Did chemo kill my mother faster than the cancer?

My dear mother passed away Sept. 23, 2011 from bile duct cancer just shy of 7 months after diagnosis. She was just 67 years old and lived a very active and healthy life style. You never would have known she was even sick. She was complaining about an uncomfortable dull pain under her right rib cage. Her internal medicine doc said "it's probably just your gall bladder". He ordered a CT scan which showed it was much more serious than "just her gall bladder". She had stage IV cancer and told she had 4 to 6 months to live. She was initially told she had adenocarcinoma of unknown origin, and was told it was slow growing. Four months later when she was so jaundice she was orange and was told it was cholangiocarcinoma. So, They had her on wrong chemo for 4 months (carboplatin and taxol) and then gemzar. After gemzar, she needed blood transfusion after blood transfusion, platelettes, and could barely stand up. How does a supposedly slow growing cancer turn an active pre-school teacher into a weak shell of the person she was in 5 months? My question is did the chemo kill my mother sooner than if she had done nothing but palliative care? Why don't doctors tell patient's that the chemo won't help and may be more harmful than helpful? I watched my mother suffer through so much and am angry that she could have been enjoying the short time she had left to live instead of enduring the horrible effects of chemo and the false hope that it would save her life.

Elisha   That is such a hard question to answer. Chemo definitely takes a toll on the body.

With my husband EC was not correctly diagnosed for 6 months and I've wondered if we had gotten him to the better hospital and drs sooner if it would have helped. At some point I guess we ahve to let it go so it doesn't torment us. I am sure our loved one would not want that for us. But that question will always remain. So sorry for the loss of your mother.   Irene

On Jul 08, 2012 1:49 PM eastwest wrote:

Elisha   That is such a hard question to answer. Chemo definitely takes a toll on the body.

With my husband EC was not correctly diagnosed for 6 months and I've wondered if we had gotten him to the better hospital and drs sooner if it would have helped. At some point I guess we ahve to let it go so it doesn't torment us. I am sure our loved one would not want that for us. But that question will always remain. So sorry for the loss of your mother.   Irene

Dear Irene,

Thanks for your reply. I am really sorry about your husband. I know your pain. I never knew real pain until cancer invaded my mom, and thereby, my family. While I am glad that her suffering is over. It doesn't end for me or my family. My 2 younger sisters and I are also forever haunted by wondering if we had taken my mom to MdAnderson, Washington University, Mayo Clinic, Sloan-kettering, or Johns Hopkins when she was first diagnosed if they would have done more to save her life or at the least extend it a few years. It was my older sister who insisted my mom go to UCLA for treatment not because it was the best, but for my sister's own selfish reasons (she lives in San Francisco and LA was just a short and cheap flight away). The rest of us, including mom lived in Memphis, TN. Later my mom said she wished she had listened to me and my other sisters and gone to a center that specialized in digestive system cancers, but by that time none would take her).

Anyway, I have read stories of people with stage IV IC who underwent whipple surgery and were cured. My mom was strong. She would have survived the procedure. Also, both of my children have the same rare blood type as my mom, both were of age of consent, and both offered to donate part of their livers to save their Nana, but her doctor at UCLA wouldn't even consider it. Of course by this time 4 months of misdiagnosis and administering the wrong chemo had passed, and therefore, it was probably too late. Nevertheless, even after the tumors has almost completely blocked her bile ducts and she was being poisoned by toxic biliruben levels of 26, he refused to insert an external drain and by-pass until I told his NP that I would take my mom elsewhere for treatment (which would mean he would not receive a cent from medicare for any prior services performed), did he agree to have his associate perform the procedure. The drain gave my mom so much relief and it worked. Her biliruben level dropped to 8 and she felt better. Then he gave her gemzar and it nearly killed her. Maybe he gave her too high a dose or she had an allergic reaction either way, it was after that first dose of gemzar when she really went downhill. The doctor knew the chemo would just make her sicker, but he let her suffer and hope rather than be honest with her and let her have some quality of life.

