gerbil runner Posted March 29, 2004 Share Posted March 29, 2004 Has anyone heard from Dan? I pm'd him a few days ago but didn't hear back. Dan, if you're lurking out there - hope all is well. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 30, 2004 Share Posted March 30, 2004 I’ve been lurking abed with a vicious cold and sleeping a lot to escape it. I need to have an axillary lymph node excised this week so that I can start on topotecan chemotherapy next week. My latest CT scan showed small , 1 and 2 cm growths on my adrenal glands. The lump under my arm was discovered by me and the onc wants it cut out by a surgeon , I suppose in order to prove that the new chemo is necessary? I could see no reason to cut it out, when a needle biopsy should serve, and argued with the surgeon ,as I was not prepared for general anesthesia and an ‘Operation”. I finally talked to the onc and got my marching orders and will have the node out, if the surgeon will forgive me for questioning the procedure. I’m tempted to ask if some of this material can be used to grow my cancer cells for testing against various chemicals. That should elicit an explanation of why nothing can be done with this in SCLC and that I am free to decline treatment any time. This admonition by my onc is sort of like the Doctors answering machine which advises me to call 911 if I’m unhappy with the service. You play by their rules or you’re out of the game, and life is cheap to people who deal with it as a business. I am expected to be a good chemotherapy user, and to use lots of drugs, which the onc sells for the bulk of his remuneration and not to fool around with avoiding chemotherapy. I’m free to seek a distant onc ,but he will be operating on the same sell chemo for profit mode. Next year Medicare is threatening to cut the profit margin on oncs selling chemo and that has caused dire predictions of oncologist getting out of the chemo business. I hope I’m here to observe it. Dan Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted March 30, 2004 Author Share Posted March 30, 2004 Hoo, boy, that's tough. There have been several posts on chemo-sensitivity testing. Seems like that's what you need. And some chicken soup . Let us know how your biopsy turns out. Dan, take care of yourself. Hmm, we send cyber-hugs...maybe I can send a cyber kick-in-the-pants to your onc. Some of these guys need to remember they are treating a patient, not just a disease. I would think insurance co.'s and Medicare would be jumping on the chemo-sensitivity test bandwagon. After all, why waste a round of chemo that won't work? It should be more cost-effective to get the right treatment the first time, or to let a patient know that treatment is unlikely to work. It's the crystal ball we all want. Quote Link to comment Share on other sites More sharing options...
Elaine Posted March 30, 2004 Share Posted March 30, 2004 Mr. Berry, Glad to hear from you, but sorry you aren't feelling well. After reading your post, I still have no idea why they have to remove the lymph node? Does the surgeon need the business, or what? I'll keep you in my thoughts for a swift surgical recovery. We worry about you when you've been missing, so let us know how you are doing from time to time, OK? Elaine Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted March 30, 2004 Share Posted March 30, 2004 Dan Glad you are still around Sorry to hear about the problems you are having. DR!! sometimes you want to wring their necks! Cindy Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 30, 2004 Share Posted March 30, 2004 Dear Dan, So Good to hear from you. It never seems to amaze me how everyone here worries about one another. FEEL THE LOVE! I want to suggest to you that we have a CARD CIRCLE CLUB, and we have a PHONE BUDDY CLUB. Our very own Rochelle (Ry) heads up the Phone Buddy Club, and what that is, is you can (PM) Private Message her and give her your phone number. This is in case we don't hear from you in a while, she would be able to give you a call. Also, I head up the Card Circle Club and again you can (PM) Private Message me your home address and those of us on the card list will send you (CHEERFUL) cards to brighten your day. Just more of a personal touch to it rather then the Internet. I wish you WELL Dan, I sure hope your cold is on the way out the window. Hope this new chemo works for you as well. Your in my thoughts and prayers. And one more thing, I HOPE YOUR HERE TO OBSERVE A LOT OF THINGS DAN!! (((((Dan))))))) Hugs, Connie Quote Link to comment Share on other sites More sharing options...
