Lost all priority because I quit chemo

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Frenchie's Wife
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Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Lost all priority because I quit chemo

Postby Frenchie's Wife » Sun Aug 17, 2014 11:45 pm

Looks like I am back at the end of the line. I just found out Friday that because I decided to end all chemo treatments, I am now considered palliative and no longer have priority. I have to wait 6 weeks just to talk to the uncolagist !! I have a rare tumor in my nasal passages. Surgery may or may not be an option for this tumor. I will need a PET scan, blood work etc. The doctor has to order these and it takes time to set up. Had I known they would do this, I would have told the doctor that I was just taking a chemo break and kept my place in line. By the time all is said and done, the tumor may have time to grow or spread. I wanted to deal with this in the fall but not that late. Now, we may be looking at winter before they can fit me in for an operation.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

Delinda
Posts: 402
Joined: Sat Jul 12, 2014 8:39 pm
Location: Washington state

Re: Lost all priority because I quit chemo

Postby Delinda » Mon Aug 18, 2014 12:55 am

Oh Frenchie! I've never heard of such a thing & had no idea they would treat anyone this way. This is horrific. I don't have a clue what to do, but have to believe there must be someone you can speak to. Lie if you have to and tell them whatever they want to hear! Normally I would not advise that, but this doesn't seem nornal to me. And if this is in fact the new normal, it's WRONG. IMHO, a doctor should not abandon a patient because of a choice he's made. Wish one of our savy, experienced members had seen your post first because I just don't know. All I can do is be outraged on your behalf & send my love. Anybody else out there?? Help!! Hugs to my friend, XXOXO, Delinda
62 yo wife & mom
4/14 dx stage IIIC colon cancer
4.5cm tumor, 9/28 nodes
temp colostomy, take down 6/14
7/14 start FOLFOX, 6 mo

Kekeg
Posts: 184
Joined: Mon Oct 01, 2012 12:31 am
Location: Arkansas

Re: Lost all priority because I quit chemo

Postby Kekeg » Mon Aug 18, 2014 2:21 am

Try your primary care physician for help. It may be easier to get an appointment sooner with your family doctor or internist. Any physician can order imaging studies and make a referral to a specialist. As a patient, you have the right to make decisions and also to change your mind. If your insurance offers a case manager(many do provide one free), they may be able to help expedite appointments as well. Wishing you the best with your journey.
KeKeG age 58
Colon cancer - adneocarcinoma dx 5/2011
Stage III b
T3N1Mx
Rt colectomy 5/2011
Chemotherapy 6/2011 -2/2012
5FU, leukovorin, irrintocan
PET clear 2012
Lung nodules on chest CT 8/2012, unchanged 12/2012
CT 4/9/2013 NED, nodules unchanged
CT 4/2014 NED, nodules unchanged
CT 4/2015 NED nodules both lungs, unchanged size
CT 5/2016 NED 5 year survivor of Stage IIIB!!

Kekeg
Posts: 184
Joined: Mon Oct 01, 2012 12:31 am
Location: Arkansas

Re: Lost all priority because I quit chemo

Postby Kekeg » Mon Aug 18, 2014 2:34 am

Since you mentioned the nasal tumor is rare, an otolaryngologist may be very interested in treating you, particularly a doctor in academics. Try to get your referral for yourself through primary care or any available route. I see you live in Canada. Here in US specialists do speed things up when they are interested in seeing the patient with an unusual diagnosis if you are able to directly contact specialists, be sure the receptionist or nurse is aware your diagnosis May interest their doctor. Wish you the best.
KeKeG age 58
Colon cancer - adneocarcinoma dx 5/2011
Stage III b
T3N1Mx
Rt colectomy 5/2011
Chemotherapy 6/2011 -2/2012
5FU, leukovorin, irrintocan
PET clear 2012
Lung nodules on chest CT 8/2012, unchanged 12/2012
CT 4/9/2013 NED, nodules unchanged
CT 4/2014 NED, nodules unchanged
CT 4/2015 NED nodules both lungs, unchanged size
CT 5/2016 NED 5 year survivor of Stage IIIB!!

stu
Posts: 1461
Joined: Sat Aug 17, 2013 5:46 pm

Re: Lost all priority because I quit chemo

Postby stu » Mon Aug 18, 2014 3:36 am

Hi.
Your health care has similarities to ours in the UK. A phone call advising them that you were considering highlighting this in the media usually reverses such decisions. Of course you do not have to follow through unless that is of your choosing. Also contacting your national cancer charities campaign department helped me find out ways to navigate the system we operated in. This is something that can't wait as you did not have full understanding of the implications of your decision. Nor was it fully explained. I would also write to the head of oncology explaining the lack of clarity in the explainations provided and in the light of this an instand review within a set time frame is required.
I understand it sounds a lot of work but is just really a few emails. Or select someone to advocate for you.
Anyway its a terrible decision and poor policy that needs to change.
Regards
St
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

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Bev G
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Facebook Username: Bev Golde
Location: Quechee, VT

Re: Lost all priority because I quit chemo

Postby Bev G » Mon Aug 18, 2014 6:08 am

Frenchie, this just seems so wrong. Many of us in the US envy things about the Canadian system, but certainly not this. In the US there is a concept called "abandonment of the patient'" and it is illegal. I don't know if that law exists there? CRguy may be very helpful with this issue, and i bet he'll be around. I am really sorry you are going through this. This first thing I would do today is look for the health care advocacy department and call them.

