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Prayers needed update

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Very bad news.  All per vinous cancer spots have grown and new ones have appeared in liver and perinatal.  No remission for me.  Chemo changed to irrotecan and Eurbitux.  Another scan in three months. I asked doctor how long can you live on chemo for life and he said it depends on how I react to chemo.  Wondering if I should quit my job 

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

I hope the new chemotherapy is more effective.  Good question about you job.  I've faced that too at times.  Work can be helpful (insurance - taking your mind off your health if only for a little while).  On the other hand, to have more time to promote your health (exercise etc) and doing things you've put off can be helpful too.  I'm sure you'll make the right decision for you. 

chp's picture
chp
Posts: 23
Joined: Dec 2012

So sorry for your bad news.  I'll be praying that this new treatment will work well for you with few side effects. You're strong!  You can do this!

Cathy

smokeyjoe
Posts: 1428
Joined: Feb 2011

Sheesh Vicki,  I was sooooo hoping your scans were showing that chemo. was working for you  Frown      Will the new chemo regimine be at the full dose or will it  be at a reduced dose still???   I don't know anything about vectibix,  does it affect your platelets??     I think Phil is on this,  I'm sure he can offer you some sound advice as to side effects and how to manage them.       Thanks for posting your results,  I was thinking of you first thing this morning and wondering.     I can't really comment about work....I work, it takes my mind off things.....although today I found out someone is off "sick"  and I don't want to be exposed to what's going around!

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 445
Joined: May 2012

So sorry about your results. I know Winter Marie has had good results with Irretocan, maybe this will be the one. I agree that work can help you take your mind off of it but also can add stress. You can get disability to help with not working, stage IV automatically qualifies you for it. Hoping for better results with your new chemo.
Sandy

jen2012
Posts: 1195
Joined: Aug 2012

I'm so sorry Vicki...but hopeful for you to have a better response. I would say if your job brings stress -leave. If you enjoy it - stay. How do you feel? Isnt your next chemo the one wintermarie is having good luck with?

On another note...i clicked on your name to see if you had your story posted and noticed today is your 2 yr anniversary since joining the site. Im sorry you had to join but hope you have gotten lots of support and love from the great people here. Can we have a virtual anniversary party? Im bringing wine and hugs!

Hang in there Vicki...you remain in prayers.

Lovekitties's picture
Lovekitties
Posts: 2927
Joined: Jan 2010

So sorry to hear that the news was not better.

Prayers that the new treatment plan is very effective and brings great results.

As for work, it all depends...only you know your financial and insurance situation.

If you determine that leaving is your best choice for now, just make sure to fill your days with good stuff. 

Hugs,

Marie who loves kitties

janie1
Posts: 753
Joined: Apr 2011

Sorry Vicki.

I meant to ask you a while back if you could take erbitux...you hadn't mentioned it.   Hope this really helps, it has helped so many.

Phil64's picture
Phil64
Posts: 432
Joined: Apr 2012

Vicki, Sending you Light and Love!!! Hope this new treatment will prove more effective. God Bless!  And I Pray that God will guide you on your work/no work decision.

Phil64's picture
Phil64
Posts: 432
Joined: Apr 2012

Vicki, Sending you Light and Love!!! Hope this new treatment will prove more effective. God Bless!  And I Pray that God will guide you on your work/no work decision.

wolfen's picture
wolfen
Posts: 1192
Joined: Apr 2009

Not the update info. any of us wanted to hear from you. Cancer is just so "2 steps forward and 3 steps back". I know that Irinotecan is a rough drug for some, but seems to be very effective.

I suppose quitting your job would depend on how you are feeling, and finances, etc. as Marie said. Sometimes work can be a distraction from our reality.

I'll be thinking of you as you journey down this new road. Remember that "YOU CAN DO THIS".

Luv,

Wolfen

Sundanceh's picture
Sundanceh
Posts: 4268
Joined: Jun 2009

Rather than quit outright....consider this.

I don't know what type of company you work for...but you could see if you had STD available to use at your work.  The types of policies that companies can vary...I've had some bad ones...and the one I've got now is pretty good. 