I am also haunted by the thought that my mom was morphined to death. I watched the hospice nurse give my mom dose after dose of morphine with a dropper every hour and then double the dose and frequency until she took her last breath. is that how everyone with terminal cancer dies in the end?

Looking for peace of mind.

That's a hard question to answer. In my opinion it may not have shortened her life but it probably did take away the quality of life that she would have had if she had decided not to do chemo. It also is very devastating that she was misdiagnosed in the beginning and was put on the wrong chemo treatments. My 58 yr old husband Joe was diagnosed with Esophageal cancer with mets to the liver and lymph nodes in Oct 2010 during an endoscopy. He looked healthy and was very active at the time of diagnosis. The cancer diagnosis came as a complete shock to us because Joe looked and acted so healthy! Within a month of starting chemo he started looking and acting sick. Coincidence???? It could be but I still think that the chemo took away his quality of life for the time he had left here on earth. Joe passed away at home on July 21, 2011. In another 2 weeks Joe will have been gone a year and I am still so haunted for all that he went through after starting chemo. Again it could be just a coincidence but in my heart I think he would have had a better quality of life without it. I am so very sorry for the loss of your beautiful mom and all that she went through after her diagnosis. Please know that my thoughts and prayers are with you. Hang onto those wonderful memories of you and your mom before cancer. She would want you to do that.

Love and hugs

JackieJo

Hi..I just saw your most recent post and wanted to let you know that its normal for all of us who have witnessed a loved ones death from cancer to wonder if we could have done more to save them. I too wonder the same thing...all the time. Originally when Joe was diagnosed we had decided to get a second opinion at Sloan Kettering in New York. We had even called Sloan Kettering to find out how to go about getting a second opinion. After Joe started his chemo here in CT we researched his  oncologist Dr S and found that he was known nationally as a top notch doctor in the field of GI cancers. We had mentioned that we may decide to get a second opinion and the Dr S was all for that. Bottom line..Joe was so comfortable with our CT oncologist that he decided not to go to Sloan Kettering. As they say hind sight is 20/20. I wish with all my heart that we had sought out a second and a third opinion. The third opinion would have been in Boston. We were lucky to live on the East Coast and have top notch cancers hospitals withing a couple of hours in either direction from our house. How I wish I had pushed Joe to go to NY and Boston. I wonder if he might still be alive today had we done that. I try not to beat myself us with the "shoulda, woulda,couldas". Sadly its too late now anyway. As for the pain meds given to your mom at the end. I kept Joe at home and we had hospice come out for an hour 2-3 times a week just to check Joe's vitals. On the last day of Joe's life he had become extremely agitated when the hospice nurse was here. It was decided to have a nurse here over night with me in case he became aggressive. They were afraid I wouldn't be able to hold him down if he tried to get out of bed. I agreed. When the nurse arrived that night she started giving him a lot more pain meds that I was doing. I'm in the medical field so I was able to administer Joe's pain meds when needed. I kept asking the nurse did she think he really needed that much medication. She thought it was warrented. In my state of mind I just excepted that. Keep in mind I had been up almost constantly for 6 weeks prior to Joes passing because he used get restless at night and afraid to sleep. I had to stay up too because he was wandering around the house and I was afraid he'd fall or injure himself if I fell asleep and didn't hear him getting out of bed. The nurse woke me up at 5:05 am and told me that Joe was actively dying and to call the family together. Joe took his last breathe...with me by his bedside... a few minutes later on July 21,2011. I still think that the amount of pain meds the nurse kept giving him all night hastened Joe's death. He probable would have passed away that day or the next anyway and he was suffering so maybe that was a blessing in disguise. I have such mixed emotions about that. On one hand I wanted Joe with me as long as I could have him but on the other hand it killed me to see him suffering.It 's been 11.5 months and I am doing better then I was but I still have a long way to go as far as being accepting of Joe's death. I can now look at pictures and remember our good time before cancer without crying my eyes out. I still have times at least 4 or 5 times a week where out of the blue something will trigger a thought or a memory or I will hear a song that reminds me of Joe and I have a major meltdown. The pain will never go away but hopefully my coping skills will get me to where I can smile on the outside even if my heart and soul are shattered on the inside.

