Not Ready to Give Up? Start with Knowledge.

Sara commented on a recent post that her father has leukemia, and "they can't do anything more to make him better. Medically speaking, we're supposed to give up. How do you do that? Just give up? How do you give up on someone who from all outward appearances is healthy and strong? How do you accept the ending for someone who eagerly anticipates so much more life?"

The short answer is this: You don't. A more useful answer will take me a few posts to explain. Let's start with my first step to Healthy Survivorship: knowledge.

You have two choices: (1) Accept the news from his oncologist that he has no more treatment options or (2) seek out other reputable physicians who may know of viable options for him. Especially since your father is otherwise healthy, it is worth doing some research with the help of his current oncologist, national cancer and research organizations and leukemia-specific organizations.

See if you can find any clinical trials that are open. Thanks to the Internet, much of the preliminary research can be done from home. If you find out about a promising study, your oncologist (or his or her office) may be able to help you determine if this is an avenue worth pursuing. Many times, you can talk with the office of the researcher, if not directly with the researcher. Even if your father is not eligible for any trials, the contact with leukemia researchers will help you feel confident that you are not leaving any stones unturned. You may find out about a promising "off-label" treatment regimen.

Researching options won't offend his current oncologists and won't commit him to any treatment. This just gives your father some choices, one of which is to decline further treatment for now. 

Sara, the challenge is knowing when you have enough knowledge. Some patients never look beyond their trusted, primary oncologist and miss opportunities for improvement. Others patients look too hard, ignoring consensus among reputable clinicians and researchers that no worthwhile treatments are available now. These patients are not Healthy Survivors, because they end up spending what's left of their good-quality time going for twelth and thirteenth opinions or pursuing worthless treatments.

I suspect you've already done some of this research. In my next post, I'll begin talking about finding and nourishing hope when you have no viable treatment options at this time.

Comments

[Lisa Thompson]

Sara, Wendy makes some excellent points here. You may also wish to pursue some alternative therapy if conventional medical treatment is no longer an option.

My mother-in-law has been taking morphine to relieve pain associated with her colon cancer. However, concerns about morphine's side effects on her organs have driven us to suggest acupuncture to help relieve pain. If your father is in pain, he might also explore acupuncture.

[Wendy S. Harpham, MD]

To clarify Lisa's comment: I think she is referring to "complementary" therapies, which are treatments used in conjunction with conventional therapies. They are not used to get rid of the cancer, but to help the body recover from treatment, stay as healthy as possible, or to relieve pain, stress and other side effects of illness.

For the record: No alternative cancer therapy has been proven effective against cancer.

I discuss conventional, investigational and alternative therapies at length in Ch. 6 of Happiness in a Storm. On page 163 I provide a clear table that compares their features, side by side.

With hope, Wendy

[Sara Huizenga Lubbers]

Thank You!!!

You are so insightful and wise, it is so true, we now more so believe that my Dad's sole oncologist is coming from a stand point of a "cure" and by doing so is not willing to look at or consider his desire for more time.

We were not told of palliative care, of low dose chemo of radiation, no options given...when a 2nd opinion was desired, it was answered with "don't second guess me" response...

Finally now my parents realize how much this physician is controlling his life, no doctor should talk someone out of a 2nd opinion, right?

Today a palliative doctor did come, I found out about their existence on the internet. His first remark was that my Dad was the healthiest looking AML patient he'd ever seen.

Tomorrow, we need to act quickly, my Dad wants to try the low dose chemo pill, if she will not prescribe it, we intend to ask for a referral to someone else.

Time is of the essence, not sure how to go about this all, at all...whether to try to get prescription from her before finding another doctor or going to another doctor prior to a prescription (which could not be as well thought out) from her.

I so appreciate you answering me, I am forever grateful as is my Dad and Mom...xoxoxo

[Sara Huizenga Lubbers]

The Hydrea (low dose chemo) has been prescribed! They are delivering to my parents' door yet today!

Also was contacted early this morning by my best friend from college, she used to work under the head of leukemia research at the University of Chicago, and she got us (most likely) in! We are faxing my Dad's treatment history record, thank you, TAMI!!

praying that things will continue to move forward...

THANK YOU, WENDY!

Will keep you updated...here is the blog I made for my Dad...
http://papamore.blogspot.com

wow, God...he's still in the miracle business

[Wendy S. Harpham, MD]

Dear Sara,
I am glad you all feel like you are moving forward under the guidance of experts. I've checked out your Dad's blog, and I'm sure some of the Healthy Survivorship readers will, too.

While your family moves forward with new options, I'm going to continue exploring the idea of hope when no options are available for those readers who, unlike your dad, have no treatment options at this time.

with hope, Wendy

[Sara Huizenga Lubbers]

My Daddy died on Sunday

So now, I know, that I need to support my Mom and love my family, that is what he would want, to not look back with regret and bitterness

I feel like every inch of my insides have been viciously clawed away, I'm sure we all do, it's all surreal

I'm so glad my Daddy is in heaven and always in my heart

Thanks, Wendy, for sharing some thoughts pertaining to him here...

blog for my Dad
http://papamore.blogspot.com

[Wendy S. Harpham, MD]

Dear Sara,
I am saddened to learn of the death of your father. I'm glad to read that even in your shock, you know that you will always feel his love.

I wrote this after losing a colleague. May it bring you a small measure of comfort:
http://www.oncology-times.com/pt/pt-core/template-journal/oncotimes/media/WendyHarphamPatentPending121005.pdf

With hugs and hope, Wendy