The Grim Reaper took another swipe at me !!

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midlifemom
Posts: 1358
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Location: NJ

Re: The Grim Reaper took another swipe at me !!

Postby midlifemom » Sun May 24, 2015 7:27 am

Frenchie,
Please don't think you've disappointed any of us, on the contrary, you inspire us.
I hope you have some peace ahead of you, in whatever form you find it.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

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

Re: The Grim Reaper took another swipe at me !!

Postby Frenchie's Wife » Sun May 24, 2015 8:01 am

I am in a better frame of mind this morning. I have come so close to escaping into
the mountains, I am still reluctant to quit.

I am trying to figure out a way to stay in my motorhome and still enjoy the mountains,
even part time. I would settle for long weekends if I had too.

My biggest obstacle right now is this diabetes thing happening. That and my lungs.
Cancer I can handle.

I am afraid to go into a diabetec coma. I don't know anything about diabetes and I am
not very deciplined. It would be a bitch to survive cancer and die of diabetes !
I am sure that this is causing my brain fog.

My lungs are my other big problem. They are causing me grief lately. I run out of breath
easily and they have become painful, like a heavy weight on my chest all the time.

Then there is the bone cancer in my knee. I can't trust that leg at all.

All of the above has transpired over the past month. What shape will I be in a month
from now I wonder. Do I really want to be 2 hours away from medical attention ??

There has to be a solution that I haven't considered. I am very stubborn. I am not quite
ready to call it quits until I have exhausted every possability.
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

curious56
Posts: 166
Joined: Fri Feb 01, 2013 6:01 pm

Re: The Grim Reaper took another swipe at me !!

Postby curious56 » Sun May 24, 2015 11:22 am

Frenchie, you are in the mountains, right? Higher altitude = more difficult to breathe, even for the healthy.

I wonder.....what you have described sounds a lot like asthma. Is it possible? Steroids are used to TREAT asthma, but sometimes cause a WORSENING of asthma. Can you hear yourself wheezing? Breathe out of your mouth quickly (sort of like a sigh) and see if you hear a whistling or raspy sound. Asthma is treatable with pretty simple, low side effect meds.
dx 12/12 with CC Stage IIIB - T3N2aMO
6/18 nodes +
Resection sigmoid 12/12
Xelox 2/13 -- stopped, BAD side effects
Vegan and supplements
Clear scan 11/13
Met to abdomen - surgery 7/14
Philippians 4:6-7

bitchslapped
Posts: 1534
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: The Grim Reaper took another swipe at me !!

Postby bitchslapped » Sun May 24, 2015 12:29 pm

Frenchie, you probably have me pretty well figured out by now. I have a story to tell, not that you like my stories particularly, but I'm going to tell it anyway because...well...I think you are worth it. :wink:

Many years ago when one of my boys was a teenager he developed bone-crushing migraines as he labeled it. The doctor referred us to a neurologist. He told us something that I have never forgotten & for me, that's something. I remember his name, Dr. Larson, a white-haired , wise ol' gentleman, kind face, kind demeanor, probably close to retirement @ that time, if not past retirement. Interesting fellow, very nice to visit with. He prescribed a medication for my son w/the following cautionary statement:
The best thing you can do is stay away from doctors. They'll prescribe medications. It is difficult to tell when the actual migraine headache stops & the side effects of the medicine begins causing the headache.

Well, we can't always follow that advice & I know you like your Dex, but is it possible that Catch 22 I mentioned a few posts back has turned on you? The reason I mention it is because maybe it has run its course, served its purpose & now becoming the bigger problem. It may very well be the culprit for shortness of breath, chest discomfort from what I've read & you've already mentioned probably the cause of the onset of this diabetes you're having to deal with. Maybe even now the fatigue, dizziness. Something to consider speaking w/your medical team anyway, IMHO. If I'm going to be weak & fatigued from one disease I sure as hell wouldn't want it from the medicine & all the other crap that comes w/it. It's like, enough already!

Aside from all that, you cannot disappoint us, my friend. We are here for you through the good, bad & the ugly! Otherwise, there would be no need for this forum. I like Plan D & agree, long weekends would be a good alternative if it can be managed. You've got the alphabet to work with. :)

Best Wishes
ol' bitchslapped
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: The Grim Reaper took another swipe at me !!

