Told no more Chemo and sent to discuss Pallative care

[jenny B.I.L.]

Hi all, my bil Graham has been told no more chemo by phone and sent to have an appointment about Pallative care. At his appointment he was told also that chemo would be stopping. Graham ask why, as every scan he has had he has been told his liver mets and lung mets were stable and not growing.Graham has been on irrotecan since february 12 and extrubux added in March weekly.Graham was told there was a Tumor back in his colon exactly where last one was resected, apparently been there since January of this year WTF he was never told about this tumor returning to his colon.Graham is devestated and in a state of shock. Graham actually broke down and cried today, we all did bar the grown up children they just got drunk. Graham feels like the onc have giving him a sense that he was doing well on chemo even last week his dr said how well he was doing. This is why Graham feels like he has been hit with a truck as he had no idea things were to this point. Graham asked about have tumor in colon removed and they said no as he wouldnt make it through the operation. We are just not understanding what is happening. Graham is still working is not sick handles chemo very well, the oxi did give him nuropathy, he got the extribux rash but even managed to handle that. I found is so hard to know what to say to Graham, i agreed he should of been told about the tumor in his bowel and he has a right to be angry he iwas not told.Graham is going up to hospital tomorrow, monday is his day to have chemo he is going to ask his dr there exactly whats happening and how long he has to live. Graham seemed so anxious i said doesnt mean your going to die soon, he was worrying about selling 4wheel drive sailing boat, motorbike like he has to do it right now. I told him to take a breath and just slow down take things as they come.and get more information from his own doctor tomorrow. I dont even think Graham is suppose to be going to the hospital tomorrow but he is going And on his own. I have also suggested getting secon opinion. We jsut dont know why if your feeling well why they would stop treatment. I would so appreciate any one thoughts on this, im even thinking of looking up trials. We are in Queensland Australia. Im sorry if this post doesnt make complete sense but my brain is not thinking straight.
I come on here often andf no dam well that stage 4 is not curable but managlble and yes graham would be lucky to make 5years, I just thought he would be at least sick before we got to this stage, am i naive. I do not reply very much on here maybe only a fewtimes i do read the posts though and do feel for everyone fighting this disease.Please help us make some senseof what is going on, is pallativecare same as hospice

[elise]

Hi Jenny,

I don't have answers to a lot of what you're asking but I would definitely request an appointment with the oncologist to get some clear answers about why treatment is being stopped. Doesn't sound like you or Graham have been told the whole story. Maybe once you meet face to face and are able to ask your questions, you will have a better sense of what is coming.

Stay strong.

Elise

[RixInPhx]

This is certainly devestating news for any patient, and also to caregivers and friends/relatives.
Right now there's much confusion, and it will take some time and effort to sort things out.

1. Last question, first: What is 'palliative care', and is it the same as hospice?
From the Terminology and Abbreviations page, halfway down the first page, here: viewtopic.php?f=1&t=5366 :
"PALLIATIVE CARE: It is NOT the same as hospice or "Gee, we're just going to keep you comfortable." Palliative Care docs deal with all the SYMPTOMS of cancer and its treatment. So that includes chemo related nausea, neuropathy, pain, mouth sores, etc. They can be there to provide assistance to you in every stage of this disease, not just the end game! If you have access to one, take advantage of it!"

2. If BIL is going to see his onc at hospital tomorrow for some answers, then just WHO THE FAWK called him last week, sat him down at an appointment, and gave him such awful, incomplete, and stupid information and advice???

3. They almost certainly will NOT discontinue chemo, especially since it has been somewhat effective at suppressing the liver/lung mets and thusly extending his life.
Some healthcare systems, and US insurance companies, will say, "There has been progression (the recurrence of the primary) so this regimen isn't effective and we won't pay for it any more."
To which I say, "Stopping these drugs isn't the answer; adding MORE drugs to them is the answer; find something that STOPS my disease."
That is why I'm now on the supercocktail noted in my signature, and it's what suppresses my tumors and keeps me alive.
Very, very expensive. :shrug:

4. BIL needs to speak with an oncology surgeon, preferably one who is board-certified for colorectal cancer. That's the only individual who can evaluate the possibility of additional surgery at the primary location. Rather than a resection, perhaps a permanent colostomy and removal of lower colon/rectum is feasible? I dunno, that's for the surgeon's skill to determine.
But again, the system/insurer may say, "Because of the OTHER inoperable tumors in the lungs/liver, it is not cost-effective to operate on the colon again since those other tumors will eventually prevail."

5. Your BIL has been fighting this for 2 years, about the same as me though I've had no surgery. I'm no longer working nor as strong as your BIL, so he has a lot to live for yet.
I was originally told I had about 6 months, which was then changed to 2-3 years; I've now made the 2 years, and every day is a golden bonus.

If this is indeed a point in his cancer 'journey' where 'cure' is no longer a goal, then indeed it's time for 'palliative care:' Develop a chemo regimen that extends life without undo debilitating effects, and other medications and procedures to make life comfortable.

