Hi from NZ all is well!

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RE: oncologist yesterday- got to make a decision

by lucynz on Sat Jun 08, 2013 09:13 PM

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Can I ask how you have been feeling on gemcitabine and what side effects you have had?

RE: oncologist yesterday- got to make a decision

by Maudsie on Sat Jun 08, 2013 09:49 PM

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Hi Lucy -- My chemotherapy also was just Gemcitibine ("Gemzar").  I had a port put in my chest for easier delivery of the medicine, and  I recommend the port for sure.   I also was given a kind of steriod through the same IV after the gemzar which helped against nausea.  I tolerated the Gemzar quite well, no major problems.  Usually, a few days later, after each time, I had one or two days of fairly mild flu-like symptoms and some fatigue, and then I was pretty good after that until the next cycle started.   So I took it easy on those down days.  Every time I went in (once every week or every other week) I had blood tests to make sure my white and red cells, and platelets, had not dipped too far.  That is a normal and typical issue to deal with.  So for me, I did pretty well with Gemzar, and in general it is pretty well tolerated.  BUT...everyone is different, I cannot stress this enough.  Side effects vary a lot, how well it works varies, too.  Certainly worth a try and see how you do!!!!

Wishing you the BEST!!!!

Maudsie

RE: oncologist yesterday- got to make a decision

by RocknIraqVet on Sat Jun 08, 2013 10:21 PM

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On Jun 08, 2013 9:13 PM lucynz wrote:

Can I ask how you have been feeling on gemcitabine and what side effects you have had?

Certainly. 

I've maintained a diary of my blood counts and side effects.  The first thing they do every chemo day is check my blood counts.  The gemcitabine has a strong effect on the blood.  If everything looks good, then they give me an anti-nausea med, zofran & decadron, with the gemcitabine.  The combination really keys me up on chemo day.  Makes it hard for me to sleep for about two days.  Then for the next two days I get tired and sleep a lot.  My voice goes hoarse, my eyes and throat get kind of dry, and I get heartburn for a couple days after chemo day.  At the end of the 8th week, I got real sick, and had to go on antibiotics for week.  Most notably I've had ongoing constipation.  This week (my 22nd week) was a bit different- I've had diarrhea.  I'm going to speak with the Doc about that on Monday because it was sort of a drastic change.  I don't believe I've lost any hair and I haven't thrown up.

Every fourth week (generally, depending on the blood counts) they have me "rest", and get a break from the chemo.  All in all, the side effects have not been horrifying.  More of a constant nuisance really.  While I am glad I got the treatment, I am looking forward to finishing.

RE: oncologist yesterday- got to make a decision

by RocknIraqVet on Sat Jun 08, 2013 10:30 PM

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On Jun 08, 2013 9:49 PM Maudsie wrote:

Hi Lucy -- My chemotherapy also was just Gemcitibine ("Gemzar").  I had a port put in my chest for easier delivery of the medicine, and  I recommend the port for sure.   I also was given a kind of steriod through the same IV after the gemzar which helped against nausea.  I tolerated the Gemzar quite well, no major problems.  Usually, a few days later, after each time, I had one or two days of fairly mild flu-like symptoms and some fatigue, and then I was pretty good after that until the next cycle started.   So I took it easy on those down days.  Every time I went in (once every week or every other week) I had blood tests to make sure my white and red cells, and platelets, had not dipped too far.  That is a normal and typical issue to deal with.  So for me, I did pretty well with Gemzar, and in general it is pretty well tolerated.  BUT...everyone is different, I cannot stress this enough.  Side effects vary a lot, how well it works varies, too.  Certainly worth a try and see how you do!!!!

Wishing you the BEST!!!!

Maudsie

Hi Maudsie

After you finished the gemzar treatment, did you have the port removed right away, or did you keep it for a bit longer?

RE: oncologist yesterday- got to make a decision

by Maudsie on Sat Jun 08, 2013 10:36 PM

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Kept the port for a while.  Like 2-3 months at least I think.  Just to be on the safe side.  How much longer do you have?

