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Waiting for the bad news.


Sam'swifeShirley

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Hello everybody,

I had my CT/PET at the local freestanding radiology center at about 1:00 this afternoon. The tech wanted to show off his new stuff and asked if I wanted to see my scan. I said sure. Now I'm not a radiologist, but I’ve seen a few PET scans. There it was, a dark black (hot) spot on the scan right where my newfound node is. I can't say whether there is anything else or not. It will take a real radiologist to say that but I guess I already saw more than I wanted to.

I came home and called my oncologist's office and asked that he call me as soon as he gets the official report. He should get at least a verbal report this afternoon. I know that they don't like to do this sort of thing over the phone, I don't either but I need to know and I think he'll make an exception for me.

I should qualify for second-line chemo, maybe topetecan. I think I'll ask for a biopsy first, just to be sure.

The chance of a second remission is awfully slim but I'm not licked yet. I'm stronger than I've been in months, I've got friends and family who give their all for me and I've over 300 on-line friends / prayer buddies. I am truly blessed.

God bless us all and guys, pray that I'm a really lousy radiologist.

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Sam,

If you have to do chemo again, the topotecan has worked wonderfully for my dad so far, but before you jump ahead, lets wait for the doctor to call. Am logging off and saying prayers for you right now. Let us know what you find out. You're right, we all pray for and care for you here and you WILL be ok.

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Sam-

I'm choked up over your message, but I'm PRAYING that this is one time the doctor is wrong. I get so angry about the seesaw this blasted disease puts us on...but we ARE still moving. Let us know soonest. Blessings being asked for you and yours.

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Sam what is it that everyone says that a Dr makes the worse patient?

Hoping you failed that course in Med school (or at least got lousy marks)

hope everything works out for you

regards eileen

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The oncologist never called. I understand that people get busy and messages don't get passed sometimes. I guess I'll wait for Monday. I'm still going to go fishing and otherwise just relax and do a lot of soul searching and praying.

I've been comparing the way I felt a year ago when I was first diagnosed to what I feel now. I don't think this is as bad although my prognosis is much worse now. I guess a year of "cancering" has gotten me to this point of acceptance. I have not given up and I'm not ready to lie down and wait for this beast to take me. I plan to be the rare exception who beats recurrent SCLC. I feel too good to be dying.

Sam

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Sam,

With your attitude I'll bet you will be the "rare exception". I keep checking for your news which I am still hopeful will be explained some other way.So, if it helps even a little...I'm waiting right along with you.

God bless,

Lynn

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Guest Jonathan

WOW- Sam I did no know you were a doctor! well you cerainly had the

best first line therapy available today. CPT-11 and cisplatin is the most active and newest first line therapy known today for SCLC. What kind of dr were you? I am in school to be a doc. at the Universiy of Chicago. Whatever they do next I would make sure that it is not just one drug (single agent) because everything I have read says that combination chemotherapy plays the best role in aggressively treating SCLC. If I were you I would tell them that you want a two drug combination, because I have also heard that while yes you can get a response out of a single drug, that it is even greater with combination chemotherpay, and combination chemotherapy also has what is called a longer "time to progression rate" with SCLC. Meaning that it takes a longer time for a SCLC tumor to become resistant to a combination of two drugs than a single agent. If you don't believe this go to the NCI website and you can look it up. Since you have only had cisplatin and CPT-11 that means there are other drugs. I actually took the time to phone my mom's oncoogist who happens to be a renouned SCLC expert to ask what he would do for you based on the information you provided us with- and he said that if all you had was cisplatin and CPT-11, the best course from here would be to go on taxol and etoposide as soon as possible. He said taxol has a great response rate as a second line agent and etoposide works very well in SCLC, that is why etoposide is standard first line (soon to be replaced wih CPT-11). He also said that he absolutely would not recommend going on topotecan at this point simply because irrenotecan (CPT-11) is a cousin of topotecan. - much the same way that cisplatin and carboplatin are very similar to each other - so similar that if a patient is resistant to cisplatin they do not even bother trying carboplatin. So I would bring up what my mom's oncoogist from the University of Chicago's Center for Advanced Medicine recommended- the etoposide and taxol combination. Everything will work out. I hope you do not get too down in the dumps!

