mhutch1366

I like what Donna said. If we could access it here and download and print as needed, that would be optimal. Great idea, y'all.... This board is so much better than the other cancer board I was with... I am not certain it was ACS or not, but it was not as egalitarian as this site, and therefore not comfortable to many, not least myself. MaryAnn

Dear dear Lynne, Rough night. Sympathies. I hope your doctors can get the various symptoms sorted out and figure out what's going on with Dean, that alone will be much relief right there. Take care of your daughter, no need to have her any more upset over this than absolutely necessary. They don't talk about it alot, but it affects them down deep. My girls are now 8 and 14, so I know they don't talk. Prayers are with you for some answers soon. MaryAnn

Hi Doug, In response to your questions,: I still sleep on the side opposide the surgery, or else on my back. If I forget and sleep on the surgical side my arm goes numb. I still have a large area of numbness over the breast and under the arm. I think I'm stuck with it. I cope with pain daily -- I had a more extensive surgery, but I take 900 mg neurontin, 50 mg vioxx and 60 mg extended release morphine for the pain. I still feel the weather changing, too. It does work, I can live with medicated pain at a 2 or 3 on a scale of 0-10. I do what I have to do. I get short of breath -- some of it is from the radiation, some of it is that I smoked 27 years. The pulmonist said I had some obstruction and some restriction. When I'm well I can do okay, just not too many stairs, but if I get ill esp with a cold or other respiratory bug I get very winded fast. Then I use the inhaler, sometimes the nebulizer additionally, and if it is severe ( several times the first two yearst post surgery) I'll do the prednisone course, which helps the lungs enormously. The edema and the mood swings while tapering off this drug make me want to avoid it if at all possible. Good luck, and best wishes. You are in good company. MaryAnn

Hello 3times, and welcome, Neurontin is a funny drug. It can be extraordinarily effective, but one does need to get used to it, and find out how much one can tolerate. The side effects should subside in a few days, I had to work with the nurse also about how much to take and when. Sometimes I was told, one has to take the entire dose at night rather than split it during the day and night. I was prescribed 1800 mg per day, but could only tolerate 300 mg am and 600 mg pm. Work with it if you need it for the pain or whatever it was prescribed for, as it is effective, and the side effects will diminish with time on the proper dosage schedule. MaryAnn

DavidA, Prayers coming your way..... Have faith, and be strong. You are not alone. Hugs, MaryAnn

Cheryl and Jack -- A definite HOORAY!! moment. Break out the ice cream, and the horse treats. Enjoy..... XOXOX MaryAnn

Dear Christyand Darrell, Congratulations on the shrinkage!!! That chemo combo kicks @ss, if it can kill my tumor (13.5 x 9 x ? ) massing on removal 13#, it can take the spots off white linoleum and varish off the old chairs! Do just about anything!! if its the right kind of tumor.... I swear by the stuff, what it did for me was nothing short of a miracle. The surgeon and my -ex and many others had pretty much written me off for palliative care. The pancoast tumors, where they spread laterally but don't (at least mine didn't) metastasize I guess are good for this kind of chemo. Tumor shrank away from the edges, including the spine and many of the major nerves and blood vessels (all edges). It was actually nibbling on my spinal vertebrae, after eating a good part of five ribs as an aperatif. Anyway, I digress... Christy, you and Darrell are blessed.. Thank you for the public service announcement about clots. I had never quite considered the danger ( I didn't consider a lot of things at the time) although I remember being in pneumatic hose that "breathed" as well as super support hose. A friend lost his healthy 35 year old brother due to clots, from an overseas airline flight, so clots are no joke. I hope all goes well for you, enjoy this respite, may it last long..... Enjoy little Rink. When I separated from my ex, I had to leave my dogs behind ( big dogs, rental unit, etc). It was one of the hardest things I have ever had to do. I had had dogs since I was 7, and even now being "well" I can't take care of a dog, so I do indeed envy you your big eared friend. Well, I ramble. I digress. Sorry, it's my weekend without kids, and I have a friend who just lost her SIL to another form of this lousy disease. Anther memorial service. I HATE CANCER IN ALL ITS FORMS AND GUISES!!! Got that off my chest. MAY WE ALL LIVE LONG AND PROSPER!! MaryAnn