By no means is it time to shuffle-off to a shack in the desert and just waste-away to nothing.

God bless your concern for your BIL.
HTH,
-Rick

[lohidoc]

Totally second Rick's comments here.

[Lee]

Totally second Rick's comments here.

I third what Rick said!!

I just want to add, try getting a opinion at a major cancer treatment center. I'm not sure what there is in Australia, but I'm sure there must be something in or near the Queensland area. Many times, these cancer treatment centers are on the leading edge of tomorrows technology.

God bless you and your family during this most difficult time.

Lee

[Laurettas]

I don't know if everyone defines words the same, but we were told from the beginning that my husband's care was palliative. He has undergone the same chemo as everyone else and is now 14 months out from diagnosis. Hope you can get some clarification for your BIL and you can all be on board for the next phase of his treatment.

[Ashlee H.]

Lots of good advice here. Sounds like there are a ton of unanswered questions. I'm a big believer in the patient getting copies of all their reports. Ask for the reports from the last few scans and see if the colon tumor is mentioned. A second, or even third opinion seems appropriate for your BIL.

[hopeful]

Lots of good advice here. Sounds like there are a ton of unanswered questions. I'm a big believer in the patient getting copies of all their reports. Ask for the reports from the last few scans and see if the colon tumor is mentioned. A second, or even third opinion seems appropriate for your BIL.

I second the second or third opinion. Lots of people here have benefited from more than one opinion. Ashlee is right.

[Patience]

Asking for copies of all the recent reports is worthwhile advice. The oncologists go to the [radiology/lab] reports to find out the status and progression of the patient's cancer, so by your seeing the report yourself, you should be able to form some pointed questions for the oncologist.

My husband was told from the get to that he has inoperable [lung] cancer, stage IV, and that the hope of having chemo is that it will help him to live long enough to be here when a medical break through happens. Don't give up just because the current chemos might not be a total cure.

Best wishes that you receive encouraging news from the oncologist. And getting a second or third opinion might be helpful if your regular oncologist is out of ideas.

[Gaelen]

I know that things like what gets covered by the national healthcare system vary by country, and maybe one of our Australian members can step up and speak to this. Basically, stage 4B treatment (mets to multiple organs) is or should be treated as palliative from the beginning.

No, your BIL doesn't have to (at the moment) look or appear "sick. Things can change, very fast.

Does he need to sell his "toys" - the 4-wheeler, etc? Not today, but in reality, when did he last (comfortably/safely) use the? He might eant to designate to whom they will go, and get and keep all of his affairs in order if that's not done. I stopped treatment iat the end of March, so just hosted a "Happy Hour" where I coould ensure that my toys and stuff would go to people who are appreciating it NOW (since I'm willing to admit that I'm not strong enough to use them anymore.)

Yes, the docs might hold treatment a week a week or so while things get sorted out. Not the end of the world to have a 1-week break. What your BIL needs to do is buck up during this period, get his plan in place and move forward.

As for the adult kids who handled this by "getting drunk" - that's enough of that. Doesn't help anyone - them, your BIL, the situation. If they're having trouble dealing, it's up to the more mature family to HELP them understand their feelings and manage them...not buy 'em another round!

Ashlee's advice is dead on. Get copies of ALL of his scan and blood reports. It's possible Graham was told about the recurrence via report but just didn't ask about it or didn't ask the right questions 'cause he didn't recognize the change in report language.

[jenny B.I.L.]

Thankyou all for your replies. I have update i already posted it but it dissappeared. Graham went up the hospital this morning and spoke to an Onc, his regular onc is awayon holidays and wont be back for another fortnight and ask why his treatment is been stopped,he said because of tumor reoccuring in bowel, my brotherinlaw ask to speak to head onc he was very good and spoke to graham explain things look over his scan etc and said he couldn see why Graham couldnt continue on the chemo and by 11am today graham was getting his extribux?and irrocetan.Graham was also told they will be doing scans every 6weeks now and things will be taken step by step. Graham ask to be informed of what is exacly in scan and to have a copy of the results.Graham also asked how long he might have to live, told him they could not give him an answer for that. The Onc that said for graham to dicontinue treatment had only seen graham once last week, must be filling in while his onc away. I feel he has taken it upon himself to decide to stop chemo. Moral from all this is ASK questions, get copies of your scan results, and never be afraid to ask for 2nd or 3rd opinions. I know this is long and im sorry but i need to rant now.
I went over to my sisters Grahams wife to tell her this arvo to let her know graham wouldnt be home till about 5pm as he was getting chemo. She dosent have phone doesnt believe in mobiles. She got so angry with me became abusive and said i shouldnt of said anything about 2nd opinions. WTF i dont understand her reaction. I talk to her and she said she just wants it over with she cant stand the stress anymore. She dosent believe in chemo and thinks its a waste of time and it will kill him anyway.I tried to explain to her that is what has kept Graham alive and well this far. My sister is not doing very well she is suffering depression and just dont stop working this is her way of coping.She was not emotionally well before graham was diagnosed, my brother thinks she has alzemers, she is only 56. I have tried to help my sister but she dosent or wont take it. I have gone over and cleaned house for her while shes at work to try and take pressure off her i dont even think she wants me to do that. I am feeling so scared for her also and i know graham is so worried what will happen to her if he dies. I let my sister know i love her and gave her a big hug and that i will be there for her anytime she needs me, i also told Graham ill be there for him on this journey. I know things can take a turn for the worse at anytime but just have to deal with that when ithappens. I told Graham about the replies i got from this club, wish i could get him to join. All i can say is thank God for this club and the people in it ox

