mhutch1366

Dear dear BB, Believe in the radiation, and keep your chin up. Take in some fresh air and sunshine. Use positive visualization during radiation... imagine the cancerous cells drying up and blowing away like so much ash.... just flaking away...... And remember, while you look around and appreciate your small blessings, that THE FAT LADY HASN'T SUNG YET, so IT ISN'T ANYWHERE NEAR OVER!!!!! Every day is a miracle if you believe.... MaryAnn

Congratulations!! Just a word -- It's a good thing to be up and moving even a little, and to do passive arm and shoulder exercises.... One thing I wish I had known about was that it's beneficial to lean over parallel to the floor, and rest your head on the back of a chair or something, and let the arm gently swing from the shoulder, in small circles if you can. Makes the rehab so much faster! Terrific news.... MaryAnn

I had been taking an antinausea med, I can't remember the name, except it began with a Z... also took antidepressants/anti anxietymeds -- prozac and atavan (lorazepam), the latter is also an antinausea med. I took some kind of white liquid which is a hormone? of some kind, for appetite stimulation that was pretty effective and without side effects. Watch the constipation from the codeine, I got into big trouble with the morphine, it makes the bowels sluggish. Add fiber supplements, and if she has real trouble, talk to the doctor about alternative pain meds. I wound up with a colonostomy when my bowels collapsed and perforated. Not to get you upset, just to let you know, this is not uncommon among cancer patients, I have met others who also had ostomys. I hope your mom is also drinking lots of water, and taking the fiber thing seriously. Prayers that she can go with her sisters and enjoy her family. MaryAnn

Congratulations!!!! This is a good thing. Enjoy, and feel positive!! MaryAnn

I remember I lived in sweats, the heavy ones with fuzzy insides. I was always cold. Did the long underwear thing, too. Lots of big fluffy socks. Fuzzy slippers. Boots over the ankles. Loved wearing hats. It doesn't get THAT cold in Maryland, but I sure froze for that winter. I was putting it down to being fatigued and the weight loss. Holding a cup of warm tea helps, you don't have to drink it. I slept in the sweats and heavy socks, too, and (being female) those terry turbans you see. They kept my ears warm!! Good luck fighting the cold... This too shall pass.... MaryAnn

Susan, I can only echo here: Ask your mom what she wants to do. In her heart she knows how much more she can take. There is absolutely NO good reason she should suffer pain. May God hold you both in the palm of His hand, and bathe you with love... Prayers and blessings, MaryAnn

Denise, I did the same thing with my hair. I had it clipped rather short when I knew it would start to fall out, and then when it started to come out, I had a buzz cut. Hated seeing hair all over. I found I really enjoyed the terrycloth or velour terry turbans, especially in the winter. Kept my head warm at night. I hope you all have a blast at the wedding. Let her enjoy herself, and let her tell you when she wants to go home. Weddings and the like are especially rich times to count ones blessings and reflect.... Prayers are with you and your mom, MaryAnn

I was told, pending and post surgery, that routine heart surgery patients (even the least invasive types) could go into a depression for up to a year, as a consequence of the surgery. My surgery was gloriously successful, and yet I experienced a profound depression for 15 months post-surgery. I used to sit in the bath everymorning and cry for an hour. And this was after they told me the tumor was 99.9% dead on removal. This was in spite of professional counseling and medication, plus the pain meds I'll be taking forever. I suspect your mom is going through much the same thing. Please ask about professional help for her, and consider it for yourself as well. It's lousy being around depressed people. Logic does not rule here. I am convinced the deep depression I experienced was organic. You and your mom remain in my prayers, MaryAnn

PS I forgot to add that not only did the tumor shrink pre surgery, that when they removed it (whole) the darn thing was DEAD. The double chemo/radiation simultaneously knocked the cra* out of the tumor. Miracles do happen, every day!! Good luck to you and your dad. He's relatively "young" too, in this scheme of things. MaryAnn Sorry I keep remembering things I should add... this is IT!..