Some will cover you %100 for the first 13-weeks....and then it switches to LTD under the STD plan...which would mean that you could still earn 50-60% of what your gross pay was.....that would take you out to the full six-months.....after that real LTD would kick in from the company provider...in other words, the company would no longer be paying you, but the insurance would be covering you....they would take out your government taxes and stuff.....but you would still have to pay for your company benefits, 401-k, health, etc.

That can go up to 1-year....after a year, they usually terminate you automatically. 

FMLA can be used as job protection from all of this...up to a year....it's a rolling calendar of 12-months...depending on when you leave...come back...etc.

The way this works:

The first 3-months, they HAVE TO hold your current position, seniority, and pay etc...

Between 3-6 months, they could move you to another area....with same pay etc....just a different job position, but you retain what you've already worked for.

After 12-months, FMLA would expire....and since the company is in business...to do business...they move on

So, Vicki...before I'd yank the plug out of the wall permanently...well, I wouldn't do it just yet....if for no other reason than INSURANCE!

You think you got problems now?  Try going without insurance, or with over-inflated Cobra etc. 

Long story short.....take a leave of absence...and see where this fight goes...you'll know what to do as you see where the fight is going. 

I've worked through chemo and some radiation treatments etc....there are no ribbons or awards....just insurance:)

BTW, if you get STD and/or LTD.....one thing I learned....you have to be back at work for 6-MONTHS.....or they just add the time to what you already took.

EX:  You take 3 of 6 months....come back one month....and leave again.......result is they will begin to add the new time to the 3-months.....whereas if you could stay back 6-months, it would "Reset" the clock back to zero for that stuff......however, the FMLA still runs on a rolling basis....so you might be slightly off.

FMLA means job protection (as outlined above)....it's not paid time off...just covers your backside for those precious months. 

Without FMLA protection, the company has the discretion to fire you.....just depends on what you're standing is with them....how important is the job...and how they want to handle it.

The cold truth is they have a business to run....I get that. 

Doesn't make our life easier though.....we simply have to Adapt and Overcome.

Hope this helps, Vicki....Irinotecan can be a monster, but highly effective....you should have a better time with platelets.....and remember you can be doing this with your platelets in the 50's......don't let this guy bamboozle you on that one...I was 50's and 60's the whole way through...didn't stop me.

Still only in the low 70's.....over 18 months out of my last treatment.

Hugs!!!!!!!!!

-Craig

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I am very sorry to read this, and hope that the new regimen works for you.  I can't take Erbitux as my cancer has a RAS mutation, and Erbitux won't help me.  I may also be starting on Irinotecan as early as tomorrow, as I have had 12 tx of FOLFOX (Oxaliplatin) + Avastin and the neuropathy is starting to get pretty bad in my feet.  I have not had new growth on FOLFOX, but I have also not reached anywhere close to NED/remission (pretty much just holding steady against the tumors).  The FOLFIRI + Avastin is my best chance to get further tumor shrinkage at this time, so I think that is where we are going.  Like you, I appear to be a chemo for life case. 

With respect to quitting your job, it really depends on your financial situation.  My wife and I have 6 kids (all 15 or younger), and she is a stay at home mom, so I have to work so we have income, health insurance, life insurance, etc...  I will very likely have to work until that time where it will be impossible to work anymore, at which time I will have to hope the STD and LTD will cover me long enough to keep my work benefits in place until I'm gone.  My biggest fear is that I will not be able to leave enough money behind for my wife and kids, as they will likely have a long time to go after dad is gone.  Just thinking about this stuff makes me very sad and a little angry at my situation, but I can't change it, so I have to deal with it and move ahead.  I always keep in mind that there are so many people out there who are worse off than me, which helps me keep my situation in perspective somewhat.

Tedd  

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

HI Vicki,

I have been on Irenotecan and Vectibix from May to November...  I will not lie.. I hated Oxycialplatin for the neuropathy.. but Irenotecan made my loose my hair and that really killed my spirits....so please be prepared .. I don't have liver mets yet.. but my doc tells me you can live a long time on this routine on and off..

But to me the key is our Spirit and when we loose that.. we are lost...

