Tag Archives: cancer treatment

When is Enough Really Enough?

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On a recent committee call, one person jokingly asked “Does everyone have enough toilet paper?”

Instead of adding my usual sarcastic comment, I paused.

Then I said “I don’t know what ‘enough’ is any more.”

Enough:  \ i-ˈnəf

occurring in such quantity, quality, or scope as to fully meet demands, needs, or expectations.

Why don’t I know what “enough” is anymore?  What’s changed?

I used to know how much toilet paper was enough – when I had a full roll on hand to replace an empty one.  How many full rolls were enough then?  It was the number of rolls we went through in a week’s time. 

When my husband wrote the grocery list, he’d look in the cabinet, see how much we had on hand, then determined whether he needed to buy another package.  One package.  Not a cart full.

What’s changed is that we don’t know whether there will be any toilet paper on grocery shelves next time we shop.  Before, there was always a complete aisle full of toilet paper.  No shortage.  Kids used to prank their friends with a yard full of TP draped from tree to tree. Unthinkable today.

Maybe panic created the shortage.  We’ve all seen videos or photos of shoppers emptying shelves or fighting over the last pack.

It appears we, as a society, can’t trust the supply lines like we used to.  Maybe some thought that all of the toilet paper manufactures would shut down production due to the outbreak and then where would we be?  Back to using Sears catalog pages in the bathroom?  Oh, I guess not.  No more Sears catalogs.

Maybe it’s time to really think about our behaviors and if our shopping urges make sense.  Should someone have a garage full of toilet paper causing others to go without?  Should e-bay allow sellers to offer otherwise inexpensive items at huge mark-ups with high shipping costs?

Our version of a free-market economy with supply and demand features makes all of this possible.  If you want it badly enough and the supply is limited, you must pay the price.

I just hope that those e-bay sellers get stuck with a huge inventory they can’t get rid of.

As families like mine are trying to make sense of this new, temporary reality and re-define how they live, I wish there was at least a little more information about the supply chain – what’s working and what’s not.  I’m not sure I can watch another COVID-19 explanation of how the virus is spread.  I’d rather hear more about how to live our lives now.

As a person living with metastatic breast cancer for over 20 years, I’ve had to redefine how to live my life with each of the 17 treatment lines I’ve been on and with each treatment’s associated side effects. 

You’d think I’d be used to redefining how I live my life.

The problem now is it’s even more difficult to plan for events that are important to me.  I don’t know when this temporary way of living will end.  I don’t have things to look forward to.  Nearly everything I was hoping to do to through the end of summer has been canceled or delayed indefinitely.

Having something to look forward to has given me motivation to get through whatever problems cancer treatment has caused.

I’m not coping very well.  I’ve had enough.

The Right Dose

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I wrote a blog post for Komen about the need for providing the right dose to further individualize treatment in metastatic breast cancer.

Here’s the content of the blog:

Personalized medicine has been hailed as one of the latest big ideas when treating patients. According to the National Cancer Institute Glossary it’s defined as a “form of medicine that uses information about a person’s own genes or proteins to prevent, diagnose or treat disease.”

What’s missing from the personalized medicine definition and practice?

Personalized dosing.

The goal of treating early stage breast cancer is to obliterate cancer in the body and keep it from coming back. In metastatic breast cancer (MBC), the goal is to be on a therapy as long as possible to control the disease while maintaining quality of life. With two distinct goals, you’d think there would be two dosing strategies. One is a sprint, and one is a marathon.

Most FDA approvals for cancer drugs include a maximum tolerated dose (MTD) with at least two lower doses that can be used. All three are shown to be effective, otherwise they wouldn’t have been approved.

The National Comprehensive Cancer Network (NCCN) guidelines list the MTD for most of the approved breast cancer therapies for both early stage and metastatic breast cancer. These guidelines are used by many oncologists to determine dosage.

So instead of personalizing the dose to patients based on drug sensitivities in the past, whether the therapy is for disease control or disease elimination, a standard MTD is administered.

In July 2019, I attended an update on breast cancer therapies for oncologists where I was the only advocate present. During an optional lunch session sponsored by a drug company touting their new drug that I’ll call Drug X,  I publicly suggested that we aren’t properly dosing new cancer meds when there is no difference in outcomes between maximum tolerated doses and stepdown recommended dose reductions in MBC. Pharma reps swooped in on me after the session.

The reps explained that all patients need to start at MTD because if we don’t start there, we will never know if the patient can tolerate the maximum dose. 

Alarms went off in my head. It made no sense to me.

So, let’s say you are a patient with MBC and you’ve been on a few lines of therapy. You have progression and Drug X is your next option. Even if you have low blood counts, have experienced eventual stepdown doses on your other therapies due to sensitivities or side effects, you are to start at the MTD. Why? Because that’s what the guidelines say.

Does this sound right to you? 

It doesn’t make sense to me. Why subject a patient to the highest dose when it’s extremely unlikely they will be able to tolerate it and will likely experience serious or reduced quality of life side effects? And, these side effects may reduce the amount of time the MBC patient can safely remain on the drug.

Furthermore, clinical trials are often quick to establish dose standards without taking time to consider a variety of dosing schedules and amounts. Sometimes it takes a few years for oncologists to see their patients experience intolerable side effects at the MTD before they change their personal practice using reduced dosing. That happened with capecitabine. 

