to occur alongside treatment, and patients with non-cancer diseases also experience fatigue. In cancer, there can be many contributing factors to the fatigue that patients experience, and oftentimes, the fatigue is from multiple causes, both directly and indirectly related to the cancer. As many patients experience, the cancer itself can cause physiologic problems, such as anemia or electrolyte imbalances (think of sodium or calcium), or these chemical changes can occur from cancer treatments. For both chemotherapy and radiation therapy, fatigue is a known side effect; in chemotherapy, it tends to be more concurrent with treatment or immediately in the days afterwards between cycles; in radiation therapy, the fatigue tends to accumulate throughout the course of the radiation. Pain, if not controlled, can contribute to fatigue. It is also known that in advanced cancer, fatigue is caused by a metabolic syndrome of the cancer, similar to how loss of appetite and weight loss are also caused by this same metabolic syndrome. If patients are hospitalized due to complications like infections, this can cause both fatigue during the hospitalization as well as afterwards due to deconditioning (generalized weakness after a prolonged period of decreased mobility). Despite the fact that fatigue is extremely common, it can be difficult to convey how much fatigue a patient has —how do you measure it? For patients, it can be helpful to consider how you would “rate” your fatigue on a numeric scale of zero to 10, similar to the scales used in measuring pain levels, and how much fatigue affects your daily life. In general, if there is a specific cause of the fatigue (i.e., anemia, infection, electrolyte imbalance, etc), then the primary strategy is to treat that underlying cause. This includes treating depression and anxiety, both of which can cause fatigue separate even from cancer. For CRF without a specific cause, there are several treatment approaches to consider for fatigue: lifestyle-related and medications. Among strategies other than medications, all patients can benefit from strategies to adapt to fatigue, prioritizing specific goals and learning energy conservation techniques. Exercise has been studied and demonstrated to manage and improve fatigue as well. The key is to set realistic goals and to not overdo it. A specific type of exercise (i.e., swimming versus jogging) has not been established, but regular aerobic exercise has been thought to be more beneficial than weight training. Sometimes, oncologists can refer patients to specific physical therapy or outpatient rehabilitation programs to help with types of exercise and exercise planning. In conjunction with exercise, good sleep habits can also help with managing fatigue and maximizing energy. In terms of medications, there has been study of treatments for CRF, but no definitive studies pointing to the most effective one. Certain psychostimulant drugs have been examined and found to be helpful in fatigue. Ritalin (methylphenidate), while known as a treatment for attention deficit & hyperactivity disorder (ADHD), has been seen in several small studies to improve energy and fatigue, though this effect has been equivocal in larger studies. Similarly, provigil (modafanil) has also been used for CRF as well, due to benefits seen in the fatigue associated with depression. Other medications that have been used for CRF include megace (megestrol acetate) and corticosteroids like decadron or prednisone with the goal of both improving fatigue and appetite. Cancer-related fatigue is certainly a pervasive symptom, but a multi-tiered approach including non-pharmacologic therapies can be helpful and provide patients with tools to manage fatigue.
