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CynMs

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Everything posted by CynMs

  1. Hi all, still kicking here in Mississippi. First Dx in 2001. Have had 2 relapses, just finished 40 radiation treatments. But still strong 5 1/2 after first detection. Cynthia
  2. i am so saddened by your news. I wish there was something i could do. I will of course continue to pray for you. If you will send me your phone number or that of your step-mother in in Mississippi, I will call and check up on you. Know I think you are such a fighter, and are such an inspiritation to me, and to others here on this board. Sending you much love Cyn
  3. Phyliss, I am so sorry about your ordeal. I was wondering why I not received an email from you. I did not realize your sister lived so close. PLEASE...tell the doctors you need pain management. That is one portion of the Patient Bill Of Rights, the right to be pain free. It is so hard to be an advocate for ourselves when we feel so sick. I wish I could do something for you. Would coming back to Mississippu make things easier for you? Please tell me if there is anything i can do for you.. Love and prayers Cynthia
  4. I also experienced the metal taste in my mouth, and found that the only thing that tasted good to me was a baked potato with ranch dressing. Since then, I have heard that taking a zinc supplement helps with this. I have no direct experience with the zinc, but it couldn't hurt to try.
  5. Phyliss, you are such a remarkable woman. I can truly say that I have been inspired by your courage and determination to your recovery, and to your daughter. I have met you and you are NOT ugly, you are a beautiful strong woman, one who I am honored to call my friend. Keep pushing for the treatment you need and deserve. Lean on others here on this board when you need support, we will all be there for you anytime. Anytime one of us has a even a small victory is it a victory for all of us.
  6. I received taxotere during my second course of chemo. It did cause my hair to thin . I react very strongly to chemo..I was very fatigued, and had to take naps during the day. I have been unable to work since my diagnosis but lots of others on this board have been able to continue to work. I did experience the sleeplessness from the steriods, as you mentioned. You might want to talk to your doctor about a mild sedative or sleeping pill, these helped me a lot. And as others have said be very careful about infections. Good luck with your treatment.
  7. I had close to 40 radiation treatments to my tumor. I had it directed to the front of my chest as well as the back. On the front of my chest I had a mild sunburn reaction, but on the back I developed a 2 by 2 inch burn, that i had to treat and keep a dresing on it, but it was not painful at all. As others have said, fatigue is a problem. I also lost weight despite my appetite being good and eating well during the treatments, so you might need to keep an eye out for her nutritional status, maybe supplements or whatever her doctor recommends. But overall if was not a difficult experience at all.
  8. I went to MD Anderson for a second opinion after my initial diagnoses in 2001. I have been a nurse for over 20 years, and and worked at many hospitals over the years. I was VERY impressed with their efficiency in getting people in and to the right clinics. Local hotels offer shuttle service, but even if you drive the parking is very convenient, which is remarkable considering it is in downtown Houston. The test were done in a timely manner and the results were delevered in a timely manner. I would recommend it to anyone.
  9. I also experienced muscle and bone pain with the Taxol/Carbo. I took Lorcet but also found that hot baths with lavendar bath salts helped a lot. Plus, I smelled great...lol.
  10. I was dx with adenocarcinoma in 5/2001. Initially had Taxol/Carbo, had horrible side effects but had good response. Had RFA in 1/2002, which put me in remission for over a year, with reoccurance i n 3/2003. Started again on Carbo but had a anaphylatic reaction. Then I was placed on Gemzar/Navalbine. The gemzar really wiped out my bone marroe and had to get monthly blood transfusions, but that, along with radiation put me into remission again. I finished up with that treatment in 8/2003 and have had no disease discernable. Gemzar is good stuff, but it is very rough, at least on me. But, I told my physician to hit me with everything he had and boy, did he, But I am glad. Good luck with your treatments.
  11. I have been on Iressa and the only side effects Ihave had has been the rash. At my last check-up my onocologist told me that the rash was a sign it was working. So I took that as a good thing, although the rash is annoying.
  12. CynMs