karen335 Posted March 30, 2004 Share Posted March 30, 2004 Mr. Berry, Sounds like you are getting the doctors in order to almost do what you want them to do. Stick to your guns. This is your body and you know how you feel and what is best for you at this time. If it's not broke (as Perot would say during his campaign) "Don't fix it"... LOL I hope all goes well for you and the surgery to remove the lump is beneign and just a bump... You are in my prayers each day. Blessings, Kare in So. California Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 31, 2004 Share Posted March 31, 2004 I called several of the labs listed by Greg Pawelski for test tube screening of chemotherapy against my cancer cells. Most did not answer or had busy signals. Rational Therapeutics Institute, Long Beach, CA. Robert A. Nagourney, MD Solid Tumors and Hematologics. 562-989-6455 answered my call and said they could send a sample package to transfer a tissue sample which I said would be available 4-1-04 when they chop out my lymph node. The person there said to check with my oncologist, since there is no use to determine the best chemistry to kill the tumor if the doctor will not use these data. I got a prompt response call from my onc. saying that this method was a waste of time and money because it did not work in humans the way it worked in test tubes. He would not follow the results of such testing but was well aware of method, which has been around for about ten years. Medicare will not pay the $2500 to run the test. I am always suspicious of underlying motivation for the way I am treated, but in this case it sounds like the testing method is not that great. I’m a cynic but it’s hard to believe that the medical community would not use a really good test method to select the chemotherapy protocol if it worked. Dan Quote Link to comment Share on other sites More sharing options...
ViVi Posted March 31, 2004 Share Posted March 31, 2004 Glad to hear from you, cuz! Just kidding! But I really do feel like we're related -- if not by blood, then by heart. Please continue to insist on what's right but remember that little niceties go a long way. You might try baking (or taking) them a cake or something- it works 'down here'. Seriously, please stay in touch and know that we are thinking about you. Your soul buddy, ViVi Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted March 31, 2004 Share Posted March 31, 2004 DBerry-- Feel better soon. XOXOX MaryAnn Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted April 6, 2004 Share Posted April 6, 2004 To continue this thread, On April 1 I had full court general anesthetic same day surgery to remove my enlarged lymph node. I have been dragging around a surgical drain vacuum bottle since then because there is no one available to remove it. My oncologist saw me long enough to say that the lump was SCLC and that I am now considered incurable. In my opinion a needle biopsy would have saved me a lot of discomfort and aggravation, but this oncologist likes to have surgeons do the “wet” work, and they don’t fool with needle biopsies . My surgeon, like all doctors, is too busy to see to my wound dressing on time. It is of no great importance, since I dare not start my topotecan with a draining hole in my arm pit and a two week old killer cold. Oddly enough I feel great except for a lack of vigor. I’m staying away from opiates and filling my time with sneezing and coughing and emptying tissue boxes. Having worked as a research scientist most of my life, I believe in statistics and probability and am not surprised that my SCLC is back. The odds of beating it at 72 are not very good, but I intend to keep trying to hold it back as long as it doesn’t hurt too much. Dan Quote Link to comment Share on other sites More sharing options...
gerbil runner Posted April 6, 2004 Author Share Posted April 6, 2004 Dan, I'm sorry your news is not real good. And your surgeon needs a hard slap upside the head. Being "too busy" doesn't cut it in my book. Then there's the slap for your onc. who wouldn't try a needle biopsy. MO is doing the topotecan right now, and her results are very good, from the sound of it. Hopefully you will also have a good response. Take care of yourself, and keep us updated. Quote Link to comment Share on other sites More sharing options...
Elaine Posted April 6, 2004 Share Posted April 6, 2004 Mr. Berry I was saddened to hear the node was positive and I am still appalled at the fact you had to have surgery for what seem to be no real reason. But nearly everything about the cancer "business" appalls me. The whole "cancer research" reminds me of a silly joke my grandfather told me when I was a little girl. A man walking down a dark street sees another man searching for something near a lightpost. He stops and asks if he can help. The man is looking for his wallet. They both search around to no avail. Finally the second man asks--"Are you sure this is where you dropped it?" " No, no," the other man says, "I didn't, but the light is much better here." Dan, I hope you get to feeling better soon. I keep you in my thoughts. Elaine Quote Link to comment Share on other sites More sharing options...
wenna Posted April 6, 2004 Share Posted April 6, 2004 Oh Dan, I'm so sorry you're going thru all this pain! You'll be in my thoughts and prayers and hope we can see you thru this! I'm also going in for a day surgery to remove whatever is growing on my upper lip. But, my onc really wanted me to do it instead of needle biopsy. He said I had enough scars already and I'd be alot more comfortable.. So I think I know how you feel somewhat. Like I said, I'll be praying!! Big Hugs, Marilyn Quote Link to comment Share on other sites More sharing options...
