Thing are getting worse..Questions???

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ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Thing are getting worse..Questions???

Postby ebv60 » Sun Jul 02, 2017 3:06 pm

Hi Everyone …….Caregiver for my wife, well it`s going on 5 years now for my wife and the Dr. appointment last week did not bring good news again, the cancers continues to grow and he said he doesn’t have again more treatments to offer her. (he is checking with Mayo on Clinical Trials) I don’t post much but read every day. She has tumors in the lungs and liver. The Dr. give her very limited information on her condition, his standard statement is “the tumors are growing” nothing about size, where they are, what`s down the “road”?? but she doesn’t ask for more information either. She doesn’t want a lot details either, so I remind quiet and do not ask question out of respect for her. I do see the Scan reports on line so I do get some information but it`s hard for me to figure out sometime with a the medical terms
So my questions:
I think the Dr. should be should be forthcoming with more information given her condition now? How much time is left, tumor size? General what is expect down the road and yes I know he doesn’t have a crystal ball to predict the future but she has been his patient now for 5 years so he has to have some idea, last January at an appointment when the CT scan showed that tumors were growing, my wife ask “well what kind of time frame are we talking? Do I need to get my thing in order”? Not much of a response from him.
Have you found the Doctors avoid this type of Questions??
Also as I have said that my wife doesn’t want a lot of details and doesn’t talk about her cancer much, she give very limited information to our sons and daughter. Should I tell them she has run out of "standard" options?? She has said nothing about her wishes (the tuff questions) the type of care at the end, funeral??
How have you handle these situations??
It been a long 5 years to say the least, I have gone with her to all her appointment and Chemo
Thanks` for listening
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

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ANDRETEXAS
Posts: 654
Joined: Fri Feb 14, 2014 11:01 am
Location: Austin, Texas (University of Tennessee alumnus)

Re: Thing are getting worse..Questions???

Postby ANDRETEXAS » Sun Jul 02, 2017 4:38 pm

I know the two of you have been through a lot. Generally, patients are asked to sign a form indicating who else they wish to discuss their medical information with. If your wife didn't, ask for one for her to sign. In your situation, I would then ask the doctor to go over all the details of your wife's prognosis and possible clinical trials. Your wife does not need to be at that meeting unless she wants to. At that point, you can discuss with your wife's doctor the prognosis and trials available. I have a friend with Stage 4 rectal cancer who was tried a clinical trial, but the most effective drug for her so far as been stivarga, which she is back on now. I see that your wife has been on stivarga, but it's good to discuss other possibilities with the doctor. At this point in my life, I am no longer meek in my discussions with doctors. I want to know what's going on and what I could do. I find that the more information you have, the better you can make informative decisions. Best of luck to you. Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

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betsydoglover
Posts: 978
Joined: Mon Aug 14, 2006 2:31 pm
Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Thing are getting worse..Questions???

Postby betsydoglover » Sun Jul 02, 2017 5:52 pm

Andre has some good points. But it is your wife's disease. If she truly doesn't want to know/discuss details, then you can't make her do so.

As my oncologist once said to me a long time ago "I don't do hallway conversations" - if spouse 1 asks if spouse 2 is dying, then spouse 1 needs to talk with spouse 2 so that they can both ask the question. Talk with your wife and if she will allow you to talk to docs on her behalf, then she can sign something and that's great. But if she does not want to do this, then that is her right.

Wishing you the best,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

PainInTheAss
Posts: 668
Joined: Tue Jul 02, 2013 3:08 am

Re: Thing are getting worse..Questions???

Postby PainInTheAss » Tue Jul 04, 2017 6:41 pm

My ex was told last summer that he had three to six months to live by three different doctors. He told our kids, and they were devastated. But the doctors were wrong. His chemo started working unexpectedly and he has been stable (I guess chemo for his kind of cancer is usually ineffective). This is a good reason why doctors are reluctant to give time frames. There is one poster on this board who was given a year to live, quit his job and did his bucket list and he is still here 10 years later.

You really need to talk over with your wife about what you want to tell the kids. I think just letting them know the chemo stopped working and that you are looking into clinical trials is enough. I really think kids should be spared grief until death is imminent after watching what my kids went through. They are still in denial about how long he will live now, but that is fine with me. Let them hope (my Oncologist told me that his chemo usually only works for a year when it does work, but I have not told them that). What can that hurt? They don't need to worry he "might die" now when he is not actually dying. But as far as timeframes or "what's next," no one really knows. You shouldn't try to force her to "face it." Let her enjoy each day that she does have without clouding it with your worries and fears. I really don't see the need for some secret meeting with her doctors when there is no possible way that can know what will happen in her case. Experience does not make them accurate about individual situations. The best they can do is guess.

