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God, it's back, what now??


dani hobbs

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Well, I haven't posted for awhile cuz my dear sis got a clean scan & she & spouse were off for their long-planned for retirement--crossing the US in an RV. Her oncologist said she should have a CT scan sometime this month "on the road". She did--the local oncologist at the hospital she went to wanted to inject dye to make the scan more clear but she declined this cuz her onc. said the dye was too hard on her kidneys---so she had the CT scan w/o the dye--she got the report, it was also faxed to her oncologist. Nodules back in her lung, the lesions on the liver have not grown. She has tried to call her oncologist---only his nurse (?) has called back, who relayed the message to my sis--you can travel for one more month, when are you coming back--and the vague possibility of a second round of chemo orally, rather than IV, so she can still travel. Now my sis is saying she wants to talk to her doc re how much time does she have left, can she just continue to travel---he hasn't called her back, she doesn't want to suddenly end her trip & turn around & come home. She only just completed her chemo a couple of months ago. Has anyone on this message board with a dx similar to my sister had oral, second-line chemotherapy? I would so love if she could continue on her journey--she feels good, physically. Hope this is not too confusing to read--have consumed massive quantities of wine.

:(

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Dani,

Wish I had an answer for you. Earl and I were going to travel the good ole USA also when we retired. It was something we were both looking forward to.

I don't think any decisions can be made until she talks to the onc and gets the full story.

Keep us posted.

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I am so sorry about this big bump in the road.

I have never seen anyone on here with sclc getting oral chemo when they have had a relapse. Now that does not mean it does not happen. Everyday something new pops up for cancer treatments.

She needs to decide whether to cont. the trip or go home and go in to see the Dr.

My prayers are with you .

Love Cindy

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Dani,

SO sorry to hear this news,,, but.... I do hope they can give the chemo orally cause I think being happy about what your doing NOW is just as important as getting treatment in this battle. Sorry I have no answers for you, just hoping things turn up

Jamie

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My sis has been trying to reach her oncologist but only the assistant has called back & of course that person won't give out information--just said that the onc. said she could have another month on the road, that there is a slight possibility of oral chemo, & to give him a date of when she'll return. I've researched oral chemo & the only thing I have found is oral etoposide, which my sister already had as an IV, and I don't believe it is a second-line treatment. She has left several messages the Dr. to please call her--she wants to know what options she has before they turn around & come back. And, since they're traveling, the cell phone service is spotty. They're in an RV, they live in Calif. and they are now in Michigan & are really not up, physically or emotionally, for a straight-shot run halfway across the country. She says she feels great physically. I was so hoping she could enjoy herself without this hanging over her head like a big, dark cloud. I wish I could do something from this end to help her. I don't understand WHY her Dr. can't just call her & talk to her for a few minutes!!

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Dear Dani,

He absolutly should and if I was her I would keep calling until they got sick of my voice and then call some more!! I am praying she can continue to feel good and can continue on her trip. Quality over Quantity anyday is how I feel. My prayers are with you all.

God bless you,

Jane

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There may be a possibility that your sister has already signed a release for you to talk to the dr. etc. When we initially went to the oncolgogist there was a form asking who you wanted medical information shared with. We knew his sister may want to call from Nashville, so we added her name. Ask her if she remembers listing you.

All the very best to you both.

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