[Guinevere]

Jenny,
Glad your BIL got to talk to someone else and get a clearer picture of what's going on.
I'm so sorry your sister's also having such a hard time. It's extremely difficult to ask for help sometimes. Whether it's valid or not, sometimes it feels like, when people help you, you're a failure. As I've been learning, that's not true but feelings are tricky little boogers and don't always make sense. As far as her only being 56, there are more and more people in their mid to late 50s being diagnosed with Early Alzheimers. However, it has to be diagnosed. Sometimes stress can cause a lot of the same problems. Just let her know that your helping her and Graham is a way to help you feel less helpless since it's something you can actually do. Maybe, in time, she'll see that's the case but she may not. If it's alright, I'll keep your family in my prayers.
God bless ~
Guinevere

[Laurettas]

Jenny, sounds like you are in a tough position WRT your family situation. I can sympathize in a way with your sister as the spouse. Sometimes the constant worry does get to be a little overwhelming at times and you can envision life beyond cancer even if it means your loved one dying. I hate it when I have those thoughts and they are not what motivates my actions but I do have to say that they do occur occasionally. I have a lot of responsibilities with my parents and grandchildren both living near us and sometimes I resent the time and energy that cancer takes from my life.

Am so happy that your BIL was able to talk with someone with authority and get the whole thing cleared up. Things sounded a little suspicious the way they happened but then I don't know the Australian health care system. Can't see someone being told that here in the US but then one never knows!

Best of luck to your BIL and hope a new plan is implemented soon for him to continue to fight the beast.

[Peabody5422]

Just keep pushing. My heart aches for answers- not the garbled messages. just becasue they are doctors does not make them good communicators. trust me, i have worked for some of the best orthopedics surgeons and one would forget where he was and that he had a patient! He was really smart and very good. I would let him operate on me today - but discuss NO. Make a list of questions regardless of how long it takes or what they are. Dig for the answers. At least it will help the anxiety. That really helped me going into this "mess". I learned so much on this site and from other people.

sorry so wordy. My thoughts and prayers to you all.

Age 63
dx; T1 n1c MX 11/22/11 rectal cancer
Surgery: LAR 12/12/11
Xeloda and radiation 1 - 3/12
clear scan 4/22

[RixInPhx]

Glad he's getting some clarity for some issues, and especially that chemo is continuing.

Your sister has some problems, and they probably won't get better without therapy and medication for her (which I doubt she'd consider).
Oh, well.

BUT, a major issue on the horizon is Graham's care, and who will make decisions when he cannot.
I'm sure in Australia as in US, that the spouse has automatic authority for healthcare decisions if he's incapacitated.
This isn't only end-of-life deterioration, but can be as simple as a chemical imbalance (specifically ammonia and liver issues) or a heart attack or even traffic accident.
If she were my wife, I would want paperwork in place (advance directives, medical power-of-attorney, etc.) that REMOVES such power from her distorted thought processes.
Obtain some standard forms for these directives, and perhaps conslt an attorney (solicitor?); Graham can designate you or anybody else of his selection to make these decisions for him, and specifically exclude nutsy sis.

Also consider getting authority from Graham, for his doc's to communicate reports and information directly to you; in Us there are significant privacy issues in this regard, and Australia prolly has similar.

Relative to his 'toys': He does need to make decisions, and especaily if he needs money now (seel the stuff at a good price).
But he can also just leave i in his will, either to designated individuals, or as assets to be sold/distributed.
He's probably in some sort of community-property state, so what's his is also hers.

All-in-all, even if his 'palliative care' continues for several enjoyable and life-fullfilling years, he needs to get his affairs in order with a solicitor.
* * *

I know this seems a tad morbid, but really, it's something that everybody, you included, should have in place for thier affairs.

When I was first Dx'd, I was told I'm inoperable/incurable, and the goal was palliative care.
Paperwork was immediately assembled with my sister as executor and having power of medical decisions.
2 years later I'm still kicking cancer's butt with heavyduty chemo only, and the paperwork is up-to-date should things turn for th worse, or I get hit by a bus .

HTH,
-Rick