Another Brick in the Wall.... **UPDATE on Hubby**

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WifeOfMike
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Location: San Diego, California

Another Brick in the Wall.... **UPDATE on Hubby**

Postby WifeOfMike » Wed Nov 05, 2014 2:36 am

AS many of you know..........
My dear Hubby has Stage IV diagnose, numerous Lung Mets and inoperable status
We veered from the typical path after having gone thru the first two standard lines of treatment, and Stivarga leaving Vectibix and Zaltrap on the table untouched.
We decided to go the ROAD LESS TRAVELED and bravely enter the Clinical Trial World. I also decided to publicly share our experiences with you.

We started our second clinical trial August 25th and it abruptly ended yesterday Nov 3rd.............
Tivantinib Clinical Trial- UPDATE- **NOT GOOD** (The last part I added yesterday)
viewtopic.php?f=1&t=47465

To start the day- 8 AM blood tests, 9 AM CT Scan, 10 AM meeting with Trial Dr, to determine whether drug was working or we move to the next trial.
Enter the trial DR......... beaming, asking if Mike felt as good as his blood work looked.
He said we would remain on trial IF no new growth or less than 20% increase in existing tumor load
He asked how Mike was feeling in regard to Trial Drug Tivantinib..... and I still stand firmly with my answer: ZERO SIDE EFFECTS ATTRIBUTED TO THE DRUG.

Then heard this.....& immediately said halt & wait for scan....
Symptoms:
Since June he had a slight irritation in his throat & a occasional cough to a persistent tickled/ irritated throat....
Just one month ago: He was just coughing- but fully functional, working 5-6 days/ week, still riding stationary bike 9 miles 3-4 times/ week- everything else normal
We have been prescribed: inhalers; allergy meds; sinus meds; cough suppressant: pills/ sprays/ drops/ syrups, with ZERO RESULTS/ SYMPTOM RELIEF
At my persistent follow up, last week I called his Trial NP, listed symptoms and she ordered antibiotics, codeine cough syrup & humidifier thinking it was acute sinus infection

He has gone down hill daily this past three weeks, and last week to this week down a mountain
Hubby is wheezing, gasping for breath, can hardly climb stairs, lost 15-20 lbs., not wanting to eat and has zero energy from coughing up a storm or constantly suppressing the cough.
WE WERE IMMEDIATELY USHERED TO THE WAITING ROOM.... AS DR WANTED TO REVIEW/ STUDY NEW CT SCAN- COMPARED TO AUGUST 11TH

waited 1/2 day then he brought us back in....after checking CT scan/ report from this mornings tests....
Then the BOMBSHELLS STARTED DROPPING......... :shock: :mrgreen:

:arrow: Said YES new growth & YES enlargement of old tumors, so he is off trial

:arrow: Immediately put him on Dexamethasone steroids 4 mg 2 x'x daily to further suppress hubby's coughing
and last night I looked up the side effects, side issues and boy am I not looking forward to any of that stuff:
Muscle loss, weight gain, moodiness, depression of immune system/ response, hot flashes, irritated stomach, sleeplessness, rising glucose levels- which endanger his newly diagnosed mild diabetes & difficulty when weaning off issues

:arrow: New development in past 2 months per CT Scan:
Tumors have now grown near airways, are now BLOCKING AIRWAYS & have COLLAPSED Mike's left lower lung.
The technical reading:
>interval increase in size of left hilary adenopathy, which is now conclusive of the left lower lobe bronchus with post-obstructive atelectasis consistent with drowned lung
>increased size of several pulmonary and pleural nodules, masses and lymph nodes- consistent with worsening disease
>Soft tissue nodules seen within the trachea at its bifurcation, concerning for endobronchial metastatic disease versus secretions

:arrow: :arrow: He said he needed to get to a radiation therapist asap to see IF palliative surgery CAN be done
He asked if we wanted to be closer to SD to do this.... and I asked what he thought
He said do both- go to who ever is quicker

:arrow: :arrow: USC (Los Angeles) radiation specialist appt scheduled this Friday Nov 7th 9 AM
I also called UCSD Radiation Oncology and they are on standby waiting referral from USC Trial DR & Radiation DR's to set up an appt locally as well

:!: TO ADD TO MY STRESS: (Because hey I apparently have not had enough crap to have met my max load) :|
At the end of last week my brother-in-law had the one in 12,000 luck to have his 8 yr old cataract surgery fubar and his retina tore loose from his eye, and has been through several procedures/laser to salvage his sight- including today
My 79 year old mom fell this morning, hit her head on concrete steps, bashed her left leg & was knocked unconscious. She got up, mopped up blood, drove herself to hospital & had 7 staples placed in the back of her skull & now has a cane to walk