Hello Lynne, I had some funny "hard" spots on the edge of my tumor as it began to shrink -- I believe it turned out to be calcification, because my tumor "ate" portions of 5 ribs. No bone mets -- just disintegrated the ribs. Curious, that. Good luck and welcome to the boards. Lots of warmth and good advice from good people. Warmly, MaryAnn

Welcome 3Times, You are living a blessed life. As for your questions: Neurontin is okay, I take it for pain, nerve pain, and although the Dr. wanted me to take 900 mg twice a day I can only tolerate 300 am and 600 pm. It can take some getting used to, and should not be stopped abruptly. I found it disrupted my equilibrium a little, so I had to be careful if I had to get up at night to use the facilities. Apparently it is a pretty well known and widely used medication. Are you having some side effects that concern you? At the very beginning, I didn't wear a bra, but when I started to, they all fell down over my one shoulder ( I am missing a collarbone). I resorted to athletic bras that are very soft and have the T strap in the back, go on over the head with no fastenings... otherwise I kept feeling the one strap sliding down. I doubt this will work well if you are very full figured. May your good luck continue, you are apparently a very lucky lady. If I might ask, what stage was your diagnosis? as you apparently aren't following up with any chemo or radiation? I am just curious .... Warmly, and welcome, MaryAnn

Dear Chris-- HOORAY!! I am happy to hear good news like this. Rest, heal, enjoy being a family. MaryAnn

hi Berisa, From the Stedman's medical dictionary: Gout is a disorder of purine metabolism occurring especilly in men,..... characterized by a raised but variable blood uric acid level and severe recurent acute arthritis or sudden onset resulting from deposition of crystals of sodium urate in connective tissues and articular cartilage. Translated, it's very painful crstallization in the joints of something your kidneys should be taking care of. If your dad's kidneys are okay, make sure he is drinking enough water to flush himself out. That's especially important with chemo. I hope it is nothing dangerous, and that you can get it attended to so he is out of pain soon. MaryAnn

Wow. I am impressed and grateful, Andrea. Thank you. MaryAnn

Congratulations, Barbara, on your stabilization. Here goes.....If Barbara can do it, I can do it. I too, must confess.. I have been smoking 2-4 cigarettes a day since the spring after my surgery (quit 8 months). I got so depressed I didn't care, Barbara, if you can confess, I can confess, and risk Norme's tsk tsk. I know it's hard, and I'm going to have to deal with it the hard way, not in critical care for 3 weeks. I can face cancer, I can face this. The hard way. Thre is no easy way. Again, Barbara, Congratulations!! and enjoy life~~!!!!! Good luck, let's get quit and stay that way. "one is too many and a thousand isn't enough...". MaryAnn

Jay, Love the new photo. Gamma knife it is!! You will be in our prayers. Can't wait until your birthday, we'll disney magic artist you one heck of a birthday card, complete with goofy and donald to music. Tell me if you want to color it yourself?.. lol... You're a good guy, Jay. Take heart. Have Faith. XOXOXOXOX MaryAnn

Dear Sally, Welcome! Please do not be embarassed at what you do not yet know. Just ask, and if we don't know, we'll help you dig until we do. My heart goes out to your family to have such a young man stricken with this da^^ disease. The only good news about that is that younger folks are generally healthier otherwise and stronger than the "average" cancer victim, and that counts a lot toward better outcome. I sincerely hope your brother enjoys his trip. Keep us posted. You all will be in our prayers. Warmly,' MaryAnn

