Michael:

My sister had almost the identical treatment that you are describing.  And she had a very similar experience.  She got fevers and very severe joint aches after the Gemzar treatments.  And her blood counts got really low, so that they had to postpone some of her treatments.  So, it seems like these are just side effects that happen sometimes with that particular chemo.

2

(13 replies, posted in General Discussion)

Beth, I'm not sure that anyplace will do a transplant after a failed resection.  I'm pretty sure that a prior resection removes someone from the Mayo protocol.  That said, you may want to contact New York Presbyterian.  We had a meeting with a couple of surgeons there last Spring who said they might consider such an operation for the right patient.

Michael:

My sister had the exact same treatment plan that is being recommended for your father.  She had an R0 resection at Hopkins.  After a six week recovery, 5FU on 24-hour continuous pump with radiation 5 days a week for 6 weeks.  Then a month off and Gemzar once a week for six months.  She's in the middle of the Gemzar now.  Everything seems to be going great with her, with the exception of some typically nasty side effects from the treatments.

4

(4 replies, posted in Chemotherapy)

I ask because it happened to my sister.  She had a successful resection, but they decided to do chemo(5FU)/radiation and then chemo (Gemzar) as a follow-up.  The radition was terrible, but she got through it.  After a month break, she had her first gemzar, and it knocked her blood levels way down.

Has anyone had their blood counts all drop extremely low after just one treatment of Gemzar?  And has anyone taken Procrit?

Even among doctors that have handled CC in the past.  The more experience the better.

IMHO, to the extent possible, you need to consult with several doctors before deciding which one to do the surgery.  Some surgeons are far more willing and capable of doing a more agressive surgery, which is often required for a positive outcome.

Betsy:

Her surgeon also said his opinion was that chemo/radiation was not necessary, primarily because it's not proven to have any effect.  But because her margin was very close, and in keeping with the agressive nature of her treatment plan, together with the radiation oncologist and oncologist, she decided to go forward with a course of radiation/chemo followed by a course of chemo, just to be sure.  I think it's a personal decision what to do, and you just have to do what you think is right for you based on the information that you have.

p

My sister, who is right around your age Betsy, had a resection for a Klatskins tumor in early June at Hopkins, with no lymph involvement and no metasteses.  The surgery was very agressive, but they were able to get a negative margin and she is cancer free now too.  They are now doing agressive radiation and chemo to make sure it doesn't come back.

10

(3 replies, posted in General Discussion)

Can anyone give a very general ballpark idea of what the cost is to go through the transplant program at Mayo?  What about the fees just for the initial round of consultations?

My sister, in her 40s, was recently diagnosed with Klatskins.  We have been told that if resection is attempted, but unsuccesful, liver transplatation is no longer an option, and that therefore it is important to think about transplatation before undergoing resection surgery.  Have others confronted this issue?  Is anyone familiar with the requirements for becoming a transplant patient at Mayo clinic or elsewhere?  Any information is appreciated.