I am praying that all of us here on CC find peace and comfort in our hearts soon. Our loved ones would not want to see us hurting because of their passing.

Love and Prayers

JackieJo

On Jul 08, 2012 6:54 PM JackieJo wrote:

Hi..I just saw your most recent post and wanted to let you know that its normal for all of us who have witnessed a loved ones death from cancer to wonder if we could have done more to save them. I too wonder the same thing...all the time. Originally when Joe was diagnosed we had decided to get a second opinion at Sloan Kettering in New York. We had even called Sloan Kettering to find out how to go about getting a second opinion. After Joe started his chemo here in CT we researched his  oncologist Dr S and found that he was known nationally as a top notch doctor in the field of GI cancers. We had mentioned that we may decide to get a second opinion and the Dr S was all for that. Bottom line..Joe was so comfortable with our CT oncologist that he decided not to go to Sloan Kettering. As they say hind sight is 20/20. I wish with all my heart that we had sought out a second and a third opinion. The third opinion would have been in Boston. We were lucky to live on the East Coast and have top notch cancers hospitals withing a couple of hours in either direction from our house. How I wish I had pushed Joe to go to NY and Boston. I wonder if he might still be alive today had we done that. I try not to beat myself us with the "shoulda, woulda,couldas". Sadly its too late now anyway. As for the pain meds given to your mom at the end. I kept Joe at home and we had hospice come out for an hour 2-3 times a week just to check Joe's vitals. On the last day of Joe's life he had become extremely agitated when the hospice nurse was here. It was decided to have a nurse here over night with me in case he became aggressive. They were afraid I wouldn't be able to hold him down if he tried to get out of bed. I agreed. When the nurse arrived that night she started giving him a lot more pain meds that I was doing. I'm in the medical field so I was able to administer Joe's pain meds when needed. I kept asking the nurse did she think he really needed that much medication. She thought it was warrented. In my state of mind I just excepted that. Keep in mind I had been up almost constantly for 6 weeks prior to Joes passing because he used get restless at night and afraid to sleep. I had to stay up too because he was wandering around the house and I was afraid he'd fall or injure himself if I fell asleep and didn't hear him getting out of bed. The nurse woke me up at 5:05 am and told me that Joe was actively dying and to call the family together. Joe took his last breathe...with me by his bedside... a few minutes later on July 21,2011. I still think that the amount of pain meds the nurse kept giving him all night hastened Joe's death. He probable would have passed away that day or the next anyway and he was suffering so maybe that was a blessing in disguise. I have such mixed emotions about that. On one hand I wanted Joe with me as long as I could have him but on the other hand it killed me to see him suffering.It "" target="_blank" rel="nofollow">http://suffering.It " target="_blank" rel="nofollow">suffering.It 's been 11.5 months and I am doing better then I was but I still have a long way to go as far as being accepting of Joe's death. I can now look at pictures and remember our good time before cancer without crying my eyes out. I still have times at least 4 or 5 times a week where out of the blue something will trigger a thought or a memory or I will hear a song that reminds me of Joe and I have a major meltdown. The pain will never go away but hopefully my coping skills will get me to where I can smile on the outside even if my heart and soul are shattered on the inside.

I am praying that all of us here on CC find peace and comfort in our hearts soon. Our loved ones would not want to see us hurting because of their passing.