  8. Hope this might be of help. Rich HELPFUL RESOURCES: THE COSTS OF CANCER TREATMENT CAN QUICKLY BECOME OVERWHELMING, EVEN IF YOU HAVE MEDICAL INSURANCE. PATIENT ASSISTANCE PROGRAMS ARE OFFERED BY VARIOUS COMPANIES, NONPROFITS AND GOVERNMENT AGENCIES TO HELP PATIENTS WITH LITTLE OR NO INSURANCE GET ACCESS TO DRUGS AND MONEY FOR OTHER EXPENSES. IF YOU’RE INTERESTED IN ENROLLING IN A PATIENT ASSISTANCE PROGRAM, YOU MUST FIRST GATHER INFORMATION, USUALLY FROM YOUR DOCTOR OR THE MAKER OF THE SPECIFIC DRUG YOU’RE TAKING FOR WHICH YOU NEED ASSISTANCE. A DOCTOR MUST BE INVOLVED IN THE PROCESS BECAUSE THE PHYSICIAN WRITES THE PRESCRIPTION FOR THE MEDICATION. MANY PATIENT ASSISTANCE APPLICATIONS WILL REQUIRE PROOF OF INCOME, INCLUDING TAX RETURNS, SOCIAL SECURITY INCOME, INTEREST AND RETIREMENT TO PROVE FINANCIAL BURDEN AND TO MEET INCOME REQUIREMENTS. FAXING THE INFORMATION OFTEN SPEEDS UP THE PROCESS. IN ADDITION TO MANY STATE GOVERNMENTS, NUMEROUS ORGANIZATIONS PROVIDE INFORMATION ON PATIENT ASSISTANCE PROGRAMS, INCLUDING THE ONES LISTED BELOW. AMGEN REIMBURSEMENT CONNECTION 800-272-9376 WWW.AMGEN.COM/PATIENTS/ASSISTANCE.HTML FOR PATIENTS WHO ARE UNINSURED OR UNDERINSURED AND WHO HAVE LIMITED FINANCIAL RESOURCES; BASED ON INSURED STATUS AND INCOME LEVEL. DRUGS IN THIS PROGRAM INCLUDE ARANESP® (DARBEPOETIN ALFA) AND NEULASTA® (PEGFILGRASTIM). BRISTOL-MYERS SQUIBB PATIENT ASSISTANCE FOUNDATION 800-736-0003 WWW.BMSPAF.ORG ESTABLISHED TO PROVIDE TEMPORARY ASSISTANCE TO PATIENTS WITH FINANCIAL HARDSHIP WHO GENERALLY HAVE NO PRIVATE PRESCRIPTION DRUG INSURANCE AND ARE NOT ENROLLED IN A PRESCRIPTION DRUG COVERAGE PLAN THROUGH MEDICAID OR ANY OTHER FEDERAL, STATE OR LOCAL HEALTH PROGRAM. CANCERCARE 800-813-4673 WWW.CANCERCARE.ORG/GET_HELP/ASSISTANCE CANCERCARE’S FINANCIAL ASSISTANCE PROGRAM PROVIDES LIMITED GRANTS FOR CERTAIN EXPENSES RELATED TO TREATMENT. GENENTECH’S SINGLE POINT OF CONTACT 888-249-4918 WWW.SPOCONLINE.COM AVASTIN EXPENDITURE CAP: 800-232-2717] A REIMBURSEMENT RESOURCE FOR GENENTECH PRODUCTS THAT PROVIDES INFORMATION TO PATIENTS AND THEIR HEALTH CARE PROVIDERS. GLAXOSMITHKLINE’S COMMITMENT TO ACCESS 866-265-6491 WWW.COMMITMENTTOACCESS.GSK.COM PROVIDES OUTPATIENT MEDICATIONS TO ELIGIBLE LOW-INCOME PATIENTS WHO DO NOT HAVE PRESCRIPTION DRUG BENEFITS. LILLY CARES 800-545-6962 WWW.LILLYCARES.COM PROVIDES TEMPORARY ASSISTANCE TO PATIENTS OBTAINING LILLY OR DISTA MEDICATION. MERCK'S ACT PROGRAM 866-363-6379 HTTP://WWW.EMEND.COM/APREPITANT/EMEND/C ... /INDEX.JSP ACT IS A TWO-PART PROGRAM SPECIFICALLY DESIGNED TO ASSIST INSURED PATIENTS WITH INSURANCE REIMBURSEMENT ISSUES, AND TO PROVIDE PRODUCT SUPPORT FOR THOSE QUALIFIED INDIVIDUALS LACKING COVERAGE FOR EMEND® (APREPITANT). PARTNERSHIP FOR PRESCRIPTION ASSISTANCE 888-477-2669 WWW.PPARX.ORG OFFERS A SINGLE POINT OF ACCESS TO MORE THAN 275 PUBLIC AND PRIVATE PATIENT ASSISTANCE PROGRAMS. PATIENT ADVOCATE FOUNDATION'S CO-PAY RELIEF 866-512-3861 WWW.COPAYS.ORG PROVIDES DIRECT FINANCIAL ASSISTANCE TO QUALIFIED PATIENTS TO ENABLE THEM TO AFFORD CO-PAYMENTS REQUIRED BY THEIR INSURANCE. OFFERS PERSONAL SERVICE TO ALL PATIENTS THROUGH CALL COUNSELORS. PFIZER’S FIRSTRESOURCE 877-744-5675 WWW.PFIZERHELPFULANSWERS.COM FIRSTRESOURCE PROVIDES PRODUCTS TO ELIGIBLE, LOW-INCOME, UNINSURED AND UNDERINSURED PATIENTS. RXASSIST AND RX OUTREACH PATIENT ASSISTANCE