Postby canadiandaughter » Sun May 24, 2015 12:55 pm

Frenchie, so sorry things have gotten worse for you. Is there any way you could change your mountain location so you are closer to Calgary? Maybe go hang out by Banff somewhere. Asthma meds with steroids might effect your sugar levels. I know dads sugar changes with the anti nausea meds he takes that have steroids. He gets up to 22 somedays, normal for him is 6 or 7. He was put on a puffer the past 3 weeks and his sugar has been a bit higher. He used to be on pills for diabetes but has been on the needle since he was 65 and finds he feels better and has more control now. Can they put you on insulin? Those needles are really not that bad at all, very fine. That might help you feel a bit better. There is also that campsite on the Alberta side, right before you cross the borders, if I remember correctly it was fairly nice. Maybe that would also be an option for you, not quite as far from somewhere as your other little hideaway. Does Pincher Creek have a good hospital? I know my friends daughter is a doctor there until Sept , but I am not sure on the size of it. I hope you can come up with a solution that works for you. You have been such an inspiration for all of us and I think everyone so badly wants you to get what you want now. It's not you letting us down in any way, its the damn disease that is being a pain in the ass right now. You have tricked it so many times, I pray you get one more shot at kicking its butt!!
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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Frenchie's Wife
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Location: Alberta, Canada

Re: The Grim Reaper took another swipe at me !!

Postby Frenchie's Wife » Sun May 24, 2015 4:16 pm

I agree with you both. I will call my pallative oncologist tomorrow .
I would rather give up Dex than deal with
all these side effects. Something new pops
up almost every day.

Does anyone know if you have to wean yourself
from this drug gradually ??

I think it is now doing me more harm than
good. A lot of my current ailments have surfaced
while on Dex. I don't think things could get much
worse without it.

Bitchslapped, your one of my favourites, I
respect your opinion and I love your sense
of humour.

I don't want to deal with this diabetis thing.
Way too much hassle. I just won't do it, period.
I am not changing my eating habits. I live on Take Out, Chinese food and pizza. I like it that
way.
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

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: The Grim Reaper took another swipe at me !!

Postby Ceebo » Sun May 24, 2015 4:59 pm

Yes, Dex definitely needs to be slowly tapered down. How much are you taking daily?
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

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Bev G
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Location: Quechee, VT

Re: The Grim Reaper took another swipe at me !!

Postby Bev G » Sun May 24, 2015 9:11 pm

Frenchie, in my pre-cancer life I was a diabetes educator for >30 years. Having crazily out of control blood glucose levels can make you feel like shit. Treatment does NOT have to be painful or too much of a hassle. I would be so happy to help you with any questions you have about it. Do you have any idea what your blood sugar level is?

Hugs to you,

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

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Frenchie's Wife
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Location: Alberta, Canada

Re: The Grim Reaper took another swipe at me !!

Postby Frenchie's Wife » Sun May 24, 2015 9:55 pm

I will get my blood checked again tomorrow.
It was 27 last Wednesday. My thirst is not
as bad this weekend, hopefully that's a good
sign.

I am on 4 mg of Dex. I am hoping that I can
ride out the diabetes until the Dex is
out of my system.

Bev, do you think that is doable or will the
diabetes stick around for months ??
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
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Location: San Diego, California

Re: The Grim Reaper took another swipe at me !!

Postby WifeOfMike » Sun May 24, 2015 9:58 pm

Frenchie,

You are living life your way, as it should be. You are not disappointing anyone here. You are inspiring them, to do the same.
So that should be the end to that line of CRAP :mrgreen: :lol:

As for Diabetes, Bev is correct. It was no big deal for us to get a gizmo with eject-able test needles which I pricked hubby's finger with 2 X's/ day & put one drop of blood onto a test strip/ hand held gizmo that gave me his test result immediately. He typically only needed one insulin pill/ day in the morning..... if he had a high test (say from drinking a jumbo chocolate milk shake & knocking his sugar into orbit), I gave him an insulin shot (in the tummy) with an ultra fine needle- & poof, the blood sugar level fell back into normal ranges. This took all of less than 5 minutes, once you get used to the gizmos. It did take refrigeration for the pills/ liquid insulin. All major drug stores carry the test strips, gizmos. I got everything, including the insulin/ ultra fine needles (an enormous box full from hospice Dr).... delivered to my door.

Yes.... his Diabetes was from Dex. YES, if you want off Dex, you have to taper the dosage. To stop cold turkey will screw you up, big time!!! No, he never had Diabetes before Dex. YES, he felt like absolute CRAP, before I pushed the Dr's to even test for Diabetes. As usual, I was the one that figured out what new hell was wreaking havoc with my dear man. They reluctantly did test him for Diabetes, after I pitched a fit. YES, I have been known to be pushy when it comes to the care of my loved ones (LOL). :twisted:

Was it a big deal to be tested, given shots, hands pricked, etc for hubby? Hell NO. He did laugh at my grimacing face when I had to give him the first dozen insulin shots :shock: :mrgreen: Did he go back to his (then normal) life??? YES. Did diabetes slow him down any..... NO. Did he have any side effects from the insulin? NO

The Dr's/ hospice team actually laughed when he skyrocketed into orbit with his blood sugar. They told me he had EARNED THE RIGHT TO EAT/ DRINK ANYTHING HE WANTED. I agreed with that one, and so we changed nothing & continued to live His life, His way until the end.

