Please help - unique situation

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skypup
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Joined: Mon Dec 17, 2012 12:12 pm

Re: Please help - unique situation

Postby skypup » Tue Aug 13, 2013 12:22 am

bjl wrote:Well I made it all the way to the infusion chair today before deciding that I did not want to start chemo today. I'm not even done with radiation yet- tomorrow will be the final treatment- and didn't want to pile chemo on top of radiation side effects. I also didn't feel that I had really personally decided to get more chemo- I felt that I was being pressured into it by family and my doctor. If I do more chemo, it has to be my decision.

Yes, it does need to be your decision. Good on you for taking the time you need!

jeanette57
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Joined: Sun Mar 04, 2012 11:40 am

Re: Please help - unique situation

Postby jeanette57 » Tue Aug 13, 2013 1:50 am

ya you, I am tired of getting 3 chemo ;every other Wednesday. I get chemo every wednesday6, one week it is just the Eribitux and the next Wednesday is 5FU-Eribitux, Irantucan, tired and sick on bomb weeks. I want lighter chemo as my numbers are down. I want to be able to do my bucket list - going to the ocean sept 9th. yahoo.
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

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Kathryn in MN
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Re: Please help - unique situation

Postby Kathryn in MN » Tue Aug 13, 2013 11:51 am

Remember, if you do decide to do it, that doesn't mean you are committed long term. If you feel it isn't the right thing for you after trying it, you can stop.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Please help - unique situation

Postby jeanette57 » Wed Aug 14, 2013 10:48 am

good - what is right for you is just that! You take control.
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

Nellie
Posts: 128
Joined: Tue Aug 07, 2012 9:50 pm

Re: Please help - unique situation

Postby Nellie » Thu Aug 15, 2013 12:05 am

Hi BJI,

Just to let you know that travelling while on chemo is possible. I'm in active treatment and have been for over a year now (5fu and avastin) during this time I've traveled from Illinois to Austin Texas, UK and recently San Francisco, and I'm going to arkansas in October.
Wishing you all the best - whatever you decide to do.

Cheers,
Nellie
Rt hemi.
5/12
Adenocarcinoma mod to poor diff. Poor diff accomp. by extensive necrosis
Mult. LN - pos.
Pt4a, pn2b
6/12 Ascites drain - Non malignant
12 rounds folfox completed Dec 2012
Ct scans looking good!
more of the same 1/9/13 folf without the ox.

smokeyjoe
Posts: 137
Joined: Wed Sep 21, 2011 8:40 am

Re: Please help - unique situation

Postby smokeyjoe » Thu Aug 15, 2013 8:11 am

Just to let you know I did folfiri with Avastin, had minimal side effects, mostly diarrhea that was controlled with lomotil pills. My hair thinned some, I was the only one who noticed. Infusion day was the worst day I would have, and that came with some nausea, not throwing up, it was mostly a "hang over feeling". I worked throughout, and when I wanted to travel or had something to attend I would either delay my treatment week, or just take it off. The most annoying thing was the 48 hour bottle attached, but it was tolerable for me. Do what you feel is best for your soul and your wellbeing in general. Getting a second opinion is a good idea ..... is there anything available for you to get some kind of genetic testing done on your cancer, perhaps it will show something where they could try a more targeted therapy.

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: Please help - unique situation

Postby bjl » Mon Aug 19, 2013 12:05 am

Thanks all for the support and advice.

I meet with the doctor tomorrow. Hopefully the results from the liver biopsy will be back (my first biopsy a year ago which indicated germ cell tumor was from the lymph nodes) as well as the genetic profiling results.

Technically I have already gotten a second opinion, as I was treated for several months by Dr. Einhorn @ Indiana University. He and my local oncologist agreed upon my terminal diagnosis and the 5FU + irinotecan + avastin chemo recipe.

I'm considering making a trip out to MD Anderson in Houston for a 3rd opinion - they should have already been sent some of the biopsy tissue so they can do their own pathology report.

It's just so tough to know when "enough is enough." As I have spent the past year in the testicular cancer community, where the overall cure rate is 90+%, the problem doesn't come up very often.

