2nd-line chemo--urgency factor, or not???

[dani hobbs]

My sister's oncologist had her rush home from her long-awaited trip because the tumors in her lung have returned--he wanted her to start second-line chemo, proposing either CAV or Toptecan--I've researched both options, & CAV sounds absolutely horrible--a true case of the tx killing the patient, not the CA. She needed to have a shunt, central line, whatever it's called, inserted in her chest & the MD couldn't even get the damn thing in without kinking the line---had to call her back to Outpt OR to do the whole thing over again. The second time, they took a portable xray machine into the OR to make sure the line was OK. Like they couldn't have done that the 1st time? She returned from her trip on Sept. 28, today is Oct. 25, and they JUST inserted the central line last Fri---she doesn't even have another appt. yet with her oncologist to further discuss chemo, let alone have the chemo regimen set in place and begun! So, what the hell was the rush??? She says to me that she wishes she had continued to travel; just wants her oncologist to be honest with her regarding the point of all future treatment and pertaining to quality of life, extension of life, etc. She feels like she has absolutely no control over her own body, and that issue has always been very important to both of us, so I know exactly how she feels. It is becoming increasingly difficult for me to be encouraging and forward-thinking with her--she & I are realists, and her husband & children are having a very hard time accepting this, absorbing information, and thus providing her with the emotional assistance she needs---easier to stick one's head in the sand. She feels like she has to protect them, and the only person she can really be honest with about how she feels, is me. Also, in my former career as a licensed clinical social worker, I once worked on the hospital oncology unit, led the hospital cancer support group, so, while I hope technology and treatment have advanced somewhat in the past decade or so, I don't know. I feel I know too much, so as far as advising & supporting her, I have reached a crossroads--I want her to feel well, energetic & pain-free & be mobile, to do what she enjoys, in comfort, for as long as possible, and not be confined to her house, her body filled with toxic stuff that makes her feel awful....to her & I, that doesn't equal life, as we know & want it. Also, she is a middle-aged woman with other health problems besides the extensive stage sclc, so maybe the medical profession just does not want to put that much effort into helping her---perhaps her oncologist is already thinking "palliative"without telling her that. In other words, she & I are thinking "what's the point"?

[Don]

Dani,

I have had second line treatment and it was topotecan. Worked well for me. When I had a Pet scan last Oct they really couldnt make up their mind if it was still the old cancer, cancer coming back or scar tissue. That is not fault of anyone its just that sometimes it is harder to read scans for some reason. Well anyway my onc said well lets start 2nd round treatment and lets hit it again while we are ahead. If you read my profile you will see how far I have had to go. Is not easy road as you know but it is possible if you are willing.

If you call ALCASE at 1 800 298-2436 or look at www.alcase.org and ask for a phone buddy named Don. They will get some info from you and then they will pass it on to me and I will call you or your mother. This is all free of charge so please use it. CANT HURT.

Dont assume the worst, think of the best and keep the faith.

God Bless

Don

[SharKats]

I hope you will call Don. He's a great "phone buddy" and I felt much better after talking with him. (And also the encouragement I received from all the people at the Board regarding my recurrent SCLC). Now Dan operates on a "fear" level. He said if I didn't change my attitude and get my fighting spirit back he was "gonna jump in his pick-up truck, drive to Houston and kick my butt." It made me laugh but it also made me realize that I can't sit around moping (and I was indeed having a large, long-lasting pity party) that I need to be pro-active with my treatment, do some research and regain my optimism.

The treatment being given to your sister has me totally baffled. They started me on chemo as soon as they saw the brain mets - I mean within 3 days I was on the chemo.

I feel so badly for your sister - I just don't understand what they're doing. I will certainly remember her in my prayers - whichever road she decides to travel.

May God bless you both.

[Don]

Sorry about the fear factor Sharlene but I am retired military and when I say hop, skip, and jump I mean it cause I dont want to see anyone go down from cancer and if its a grumpy word from me that motivates and gets them off the pity sofa then ok by me. When onc said I might have 2 weeks left I said dont worry doc am gonna make you famous. I got down right serious about what everyone one said I cant do and then I did it. Today I am back to breaking horses for customers and getting tossed around like a little monkey and loving every second of it and I am not looking back for anyone. So if any of you want to get on this lets go, giddy up, and ride into the face of cancer like we have no common sense then call 1 800 298 2436 and ask for a phone buddy by the name of Don.

Web site www.alcase.org. Its free and I love to argue so give me call.

God Bless

Don

PS Sharlene you are so nice to me LOL.....

[SharKats]

Don't be sorry about the "fear factor" - it was my feeble attempt at humor. But fear can be a great movitator in itself and with your horrible threat on top of it, I was shaking in my boots. (Just teasing).

Cancer is something you do need to tackle head-on and as someone told me, maybe it was you, you need to tell the cancer that it's not welcome and to go find another place to live. Love those metaphors.

Wishing you and Letty the best,