Would I do it again???? In a heartbeat.... YES.

Big Hug,
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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Bev G
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Re: The Grim Reaper took another swipe at me !!

Postby Bev G » Sun May 24, 2015 11:16 pm

Hi Frenchie. With your BS being 27 (=~500mg/%) last week it's NO wonder you felt awful. I think that the diabetes will resolve when the Dex has worn off, butt again, it wouldn't be safe to rush that (stopping Dex) How about calling your doc tomorrow and find out what the appropriate taper-off doses are going to be. If your BS stays in the 27 range, I think you should go on insulin short-term while you are weaning off the dex...not because you all of a sudden need to have perfect control of your BS...it's just that you will feel MUCH BETTER if you can get the level down to the 200s (which would still be double normal, butt you'll feel OK blood sugar wise. Most of this I believe will resolve on it's own when you are off the dex. Frenchie, your docs may have other ideas about why they think you should really stay on the steroids. If they do, taking some insulin along with them will not be a big deal. You can take your own injections, which I promise you wouldn't even feel. Then you'll have some more control and the independence you cherish.

Love you, Frenchie.

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

bitchslapped
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Location: PNW/USA

Re: The Grim Reaper took another swipe at me !!

Postby bitchslapped » Mon May 25, 2015 12:16 am

Frenchie wrote:My lungs are my other big problem. They are causing me grief lately. I run out of breath
easily and they have become painful, like a heavy weight on my chest all the time.



I'd still review the whole enchilada w/my medical team Frenchie & make a list of symptoms prioritized. Sometimes you put out one little fire & another one pops up behind you. It's a lot to keep up with & some of it may be unavoidable, but controllable.
I know the dealbreaker w/you has always been the fatigue, & diabetes can cause this, so whatever would reduce these other symptoms while managing the fatigue might be doable for you. You stated you had the diabetes, but not if you were taking any meds for it. I gathered they sent you home w/the pills & if that didn't control it, you'd have to take the shots.

If you were to call in the palliative team to get you stabilized, would they tie you to the house & barricade the doors so you couldn't take a long weekend to the mountains here & there? Can you have palliative care, stop & reinstate? I know you said Palliative Care & Hospice Care are two different things in Canada.

Could be the cancer, the diabetes, or the dex...or a little of all three.

Truth is you probably should have been on the phone immediately when this lung pain, chest heaviness began!

Let us know what you find out.
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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

Re: The Grim Reaper took another swipe at me !!

Postby Frenchie's Wife » Mon May 25, 2015 9:13 am

I will have my sugar tested again today. I will not get the results until tomorrow.

I think the Dex is responsible for my hand and leg spasms and other strange things now.

Here is something new. My face contorts into weird grimaces now. I have no control
over this. I look absolutely ridiculous when this happens. It affects my vision when when
it gets bad enough. It can last for hours. Now what the hell is that all about ????

It just has to be the Dex. Anybody have any other explanation ? Both my hands are
acting up now. Could the Dex be affecting my nervious system as well ?

I am definitely stopping the Dex. That does not mean that I can't go back on it if I become
bedridden. I want to see what happens when it is out of my system.
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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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: The Grim Reaper took another swipe at me !!

Postby Frenchie's Wife » Mon May 25, 2015 9:47 am

Mrs Frenchie has offered to take time off from her busy schedule at work to help out if
I start to spend long weekends in the mountains. She is in management and has a heavy
workload. She never takes a day off. She still has vacation time left from last year.

That might work. I can roam around in the foothills in the meantime. The two hospitals
that can deal with me in a crises would be close at hand. I may take her up on that.
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

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: The Grim Reaper took another swipe at me !!

Postby Ceebo » Mon May 25, 2015 9:51 am

Hi Frenchie,
I have been following your posts for a few months and I've been so inspired by your outlook on life and LIVING! I have been very concerned about your posts the last few days. You are having some pretty unusual symptoms! I have been a nurse for over 30 years and I have never heard of DEX causing any type of neuromuscular contortions. You can get those with various electrolyte abnormalities, ie., alterations in potassium and calcium levels in your blood and other neurological reasons. Please don't stop the DEX suddenly. It can lead to vascular collapse--not just minor things. I really think you should go to the nearest ER and get assessed. Maybe you just need some fluids and electrolytes and help with your blood glucose levels. I know that you don't want to hear this kind of recommendation, but I would feel negligent if I at least didn't share my thoughts! You mean a lot to so many on this forum and we all want to see you move forward with your dream, even though it may need to be modified a bit!--Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS


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