PROGRAMS WWW.RXASSIST.ORG OFFERS ASSISTANCE TO PATIENTS WITHOUT PRESCRIPTION DRUG COVERAGE WHO MEET INCOME REQUIREMENTS. RX HOPE 877-979-4673 WWW.RXHOPE.COM OFFERS INFORMATION ON ASSISTANCE PROGRAMS FROM VARIOUS PHARMACEUTICAL COMPANIES; OFFERS AN ASSISTANCE FINDER, WHICH MATCHES PATIENT INFORMATION AGAINST AVAILABLE FEDERAL, STATE AND CHARITABLE PRESCRIPTION DRUG PROGRAMS. SANOFI-AVENTIS’S PACT PLUS 800-996-6626 HTTP://ONCOLOGY.SANOFI-AVENTIS.US/REIMBURSEMENT.DO OFFERS REIMBURSEMENT SERVICES AND PATIENT ASSISTANCE PROGRAMS FOR MOST PRODUCTS INCLUDING TAXOTERE® (DOXETAXEL) AND ELOXATIN® (OXALIPLATIN INJECTION). SCHERING-PLOUGH’S COMMITMENT TO CARE PROGRAM 800-521-7157 WWW.SCHERING-PLOUGH.COM/SCHERING_PLOUGH ... T_CARE.JSP PROVIDES FREE CANCER MEDICATIONS THROUGH PATIENT ASSISTANCE PROGRAMS TO PEOPLE WITH LOW INCOMES WHO DO NOT HAVE PRESCRIPTION DRUG COVERAGE. TOGETHER RX ACCESS 800-444-4106 WWW.TOGETHERRXACCESS.COM ASSISTANCE FOR PATIENTS WHO ARE INELIGIBLE FOR MEDICARE, HAVE NO PRESCRIPTION DRUG COVERAGE AND MEET HOUSEHOLD INCOME AND AGE REQUIREMENTS.
  9. Joy, Glad to see things are looking up. Check out The Wellness Community, they have two in Florida as well Gilda's Place and it's free. Might be one near you. It's important to talk to people in person also who have been there, done that and not to go it alone. Hang in there Rich http://www.thewellnesscommunity.org/Default.aspx (The Wellness Community)
  10. I'm very sorry and saddened to hear about Bucky. She was a sweet down to earth person, every now and then would get a nice PM from her. My condolences to all her family and friends. I will miss her for sure and will always remember her. Rich
  11. Congratulations and way to go! Keep it up and many many more for you.
  12. Welcome Joy, Glad you found us. It's a lot to take in at first and is understandable how you feel but as mentioned (Ned) don't pack it in yet. We have many members who have far out lived their prognoses. Lung Cancer in not a death sentence and one can live with it for many years. Often treated as a chronic (mine is) disease. Stay with us, ask away and keep us posted. Rich PS: I would get a second/ third opinion, your doctor sounds very negative and offers little hope.
  13. dadstimeon

    Tarceva

    Hi Renate, I was on Tarceva for about 7 months and had good success until it stopped working. I developed diarrhea and the rash. Lowered the dosage from 150MG to 100MG and that cleared up the diarrhea. The rash I only had for a short (and was not bad) period and it went away by itself. I never bought into one has to have side effects in order for treatments to work. We have had members with severe side effects and it did not work and members who had no/ or very limited side effects and it did work. Everyone is different and reacts differently, one never know until one tries-- keep the faith. One member who started on Tarceva in 2005 and I believe is still on it. Also keep in mind one can lower the dosage and still have good results. Hope this helps, prayers for the best. Rich http://www.tarceva.com/patient/index.jsp (Tarceva WebSite) Genentech Patient Resource Center Speak to a live operator today and receive more information about Tarceva; call 877-TARCEVA (877-827-2382) Hours Available: M-F 6am-5pm PST http://www.gene.com/gene/products/infor ... ribing.pdf (HIGHLIGHTS OF PRESCRIBING INFORMATION - From There Website) Note: Skin reactions may occur or worsen in sun exposed areas; therefore, the use of sunscreen or avoidance of sun exposure is recommended.
