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Seeking closure and some answers

sm
Posts: 5
Joined: Oct 2013
Hi everyone,

My apologies for the long post. I am hoping that some of you can help me understand what happened to my mom or at least shed some light.

My 67-year-old mother passed away unexpecedly after only 5 months of being diagnosed with colorectal cancer with metastasis to the liver and 3 months of chemo (FOLFOX+Eribitux). She has undergone a successful total colectomy and was responding well to chemo. While no autopsy was performed, the cause of death was reported as heart failure. She had no history of heart disease, showed no major adverse reaction to the chemo and was only sick for the last 4 days before her death.

 
I am trying to understand what could have gone wrong. Could it be a reaction to the chemo? Is this expected given her condition? Any insight is highly appreciated.
 
Here is the history:
- Until Mid April 2013:
      - Occassional constipation - Nothing out of the ordinary.
      - Good general health. No illnesses apart from high blood pressure
 
- Late April 2013:
         - Admitted to the hospital with total blockage
         - Diagnosed with colon cancer (T 3 N 1a M 1) with metastasis to the liver.
         - Surgery: Total colectomy (90% of colon removed) - no colectomy bag required
         - Pathology report: Free surgical margins (nearest margin 5 cm) and only 1 out of 10 positive Lymph node metastasis.
         - CT scan: 3 hepatic focal lesions of variable sizes affecting different hepatic segments - largest 7.3x6.8 cm
 
- May 12th, 2013:
         - Discharged from hospital in stable condition (13 days post surgery)
 
- May 20th, 2013:
        - CEA: H 3.4 and CA 19-9: 19.7
 
- June 22nd, 2013:
       - CT scan: Progressive course of the hepatic metastatic deposits: Largest in the left liver lobe (segment 4b) about 7.5x7.5 cm. Newly developed lesions in the right lobe
- Late June-Sept 2013:
        - FOLFOX chemo bi-weekly with Eributex adminstered weekly. Only missed 1 dose due to low red blood cell counts
 
- Aug 29th, 2013:
        - CT scan: Relative regression in size of focal hepatic lesions seen in both hepatic lobes. Left lobe lesion measuring 4x4cm compared to 7.5x7.5 cm in previous CT scan. Small tiny nodule related to the right basal posterior aspect of the lung.
       - CEA: 1.6 and CA 19-9: 13.4
 
- Sept 7th, 2013:
       - Eributex adminstered (no FOLFOX dosage according to the schedule)
       - High spirits, feeling better than she has ever felt since the beginning of chemo, back to driving her car, contemplating going for a beach vacation for a couple of days
 
- Sept 10-13, 2013:
      - Fainted - low blood pressure, low heart beat, shortness of breath
      - Condition progressively getting worse, skin turning yellow but refusing to go to hospital claiming that it is nothing too serious
 
- Sept 14th, 2013:
      - Rushed to the hospital but unfortunately too late
 
Please let me know what you think or if have any questions about her diagnosis/treatment.
 
Thanks in advance,
 
SM
 
herdizziness's picture
herdizziness
Posts: 3479
Joined: Apr 2010

I went to the emergency room feeling poorly, the next morning I had a stent put in an artery, I was hours from death according to the Doctor, my artery (the so called widow maker one) was collapsing.  I had no heart disease problems until that moment.  We do not know what caused it, it just happened.  I was lucky my son insisted I needed to go, I figured it would just go away. It may have been From using Avastin for over a year, I will never know.

i am so sorry for the loss of your Mom, losing a mother is one of the hardest thing that can happen to you.  My heart goes out to you.

Winter Marie

sm
Posts: 5
Joined: Oct 2013

That was exactly my mother's reaction - she figured it would just go away. Unfortunately, I wasn't there to force her to go to the hospital as I live overseas. To my dad's/brother's defense, they were never warned by the doctors of the possibility of such fatal side effects and this is what she wanted.

I am glad your son insisted and that you are doing well now. I wish you the best.

SM

lp1964's picture
lp1964
Posts: 901
Joined: Jun 2013

Sorry for your loss and want to appreciate you for trying to understand the cause your mother left. You may never find the exact reason, but I think its important for the sake of closure. 

You said her sking was turning yellow. That is an indication of liver problems. If 90% of her colon was removed that can lead to electrolyte imbalance, which can lead to heart failure. Chemo can mess with your heart and liver too. So it's not simple.

I wish you the strength to deal with your loss and always remember the good times with your mom. Honor her by moving on and by having a great life yourself. 

Laz

sm
Posts: 5
Joined: Oct 2013

It now seems like a no-brainer that yellowing of the skin means liver problems and it should have been taken much more seriously.

Not sure what exactly went on and when the yellowing of the skin started since I wasn't there. I SO wish they had rushed her to the hospital a lot earlier than they did. Hard to tell if the outcome would have been different but it definitely would have given us more answers.

I wish you the best of luck in your upcoming surgery and I will be closely following your journey....

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

I am so sorry for your loss.

One of the things which might have occurred given her last symptoms is acute liver failure, which comes on very quickly.  What exactly might have caused it is an unknown.  Or there may have been something else entirely.

I know you are left with lots of questions and stunned loss.  Her treatment sounds like that which many here have had.

I hope that you and your family will find comfort in the memories you shared with her, and since there are no absolute answers you can let the questions go.

Marie who loves kitties

sm
Posts: 5
Joined: Oct 2013

but it is not so easy.

