Sam'swifeShirley Posted June 3, 2003 Share Posted June 3, 2003 OK, I promise that I will never post on the good news forum again. I knew I was going to jinx myself. I got the call today and I was right, the right supraclavicular node is hot and very probably a reoccurrence of the SCLC. HOWEVER, it is the only hot spot on the whole PET. My Onc wants to get a full CT-guided FNA next week. I don't know why, you can feel the damn thing right under the skin. Anyway, the final plan will await the biopsy results. Assuming that it is the SCLC, he says he would probably recommend local radiation and more chemo. He says, and I knew already, that no studies show that either excision or local radiation would make any difference in survival but he is willing to think outside the box. If he weren't, I'd be shopping for a new doc already. I wish I didn't have to wait another week but it does give me one more week to prepare myself for battle I guess. Quote Link to comment Share on other sites More sharing options...
AdaW Posted June 3, 2003 Share Posted June 3, 2003 Dear Sam, I am so sorry this happened to you. As with everything, there's good news for you along with the bad. It seems like you caught this very early and that you are on top of everything. I am praying for you Sam. Thinking of you, Ada Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 3, 2003 Share Posted June 3, 2003 Sam, So sorry that the news turned out to be exactly what you expected. I am praying that this be a small hurdle for you to overcome in this monstrous battle. Blessings to you, Peg Quote Link to comment Share on other sites More sharing options...
Guest Jonathan Posted June 3, 2003 Share Posted June 3, 2003 Sam, I think that no matter what if that tumor and node is removable, DO IT! You find someone to take it out, than do the radiotherpay and chemotherapy. I think that in the scheme of things that if you remove it first, you will have more cell kill produced from the chemotherapy, and a much higher chance of a second and good remission. The reason is because I think that this way there will much less cells to kill, and hence for that reason alone it more unlikely that any cancer cells that remain will or can become resistant to chemotherapy. This to my thinking is simply becase they will virtually all wiped out within the first 2-3 cycles of chemotherapy. I am not too sure on using the same regimen. I have heard that it is a bad idea, even if the patient has had a good initial response, or in this case a remission. Most likely, you were never in total remission, somewhere in there there was a cancer cell that got away, and hence was able to resist the cisplatin and CPT-11, regimen. When that cell or group of cells has begun to proliferate and divide, causing this new tumor, that means that the overwhelming odds are that the new tumor too, will have some level of resistance to those drugs again. So if on anything that would be what I would get a second opinion on. (You probably will not need your records for an oncologist to tell you whether doing the same regimen is appropriate or not) I think that it is a much safer and better plan to use a different regimen of drugs, for the reason that I have described above as well as the reason that if there are any other tumor cells in the body that have not yet made themselves into tumors (called microscopic spread), they too will be conquered by this new and foregin set of drugs before they have a chance to rear they're ugly little heads somewhere. I would also not wait more than a week before beginning whatever form of treatment you choose. SCLC tumors have been known to double in size within 1 months time. The other opton you could consider is allowing them to shrink the tumor and the node with radiation, then removing them both follwed by 5-6 cycles of aggressive chemotherapy. This will also give you a real great chance of a remission. Think logically and carefully as I am sure you are. The steps you take now are going to make a difference. Get opinions, and as you say, think out of the box, you are not the average patient, and you do not want to be either- why? beacuse you want to beat it for good, and I believe you have a great chance of doing just that Sam! You hang in there and investigate all the options. Whatever you choose to do, please do have that whole using the same regimen thing checked out with a few other oncologists, as I will present the case to a few myself. I will get back to you soon. Meanwhile, you tell that tumor that it's days are numbered. Sincerely, Jonathan Quote Link to comment Share on other sites More sharing options...
lynn Posted June 3, 2003 Share Posted June 3, 2003 Oh Sam, I was praying that you were mistaken. This is probably an ignorant question but, why can't the node be excised (like tomorrow) and biopsied at the same time (is it a very invasive proceedure?) and chemo restarted before the end of the week? To radiate it seems like it might take a while. I continue to hold you and your family in my prayers. Lynn Quote Link to comment Share on other sites More sharing options...
bart ziggie ( Greg ) Posted June 3, 2003 Share Posted June 3, 2003 Sam, i too am sorry the news turned out as you expected. I think you summed it up in your last sentence my friend about preparing for the battle. That is exactly what i know you will do. Sam as i said you are an inspiration to many of us here and you are a tremendous wealth of knowledge to pass on. Keep us posted and i will be praying hard for you. Greg Quote Link to comment Share on other sites More sharing options...