Dear Joe, I should also remark I was stage III almost b, if that makes any sense. The tumor was that close to my spine. I had involvement of my upper left lobe only, besides the massive invasion of my chest wall and neck. I was afraid to look at the statistics, I didn't want to know. I knew I was a statistic of 100 or 0, so I wasn't going to pay that any mind. I couldn't ask how big the tumor was for over a year, or do the research on the prognosis, or on the clinical trials which only had results to 12 months. I took one step at a time, literally, from one treatment to the next, from one appointment to the next, from one physical therapy appointment to the next. Took lots of naps, said a lot of prayers, read a lot of books. Wept some too. Sometimes just hung on by my teeth. But I hung on. I didn't give up. I couldn't give up -- that wasn't in the program. Keep fighting until you find a doctor who says, sure, we can do that!!!! When I got to 1 year, and looked around, saw I was still here, and thought, well, now what?.... I guess now I can go get that dental work done, and get new glasses.... and think about tomorrow. Good luck to you, Joe, and keep looking... you'll find a doctor you can work with. I know this. They are out there. Just keep trying. Love and prayers, MaryAnn

Joe, I was diagnosed in april '00 with a pancoast tumor of the left upper lobe measuring 14 x 9 x 5 cm, with involvement of the nerves/vessels near the heart, it had consumed 5 ribs and was encroaching on my spine. It had extended up my neck on the left side almost to my earlobe. It had become a palpable mass on top of my left shoulder. I received concurrent radiation (25 x = 5k rad maximum, total) with cisplatin/vp-16, followed by a 7 week hiatus awaiting surgery. I had two primary thoracic surgeons and a neurosurgeon. They had to go in from the front and dissect away the major nerves and blood vessels (that's where I lost my collarbone) where he literally held my heart in his hand, and THEN go in from the back and pull out the tumor, intact, which weighed 13 1/2 pounds. The surgery took over 14 hours. They had to rebuild my chest wall. Follow up was two more 6day rounds of chemo a month apart. Last month I received an "all clear" on my 3 year post surgical ct/mri scans. I have some trouble breathing, both obstructive and restrictive pulmonary disease, from the radiation and the remodelling of the chest wall. However, I am not on oxygen, and I can do a brisk 2 mph when I put my mind to it, and carry my own groceries in from the car. I can camp with my kids, and I can ferry them back and forth to activities and be an active supporter there. Also work full time, and live independently, if you don't check the corners with a white glove. Be proactive -- find a surgeon who will do it. If I hadn't had surgery at NIH, my private thoracic surgeon would have been willing to give it a go. He had been suggesting the chemo and radiation and surgery as a package, whle NIH was just suggesting palliative tumor removal. Then the radiation oncologist found a phase ii protocol that was ready for immediate implementation, and they recognized this would soon be the common treatment for this tumor type -- it was apancoast, which I think refers more to the way the tumor grows than to the type, which was nsclc. HOWEVER I am here, to shout about it, and can recommend.--- don't stop looking for someone who is willing to go for the surgery, if that's what you want. Persistence pays. Be a vocal advocate on yourown behalf -- proactive. Write things down in a journal, or have someone keep one for you. Explore all your options, talk to all the doctors at the major cancer centers. Chances are someone would be able to point you in a positive direction if they can't help there. Go for it!! God bless you, and know you are not alone.... You're in our prayers. MaryAnn

This can't be Phase I; Phase I is for toxicity. Nobody has truly died laughing, or from an overdose of Haagen-Daz that I know of. This should be a phase II with large number recruitment. Multi-center, open enrollment. Not sure about the placebo arm. May be deemed unnecessary, and subject to compassionate exclusion. Sounds like a good idea.