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Kathryn in MN
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Facebook Username: Kathryn Finn-Blume
Location: Minnesota & Mexico
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Re: Please help - unique situation

Postby Kathryn in MN » Mon Aug 19, 2013 1:43 am

I've been on Irinotecan in some combo for 3 years now, with some breaks. I do most of my traveling during breaks, but I travel while on chemo too. In fact I'm going to DC and Miami in October and I'm on chemo now and have been since April. I've tweaked my upcoming chemo schedule so I will feel good at travel time. (This is not the first time I've done that.) When we are living with chronic disease, quality of life counts a lot - not just quantity. I would likely have better results on chemo if I stuck to an every 2 weeks schedule, but for me to have quality of life, that doesn't work for long term. I tweak my schedule for holidays and family events and travel.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

jeanette57
Posts: 1004
Joined: Sun Mar 04, 2012 11:40 am

Re: Please help - unique situation

Postby jeanette57 » Mon Aug 19, 2013 11:04 am

Great - I am starting a DON'T FALL CLASS and I am going to tweek my chemo so I can attend for 6 weeks. I have to skip my week when I go to the ocean and I am going to take the week before trip off to get well enough to enjoy the ocean.

ANY one live near an ocean, how can you get a walker to the water? My brother said a ? quad something may take me, I just want to look at it, not get in at all. DARN shark movie ruined it for me, even through I grew up in Guam swimming with large fish and some sharks as a 5 yr old. I saw the ocean 4 years ago, so just a visit.... :D
T3 N0 M0 -1-4-12 to 3-2013- NOW stage 4 terminal
mets Lungs & bone - halo on head (not to many can see unicorn horn)
chemo for life or until I quit

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: Please help - unique situation

Postby bjl » Mon Aug 19, 2013 5:52 pm

Well, back to chemo hell. Latest biopsy shows they still don't know cancer origin, genetic profiling isn't done yet.

I start FOLFIRI + avastin tomorrow or Wed. I guess I'm willing to try this chemo out and see if it will buy me some more time.

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: Please help - unique situation

Postby bjl » Wed Aug 21, 2013 1:11 am

Bad first day. Stomach cramps giving me bad pain and I hate this 5FU pump- it's literally a fucking ball and chain.

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raym
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Location: South Central PA

Re: Please help - unique situation

Postby raym » Wed Aug 21, 2013 10:53 pm

bjl wrote:Bad first day. Stomach cramps giving me bad pain and I hate this 5FU pump- it's literally a fucking ball and chain.


You may want to discuss the cramps before next infusion and see if atropine may alleviate them. Though usually the cramps occur soon after infusion starts. Also see if you can switch from 5FU infusion to Xeloda (5FU pills).
3/11 IIIC +/FOLFOX
4/12 HIPEC
6/12 Chmo/Rad
9/12 XELIRI+Avast/Zltra
9/13 Plvic Absc,stpd chemo
11/13 Tumr rmvd frm Lap Port incis
12/13 Xeloda
1/14 Cardiac Issue no Xeloda/5FU
3/14 Irinotecan
6/14 Stopped chemo
8/14 Clin Trial
9/14 Infectn - Stpd Trial

Monique
Posts: 103
Joined: Mon Jun 09, 2008 2:54 am

Re: Please help - unique situation

Postby Monique » Thu Aug 22, 2013 1:02 am

I hear you. I hated the fucking 5-FU pump too. Really, really hated it. What I ended up doing was buying a water bottle holder, something like this:

http://www.chinatraderonline.com/wholes ... le-holder/

The water bottle holder, which I wore around my waist and covered with a shirt, made the pump far less conspicuous and less of a hassle. As far as your stomach cramps go, be sure to mention this side effect to your medical team so that they can address the issue. Also, my first and second day of 5-FU was usually my worst.

All my best,
Monique

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: Please help - unique situation

Postby bjl » Thu Aug 22, 2013 4:22 pm

I did get atropine on day 1 of infusion. Nausea has been really bad for the 3 days- no eating/drinking. I was on Zofran, Reglan, granicitron patch, marijuana...couldn't touch it.

bjl
Posts: 37
Joined: Tue Jul 30, 2013 11:36 am

Re: Please help - unique situation

Postby bjl » Fri Aug 23, 2013 5:35 am

Ugh, nausea still destroying me. I wonder if my body is just too worn down from previous chemo. I'm just as nauseous as when I did platinum chemo.


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