Please keep us posted. WIshing you rapid success as you take care of this.

xox

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: Lost all priority because I quit chemo

Postby skypup » Mon Aug 18, 2014 10:53 am

Frenchie, you could try something that worked for me: I called every afternoon asking about openings the next day or two due to cancellations. They got me in pretty quick after my third call. And they really do get a lot of cancellations...

tammylayne
Posts: 2177
Joined: Fri Jul 16, 2010 9:24 am

Re: Lost all priority because I quit chemo

Postby tammylayne » Mon Aug 18, 2014 11:35 am

Here in Ontario, Canada our cancer clinic is housed in a large hospital. I went to a patient advocate (every hospital here has them) when my oncologist gave me the wrong chemo...and I got immdeiate action from the hospital and the head of oncology. They look out for YOU...not just the hospital. You could try that. ANd once you lodge a complaint...they have to follow through.

I also agree with the suggestion of getting your family doc involved. Mine is heavily connected, as are many, and she got their attention on a few things that slipped through the cracks with my care. Doesn't seem right,,,they don't always hear US,,,,butt, you need to do WHATEVER it takes to be heard. Call...bug...get your member of parliment involved if you need to!!!!!!!!!!! We have done that too, and it is amazing how quickly they can get things done for you.

Best of luck Frenchie....
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."

canadiandaughter
Posts: 676
Joined: Sun Aug 17, 2014 11:19 am

Re: Lost all priority because I quit chemo

Postby canadiandaughter » Mon Aug 18, 2014 11:41 am

Which cancer clinic is that at Frenchie? I am also from Alberta, so this really upsets me that this has happened to you!! We have been very lucky so far with the speed of things with my father, but we are at the new clinic in Red Deer.
DD to 81 year old father
dx 24/07/14 iv cc mets liver/lung
folifiri started 19/07/14
shrinkage of all mets
growth in the liver,started folfox/avastin 80% 13/01/16
reduced to 70% due to side effects 27/01/16
First scan on folfox shows shrinkage in lungs, but liver just stable
6 rounds of vectibix-fail. 3cm growth and new spots showing Waiting for panel recommendations
At peace January 8, 2017

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Rob in PA
Posts: 2005
Joined: Wed Dec 09, 2009 9:16 pm
Location: Pennsylvania

Re: Lost all priority because I quit chemo

Postby Rob in PA » Mon Aug 18, 2014 11:56 am

Go get em' Frenchie, sounds like they are giving you a raw deal.

One of the things i always remembered my onc telling me is to "remember, taking chemo is YOUR option, we can only recommend it". You shouldn't be punished because you feel your body isn't up for chemo right at the moment.

Best,
Rob
dx 11/07 crc IIIb @ 39
Xelox/Rad/ temp colostomy
LAR/J-pouch/ temp ileo
Folfox-8
Failed reversal
2/09 liver mets; liver resect/ileo reversal
Folfiri/Avastin - 12
2/11 5 lung mets
Folfiri/Avastin 2011
SBRT 3/12
Lung met 5/13/ said NO to more chemo
SBRT 8/13
2 lung mets 5/14, VATS 8/14, NED

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CRguy
Posts: 10285
Joined: Sun Feb 10, 2008 6:00 pm

Re: Lost all priority because I quit chemo

Postby CRguy » Mon Aug 18, 2014 3:40 pm

Hey Frenchie,
I don't have a lot to add to tammylane but tell the doctor NOW that you misunderstood the situation and you, not being a doctor didn't know the right terms to use and really just wanted a break ... sell it like you own it bro'.

In addition to hospital advocates and politicians, both the CBC and CTV have consumer advocates who do spots on situations like this ( or Marketplace ) ... get the media working for you if you are so inclined.

KEEP pushing !


( O/T the Triton RV chassis is throwing us tranny codes which we are nuking one by one, and I think we are down to the last sensor replacement ???? never been serviced :twisted: so hoping not a mechanical internal thing ... sensors and computer problems would be my preference ! The Onan is not putting out ANY sparks so we are into brush + windings ???? ...... lesson learned, do NOT let RVs sit unused for 6+ years ! )

Cheers buddy
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: Lost all priority because I quit chemo

Postby Frenchie's Wife » Mon Aug 18, 2014 6:59 pm

Thanks for the advice guys. The first question they asked me was if I was experiencing any pain. I suspect that lying about that would make a difference. If they asked for specifics though, I have no idea how I would describe it. They have been so good to me in the past that I am hesitant about making a fuss. I will try going through my GP first as someone suggested. We have only one oncologist for a vast area and everyone wants to talk to him so his office staff play really good defence.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: Lost all priority because I quit chemo

Postby mstults » Tue Aug 19, 2014 10:33 pm

Another tactic you could use is to blame it on chemo brain. You have nothing to lose by doing that.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: Lost all priority because I quit chemo

Postby Frenchie's Wife » Sat Aug 23, 2014 3:35 am

I actually felt a moment of empowerment when my cancer friends circled the wagons and came up with some really good advice about my predicament. Your awesome !!! Kekeg 's. Suggestion worked !! My GP got through to the oncologist and had my wait time reduced by half !!
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: Lost all priority because I quit chemo

Postby WifeOfMike » Sat Aug 23, 2014 3:57 am

Frenchie,

Go get'em!!!! Amazing how a rare cancer had to be the ticket in the doors quicker
Would it be wise to knock on a few doors- to see which one can get you in quickest? Just food for thought?!?
So use it babe! Cut in line & then milk it for all you got. I once faked labor pain- & fooled a hospital- so I KNOW you can do this

Boy what an amazing bunch of out of the box suggestions were posed here....W O W!!
And yes.... we will circle the wagons for you. We just can't shoot the Indians- because I have some in my heritage
Stay STRONG... we are rooting for you!
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS


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