Needless to say I have gone from stone cold worried/ stressed......... to panicked and sick to my stomach..........to GET YOU ASS IN HIGH GEAR & GET ER' DONE!
I am setting up all docs/ CT Scans, diagnoses, reports etc to prep for the fistful of new DR's now added to hubby's care list, including NEW local Oncologist next Monday
I am clearing my office, setting it up for easy access to transition my self into taking over my new position:
Monday I will be working Mon-Sat Managing our family owned store and tying up loose ends to transition hubby into part-time/ around his HOPEFULLY new routine of procedures necessary to salvage his lung/ save his life

SWINGING CHICKENS, PRAYERS, BEST WISHES, GOOD VIBES...... Hey send them all please :oops: :mrgreen:
I will be keeping in touch sporadically once I maintain some sort of balance, get emergencies under control, and my family peeled off the ceilings
Best wishes on YOUR Journeys
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

stevieb
Posts: 407
Joined: Sat Feb 09, 2013 12:26 am

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby stevieb » Wed Nov 05, 2014 2:50 am

Wow, prayers for all involved and for some peace!
Dx age 33
12/19/12 Stage IV liver/lung
1/14-2/28/13 Folfox
3/27/13 rectal/lung rst; temp ileo
7/11/13 liver res/ileo rev
9/30/13 - Folfox
11/13,2/21 NED
3/14 lung recur;6/16-VATS
7/14 5 bi lung mets
10&11/15 laser lung surg
2015 Colondar Model
12/15 5 lung met-folfiri
5/15 NED
11/15 2 lung mets; cryoablation
1/4/17 2 lung mets; cryoablation
NED as of 1/23/17

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

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby WifeOfMike » Wed Nov 05, 2014 3:13 am

Image
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

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

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby WifeOfMike » Wed Nov 05, 2014 3:23 am

Image

Image


When all else fails...... LAUGH
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

bitchslapped
Posts: 1527
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby bitchslapped » Wed Nov 05, 2014 3:56 am

There was no doubt in my mind that whatever you posted it was going to be very thorough. I feel like I was there w/you! I bet you hate to hear the telephone ring. Things come in "threes" they say. You've had your share of family happenings, sister. Not likely DH will get all the possible of the most frequently reported side effects of the newly prescribed steroid. Kudos on pursuing both radiology appts concurrently & hope you don't leave w/o asking who else to bring on board now or in the very near future. Can't believe DH has not been in pain w/collapsed lower lung.

WifeOfMike wrote:SWINGING CHICKENS, PRAYERS, BEST WISHES, GOOD VIBES...... Hey send them all please


You got it as soon as i hit "enter".

Plus Cyber Hugs

Bitchslapped
P.S. Yes, folks, Vicki is now officially, certifiably over the edge...sent to the chicken farm.

enter
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

Nixma
Posts: 88
Joined: Fri Feb 21, 2014 3:05 pm
Location: CNY

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Nixma » Wed Nov 05, 2014 6:04 am

Swinging lots of chickens and sending lots of positive energy your way.
42 F when diagnosed July 13
July 2013 Large tumor removed vie R hemi colectomy
no chemo
January 14 CEA doubles
Pet Lites up
Now Lymph nodes near pancreas cancerous
Stage 4 mcrc
Folfox 3/18/14
Hysterectomy 7/15/14
Resume Folfox 8/27/14

Val*pal
Posts: 860
Joined: Sun Feb 10, 2013 1:24 pm
Facebook Username: Valerie Barkus Kantner
Location: Metro Detroit, Michigan

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Val*pal » Wed Nov 05, 2014 8:28 am

Wow, you are really awesome! Your husband is a lucky man to have such a dedicated advocate like you.

I wish you both the best and will make a point of swinging a chicken when I go to the grocery store today. (Hope no one sees!!)

Sometimes it feels like you have a neon target on your back doesn't it?

I hope your mom is okay as well.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

User avatar
raym
Posts: 1263
Joined: Sat Apr 16, 2011 11:08 am
Location: South Central PA

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby raym » Wed Nov 05, 2014 9:59 am

Sorry to read this news. Hoping you can get the current issues addressed quickly!
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

janderson
Posts: 679
Joined: Tue Mar 27, 2012 11:46 am

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby janderson » Wed Nov 05, 2014 10:30 am

I will keep you in my prayers and when I put the chickens in their pen tonight i will swing one of them.
DX 10-05 stage IV
liver resection 12-05 Folfox1-05 to 7-06
Liver resection 8-07 Folfiri 9-07 to 3-08
Liver resection 12-11
Recurrence 2/7/2014, liver, chestwall mets, 16 rounds chemo
7/3/14, y90 radioembolization, steady shrinkage
12/8/14, cryoablation to liver and chest wall
6/1 to 6/26 SBRT radio surgery
7/2 more cryo ablation to right lung
7/16 lung infection drain tube installed
9/4 chest wall resection to remove 2 ribs

User avatar
jgall
Posts: 814
Joined: Wed Jan 05, 2011 9:44 pm
Location: New York City

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby jgall » Wed Nov 05, 2014 12:47 pm

So heartbroken to hear this. I'm swinging chickens. Thanks for the update.

