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Near the end? I need advice.

lovingdaughterinca
Posts: 5
Joined: Feb 2012

Hi everyone,

I haven't posted anything for months. My dad was diagnosed with Stage 4 Esophageal Cancer in Feb (7 months ago). He's done treatment after treatment with different cocktails of chemo. He has a kidney stone the size of a large olive and gall stones now. The chemo is working - it fixed the esophagus, but his liver is still covered by 20% of the cancer. And there's an unknown spot on his lung now. Technically, he started with esophagus cancer.

He doesn't sleep at all. Naps on and off all day, and he is very depressed right now. So much, his seratonin levels "were off the charts" his dr said this week, so they have him on depression meds. He is 70 yrs young.

They live in Little Rock, Arkansas, and I am here in California. It is so painful that they are so far away. :( All I have is my email and phone to stay connected.

He is 5'10" and 151 lbs now. He's always been in the 180-190 range. My mom says he getting more pale.

His health is declining some because of the effects of the cancer and the chemo: Continue with treatment or stop treatment and concentrate on healing the side-effects of depression, fatigue and feeling "blah", for a higher quality of life. He's choosing treatment. They gave him an Ativan to help with depression. Vibryd, to take regularly if wanted.

Medical Marijuana is outlawed in the state of Arkansas, so he can't take that. I don't know why they moved there, so don't ask. :)

Can anyone give any advice or thoughts as to what is right? Continue with chemo or just be more comfortable without? He feels awful. Is the end near for him? Or is there HOPE that he might be able to power past this ugly cancer, and get better?

Honest, friendly thoughts welcome. :)

Thank you all for your support,
Loving daughter in California.

Starlight11
Posts: 8
Joined: Sep 2012

Hello, my mom is at the same place where your dad is right now. The difference with me is I live with my mom, take her to treatment, care for her and see to all her needs. It is tough to be apart I know. I lived in Colorado and as a single mom moved my son and myself in with my parents to help the family get through this health crisis. My mom is close to your dad's age. After so much chemo, the cumulative effects are creating quality of life issues for her as well.

I was advised by others to tell my mom she should determine what she is willing to tolerate. It's her decision and her life and I will support her but the chemo also does damage and she has to set a threshold. She decided to continue chemo. I think the anti depressants are helpful and am glad your dad is on it. I think it can be overwhelming otherwise.

Is there hope? There is always HOPE! Where would we be without it? There are tons of stories of those who outlived their prognosis, and a positive attitude is good for everyone. So a healthy dose of hope and an anti depressant and support and love from you and other family members are what your dad needs to get through this difficult time.

I wish you and you and your family the best!

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

My dad is also Stage IV. He had to take a break from chemo altogether, but before he stopped, they lowered the dose. I'm sure if he feels crappy, he would be depressed! It sucks to here this news, BUT there is ALWAYS hope! He will feel better if he takes a break. Ultimately, it's his decision, though. I will pm you.

~Jayme

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

Hi, Continuing treatment has to be up the patient. I know from going through chemo, I want quality. I feel as if I was in limbo for a year. I was so limited on who I was in contact with, I feel I lost a year with my young grandchildren. My counts stayed so low I couldn't be around them very much. Then when I was I didn't really feel like being.

I know it is hard. As caregivers we want to fix things.

Prayers, Sandra

jim2011's picture
jim2011
Posts: 116
Joined: Sep 2011

i remember taking the ativan when I got up from bed and it made me drowsy so I would sleep off and on all day. I didn't want that so I spoke with my oncologist and she suggested I try changing my dosage and that worked. The important thing (for me) I felt is trying to get on a schedule. I used Ambein to sleep all night and have learned to get up when I wake up. Whatever works for your dad at this point. Open and honest communication with his oncologists. I wish your family the best.
Jim

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Perhaps you can suggest to the family who surrounds him to talk candidly about his options. Your dad is the only one who can make decisions on treatment/care right now. I talked at length with mom about continue with additional rounds of chemo/rads when her initial treatments didn't work. She opted to continue. Her new drug would have been Erbitux, but she opted to stop all treatment before her 3rd internal radiation treatment, thus chemo stopped too.

She had a concurrent dose of 5FU via PICC line 24/7 pump along with radiation. Then we waited for the tests, then she opted to do an additional chemo and internal radiation. That's where she stopped.