Sam'swifeShirley Posted June 3, 2003 Author Share Posted June 3, 2003 Thanks everybody. Getting someone to remove it might not be easy. No good doc, myself included, will do a procedure, even a low risk one, on a patient if they truly believe that it will do the patient no good, or that a lower risk prodedure (like a needle biopsy) will do as much good. That doesn't even consider things like insurance company prior approval and scheduling. I think I'll be OK. Another thing, I think that I have an atypical SCLC or a very good immune system or maybe both. I know that my tumor was there in my chest for at least 5 months, maybe up to 9 months before we finally got the right diagnosis. Yet it was still limited stage with only the primary tumor and one intrathoracic node involved. Now we still have only one node to deal with, for right now at least. I AM NOT DEFEATED! Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 3, 2003 Share Posted June 3, 2003 Darn, darn, darn. Why did you look at that scan anyway??? You know fingers are crossed and prayers flying out the door!! Does anyone have any "numbers" on people with sclc where it doesn't come back?? Quote Link to comment Share on other sites More sharing options...
SandyS Posted June 3, 2003 Share Posted June 3, 2003 Sam - You can still kick some butt on this thing! I have to say that Jonathan's explanation of why using the same drugs again might not be the right choice made some sense. You doc doesn't seem like the type who would be offended by a second opinion....maybe you should check that out. (((((((((((((((((SAM))))))))))))))))) Hang in there, SandyS Quote Link to comment Share on other sites More sharing options...
Ann Posted June 3, 2003 Share Posted June 3, 2003 So sorry that your fears were confirmed to be factual! Keep the faith and know in your heart that you can and will defeat this monster!! Dennis's oncologist always stressed how very important visualization is in the fight to heal your body. We actually were able to visualize what the cancer might look like . I used to think of the chemo as a "pac-man" type of treatment that was actually eating away at the cancer. Almost everyy day before treatment, Dennis would watch the famous scene from Patton (his favorite movie) and get himself all hyped up to fight!!! Although this didn't work for him in the long run, I do believe it helped to buy him a lot of good time. If you remember his sclc was already very extensive when discovered (lungs, liver and spine) and yet he managed to have many good days between Feb. and December. You're in great shape and have been giving this monster one heck-of-a-fight!!! Keep it up and do whatever, whenever to keep on top of this. Like everyone has already said, you are truly an inspiration to all of us. There are so many of us that receive so much strength and wisdom from you. I am praying for you daily. Keep us posted!!! Oh, by the way ....how was fishing last weekend? Quote Link to comment Share on other sites More sharing options...
Laurie Posted June 4, 2003 Share Posted June 4, 2003 Sam, So sorry to hear your news.. Your a great doctor.. Many have gotten into remission over and over again. Thank God for early detection!!! Hang in there, Of course your not defeated!!! Laurie Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted June 4, 2003 Share Posted June 4, 2003 Hi Sam, i'm sorry to hear the results you got, but you're gonna beat this thing - i have no doubt. i do remember reading recently that they use different drugs for chemo the second time around, that seemed to be the thinking. also, you're saying you had the tumor for quite some time and it was still staged as limited seems to point to the fact that you're physically strong. perhaps a second opinion would be good. You have done so much for our spirit here. Please know my prayers are with you. Joanie Quote Link to comment Share on other sites More sharing options...