Here are other standard chemotheraputic drugs for SCLC that you have not yet had:

etoposide

taxol

topotecan

cytoxin with vincristine and adriamycin

methotrexate with lomustine

also ask about gemzar and small cell I am not sure if it has an impact on SCLC tumors -I have heard things good and bad.

Praying and reseaching for you-

Jonathan (te11t@aol.com)

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I haven't posted in a while but do check in regularly. You are doing a great job on the radiation forum here!

I am praying that what you thought you saw was something else. Hoping that you hear that it is nothing on Monday.

Hope

PS- My mom was just called on Thursday that they saw "a thickening" on her recent follow up chest x-ray. She will have a ct done Monday. Praying you both get good news!

-Mom dx with sclc 0l/02

-Chemo and radiation/no PCI

-in complete response

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Jonathan,

Thanks for all your advice and hard work. The Taxol-Etoposide combo sounds like a very good idea to me. CAV would probably be good combo to try also. Gemzar has shown activity against SCLC but I’m not sure that I’d go there either, especially as a single agent. I don’t know of any studies that have looked at the Taxol-Etoposide combo though, do you? You’re going to be a great M.D., I can tell that already. I graduated from U.N.C. – Chapel Hill Med School in 1976, trained in Family Practice but practiced Emergency Medicine from the time I finished residency in 1979 until 1996. Then I went back to F.P. and I’m still practicing full-time. Of course I missed a lot of the last year with chemo, radiation, PCI, radiation pneumonitis and early delayed radiation encephalopathy. I have just now gotten back into the swing of work and I guess I’ll go out again now. Fortunately I’m in a fairly large but very caring and understanding group practice and my position is safe and waiting if and when I’m ever ready to go back.

At this point, if the right supraclavicular node that I have is an isolated met on the PET scan (Please God) I plan to push for a quick excisional biopsy. I know that a needle biopsy would get the needed tissue confirmation and that there are no studies that would say that taking out the whole node would add to survival chances but I figure that since it’s superficial and still mobile, taking it out would be a very low risk outpatient procedure in the hands of any good surgeon and getting rid of any tumor load any way you can has got to be a good idea. If there are other internal mets, then it’s another story. I did look and did not see anything in the liver or chest. I can’t say about the adrenals since the kidneys always light up anyway. We’ll see what the radiologist says.

Thanks to everyone for all the prayers and encouragement.

Sam

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Guest Jonathan

Sam,

Thanks for the compliment, I hear it from a lot of people, but coming from a real doctor it is like music to my ears. Well, the way that I took it from my mom's oncologist, (who is also investigating CPT-11 and cisplatin first line), he made it seem like there would not need to be any research studies on the combination of taxol and etoposide. Because if you think about it- etoposide is standard first line, so it obviously beats all drugs today as far as its effectivenes in SCLC tumors, and since you did not have it, it sounds like a great idea to me. Taxol I have heard to be one of the most effective drugs against all cancers in the last decade. It also happens to be from what I have heard from a number of renouned oncoogists from major cancer centers), a drug of choice for second line therapy in SCLC patients. I totally agree with your thinking about surgery- find one who will take it out if you can, then you can do chemotherapy- that is your best bet! However, this particular regimen that we are talking about seems to me to be the best way to go right now as far as chemo goes. But whatever you do- don't let them put you on a single agent as so many oncologists want to ( thinking that the patient does not have a chance because you DO!!!) You'll see we will all be singing the Mary Tyler Moore song to you in a few months _"Your gonna make it after all"

My mom's oncologist (from the University of Chicago's Center for Advanced Medicine) also did tell me when I called him that that is the regimen that he is using in relapsed cispatin and CPT-11 patients. He said something about using it in a "day 1,8, and 15" schedule because you can deliver almost full doses of each drug and also reduce toxicity atthe same time. get back to me when you can. I am praying.

Knowledge is power and we will WIN this!!!! Keep your chin up thee Sam! it ain't over till the fat lady sings- and she ani't singin yet!

best wishes for a cure-

Jonathan

te11t@aol.com

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Sam,

my husband used Taxol, and etoposide and i think one other drug in there and he did so great, he was almost back to himself, but then he changed to Gemzar and i would say do not use this, i believe this is when every thing change and he went down hill the tumors grew the whole time he was using them, then he used the cytoxin and vincristine and adriamycin and this is one of the older combo and it did give him time, but it helped a little and he lived 2 extra months on this so it helped alittle but try to go with that first combo. You are in my prayers, Take Care

Sandy

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