  14. Well for me knowledge was and is the key. I spent countless hours on the internet (there are plenty of good reputable sites for research) reading anything, everything to learn and understand as much as I could. I think it is important to be as knowledgeable as possible to make decisions along with one’s doctor. I took things as they came down the pike, not getting ahead of myself. I never did and still don’t think lung cancer is a death sentence, that life was, is over or why bother—as far as statistics go they are what they are and was not going to kid myself, anyone or let it stop me. I was very pro-active with treatments and it paid off, my cancer has been stable since Dec06 and right now lung cancer is the least of my (it’s been one health issue after another since 2002, see my profile) troubles. You need a good support (for me my wife, daughter and best friend as well have great doctors/nurses) team. I have, had my moments like anyone else but for the most part I stay positive and try to have a good attitude which for me helps when dealing with adversity. There is no magic bullet or one pill fits all its lung cancer 101, you learn as you go along. I live life as normal as possible, focus on living, not dying and on what I can do not what I can not do. Had and have to learn to adjust to things as one goes along because life is not and never will be the same. Life is too short to sit around and let it go by, always could be worse and there is always someone who has it harder. Was not always easy or fun but regardless of what happens in the end at least I lived my live (did not let cancer win) to the fullest and kept my promise to my wife, daughter and best friend I would never give up or stop trying. Rich
  15. Oscar the Grouch --Here is a link to some of them and where they came from. Surprising stories behind 20 Muppet characters http://www.cnn.com/2009/LIVING/wayoflif ... index.html
  16. Welcome Mary, Glad you found us. I'm Stage IV seven years out since diagnoses, not curable/operable etc. Had few problems with chemo all things considered. As mention everyone is different reacts differently. Tell day to take it one day/one step at a time. We have members doing well regardless of age. Research as much as you can, knowledge is the key. Forget statistics many of us have far out lived our prognoses. Stay with us, ask questions and let us know how dad is doing. Rich
  17. Thanks Katie for the kind words and for everything you do-- Keep it up! Also thanks to everyone who make this board a great place! Rich
  18. Welcome Lisa, Sorry you have to be here but glad you found us. You have been given a lot of good advise. It's understandable how everyone feels and still being in shock mode. I can relate to your father because I also have (as well other members) several health (see my profile) issues which add to the mix for sure. I'm Stage IV (right now lung cancer is the least of my problems) and seven years out and as mentioned a lot of members here are survivors living many years after their prognoses. Take it one day/one step at a time. Over in the LC Survivors Forum there is a sticky post (Helpful Links / Questions to ask your Doctor) you might find helpful. Stay with us and keep us posted on how you dad is doing. As long as there is life there is HOPE! Prayers for the best, Rich
  19. Hi Maddie, I have Stage IV BAC, was diagnosed in May of 2002. Not sure why your options are only Tarceva because I had numerous chemo (few side effects as well) treatments and good success with all of them but (see my profile) one. Also being pro-active has kept my (prognoses 2 years) cancer stable since Dec06. I would encourage you to get a second or third opinion and not settle for there is no options or hope. Feel free to PM me any time if I can be of help. Rich
  20. Kasey, I'm very sorry and my condolences to Tracy's family and friends. Rich
  21. Hi Carol, I had Alimta and Tarceva, had good results with both of them. The Alimta (has kept me stable since Dec06) only side effect I had was fatigue. The Tarceva only side effects I had was rash (it came and went on its own) and diarrhea (lowered the dosage from 150 mg to 100mg and cleared that up). Hope this helps and good luck with the Alimta. Rich
  22. Welcome Brian, Glad you found us. Who says you will not be here to see your boys grow up. I'm Stage IV and last month makes it seven years since diagnosed. Right now lung cancer is the least of my troubles, go figure. It's a new normal and yes takes time to get used to it. Everyone deals with this differently so keep that in mind. It's Lung Cancer 101. Take it one step/one day at a time. Focus on what you can do not what you can't do, keep busy as best you can. Focus on living/not dying. I'm also home all day by myself and two cats. I keep busy doing things around the house, yard and my workshop as best as I can. Do as much as I can with my wife and daughter. I have my (getting harder) days just like anyone else but still refuse to let lung cancer/my health get the best of me. Don't go it alone, join a support (if you are able to get out and about) group, helps to talk to people who have been there, done that. Below is a link for The Wellness Community, it is in Newton and they have a Lung Cancer Support Group. It's free and they also offer support for family members. I live just North of Boston if you need to talk to someone, feel free to PM me anytime. Hope this helps. Hang in there and keep us posted on how you are doing. Rich http://www.thewellnesscommunity.org
  23. Hi Kristi, It's your fathers blood (red cells, white cells, platelets) counts that plays a big role in terms (a low white blood cell count means your immune system isn't as strong as it could be and that you are at increased risk for infection) of infection (plus overall health) which they monitor during chemo to make sure they are at a certain level to receive chemo and not at a risk for infection etc. As mentioned by Kasey I/nor anyone wore a mask during my treatments but used common everyday precautions. I also have ITP (a blood disorder, numerous times my platelets dropped to 5) and never felt the need to use a mask but just used common everyday precautions. Below is a very good site with tips you might find helpful. Hope this helps. Rich http://www.chemocare.com/managing/infection.asp (Managing Chemotherapy Side Effects : Infection)
  24. Hi Pixie, Here's a site that might be of help with some good info. Hope this helps and prayers for a good report. Rich http://chemocare.com (Chemocare)
×
×
  • Create New...