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mhutch1366

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Everything posted by mhutch1366

  1. I had a full year of PT through NIH, and after two years I kind of stopped doing the exercises. The last couple of months I am really noticing the restrictions from the radiation induced fibrosis. I've been told that never stops: radiation is the gift that keeps on giving and giving. I need to start mine again. Additionally, I had a pulley that attached to the door to do passive range of motion on my arms. Now I have to have it on my back. Useful. Stick to it , it works. MaryAnn
  2. Check with Kasey, she had her esophagus "stretched" and I have heard of stents being put in too. There is a way, beside a feeding tube, to keep your dad in good nutritional shape. MaryAnn
  3. Awww. ((((((((((Carleen)))))))))))))) I am so sorry, so very very sorry. May God hold you close and give you strength to get through this time of deep sorrow. XOXOXOX MaryAnn
  4. whoa..... The Keys! Who'd a thunk? I'm delighted you sound so much better. Go for it, girl, you only live once... XOXOXOX MaryAnn
  5. Don and Lucie, From the bottom of my heart, Thank you! XOXOXOX MaryAnn
  6. Hi Lillian, I was diagnosed as IIIa, Pancoast Tumor. Three days before surgery they changed the entire protocol to implement somethng new, reported as an abstract presented in a conference, reporting on phase II clinical trials which were stopped at 12 months for immediate implementation. The journal article came out in Jan so the conference must have been in the late fall; I was diagnosed end of March/ beg of April 2000. If I had been diagnosed sooner I might not have had such a good outcome. Your dad is a wise man. I have been NED for almost 6 years (August). Good luck to you. and remember to keep putting one foot in front of the other. XOXOX MaryAnn
  7. I am so very very sorry to hear.... Thank you, Don, for keeping us current. XOXOX MaryAnn
  8. mhutch1366

    KatieB!!!!

    Happy Birthday, Katie-- If ever a soul deserved a wonderful day, it is you. Hugs all around... XOXOXOXOX MaryAnn
  9. Tom, I am 6 years out from removal of my Pancoast tumor, which leaves behind the Horner's syndrome (sweating on half the head and upper body, slight droop and inset to the eye, sluggish dialation of one eye) and I STILL SWEAT BY HALF only. No, I think it means that the damage the tumor in situ did is done, and you are going to sweat like that for a while at least. Some of my post surgical-rad-chemo symptoms have gone completely, and some have not, like the sweating. Don't get all in an uproar before you have your facts -- talk to the doctor. And remember -- it's wierd, but it's the new you! XOXOX MaryAnn
  10. Malou, Please accept my sincere condolences for your loss. XOXOXOX MaryAnn
  11. I kept mine for 5 years. I used to have good veins, but now I still have trouble with the iv catheter for lines, as for CT contrast. Not fun. The 'port really spoiled me. I'd get another one in a New York minute if I needed chemo again. XOXOXOX MaryAnn
  12. Teri, Love you, kiddo! Glad the Fentanyl is working. XOXOXOX MaryAnn
  13. I feel the premeds saved me from real discomfort. I know I had zofran for nausea in addition to the pills, plus lorazepam for anxiety and I think benadryl (?). Once after the first dose I told the oncologist about terrible pain in the ears, he prescribed ethyol, which made it much easier on my ears. I believe they also gave me 2L fluid IV before starting the cisplatin, that's why those days were so long. I was on a monday-monday sched. Monday I got cisplatin and VP16/etoposide, tues-fri VP 16 alone, Mon I got half dose cisplatin plus etoposide/VP 16. That was end of week1/beg week 2. I got next round on day 29 -- Monday. I only had a rough time at all in the morning after the first whammy -- I had to not gag brushing my teeth, then I was okay. Good luck to you. XOXOX MaryAnn
  14. The radiation oncology nurse gave me some sterile gel pads, like jello bandaids, that were to be stored in the refrigerator, and these cool moist gel pads laid over the burns brought tremendous relief. My burns (25 days) got pretty bad since I had been sleeping on a heating pad (a big no no) which caused the skin to break down some. That made it easier for the skin to burn. So I had to do the domesboro salt (sterile) soaks with sterile gauze after it became open, and then follow with the gel, leaving those on as long as they would stay. This too, passed. XOXOXOX MaryAnn
  15. mhutch1366