Julia
DH Chris, 50, Dx Nov '10 Stg 4
cardiac arrest from 5-FU
Iri/Erbi, RFA, liver/colon resection, more Iri/Erbi
Oct14-Feb15 clinical trial
SIRT Apr15-unsuccessful
Stopped treatment May15
Hospice July15
Passed 8/15/15
http://www.caringbridge.org/visit/chrisandjulia

Stanfordmom
Posts: 612
Joined: Wed May 14, 2014 1:32 am

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Stanfordmom » Wed Nov 05, 2014 2:27 pm

So sorry to hear this. Swinging chickens for your DH.

You and your DH will be in my prayers!

Sha
DX 4/2/2014 at 44, stage 4, mets liver and ovaries
Mom to 2 boys
Three surgeries, HAI pump and lots of chemo
fighting!

Girl111
Posts: 234
Joined: Fri Dec 06, 2013 4:43 pm

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Girl111 » Wed Nov 05, 2014 3:10 pm

Hi

Had ur husband just had mets in the lungs ?
I was just wondering if microwave ablation was an option at all
For him ?

Tina
Dad diagnosed stage 3 cc nov 13
Bowel resection march 14
Started xeloda
1 liver met and 1 node ( small)
Started irinotecan - failed
Poss nano knife now and oxyplatin
Hope the chem works !

Teddi
Posts: 241
Joined: Thu Jul 31, 2014 1:44 pm
Facebook Username: teddimcfarland

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Teddi » Wed Nov 05, 2014 3:25 pm

Wow. I am amazed at your ability to group and regroup in such rapid succession. I would be cowering in a corner. I hope that the current storms pass and you have a new plan in place quickly. Peace and healing to your husband and family.

Teddi
47 at diagnosis
Colonoscopy, biopsy, CT, PET 6/14
Rectal cancer (tentatively) Stage III-b, MSS
Xeloda and radiation 25x finished 8/14
FOLFOX 5 cycles
Surgery 1/23/14 ~ T1N0MX ~ temp illeostomy
FOLFOX 3 cycles = total of 8
Illeostomy reversal 4/8/15
Clean scans x2, clear colonoscopy 9/15

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

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby WifeOfMike » Wed Nov 05, 2014 4:44 pm

Val*pal »
Sometimes it feels like you have a neon target on your back doesn't it?

To be truthful, I feel like my entire family has had a target overhead and it moves wherever we go :cry:
Butt I remind myself often how many others have had even worse- so I count my blessings and let it GO

Teddi »
Wow. I am amazed at your ability to group and regroup in such rapid succession.

I have learned over the years that FEAR has a tenancy to paralyze & the ONLY way out is to keep moving..... one step at a time, broken toe/ swollen foot is NOT going to slow me down

Girl111 »
Had ur husband just had mets in the lungs ?
I was just wondering if microwave ablation was an option at all. For him ? Tina

YES only lung mets for 2 yrs.... but from new prognosis it MAY now have traveled to trachea & endobronchial, and lymph node enlargement
I HAVE HAD 3 ONC's, Thoracic surgeon and proton radiation specialists (whose office does ALL procedures) all tell me flatly NO procedure is available over past two years
NOW that he has airway blockage they MAY be willing to do something palliative- otherwise you are going to see ME on the news, and I will be in a hostile takeover situation :evil:
Hubs flat out refuses to go to England or Germany

Side Note:
Hubby is now feeling vulnerable, and paranoia over knowing his lung is partially collapsed is screwing with his head- not knowing whether his breathing is same, or worsening
My brother-in-law finished last procedure on his eyes and will hopefully know how much vision has been disturbed overall, next Tuesday
My mom's knee is swollen, hurts horendously and she can hardly hobble.... it is tearing me apart not to be there (an hr away)
and the Beat Goes On...........
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

User avatar
Voxx66
Posts: 1844
Joined: Wed Jul 24, 2013 10:22 pm
Facebook Username: Michael Void Ward

Re: Another Brick in the Wall.... **UPDATE on Hubby**

Postby Voxx66 » Wed Nov 05, 2014 5:25 pm

In the end, no matter how this turns out, no one will ever be able to say you didn't do everything you could have to fight this disease. Bravo.

As to the lung issue - do you have a pulse ox meter? They are fairly cheap. I bought one as soon as it seemed I had lung mets.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri


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