paddy Posted April 7, 2004 Share Posted April 7, 2004 Dear Dan, I am so sorry to hear of your latest troubles. I know what you mean about Oncologists who are "too busy". Dave's onc. was backing out of the room while answering our questions the other day! Next time he does it he is going to get a "flea in his ear"!Somehow, in the flurry of dealing with too many patients I suppose, they seem to have hardened their hearts. Oh and please don't let me start on Medical Insurance companies!!!! I did PM you some time ago, but perhaps it was lost in cyberspace! Please know that you are in my thoughts and prayers. Paddy Quote Link to comment Share on other sites More sharing options...
SharKats Posted April 8, 2004 Share Posted April 8, 2004 Dan, I would like to get in line to slap your surgeon and your onc. Geez, what arrogance and disregard for a patient's feelings and concerns. I mean it's only your life that's at stake. Arrrggghhhhh...... I haven't been here long but I've enjoyed reading all your posts. I am hoping and praying that you are feeling much better soon and that "someone" will remove the darn drain. I also hope you prove them wrong and are here years from now, still posting. (I also hope I'm here to read them You are in my prayers. Quote Link to comment Share on other sites More sharing options...
Nancy B Posted April 8, 2004 Share Posted April 8, 2004 Dan, Just want you to know that you are in my prayers - I wish your news was better but I know that you are a strong person and you will overcome this. Take care of yourself. Hugs, Nancy B Quote Link to comment Share on other sites More sharing options...
Debaroo Posted April 9, 2004 Share Posted April 9, 2004 Dan, I have been thinking about you, and was glad to see your post, though I am sorry that you have not been well-and as far as your doctors, I say we get a nice caravan going to your onc. office and "POW, right in the kissa!'" In the meantime, please take care of yourself and know that you have all of us pulling for you. Take care, Deb Quote Link to comment Share on other sites More sharing options...
IIIp0 Posted April 25, 2004 Share Posted April 25, 2004 So glad that you're up and about Dan~ and I really do appreciate how frustrating all of this is, to biopsy that node or not, and allof the rig-a-ma-row that goes along with the doctors orders. Its a tough nut to swallow. And from my vantage point as the caretaker, I am constantly reminded that our onc isn't out to "get us", and that he's doing the very best that he can, as are we..... It is tragic I think, really -- that not more is known, understood or more modernized and painless in the way of lung cancer. Each day with my husband as I watch him in pain even WITH his drugs, I feel a little more helpless and a little more angry that in this day and time, anyone should have to endure the pain that comes with lung cancer and the side affects. Thank you for acknowledging my share of earlier. I am praying for your best decision in all of this Mr. De-, and look forward to hearing from you as to how it all unfolded... Keep that chin up and keep the faith~ Hugs - Beth Husb. diagn 12/03 w/ extensive SCLC, mets to spine, bones and liver Taxol/Carbo x 12. Developed Neuropathy, severe pain and weakness in legs. Home in bed mostly since 04/12. Last treatment 3 weeks ago and yesterday [switched to CPT-11] on hold due to low blood platelets. Will try again next Friday. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 25, 2004 Share Posted April 25, 2004 Hi, Dan! Like everyone else, I am so sorry you are having to go through so much crap. You said your doc was "too busy", and someone said he needed a "slap upside the head", another suggested that we would all get together and "POW, right in the kissa!", and another offered your onc a "cyber kick-in-the-pants". My mom also had lung cancer and here's how she handled this situation: Her family doc was ALWAYS in a hurry. He had a bad habit of coming in, looking her over real fast and then taking off out the door saying he "would be back." Well, he would never come back. Instead, the nurse came in with prescriptions and instructions. One time, mom had just HAD IT. He said, "I'll be back" and took off out the door. She got up off the table with her hiney hanging out the back of the gown, walked down the hall, got his attention and said, "Get back in there - I'M NOT THROUGH WITH YOU YET!!!!" My mom was somethin' else!!! Prayers for you, Dan! Love, Peggy Quote Link to comment Share on other sites More sharing options...
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