RE: oncologist yesterday- got to make a decision

by RocknIraqVet on Sat Jun 08, 2013 10:50 PM

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On Jun 08, 2013 10:36 PM Maudsie wrote:

Kept the port for a while.  Like 2-3 months at least I think.  Just to be on the safe side.  How much longer do you have?

I started chemo on January 7th...  So I believe I will be done by the end of June. 

On Monday I have an appt to talk with my Oncologist, so I want to ask him about three things- 1.  The chemo end date?  2.  His thoughts on how long to keep the port?  3.  My hernia, can I get it fixed?

If it makes sense to fix the hernia, I though maybe just leave the port in till then, and get 'em both done at once.

RE: oncologist yesterday- got to make a decision

by lucynz on Sat Jun 08, 2013 11:38 PM

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Hi maudsie, I haven't decided whether to get chemo yet, because my hepatic and vena cava lymph nodes tested positive for cancer the drs think the cancer returning is highly likely, they have also told me that there is no guarantee that the chemo will do anything other than make me sick, how far had your cancer spread Maudsie ? Mine has been termed systemic Cheers Lucy

RE: oncologist yesterday- got to make a decision

by Maudsie on Sun Jun 09, 2013 01:21 AM

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Lucy, just reading your words "mine has been termed systemic" follwed by the word "cheers"... is really jarring.  Oh, Lucy, you are in a tight spot for sure.  I was letting you know my side effects from the Gemzar, since you had asked about it, and I know you are weighing pros and cons of going ahead with it.  My cancer had spread to part of the liver, but no more systemic than that.  Surgery was apparently successful in cutting out all the damaged part, because nothing else has turned up in the almost 5 years since my diagnosis.  Believe me, I know how lucky I am.  Whether any chemo helps with GBC, and if so how much, whether it adds a little time, whether it's worth a try since there are side effects that can be troublesome....no one can answer for you I am afraid.  There is no one answer for any of us.  You will find support and strength here...but no firm answers.  You are doing all the right things by seeking guidance from as many resources as you can gather around you.  You will find an answer that is right for you and we will stand with you.

a hug from North Carolina USA --

Maudsie

RE: oncologist yesterday- got to make a decision

by LibbyH on Sun Jun 09, 2013 04:20 AM

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Hi Lucy and everyone, Just letting you know I'm in hospital with severe pain to my right side and vomiting. Came in last Monday, went home on Friday but came back in again on Friday evening with another bout of severe pain. Not sure what is causing the pain but hopefully they'll find out soon. Of course, the morphine is causing major constipation which is not helping me either. Hope you are all keeping well especially you Lucy xx

RE: oncologist yesterday- got to make a decision

by lucynz on Sun Jun 09, 2013 10:07 AM

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On Jun 09, 2013 4:20 AM LibbyH wrote:

Hi Lucy and everyone, Just letting you know I'm in hospital with severe pain to my right side and vomiting. Came in last Monday, went home on Friday but came back in again on Friday evening with another bout of severe pain. Not sure what is causing the pain but hopefully they'll find out soon. Of course, the morphine is causing major constipation which is not helping me either. Hope you are all keeping well especially you Lucy xx
Oh Libby, I've been thinking about you constantly and been hoping and praying that whatever is causing the pain will get resolved, morphine really bungs me up too, I've found adding benefibre to my morning drinks and also drinking a cup of alpine tea at night resolves the constipation issue. I have also found a hot water bottle helps with pain in my side too, although I'm pretty sure my side pain is muscular related to one of my incision sites. I'm really starting to think I should just give the chemo a miss, I have only just started to feel well and maybe I should focus on feeling well for as long as I'm able to. It's such a hard decision to make. I'm supposed to have decided by tomorrow, it would be way easier if Drs had statistics which supported it as a treatment, but they simply don't have any. Libby I hope you will be back at home again and the pain under control really soon, please keep in touch.
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