Hi Snowflake, I will echo Peg here: XOXOXOXOX MaryAnn

Weight -- Scandia shakes, mixed with 8 oz milk, give you 800 calories. make it with 12 oz instead and two scoops of ice cream, you have 1,000 calories..... and enough real shake to have a juice glass or so 4-5 times. Although NIH gave them to me, I have also seen them in grocery stores, near the healthsupplements like ensure and boost.... and they taste way better.... I remember eating when nothing tasted like anything. The mouthwash, and the support of family at mealtimes really helped. It does get better, lots better, but it takes a while. MaryAnn

Trish, IF you could please explain: If the invasive tumor turned out to be a mucus plug, then does she have cancer or no? if no, what is causing her pain? Just trying to paint a better picture in my head... Regards. MaryAnn

Trish, I am so glad your mom feels better. Methadone is an opiate analog. What else it does/doesn't do, I don't know. If it works, it works. If it doesn't, there's other things to try. I'm very happy for you and glad you are feeling so positive. You all are still in our prayers. MaryAnn

Dear Christy and Darrell, The cisplatin and vp-16 in combination with the radiation is what killed my huge tumor (in excess of 14 x 9 x 6 cm) and saved my life. When it works, it works very well. I wouldn't be surprised if the tumor is pretty ill and dying itself. If the smaller one is like the larger one, it too might be on the way out. God bless and good job for finding Darrell's clots. Anther one of those odd things that "happens" to cancer patients. Enjoy your terrific news about the shrinkage -- that is tremendous news!! Christy, perhaps now you can get a good night's sleep.... God bless and keep you both, MaryAnn

Trish, I am really really happy for you that your mom turned out to have mucus. Stranger than fiction, life is. Keep us in your prayers, and keep in touch. MaryAnn

Just got off the phone with the oncologists office: Mary's Magic Mouthwash: swish and spit every 30 minutes as needed for pain, esp before eating. liquid benadryl 25cc maalox 25 cc 2% viscous lidocaine 25cc nystatin 25cc This is available by prescription, your pharmacist canmake it up. I sent it to my friend in Ireland (the recipe) and it fixed her eating/mouth throat soreness post radiation and chemo pretty well, at least so as she could eat. The oncological nurse mentioned that there is a new available medication (by prescription) called Gel-claire, which is (she thinks) a premix similar to the above. This is in the US, in particular, outside Wash DC in Md. I hope your dad has an easier time of it, and soon. He'll eat more when he feels better. Also, chemo, esp with metals like platinum in them, makes things taste awfully wierd for quite a while. So food just doesn't taste like... food.... I hope this helps. MaryAnn

Swallowing, radiation, and stomach acid. I sympathize with the difficulties. Not fun. There was something the doctors prescribed for me they called magic mouthwash, which had some peptobismol, some lidocaine, some benadryl, and a topical antibiotic, I don't remember exactly how it goes but I can get it again with a phone call to the oncologist if necessary. The doctor called for a sip (5 ccs) every 30 minutes or as needed. It took care of the swollen, painful throat, some swelling, the mouth ulcers. I also took zantac regularly ( every morning) for stomach acid. Frequently the esophagus doesn't "close off" well after radiation, and one gets a lot of reflux esophagitis. I like the point made about liquids being hard to swallow, compared with soft food. I had a hard time with that for quite a while after radiation, ie it gets better gradually. One thing about radiation: it keeps on giving and giving and giving. Tell your dad this too shall pass. Maybe sucking ice chips or popsicles would work better keeping him hydrated. Warmly, MaryAnn

Becky, GOOD NEWS INDEED~~~!!!! HOORAY!!!!! Glad things are looking so well.... God bless and keep you and your family. This is indeed a good day... Warmly, MaryAnn

Oh, Dear RAY!!!!!!!!!!!!!!!!!!!! WOW WOW WOW WOW WOW WOW WOW WOW WOW CONGRATULATIONS!!!!!!!!!!!!!!!!!! God Bless and keep you and your family..... This is indeed a good day. Warmly, MaryAnn