From what I have seen, when there are no further options or clinical trials, the patient is referred to hospice. Hospice can mean as little as a number to call for pain meds to keep her pain levels manageable. She can still live at home and function fairly normal for years, even, in this kind of situation. Hospice does not mean being on your death bed. If they aren't talking about hospice yet, then they may be looking into clinical trials.

Try to stop looking so far into the future and just focus on each day. I think that is what she is doing, and you should follow her lead. There is no good that will come from worrying about something that hasn't happened yet (her dying) and trying to get everyone in the family to worry about it, too. They will all face it when they have to.

I'm so sorry you are going through this.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Thing are getting worse..Questions???

Postby jhocno197 » Wed Jul 05, 2017 11:44 am

If you need to know, but your wife doesn't, I would ask the doctor when she isn't there. That is what I had to do, because my husband didn't want to know, but I am the type of person that needed to know.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

MissMolly
Posts: 645
Joined: Wed Jun 03, 2015 4:33 pm
Location: Portland, Ore

Re: Thing are getting worse..Questions???

Postby MissMolly » Wed Jul 05, 2017 1:38 pm

ebv60:
My personal opinion is that families fare poorly when having to make end-of-life and supportive care decisions during a health crisis. The time to form end-of-life care decisions should not be postponed until a crisis precipitates the need for such decision making.

As a physical therapist, my speciality was working with severe head and spinal cord injury. Families were often pulled apart in different directions when they were forced to make decisions for loved ones without an advanced directive. Chaos and confusion was a common thread.

I have in place an advance health care directive/proxy, Living will, and durable power of attorney. I also have final disposition plans made for cremation and organ donation.

I would encourage everyone to take the time to have their legal documents in place for loved ones to access in case of a life-threatening health situation - including the healthy and able bodied as well as those facing a life-affecting illness.

Legal documents:
1. Advanced health care directive and POLST form
2. Living will
3. Durable power of attorney

Having legal documents in place and discussed ahead of a crisis allows for thoughtful decision making and planning and less stress to surviving family members.
- Karen -
Dear friend to Bella Piazza, former Colon Club member (NWGirl).
I have a permanent ileostomy and offer advice on living with an ostomy - in loving remembrance of Bella
I am on Palliative Care for broad endocrine failure + Addison's disease + osteonecrosis of both hips/jaw + immunosuppression. I live a simple life due to frail health.

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LPL
Posts: 651
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Thing are getting worse..Questions???

Postby LPL » Wed Jul 05, 2017 4:09 pm

jhocno197 wrote:If you need to know, but your wife doesn't, I would ask the doctor when she isn't there. That is what I had to do, because my husband didn't want to know, but I am the type of person that needed to know.

Hi ebv60,
Just like jhocno197, I have this need of asking questions - checking, to make sure everything that can be done is done. Also I belive it is hard to not show worries and fears on the outside if your inside is filled with questions. Maybe you can send your questions via email or phone the doctor?

Wishing a good Clinical Trial is found for your wife !
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED->Jan-19 mets to lung NED again Oct-19 :)
:!: Steroid induced hyperglycemia dx after 3chemo
Surgeries 2016: 3/18 Emergency colostomy
5/23 Primary+gallbl+stoma reversal+port 9/1 Liver mets
RFA 2019: Feb & Oct lung mets

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Thing are getting worse..Questions???

Postby ebv60 » Wed Jul 05, 2017 8:26 pm

Thanks very much everyone on the replies...

I `am a planner so helping to know what`s going on does help me cope with the situation some what and I know that some of the information may not be the most accurate . My wife is waiting for a return call from the Dr. to see what is available to her?? I will wait and see what`s up next before doing much more asking to her or the Dr. We do have power of attorney ,she has no living will .It did take several months of asks to get her to do her will, but its done now

Painintheass: I probably should have mentioned that the youngest of our kids in 40 and one is an attorney and I will let them know small details as you recommended
. I understand about living each day to the best and yes doctor have no crystal ball, and the miss both ways , but she did ask him.

MissMolly: It has been on my mind for sometime now about having to make end-of-life and supportive care decisions during a health crisis. I will see what the Doctor offer for the next treatment?? but we will have to have "that talk" eventually but I was hoping she would come forward first???

I will post when she hear from the Dr. about what`s next

Thanks again for all your help in this terrible time in our life's
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17


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