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bummy news today

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

I'm stage 4, on my 4th recurrance and started chemo 6 weeks ago. I'm on Xeloda (3 pills morning and night), Irinotecan (40% strength to keep diarrhea at bay), and Avastin.   After the first cycle my CEA went from 18.6 to 15.9.  A good drop.  Second cycle my CEA went back up to 18.4, not good.  Third cycle, I had a bad cold and diarrhea for 5 days, so I opted for just the Xeloda (no irinotecan or Avastin).  Went in today for the 4th cycle and CEA now up to 21.5.  Yikes! It seems like my body is giving out with the diarrhea and increase in CEA.  I'm going to talk to my surgeon about going in and cutting out the two spots, not sure what he will say.  He wanted me to give the chemo a try and may want me to try a bit longer.  Actually Im leaning towards asking to go to Dr. Lowy, UCSD, for cytoreduction surgery.  I've had HIPEC and he's a great surgeon that my HMO will refer patients to.  My surgeon is not wild about doing that himself and Lowy has much more experience dealing with sticky organs (a side effect of the HIPEC).

Not sure what to do next.  Guess it's time to start thinking about it.  I did not expect to be going back up the big rollercoaster hill quite so soon.  Traci

jen2012
Posts: 1607
Joined: Aug 2012

Sorry to read this Traci.  Sounds like seeing Dr. Lowy is a good plan.  Will be watching for an update.

Trubrit's picture
Trubrit
Posts: 5217
Joined: Jan 2013

You always sound so upbeat, you're a real inspiration.

Still, I am sorry that you are riding the rough road and pray that you can find some relief. 

Good luck with Dr. Lowry. I hope something positive can be done, and soon. 

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

I would see H.J. Lenz at USC and also Andrew Lowe at UCSD.   They are worth the visit and two great options on the next thing to do. I will see them both in the next 10 days.   Both keep you in their medical system once you have had one visit!   Then they both will provide input on your future treatments.  I do not care if you have to beg, borrow, or take debt, go see them!

 

They are both positive, and come to a treatment that will work for you.  Both are positive to visit. UCSD is a very beautiful campus. Go have lunch a tthe mall, or at the Sushi Deli number 3.  Also go see the LaJoya caves.

 

Best Always,  mike

PS  If you need more info, message me through the network.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Mike - I've seen both Doctors before multiple times.  Really, really wanted Dr. Lowy to do my HIPEC, but alas, my HMO opted for one of their surgeons with limited HIPEC experience.  I keep debating whether to stick with my HMO or go to a PPO which covers both Doctors.  I've been afraid to change because 1) my HMO has been doing good by me, and 2) starting over with different oncologists.  Open enrollemnt just closed but my Personnel Specialist said she would push it through if I decide to switch.

Good luck with your visits to Dr. Lowy and Dr. Lenz.  I love seeing them both.  Traci

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother has had some wicked side effects too. I really hope you're able to figure out a way to beat this beast! I am sorry that you're having such a hard time. {{{HUGS}}}

Lin

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Traci.  I was very sorry to read your update.  You must be so discouraged.  You're wise to get a game plan in place.  I really admire your upbeat disposition and fighting spirit.  Like so many others here at CSN, you're an inspiration.  Good luck and please keep us updated.

 

Chelsea

Lovekitties's picture
Lovekitties
Posts: 3348
Joined: Jan 2010

So sorry to hear that your news is not better.

As for your options, you know yourself best, so push for what you feel is best. 

Wishing you best results on your quest for getting things back on track.

Hugs,

Marie who loves kitties

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

it sure doesn't hurt to check in with your surgeon for options.  My CEA started at 3.5 with several tumors in liver, lungs, thorax, went to 8.8, went to 10, went to 4.5, yo yo, I'm hoping you see a drop next, but it is always good to have a new plan in place just in case.

Wishing you the best,

Winter Marie

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Your encouragement means a lot.  I'm sure I'll get things straightened out.  The worst part for me is when I don't have a solid game plan.  The uncertainty drives me nuts!

