Addie Posted May 13, 2004 Share Posted May 13, 2004 First of all, some of the encouragement today came from many of you! Just hearing your stories, knowing there is hope and rather long term survival...helps! Then...I saw the oncologist today. Between tomorrow and May 21st, I will have a bone marrow test, bone scan, MRI of the brain and CAT scan of the stomach, liver, adrenals, etc. I return to see the oncologist on 5/24 and as he should have all the results by then, I presume radiation and chemo will begin that week. I really liked the doctor and his staff. He seemed a little surprised that I had so much information already and some good questions, but I told him I felt it was my responsibility to understand as much as I could about my own health....so that we could form a better partnership in treating me! He is pretty convinced (despite not having the above mentioned tests yet) that I am limited stage and even said that what is there in my lung is "sort of a nothing". That might sound odd out of context, but I think he was trying to say that it's quite small and not clearly defined. It's only 1.5 cms and the radiologist referred to it as a "slight patchy density...of questionable significance". But since the lymph nodes in the mediastinum tested positive for sclc, they now think that patchy area is prob. what started all this. I have to believe that at 1.5 cms, it's not been there for very long. And...the most positive thing that happened today, is that I got it straight from the doctor's mouth...."This is curable!!" I actually had to ask him to repeat it.....but relief in that room, from my hubby and me, was palpable!! I don't know all there is to know yet about sclc, obviously. And I'm aware that a lot of the web stats could be outdated. But what you tend to hear about this form of cancer is NOT generally very hopeful for a cure. Remission, yes. Perhaps more than one remission. But I've yet to run across anything that told me anyone has been cured of sclc. I'm sure some have been and will be....and of course the doctor said there are no guarantees.....but the fact is, I wasn't even sure if an actual cure....beating sclc....was possible! Now I know that it is....and I've got it on pretty good authority, from my onc doc! So....again, this has been a positive day for me. I feel like things are underway and I can focus on feeling like I'm doing something proactive. Getting tests done that will provide more information and allow the best assault on this "unwelcome guest". For all of you...I wish a positive day....LOTS of positive days and always, reason to hope. I know I'll still have my own moments of fear in all this....but I truly believe that laughter and a positive attitude are "medicines" that science cannot measure....yet they are powerful...very powerful. Again, thanks to all for sharing, as it truly kicked off this day for me. I hope that sharing my positive experiences, in turn provides something good for others who need it! Quote Link to comment Share on other sites More sharing options...
Snowflake Posted May 13, 2004 Share Posted May 13, 2004 Addie, your attitude is refreshing! Please stop in when you are having bad days, too. No one will think ill of you if you "wallow" while faltering. We'll give ya the coddling you need and then boot yer fanny back up on the road! There will be rough patches, I can pretty much guarantee it. My hardest battles are needles and the mental fight. I'd swear I was crazy if the voices in my head would shut up and let me really think about it! Battle plan is in place - one warning. A sometimes side effect of that crap you have to drink for an abdominal CT is diarrhea - for up to three days. Have Immodium on hand, just in case. It hit me just as I made it in the door and I live ten minutes from the hospital. Some people are not so lucky, having the misfortune of being "caught" in elevators, etc. Doesn't happen to everyone, but I don't recall being warned about it.... What a crappy situation that coulda been! Take care, and keep on smilin'! Becky Quote Link to comment Share on other sites More sharing options...
MO_Sugar Posted May 13, 2004 Share Posted May 13, 2004 Wonderful news and a great way to start the day! Hope all testing comes out clean and they are able to treat (and beat) this beast! God Bless, MO Quote Link to comment Share on other sites More sharing options...
BJ Posted May 13, 2004 Share Posted May 13, 2004 Hi Addie, A positive attitude is a necessity to battle the beast and it sounds like you have it! Good luck to you on all the test you have coming up. Please keep us posted on the results. BJ Quote Link to comment Share on other sites More sharing options...
J.C. Posted May 13, 2004 Share Posted May 13, 2004 Addie, Good luck with all the test, Good wishes on them and good vibes also. J.C. Quote Link to comment Share on other sites More sharing options...
Guest esstwobee Posted May 13, 2004 Share Posted May 13, 2004 I am so pleased my dear Addie has found all of you to share with, learn from and lean on! And though she has gathered her support team, and has an incredibly positive attitude, there is nothing more special than those who truly know and understand...bless you today and always! Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted May 13, 2004 Share Posted May 13, 2004 Addie, Way to go! I am impressed, and I'm sure your onc was too. Won't take no for an answer. Bravo, Addie, bravo! XOXOX MaryAnn Prayers, always Quote Link to comment Share on other sites More sharing options...