    Drug Cost

    I have been on Iressa for about 6 months now. I have no private insurance coverage, only medicare due to my disability. AstraZeneca has a great patient assistance program. There are certain criteria you have to meet, but if you do, they will GIVE you the drug at no cost . Do a web search on Iressa or go to the company web page. and follow the directions Also there is a drug discount card available, called the Together-Rx card. Several drug companies participate, and many drugs are covered..not just ones related to cancer. Again, you have to meet some criteria, but the criteria are not that restrictive. Several of my meds are covered by this card. The number is 1-800-865-7211.
  13. I also had aching pains with the carbo/taxol combination. I found that hot baths helped. along with the pain meds.
  14. I applied for a Together-Rx card, that helps with many prescription drugs. Several drug companies are involved. the web site is www.togetherrxcard.com. or call 1-800-865-7211
  15. I had RFA in Janurary of 2002. It was done here in MIssissippi at the University of Mississippi Medical Center. Dr. Patrick Sewell is a world pioneer in the procedure. He has done both a RFA on my lung tumors and a cryo-ablation to my right ribs. He did the last procedure in one of the 3 Twin-Vertical Magnet MRI machines in the counrty. He is actually in the machine with you during the procedure and watches it on a monitor in "real time." I am now cancer free and pain free. Thank God for his many blessings. Of course, my cancer may return but he has extended the length of my life and improved the quality of my life. You can do a yahoo search of Dr. Patrick Sewell, and learn more about him and the procedure. There are risks ,and I did experience some some complicarions. But I would have it sone again tomorrow if I needed it. Good luck, Cyn
  16. I ,too had both chemo and radiation. Neither was any fun. With the radiation a lot repends on where they focus the beam. Some people get esophageal burns that make it hard to eat and swallow. I did not experience that, but I did have some external burns that took a long time to heal. I lost about 30 pounds during the process, so nutrition is very important. Good luck Cyn
  17. I WENT TO MD ANDERSON FOR A SECOND AFTER MY INITIAL DIAGNOSIS IN 2001. iF YOU GO TO THEIR WED SITE IT WILL TELL YOU HOW TO SELF REFER TO THEM. tHEY WILL PUT YOU IN CONTACT WITH A FACILITATOR AND THEY WILL TELL YOU ALL THE INFORMATION YOU NEED TO SEND TO THEM. i SEND MEDICAL RECORDS AND ACTUAL PATHOLOGY SLIDES FOR THEM TO REVIEW. iT WAS WORTH THE TRIP
  18. I HAD NO PROBLEM WITH MY INSURANCE PAYING FOR THE PROCEDURE. I AM NOT CERTAIN IF IT IS STILL CONSIDERED EXPERIMENTAL, THAT MIGHT BE A HANG UP. BUT, IF YOU CAN PROVE, WITH YOUR DOCTORS HELP THAT IT MIGHT BE LIFE SAVING, ANI CERTAINLY IMPROVE YOUR QUALITY OF LIFE, THAT MIGHT HELP.
  19. If by radio therapy you mean radiofrequency ablation, I am very familiar with that. Just e-mail me and i will be glad to share what I know. CynMs@aol.com ______________________________________________________ DX adenocarcimona unknown primary site in 4/2001. Tumors found in right lung. Went to MD Anderson-scanned, etc. finally decided it was lung primary Taxol/CarboPlatnin 6/-11/2001 Radiofrequency ablation of remaining tumors in 1/2002. In remission until 3/2003. Chemo of Gemzar/ Carboplatnin, severe allergic reaction to Carbo. Scan showed primary tumor had invaded right 3 ribs-underwent 36 radiation Tx. Developed chronic pain in ribs-had cryo-ablation in 10/2003. Now pain free
  20. I have adenocarcinoma of the lung. Dx in 4/2001 I an currently in my second remission, thanks to God and the Doctors and the chemo/radiation. While i was on Gemzar in the summer of 2003 I had to receive 3 blood transfusions, with 2 units given each time. Gemzar really does a number on the bone marrow. I did feel better post transfusions. Good Luck and God Bless
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