Sundance/Craig has a great posting about FLMA and STL.. but please check with your job and state to be sure how your works.. I think often of work and needing to make a change to manage this..

Prayers are always sent for all my friends here.. Love you Donna

 

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

I have seen others who had success after trying several different types of chemo, so I'm going to keep hoping that this one will do the trick for you.  I've been on the receiving end of bad scans after struggling through the hell of chemo, and I know how depressing it is, but please try to keep up hope as best you can.  And all of us on the board will keep sending our collective love and strength your way.  Ann Alexandria

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Thank you everyone. I'm going to get a second opinion to see if they have another idea that might get me into remission even though this doc said impossible.  My poor husband is devastated.  We are high school sweetheart and now married 24 years.  

Varmint5's picture
Varmint5
Posts: 371
Joined: Feb 2012

That your news wasn't better. My daughter failed Folfox after four months and is now on Folfiri and Erbitux. And it has done wonders for her. We will know for sure after her PET scan next week, but she has gained her weight back and CEA is down to 10 from over 3,000 when she started on Folfiri (6,800 in the beginning). We will hope and pray you have the same response. Second opinion is always good to get.

Sandy

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Really hoping and praying that the next chemo regimen works great for you, and I truly understand what you are saying about your husband being devastated.  I truly believe that manyn times it is harder for our loved ones to deal with this than it is for those of us that have the cancer.  My biggest concern is how my family will deal losing me, and how they will do when I am gone.  It breaks my heart to think that my kids will have to grow up w/out their dad....

Tedd

annalexandria's picture
annalexandria
Posts: 2193
Joined: Oct 2011

I've read that one of the more experienced GI oncs here in Seattle (Dr. Lin) is using it successfully on patients, having significantly better outcome vs. chemo alone.  Like all drugs, it can have some serious side effects (serious but rare), so don't know if it's even an option for you depending on any other health issues you may have, but it sounds like it's time to throw the kitchen sink at this thing.

tanstaafl's picture
tanstaafl
Posts: 956
Joined: Oct 2010

When my wife's response to treatment was uncertain, we reved her CEA-CA19.9-CBC-liver markers tests up to 10-21 day intervals to generate enough data to have an early opinion about experimental chemo performance to hold her CEA in check for a few months until rescue surgery.     Basically, our-pedal-to-the-metal was Life Extension's recommendations for colon cancer abbreviated -plus- the light chemo regimen (including daily low dose UFT/LV instead of low dose Xeloda) on my "About me" page -plus- IV vitamin C.  Since her residual cancer was low, we haven't even had to fully implement the Life Extension quantities of curcumin and Celebrex. Of course mileage is going to vary and there are other paths.

If they can't / won't do surgery and the fast track indications from several blood tests with any particular treatment are not satisfactory, one moves to the next option.  I always ask "if this doesn't work, what is the next option".  If there is no concrete or satisfactory answer, that means to me, start finding the next option NOW, even while starting current chemo.  Several of us have gone the experimental - alternative route with CEA reduction or longer term control, after other options were unsatisfactory.

With conventional chemos it is important to move toward CEA/CA19.9 effective regimens quickly with the least permanent damage to blood counts to maintain immune function and related options.  We quickly got into experimental territory and have made that work for us. 

Hooley's picture
Hooley
Posts: 149
Joined: Aug 2012

Hi there. I'm at,exactly the same place. Just yesterday onc put me on irrinotecan plus erbitUx.  I have had 12 cycles do irrotecan plus folfox and lung tumors just starting to grumble,again. Now im on the irr plus erbitex which onc said works farrrr better than irr aalone he said side effect is acne rash which means it should be working.  che,o is every fortnight and erbitex weekly.  Lets beat the crap outta this.  Luv and prayers for u too!

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

The Irinotecan has started working on my tumors quite nicely already, soooo keep those hopes up that it will do the same for you as I'm sure it will, it seems to have worked wonders so far for many.

Know, that you can do this.  You're made of tough stuff and you can handle it just fine!!!!

Winter Marie

k44454445's picture
k44454445
Posts: 494
Joined: Jul 2012

to read that you got bad news. praying the chemo works for you. stay strong!

hugs

judy

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