I hadn't seen my mother in a year. Her original diagnosis and surgery came so fast and I was only told about it after the surgery.

I offered numerous times to go visit but she insisted that she was doing well and would rather spend more quality time with us after she is done her first round of chemo. So based on her wishes, I booked a Christmas trip 

I honestly thought she had years ahead of her battling cancer and I can be there in 24hrs if anything comes up.

Little did I know :(

 

Lovekitties's picture
Lovekitties
Posts: 2990
Joined: Jan 2010

I can now understand about your unanswered questions and how hard this is for you.

You have to remember that no one can know the future and all our decisions, medical and personal, are made with the best information we have at the time.  Second guessing or feeling remorse over those decisions does no good and will not change things.

You honored your mother's wishes about your visit, as did your family about her not going to the hospital. 

Regardless of your absence, you must know that she loved you and knew that you loved her.

Live your life as she would have wished, with joy and happiness, and honor her memory by your actions.

Marie who loves kitties

Trubrit's picture
Trubrit
Posts: 1631
Joined: Jan 2013

Your story makes me so sad. 

If only we knew what was going to happen.

I am sorry that you didn't get to see her before she passed. 

I pray you will find comfort and peace. 

Blessing. 

RobinKaye
Posts: 93
Joined: Nov 2011

It looks like you mothers lesions on her liver were quite large, if the liver had become enlarged as well it could cause right sided heart failure. The fact that she was turning yellow says that she was probably going into liver failure and this caused the chain of events. 

Chemo can often cause tumors to break up and find their way into the bloodstream, essentially they are a clot. If a clot finds its way to the heart or lungs it can kill quickly. My husband had a mini stroke during chemo, the doctors couldn't be sure but they suspected it was a small piece of tumor that found its way to his brain. 

Were the lesions found initially inoperable?  Don't beat yourself up over what you might have done differently, the answer is probably nothing. 

Robin

 

sm
Posts: 5
Joined: Oct 2013

but my mother wasn't very open to the idea of a second surgery. The dominant lesion was definitely operable but I am not clear whether they would have been able to remove ALL the lesions or not. Some of them were quite small and in different segments.

I always thought she will come around and re-consider the surgery and in the meantime her cancer treatments were shrinking the tumors so it was all good.

Her liver was not enlarged according to her recent CT scan which was only 2 weeks before her death. But the breaking of the tumor makes sense. I didn't know that.

Thanks for the info.

Chelsea71
Posts: 1170
Joined: Sep 2012

SM

Hi. This sounds very sililar to my husbands death.  He died eight weeks ago.  His tumors were in his liver, as well.  They weren't really all that large.  But, in the weeks before is death his ALP went quite high.  He started running low grade fevers.  Fatigue, lack of appetite and shortness of breath became major issues. Doctors couldn't figure out specifically what was going on.

While in hospital trying to get it sorted out, his bp dropped really low.  For several weeks it had been lower than normal.  This day it went really low.  His liver and kidneys shut down.  We decided to stop the fight.  He had run out of chemo options.  The medication that was keeping his heart going was removed. He died 24 hours later.

They really didn't know what caused this.  I said that I did not want an autopsy.  I have spoke to several of his doctors throughout the past few weeks.  They've told me that tumors(especially in the liver) will emitt toxins.  They think these toxins weakened his heart and caused the heart failure.  I've decided to let it go.  I am not going to drive myself crazy trying to figure out why it happened and what we could have done to have prevented it.  He fought a really good fight.  He was very brave and we both tried very hard.  I take comfort in the fact that he was never in pain.  He did not waste away to nothing.  His death was quite peaceful.

Try not to drive yourself crazy over this.  I can understand that you want answers.  Sorry for your loss.

 

Chelsea

 

 

Trubrit's picture
Trubrit
Posts: 1631
Joined: Jan 2013

Dear SM

I cannot add any knowledge and know that the good people who have posted before me have more experiene, but I do want to send my deepest sympathy to you and your family. Mothers aren't suppose to die, they are supposed to live forever. 

May you find comfort and healing in the coming weeks. 

Blessings.

tanstaafl's picture
tanstaafl
Posts: 1007
Joined: Oct 2010

I am sorry for your mom's sudden passing, it hurts and it's distressing. Been there.  For a lot of reasons, you want answers and they aren't readily available or definitive.  

Ditto, about the yellow skin and the liver as an association.  Both cancer and chemo increase the chance of embolisms, heart attack, stroke and heart failure.  So do a lot of drugs.   As others alluded above, the decay of tumors can release clotting factors and toxic materials.  It's scary and yet the doctors hardly bat an eye.  Sometimes the potential good comes with other risks and side effects that are ignored or given short shrift.  In hindsight she needed to be in the hospital ER on the 10th to try to get answers.  And we've seen cases where the hospital didn't make a lot difference but only harder and a little longer.      

I hope that you always be able to remember her in her happier moments. Again, sorry for your loss.

danker
Posts: 769
Joined: Apr 2012

A sudden unexpected passing is always difficult.  My deepest sympathy! Just remember she is now in a better place-pain free.

Kathleen808's picture
Kathleen808
Posts: 2316
Joined: Jan 2009

So very sorry for the loss of your mother.  It must be difficult having so many questions.  I hope you can get some answers that will gie you peace.

Aloha,

Kathleen

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I don't have an answer for you but just wanted you to know I'm sorry about the passing of your mother.

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