Connie B Posted June 4, 2003 Share Posted June 4, 2003 Oh Sam, I was so hoping that your news would be better then what you learned. No more Good News Forum for you my friend, BACK TO SCLC FORUM you GO!!! just kidding!!! I am sorry to hear this news BUT, It's NOT OVER TILL IT'S OVER and you have a LOT of LIVING TO DO MY FRIEND!! I'm also sorry you have to WAIT another week!! Sometimes I wish there was a way to SLEEP through the waiting process. NO CAN DO!! God Bless and I too will continue to keep you in my prayers. YOUR RIGHT, YOUR NOT DEFEATED!!! Not By a LONNNNG SHOT!!! Call out the road crew, there's a bump in the road!! Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
Guest bessb Posted June 4, 2003 Share Posted June 4, 2003 Sam That sucks big time but the fat lady hasn't sung yet. This horrible disease has so many ups and downs, I hate it, hate it! Prayers going out for you to beat it again. You did it once, who says you can't do it again? Bess B Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 4, 2003 Share Posted June 4, 2003 Well Sam - Dog gone it....why DID you have to pass Radiology anyway??? I'm sorry to hear you have to do "battle" with this beast again...but you caught it early and you are right....The fact that it was still limited stage when you were diagnosed is a miracle in itself! One of Mike's doctor's here at CTCA told Mike he has atypical SCLC too...He said, although your small cell has been very receptive to treatment (as most are), Mike's has been very slow changing or growing (as most are NOT). Dr King said Mike as the best of both! Keep on hanging on Sam....it's not yet over! Hugs, Quote Link to comment Share on other sites More sharing options...
AnneBurris Posted June 4, 2003 Share Posted June 4, 2003 Dear Sam, Keep the positive attitude, it's your best tool against fighting cancer (in addition to prayer). I know a lady (she's a phone buddy from ALCASE) and she has been in remission from a second recurrence for over 7 years, her name is Barbara Mayfield. Also Richard Bloch (co-founder of H&R Bloch) also is an inspiring story (he's been in remission from lung cancer since 1978) and has 3 free books about fighting cancer that you can get by going to his foundation's website. Since you've been fighting the fight for over a year now, I wouldn't be surprised if you had already heard of these stories or resources. But just thought I would mention them since they are stories that bring a lot of hope and inspiration. My prayers are with you Sam. I know that you are very knowledgable about your disease, especially being a doctor yourself - here is a bible verse that may bring encouragement - Proverbs 3:5-6 "Trust in the Lord with all thine heart; and lean not unto thine own understanding. In all thy ways acknowledge him and he shall direct thy paths." God Bless you and all of us. Anne Quote Link to comment Share on other sites More sharing options...
Deanna M. Posted June 4, 2003 Share Posted June 4, 2003 Sam, I am sorry you were right. I know you can beat this thing, you are strong!!!!! You can kick this thing right on it's butt!!!! Don't ever think otherwise!!!! Praying for you. Quote Link to comment Share on other sites More sharing options...
David A Posted June 4, 2003 Share Posted June 4, 2003 Sam, Sorry to hear the news wasn't so good, I know you are fighting the good fight and will not be defeated. We got fish to catch Doc, don't forget! Quote Link to comment Share on other sites More sharing options...
Guest canuckwebgrrl Posted June 4, 2003 Share Posted June 4, 2003 Sam, Sorry the news was what you were expecting after seeing the scan. You and your Dr. have done a great job so far, keep up the good work! Quote Link to comment Share on other sites More sharing options...
Tiny Posted June 6, 2003 Share Posted June 6, 2003 Sam, Raunchy news, to say the least, but your attitude will stand you in good stead. Is there anything else to be done that could beef up your immune system some more? You're ever in my prayers, big time. Quote Link to comment Share on other sites More sharing options...
Jenny G. Posted June 7, 2003 Share Posted June 7, 2003 Hi Sam (and Ada), I wanted to ask you both if you have heard anything about Dr. Joe Miller, a thorastic surgeon at Emory. He was highly recommended to me by another survivor who said "he can do things that others say can't be done". Would also like to hear your opinion of Emory in general. Thanks Jenny Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 7, 2003 Share Posted June 7, 2003 Fight, Sam, fight, fight, fight! Yeah, Sam! Kill the beast! Don Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted June 9, 2003 Share Posted June 9, 2003 Sam You are such an inspiration to all of us here on the board. I was so in awe of you going back to work with an oxygen tank hooked around your neck. That really took fight!. Just know that I will be thinking of and praying for you and your wife as you go up and down the roller coaster again. Good Luck and God Bless Quote Link to comment Share on other sites More sharing options...
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