Addie Posted May 13, 2004 Author Share Posted May 13, 2004 Got past the bone marrow test today! Not too bad....more pressure than pain. Doc said he got a good sample of bone.....and apparently doing the marrow and bone biopsy IS standard for my oncologist. Got a break until Monday...when I go for the bone scan. Quote Link to comment Share on other sites More sharing options...
bengel Posted May 13, 2004 Share Posted May 13, 2004 Hi Addie, I'm glad to hear such a positive tone to your post. I have found that a positive attitude and good relationship with your doctors is the best way to stay on top of all your assignments as I call them (retired high school drafting teacher of 37 years). I remember when I was scheduled to have my first ct exam. I had to drink that yucky stuff the night before and then another bottle the morning of the exam. I did as assigned but when I got to the hosptal the tech said if you want to do your bone scan after the ct scan he would check with the bone scan tech. The bone scan tech said sure but you have to drink a quart of water for me. It was as hard to drink the water as the yucky stuff. We both laughed because I was so full after laying on the bone scan table for an hour that the next place I had to go was the bathroom. Praying for positive information on your journey. Bud Quote Link to comment Share on other sites More sharing options...
SharKats Posted May 14, 2004 Share Posted May 14, 2004 Hi Addie, Wishing you the best - good luck with the test. Hey, that rhymed - didn't mean for it to but I guess I'm a can't help myself poet. Seriously, you certainly have a good, positive attitude - that will really help you. Quote Link to comment Share on other sites More sharing options...
JonathanS Posted May 15, 2004 Share Posted May 15, 2004 Hi Addie, This sounds wonderful! Currently, the two most aggressive ways to treat sclc in a conventional manner are chemo using cpt-11 and cisplatin...some oncologists are using the old cisplain or carbopltin with vp-16, but studies have shown that cpt-11 and cisplatin have better long term remissions and survival/cure rates. ALSO- as far as cure goes or even long term remission, there have been a number of studies world wide that have shown twice daily radiation to be better than the traditional once dailt- so do the research on these two. I go to www.google.com and type in what I am looking for. You can put in "small cell lung cancer twice daily radiation" and see what comes up. talk to your oncologist about this and make sure he's up to date as well. However your case is more rare in that it is limited stage and small in size- so if I were you I would look into surgery removing that lobe. Do what you feel is best and act fast...sclc can grow and spread in days... your gonna be ok...let us know what happens! Jonathan (In school, 1 year away from becoming an oncology nurse). Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted May 15, 2004 Share Posted May 15, 2004 From what I have read (and experienced) Jonathon is right. Glad you are soooo positive and you have every right to be. Catching this sclc in the very early stages is encouraging! Cindy Quote Link to comment Share on other sites More sharing options...
BeckyCW Posted May 16, 2004 Share Posted May 16, 2004 Addie, What a great message and update -- Way to go!!! If you haven't seen him yet, take a look at my crazy brother DavidC, who was diagnosed with SCLC in 3/2003. Does he look sick to you? (well, don't answer that - ha!) Anyway, you're in my prayers. Keep the faith!!! BeckyCW Quote Link to comment Share on other sites More sharing options...
Guest bean_si (Not Active) Posted May 16, 2004 Share Posted May 16, 2004 Curable - what a wonderful word that is! Prayers that all your scans turn out clean. Cat Quote Link to comment Share on other sites More sharing options...
Addie Posted May 19, 2004 Author Share Posted May 19, 2004 Just checking back in to say that yesterday, I got the good word on the bone marrow/bone biopsy......CLEAN! Today or tomorrow, we should have the bone scan results and I had the brain MRI this morning....after getting totally loopy on 5 mgs. of valium!! Pre-test anxieties.....but as it turned out, the MRI wasn't that bad at all. Just loud. Friday is the last test....the abdominal CT scan. What's really made this a bad week is that my female mutt has been at the vets for two days....dehydrated, sick and with elevated liver enzymes. She's much improved today and is coming home! Will need more liver tests later to make sure the #'s have come down. Monday I see the oncologist again and meet with radiation oncology for the first time. Hoping the tests continue to come in as clean or negative....and otherwise, I got myself a "transitional" haircut last Friday so that I won't have foot long tufts of hair diving off my head into my Cheerios in the coming weeks! Still hanging in there with a very positive attitude....and hoping everyone else is having a good day, an upbeat day, a day with hope and many smiles! Quote Link to comment Share on other sites More sharing options...
SharKats Posted May 19, 2004 Share Posted May 19, 2004 Addie, Congratulations - that's wonderful news. (I know what you mean about test anxities, believe me. I also hope your dogger makes a full recovery - I mean you can't both be sick at the same time! Keep us posted. Sending positive thoughts your way........ Quote Link to comment Share on other sites More sharing options...
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