This sounds a lot like what I was on. I was diagnosed in late March/early April 2000. The clinical protocol I was put on, literally days before palliative surgery, was from a phase II clinical trial that was stopped at 12 months for immediate implementation. I was the first to be treated at NIH under this treatment regimen, and at that time the surgeons believed this was going to become standard treatment. I had a large (9 x 14 cm plus) pancoast tumor of the upper left lobe and into my shoulder region, up into my neck. The blood vessels had regrown to allow blood flow through the right side of my brain, bypassing the tumor. The tumor subsumed five ribs and was encroaching on my spine. During surgery I lost my collarbone, which had been radiated. I had a new chest wall built out of Goretex. Although initially I lost use of my left arm, I regained most of the function back, with some restriction of motion above and behind. Neuropathy was truly minimal. Although I wll be taking pain medication for the rest of my life, I know through God's grace I truly beat the odds. Some might have thought the radiation/chemo plus surgery was overkill, but better preventive than the alternative. Anyway, when I was treated three years ago, they didn't have long term statistics on this procedure. I was afraid to look them up. telling myself I was a statistic of 100 per cent, group of one. Never mind what happened to other people, I was going to worry about getting myself through this, one step at a time. Bottom line, this is an effective therapy for tumors that will be responsive to cisplatin and vp-16. My surgeons didn't tell me which nsclc I had, as they said it would not alter my treatment options. I thank God the pancoast tumor I had spread or crept, but did not metastasize. In that I was indeed fortunate. Again, if you have questions, ASK ASK ASK. There are always things the doctors won't think to volunteer if you don't jog their memories. Do your own research, and be proactive in your own treatment. God bless you all. MaryAnn

I had exquisite ear pain from the cisplatin and vp-16 on the first round of chemo, and my oncologist recommended ethyol (amifosdine) to protect my ears/hearing, as it was originally designated to provide some protection to the kidneys during chemo. I had a wonderful experience with ethyol, my hearing loss was minimized (hearing loss is a sizeable risk with cisplatin, I am told), the ear pain was reduced and eventually subsided to mere chronic tinnitis. From what I am reading here, the protective effects are not restricted to kidneys and ears. If I hadn't asked the oncologist, I don't know he would have thought to offer me the option. ASK QUESTIONS!!! Be proactive in your own treatment. You are a partner in your treatments, a part of the team. I believe that ethyol prevented me from having to wear a hearing aid after recovery. Ask your oncologist. Ask, Ask, Ask. MaryAnn Thankful to be here.

Diane, Hang in there, and find a surgeon who BELIEVES in what he is doing. I had a procedure of chemo+rad prior to surgery that was pulled from an ABSTRACT of a meeting. This protocol was a Phase II clinical trial that closed at 12 months for immediate implementation because it was so effective. Literally, three days before "palliative" surgery for an enormous pancoast tumor, the surgeon called me into his office at NIH and offered me this other option. (I work at NIH, so I had the fortune to be able to talk directly to doctors here through my boss who was also an MD). I took the other option, the tumor started to shrink, when my lower left lobe and the accompanying mass was removed, it was found to be nonresectable = DEAD, and then two more chemo (cisplatin/vp16). My surgery was 14 hours, involved two thoracic and a neuro surgeon, pus the residents etc etc etc, and the final mass removed was over 13 #. My prognosis at best was grim. Here I am 3 years out with a clean bill of health from my last set of scans. Be PROACTIVE and find a doctor you believe in. Doctors who are more worried about their statistics are not the ones who are going to believe in your ability to get well.... Miracles happen. MaryAnn

Hi, I am a 47 year old woman, mother of two, who three years ago last month had a pancoast tumor a little over 13 pounds removed from my thoracic cavity after radiation and chemo -- cisplatin/vp16. I had my surgery at NIH, chemo locally (Rockville) I lost my collarbone, half a lung, five ribs, and a good deal of weight. BUT I am here, and I have survived what was a grim prognosis. There is hope in strange places, all.