Everything was up to her we gave our opinion then our support.

paul61's picture
paul61
Posts: 1104
Joined: Apr 2010

As a cancer survivor I have given some thought to what I would do if I had a recurrence and had to decide if I should go through chemotherapy again. I think all cancer survivors have lain awake a few nights, particularly when they are not feeling well, and wondering "is this cancer returning", and thought what would I chose to do if I had to decide about chemotherapy again?

I have made myself a list of things that; if I lost my ability to do them because of the effects or treatment, I would opt to discontinue my treatment and enjoy as best I could the time I had left. As an example they include basic things like:

- Feeding myself
- Taking care of my personal hygiene
- Being able to move around on my own etc...

They also include things I love to do like:

- Being able to enjoy a walk outside
- Going out to breakfast with my wife
- Reading books and listening to music

It may be helpful to have a discussion with your Mom and get a sense of where your Dad is on doing the basic things and the things he loves. If chemotherapy is interfering with those things then it may be a good idea to encourage a discussion with his oncologist about the objectives and expected outcome of the treatment he is receiving.

Of course when to move from chemotherapy with remission intent, to palliative treatment, is a very personal choice and only your Dad can make that decision. But helping him evaluate his quality of life may help him decide.

Of course depression is common for patients in cancer treatment and there are some pharmacy based interventions that help, but if a person is existing or worse yet suffering rather than having any quality of life it may be time to change approaches.

Of course this is my perspective, your Dad may have a different perspective.....

Food for thought

Best Regards,

Paul Adams
Grand Blanc, Michigan

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Amjosmom's picture
Amjosmom
Posts: 231
Joined: Jun 2012

Brought a tear to my eye, Paul. It's amazing the things we take advantage of in life. My Pop is Stage IV and just the time we spend together enjoying a meal is a blessing. I thank God every day he wakes up able to enjoy another day!

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

First I believe there is not right or wrong (I know you have heard that many times) but it't because it's true.

Is your Dad taking treatments to stay alive, bc he is afraid to die, really wants to live, or is he doing it for some other reason...My Dad was a perfect healthy 73. We all joked (since we had never known him to even have a fever) "Dad, you will outlive us all" BAM! Get a call dad is very sick in the hospital ..we assume he will be out soon, 10 DAYS later they tell Dad he has acute Leukemia...may 30-45 days left with no efforts to save.

Dad was all about just riding it out, but mom had other ideas (which of course is understandable, mom and dad had been married 50 years)...she wanted dad to fight, dad agreed to fight for mom, but he made it clear he would not go too far to the "this is crazy side"

Almost 90 days later I get the call dad is not doing well, come home now. I travled 2200 miles to dad. He had been asking if I was there yet, took me almost 2 days, and when I arrived he wanted me to do 3 things for him (I was shocked at my dads appearance too I might add)..dad motions me over to his bed and says 3 things I need from you "Yes Sir" I responded (Southern thing) ..he said 1. Get me home, I don't want to die in the hospital .

The other two items had to do with mom and finances...

My brother also died that same year of cancer (tumor in the brain) just a few months before dad died) We had 14 months with my brother from dx. My brother joked about it all the time...he insisted me, my wife and children come see him months before he died bc he did not want the kids (he loved my kids) to see him in the shape heknew he would be in...I remember him telling me "I'm reaady to go if I need to, sure I would like to stay around, but I'm good"

Less than one year later I get dx with Stage III base of tongue....my wife and children were beyond devasted ...my kids are ages 2-13!!! My two oldest really were scared as was my wife...I did not ask why...but I did determine in my heart that I would fight like a rabid dog to see my kids one more summer, then it became to see them out of highshcool then it bacme to see my daughter marry....I just could not leave them...they were my best firends buds and we spent so much time togeether...

you see...in my opinion any reason a person choses to get or not get treatments is up to them, what really helps the family is for that person to be able to explain why, which in turn helps us to help them....so a frank and open discussion asking your loved one if you can ask some questions migh be in order. This will help you to understand...and just maybe allow him to share some fears, worries or reasons why he is choosing as he is.....

I whispered a prayer all will go well and all will have wisdom.

I am now 9 months past my last rad, 2 recent scans show me NED and I just finish cutting a cord of wood in the Idaho forest for the winter and did so with my 11 year old son...to see his face and spend time with him I did not have ...I am truly thankful to the Lord and all the docs / family who helped me through..

I whispered that prayer just before hitting the post button

Best,

Tim

lovingdaughterinca
Posts: 5
Joined: Feb 2012

I couldn't figure out how to find my discussion board, but after 10 min of clicking around, I found it, and I was happy and thankful you all responded. No new news, just keeping HOPE and on with the chemo.

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