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

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WifeOfMike
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Location: San Diego, California

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

Postby WifeOfMike » Tue Nov 11, 2014 12:08 am

UPDATE NOVEMBER 10th
Meeting ONE with NEW Local Oncologist

Dr. H is an Excellent Oncologist/ his NP are very caring..... WE are very happy with THEM- I feel LUCKY I had the fore-site to set this up in advance (6 weeks to get HERE)
Now that hubby's care has taken a curve ball it is as if the stars/ moon/ and sun fell into perfect alignment.
Mikes records had been transferred (by me) from diagnose Oct 2012, to October 2014..... I had a few entries the past 3 weeks to get him up to speed- Nov 3rd CT scan, medications changes, steroids, etc
He is knowledgeable, compassionate, talks openly & covered a lot of ground. He was already prepped when we came in and took a ton of notes as we spoke...
ALL I CAN SAY IS WOW..... My Secret thoughts were "I Wish I knew YOU two years ago" :) :mrgreen: :)

:arrow: He is making an immediate referral to a recommended Radiation Oncologist at UCSD- (he knows him & says is excellent)
BUTT if HE not available immediately- He is pushing to the Next best available Radiation Oncologist team member at UCSD-
His office is third option- I am to call WED to his nurse IF UCSD has not contacted me by mid-day (tomorrow is Veteran's Day/ closed)

:arrow: We have follow up appt in 6 weeks- unless anything urgent comes up- such as anything necessary to assist him with side effects of Radiation- WHICH I want to research NOW
We got new prescriptions for cough syrup- he will also help weaning off steroids- seems HE does not like them either with Mike's mild diabetes issue (Steroid throws glucose levels through the roof)
He said we were going to take this one day at a time- one step at a time- see how IGRT radiation goes & proceed forward depending on how MIKE feels.
He says we have gone a great route so far- he would have recommended the exact same steps- & IF Radiation is Successful, and more trials ARE in the cards FOR Mike in the future, he will ASSIST
(I AM MAJORLY RELIEVED TO HEAR ALL OF THIS) I cannot tell you how long I have waited to hear those words from umpteen Dr's, amid many long sleepless nights, praying & hoping I was choosing the right path for my hubs.
If Trials are NOT in his future due to compromised lungs/ any health issues........ we will go down the available avenues one step at a time- QOL first & foremost and.... we now have a Confidant Captain at the helm of our ship.

:arrow: Then the conversation shifted subtly & gently to The BIG ELEPHANT in the ROOM.... I know "Jumbo" intimately.
Jumbo (or the Mortality/Reality of advanced Colon Cancer Stage IV) has stared at me daily in my research & chats, (and as most of you can Understand) one subject that Mike & I have rarely gone into lengthy detail
I think it threw Mike off balance when the DR. starting talking about end of life matters- DNR orders, hospice, palliative care etc. He said simply it is best to discuss now, when there was not urgency/ emergency facing us
I personally was impressed the Dr brought this up in meeting ONE- a very Brave move & one he handled with grace, gentleness and a great deal of compassion. This DR is a Class Act and Mike was grateful for the conversation

As I told Mike- this should have been discussed two years ago- four ONC's ago & it does not mean he is dying tomorrow, next week, next month or in 6 months- 1 yr
They are subjects we do need to discuss then put away- another check marked box will soon be off our plates regarding the IF's & WHEN the time comes- a few newly identified medical/ business I's to dot, T's to cross
He & I went deeper along these lines at home- VERY TOUGH.... but both somehow relieved we can openly discuss some of our wishes & express our thoughts.

:arrow: To top off my feelings of comfort with our new team's ability to follow through- their scheduler called tonight- following the Dr's request- to arrange an appointment for CBC's and a CEA test Tuesday November 18th

Next on agenda-
:idea: Researching side effects for IGRT radiation so we know what to expect- PLEASE chime in if possible
:idea: Lining up radiation appts/ after care
:idea: Getting my butt to our Business ASAP- so icing my foot- it has been a bitch the past 3 days (going to try to go in tomorrow)
:idea: Elephant I's and T's

A special Thank You & Hug to our well wishers,
Another BIG Brick in the Wall
Vicki & MY Mike :) :mrgreen:
Last edited by WifeOfMike on Tue Nov 11, 2014 2:32 pm, edited 1 time in total.
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

peanut_8
Posts: 2334
Joined: Sun May 25, 2014 1:31 pm

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

Postby peanut_8 » Tue Nov 11, 2014 11:58 am

Vicki, I'm so glad you have finally found an oncologist you and Mike are happy with. No one should have to go through what you have had to deal with, but it seems to happy way to often. I continue to be in awe of all of your efforts finding the best options for Mike's care. You are truly an inspiration. And then taking the time to share your experiences with us here at the CC. That has so much potential to help others in similar situations. Wishing the BEST OF LUCK to you and Mike, and as always the chickens are swinging.
peanut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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