    Head garments

    They ARE seamless, made from either terry or velour stretchy like material. I loved mine for keeping my head warm in winter, and to wear at night to sleep, and since half my scalp sweated profusely (only half) I liked them in the summer. Good stuff. They have cute hats and scarves with bangs even, for those that are specially detail conscious. The TLC catalog I believe is the name of the catalog, and you can request one by calling the ACS 800 number. I passed mine on to someone else, after I was finished. I had my hair cut very short knowing it was going to come out, and then got a buzz cut when it did start coming out. Somehow I managed to avoid itchy scalp problems altogether. The softer the material, the better it feels on your head. After I got somewhat shaggy and disreputable I went with plain old bandanas. That worked for post-chemo. XOXOX MaryAnn
  16. Sherri, So sorry to hear things aren't looking good right now. Prayers for strength, for your family and especially your dad... XOXOXOX MaryAnn
  17. Hi Anna, Welcome. I'm glad you found us, makes one feel so much less alone. I was diagnosed IIIB at age 43 with a 4 year old and a 10 year old, and newly divorced. Yes, learning to live after, "the new normal", can be quite a feat. I have been NED for 6 years now after having a 13# tumor and one lobe of left lung removed, along with most of my chest wall on left side -- the tumor ate it. Now I have goretex. Where are you in MD? I am in Montgomery county, near I270/I370 and 495. PM me if you want to talk. Have faith -- you've made it through your treatments so far, looking good, so take baby steps... one at a time. XOXOXOX MaryAnn
  18. mhutch1366

    It is done.

    SuzieQ, I am very sorry for your loss. XOXOXOX MaryAnn
  19. Debbie, I am so sorry for your loss... XOXOX MaryAnn
  20. Kim, I am so very very sorry... XOXOXOX MaryAnn
  21. Please accept my sympathies for the loss of your dear mother. XOXOX MaryAnn
  22. Don and Lucie, Prayers for the next round of treatments, may they be good to you. Enjoy the graduation!! XOOXXOOX MaryAnn
  23. Don has it right. Given, you won't feel like eating, and things will taste funny for a long time, depending on the kind of chemo. But if you want to live, you have to eat. Small meals, frequently. Things that are easy to swallow. Frequently soft foods go down easier than liquids. Megace may help, so may the anti nausea medication Zofran (although it is expensive), also maybe Prilosec if reflux is a problem. But you have to want to live. I consulted with nutritionists in the hospital, who advised me about getting the most per mouthful -- putting olive oil on vegetables, sour cream and butter on baked potatoes, whatever I could add that would add caloric value, add it! Shakes (Scandia shakes were best) with ice cream added were real calorie boosters. Ensure or boost has come a long way, I bet the new flavors are better thn the old ones.
  24. mhutch1366

    Help

    Chloraseptic is good too, but it has phenol in it, which is actually carbolic acid, numbs the cough centers and whatever else. The mom's mouthwash has stuff in it that's supposed to help your mouth heal too. From my oncologist: I hope this helps. It helped me an AWFUL lot, because also on and off I had thrush, which made for really bad mouth sores. My oncologist prescribed this for me when I had difficulty eating post chemo and radiation: Directions: swish and spit about 1 spoonful (fifteen mls) every 30 minutes as needed, esp before eating. (you can swallow a little bit) Mouth rinse: 25 cc of liquid Benadryl, 25 mg/cc stock solution 25 cc of Maalox 25 cc of lidocaine, viscous, 2% solution 25 cc of nystatin liquid. ----------------------------------------- There is also a premix similar to the above available in the Wash DC area by prescription called Gel-claire, but the nurse had no firsthand knowledge of it. Warmest Regards, MaryAnn
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