Love and Prayers

JackieJo

dear jackie,

Our stories are so very similar. My mom had an appointment scheduled to see a specialist at MdAnderson 2 weeks after she was first diagnosed with "cancer of unknown origin" in Memphis but she thought 2 weeks was too long to wait since my sister told her she found a doctor at UCLA that would see her in 3 days (which was a lie. She waited 2 weeks to see that doctor too) so she cancelled the appt with Mdanderson (what a mistake that was) so I know exactly how you feel.  i try so hard to remember my mom as she was before she was sick, but feel guilty for always telling my mom not to give up hope and to keep fighting because the reality of what we all knew would happen was too painful to face. When my mom was in LA she told me she didn't want to go home in a box. I promised her I wouldn't let that happen, but that is exactly what happened. 3 days before she passed away she said she wanted to come home. She wanted to die in her house with her cats and in her own bed. I had made the flight arrangements for my mom and sisters to fly home that same day. but my older sister told the doctors not to sign a release to let her fly home and so they didn't. I wish had told my mom to try to get on that plane without that damn letter from the doctor. 

I will have to live with that guilt forever. 

Elisa620 

on the sibling side of things. You sound like you had quite a tough time. My older siblings were not good with my husband, and time will just have to pass until some of those wounds heal. I don't know if it helps you, but of my four members 2 made it home to die and the other 2 died in the hospital. I almost lost my husband on one of the hospital transports. We were going to head home, but the transport ride would of been tough. we had been home and I could tell he was in too much pain for me to keep him comfortable. So he did die in the hospital in a hospice room with all of us with him and his priest.

We do what we can, it is so hard to think of the good years instead of the horrible year of his death. But I feel I owe it to him to focus on the lifetime of good years.

Hi

Sorry to hear your story, I lost my Mum just over a year ago to cancer 2 months from diagnosis to death and my Dad 2 years before 6 months from diagnosis to death.

Dad had lung cancer, he started chemo, the first couple of sessions were hard for him, as the chemo hit both bad and good cells.  This was what was expected.  His 3rd session of chemo (dad had chemo every third week) we saw him grow stronger, fatter, happier, healthly, driving again.  Then Dad's heart rate doubled.  He said he felt ok and looked ok.  but last course of chemo delayed for a further two weeks.  Had last session, went back to get results. Not worked.  He was offered Radiotherapy and started the week after for 3 days.

First day Dad was rushed into hospital later in the evening as his heart beat was so eratic, we thought the heart monitor had broken.  It was like someone typing in numbers between as low as 52 all the way up to 170 ish into the machine.  It was horrendous to realise that was my Dad's heart. 

Dad's heart was regulated, he was made comfortable and medicated. 

But the medication caused other fatal problems if he continued with it.  Catch 22 if Dad's heart problems weren't medicated he would die but if Dad continued with his medication, he would die.

He passed away a day later, heart failure first.

So from what I could gather, the lung cancer did not kill him, or it wasn't the primary cause of death. 

So if it was his heart, then what caused his heart to fail? His treatment for his cancer is the only possible answer I can come up with.

If I think about it it would drive me insane trying to figure everything out in my head.  So I don't think about it.  Ultimately driving myself insane looking for answers would only make me ill myself and not bring my Dad back.

My Mum was different again, the chemotherapy excellerated my Mum's cancer and speeded up the time of death.

After chemo, my Mum went from walking to the toilet herself from her bedroom (not far) to having a catheter fitted in 6 days.  And it never just happened overnight, Mum endured the slow painful decline little by little. 

When I say slow, It seemed like forever to my Mum. After spending 5 days struggling to try and do as much as she had the day before, Mum was exhausted. 

A week later Mum had Died.  I thought my Dad died quickly (6 months), but 2 months?  2 months seems more shocking because the Doctors, Nurses etc etc all use 3 months, 6 months, 9 months etc etc as their guidelines when discussing sensitive issues. 

Maybe my Mum's chemo did speed up her death, I don't know. What I do know is, that my Mum wanted to fight her cancer and she fought like ten men to get chemo.  The chemo then made it impossible to continue with that fight.  If the chemo wouldn't have fast forwarded Mum's death, she would have had to endure the same suffering but over a longer period of time.

I am in a way relieved that the chemo moved things along, Mum didn't have to suffer any longer than necessary then.

Hope this helps a little.