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

Postby canadiandaughter » Tue Nov 11, 2014 1:23 pm

So glad things went well and you are both comfortable with the new oncologist! Now you need to go and enjoy the upcoming Thanksgiving holiday with your family and try for one day to not think about this nightmare!! You had mentioned how important the holidays are to you and I am so thankful that you had this appt prior to it so you can try to relax and enjoy the time with your family. Thank you so much for all that you share with all of us. I am sure it is not easy and I know from the details you write that it takes a lot of your precious time to keep us all in the loop, but it is very helpful to all of us who are on this damn journey!! Take care.
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

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 » Tue Nov 11, 2014 2:15 pm

Nobody should have to feel as alone in this as you have to find competent medical practitioners for DH. I hope this removes a brick or two from that bag of bricks you've been carrying on your back for so long. I don't know why it has taken this long to find a decent oncologist or what sets him apart from the others, but it's about time.

Hope your foot is coming along alright + DM & BIL.

XO
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

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 » Thu Nov 13, 2014 4:17 am

UPDATE NOV 13

Aside from calling & emailing the hell out of 1/2 the Oncology World trying to get an appointment locally for a Radiation Oncologist...
I have been researching Radiation & and any Nasty's we might expect.
After all I had to do Something while stuck on HOLD, waiting for lunch hour to blow by & SOMEONE to call me back :shock:

Radiation- what to expect? Seeking Advice
viewtopic.php?f=1&t=48660&p=369658#p369658

A short recap of the day:
I have been on the phone AND computer emails constantly pushing since last WEDNESDAY....... UC SD told me I needed a referral, or could NOT give me an appointment
I had TWO ONC offices (New local ONC & Trial ONC in Los Angeles AND a Radiation Oncologist from Los Angeles demanding referral for immediate radiation
Both ONC offices assured me they had faxed the referrals and were told I would be called (NOPE_ DID NOT HAPPEN)
..........AND one of these offices told me something SHOCKING.......... I frigging did NOT need a referral!!!! I am beyond pissed.....I should have been able to set this appointment Last week :evil:

SO......... so I waited.... until I could Wait no MORE & called the scheduler
I finally told the scheduler on the phone my hubby was suffering and I feared I was going to lose him while everyone was waiting for the proper paperwork-
WHAT do I need to do to get an appt? She quickly jumped........ (maybe I scared her thinking I would SUE if he went to ER while waiting)
I ALSO am guessing whoever is sitting IN that schedulers office received THREE Written referrals, follow up calls from 2 offices AND MY CALL, and decided they could not drag their feet any more or the shit was going to hit the fan :twisted:

As of 3:30 today.....
I NOW have an appointment with a very exceptional Radiation Oncologist commuting from UC SD San Diego to us @ our new ONC's UC SD satellite office
20 minutes from our home, 5 minutes from our business............ set up for this Friday 8 AM consultation and if everything goes well he will start radiation next week
I called hubs and I could hear the relief over the phone.

I am SO tired of spawning up stream- but am at the goal post on THIS step of the journey
Can I get an AMEN Brothers & Sisters.... FOR
Another Brick in the Wall
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

Asterix
Posts: 333
Joined: Wed Sep 26, 2012 1:51 am
Location: Brisbane, Australia

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

Postby Asterix » Thu Nov 13, 2014 7:12 am

Glad you got the appointment. I hope the radiation does the job.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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

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

Postby stevieb » Thu Nov 13, 2014 5:15 pm

Glad to hear things are falling into place somewhat. I wish you all nothing but the best!

Stephen
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

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 » Thu Nov 13, 2014 7:06 pm

Just ridiculous. You would not believe what I went through just to get a colonoscopy report from one doc's office to another for my DM when she had colon cancer. It had to involve me in several phone calls of: 2nd Office: "We don't have it." 1st Office: "We faxed it." 2nd office: " We never got it". 1st office: "We sent it. "Yes, we'll refax it.: 2nd Office: "Still didn't get it." 1st Office: "Yes, we can fax it again." Me to 2nd Office: "Will you pls go the the fax machine now?" 2nd Office:"Ok, we got it." Me: " OK, will you please go set on the doc's desk under his sack lunch or something." 2nd Office: "Will do."

I learned...well I don't need to spell it out. Just craziness sometimes.
Just a bunch of
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

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 » Thu Nov 13, 2014 8:23 pm

YES my favorite BITCH......

I wen thru :We cannot do anything without authorization..... to Exactly what you just relayed Multiplied by 10 days of Bullshit....... to be told.... hey you did NOT even need to do any of it... WTF!
Bottom-line he is suffering and it is getting progressively worse by the DAY.
My ONLY concern NOW is getting HIM to the goal post (over the weekend into next week)

please....PRAY, SWING A FLOCK OF CHICKENS, SEND GOOD VIBES
We have NEVER needed it more
Much LOVE,
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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