Being Christmastime doesn't help.  I want to put up our lights and buy a tree, but mostly today I want to be in bed.  Oh well, tomorrow I'll feel better, I usually do.  Maybe we can get a tree and I can spend the weekend decorating.  Oh and shopping!  I've barely started, yikes!

Thanks again everyone.  Love you all and the support I get here is the best.  Traci

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Looks like you have to consider many option and the only thing I'd like to add is to suggest a chemo sensitivity test. The oncologist and his lab is here in Long Beach California. They send you a kit and the only thing they need is a biopsy of living cancer cells in the kit shipped to them. In a few days they try single and combination of chemos directly on the cancel cells and they tell you exactly what works so you s don't have to go through months of treatments and side effects then find out that it did not work. It's not cheap: $4,000 (some insurance may cover), but is the best chance of finding out what works.

At least look up their website: rationaltherapeutics.com

I really wish you the best possible outcome.

Laz

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Glad you reminded me of this.  If I get my surgery, I'll definitely consider this.  It would be good to know what works and what does not.  Traci

janderson1964
Posts: 2215
Joined: Oct 2011

I think seeing dr lowry is the right choice.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I know from my own experience that it just gets exhausting after a while.  When do they plan to scan again?  Seems like that might be useful information as you try to decide what to do.  When I was having a recurrence about evey 6 months or so, I was on a 3 month scan schedule.  

And I think it you can get them to do surgery, that would be my choice.  Chemo was never effective for me, but surgery seems to have worked pretty well.  If you have access to a very experienced surgeon, that's even better!

Sending hugs and strength your way to get through this slog and back to better health~AA

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Alot of the news lately, we ourselves just don't want to acknowlede anymore.  I'm rapidly getting to the point where I could care less and less about CEA levels, scans, progression etc.....I'm just so tired...and this time there is no end in sight....well, there is....but not what I want to face....much less acknowledge.

I know  how hard this all is, Traci...I'm dealing with things "by not dealing with them."  Well, you know what I mean:)

I'm just doing what I can on the days I can do anything.....trying ot help my wife get house cleaned and repaired....paperwork in order etc. etc.

I can only take what each day gives me....some days I'm more physically capapble....next day, not so much....depends....and I haven't been on chemo for close to 6-weeks now....was supposed to go back Friday again with new regime of Folfox....but weather sidelined us......about a 50-mile trip each direction over nothing but ice.....lots of bridges and overpasses in our area......over 5000 of 'em actually. 

Lots of chances for accident....

So, I'm trying to get back in the rotation....and taking each day as it is.  The pain I'm fighting in the pleura of my lung is enough by itself....it tests my will to live everday, the pain can be so excruciating.

If there is any consolation I take from this is the promise that the next world will be full of No More Pain & No More Sorrow:)

And that sounds pretty good right about now...I'm trying to get ready for that phase of my education next.....the road to the Path of Acceptance about my own situation.

Irinotecan didn't work for me.....makes me wonder if it did any good the last time at all....except to make me so sick. 

So, I've lost a weapon in the fight.....not excited about Folfox again either....though I've asked for the Magnesium Sulfate.  I talked with my onc about it and there were 'studies' that said taking it NEGATED the Folfox treatment......another study has recently disproved that theory.....and I believe it for lesser neuropathy symptoms.  Now, we'll see if there is response or not. 

I'll just stop right there.

Thinking of you and sorry for your bad news.....my onc gave it to me 3 weeks ago....basically the chemo for life speech....I took it like a man, but it still makes you feel sort of funny.....that feeling that you've lost an option in your care.

You know what I mean...

Keep it going:)

-Craig

Cathleen Mary
Posts: 827
Joined: May 2011

 

Traci,

You are really amazing!!! I am so sorry the journey has become bumpy once again.  It sounds like you are a great advocate for yourself....and inspiration to many.  Hopes and prayers that this, too, will soon have a game plan.

Hugs,

CM

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I just...I don't know.  This just sucks that you are at this point.

You're a good man, and you deserve so much better.  But as we all know, cancer has no respect for that, or anything else, really.

I'm going to continue to hope that the future still holds some brightness for you, and also hope that we here on the board can support you as you walk the path.

Lots o' love~AA

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