It seems to me that NCCN guidelines should suggest starting at the lowest dose and ramping up if needed or starting at the middle dose and going up or down based on patient reaction. Some oncologists are already doing this, but outside of guidelines. After all, they are “guidelines” not commandments. Yet oncologists may feel uneasy prescribing outside of these guidelines.  

If you are starting a new line of therapy or are on a therapy but experience intolerable side effects, talk to your oncologist about reduced dosing. Your oncologist should be able to explain a good rationale whether to stay at current dose or step down to a lower dose. Make sure you understand the pros and cons. Then it’s your decision how you’d like to proceed. 

Adding individualized dosing to the definition of personalized medicine should be the standard of care.

*The opinions expressed are those of the author.

For more information see:

“A new concept may help us at last abandon one-size-fits-all dosing of cancer treatment drugs”

“Challenging Standard-of-Care Paradigms in the Precision Oncology Era”

“Precision Medicine Is Not Just Genomics:  The Right Dose for Every Patient”

Am I Really a Cancer Survivor?

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Call it Like it is: Maintaining the Will to Live

Musings from 21 Years of  Living with Metastatic Breast Cancer

After this blog post, I’m done answering this question: 

Are you a breast cancer survivor?  

Done.  Over.  Fini-to.

People living with metastatic cancer of any type can refer to themselves as anything they want.  Warrior?  Great.  Survivor?  Fabulous.  Thriver?  Whatever floats your boat. 

Yes, sarcasm flows in my veins but, really, I’m good with all of those descriptive terms.  Go for it — for your own purposes but not mine.

These labels help inspire people who face life-threatening diseases feel empowered, strong, hopeful.  Terrific.  I’m happy they use these terms to overcome the dark thoughts in their minds that their illnesses will likely eventually kill them. 

But not today.  Today we live.  Be positive. Be strong. “So stop being so morbid, Sandi, and just live.  Be happy.  Be grateful.”

Using labels like Survivor can matter when you discover your treatment has stopped working or the side effects of therapy are nearly impossible to endure.  “I need to get over this and go on.”

Maintaining the will to live – that’s what it’s really all about – is important for ourselves and for the sanity of our family and friends.  They don’t want us to give up and we don’t want to give up because of them.  Never.  Until we have to…and even then…we don’t want to stop trying to outlast cancer. 

I lost my will to live one day.

In early 2017, after two years of brutal chemo bouts with Ixempra followed by Halaven, I found myself spending more and more time in my recliner.  If I had to go to the bathroom, I’d wait until the last possible moment to muster up enough energy to walk 14 steps.

In between my frequent naps, I looked out the window.  I saw neighbors riding in cars, walking their dogs and gardening.   “I don’t have the energy to do ANY of that and my energy level is draining by the day.  I don’t see an end to this.”

Then we received a much-anticipated call from my son.  “The baby is here!  He was born a little while ago.”  My grandson.

And I wasn’t there.  I couldn’t be there.  Impossible.

My reaction?  I sobbed.  Ugly crying.  Unstoppable tears.

Why?

This couple went through fertility testing only to find they would not likely conceive without IVF.  During IVF, there were many ups and downs for my daughter-in-law.  So many uncertainties.  It was uncertain whether IVF would work, if the baby would survive through pregnancy, if the baby would be born with physical problems and even if the child would survive the birthing process. 

Lots of tension.  Lots of stress.

I was so relieved that my daughter in law was fine and the baby was fine.  What a blessing!

Then my thoughts went here:  “This baby will never get to know me.”

My daughter and husband were stunned by my tears, unaware of the thoughts in my head.  My daughter looked at me and said “Mom, you’re scaring me.”

I thought about what she said and what it meant.  She was afraid I was giving up.  That I would soon die because I might say “No more.”

I scared myself.  What happened to that urging inside of me that made it possible to wake up every day?  What happened to my determination to slog through my 14th line of treatment until it stopped working?

Where did my will to live go?

Packed up and gone.  I couldn’t locate it anywhere.  AWOL.

I thought how calm, peaceful and wonderful it would be to fall asleep and not wake up again.

Then I thought, “Am I really finished here?  Is this my last curtain call?”

It was at that point I called my insurance plan’s mental health helpline.

It took a few weeks to start sensing my urge to live again.  But it happened.  With therapy and medication.  Now I feel more like me.

But I don’t feel like a survivor.

My daughter in law is a survivor of IVF.  My grandson survived gestation and birth.  Both are survivors of their situations.

To me, a survivor is someone who has been able to successfully walk away from a life-threatening event and goes on with life.  Like the survivors of the Titanic.  They got in lifeboats and were eventually rescued.  Most went home.  Many returned to their old lives.  They didn’t get back on that ship except in their nightmares. 

I’m still on the Titanic.  I haven’t survived the event called “breast cancer.”  I may be currently living with breast cancer but I’m not someone who has survived.  I know my time is limited, even though I’ve beaten the odds of living past the magic five-year mark.

So, call me what you will if it makes you feel better to say it.

Tell me I’m alive because I have a positive attitude.

Tell me I’m alive because God isn’t through with me yet.

Tell me I must be doing something different to have lived this long with stage IV cancer.

But I know I’m alive because I still have the will to live.

Oh, and having a type of cancer that responds to current therapies helps a lot.  A whole lot.

Sex and the Cancer Patient

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intimacy-touch_1

This quality of life issue is not adequately addressed for cancer patients

Hundreds of billions of dollars have been spent researching how cancer develops, grows and spreads in the body. A fraction of that money has been spent on quality of life issues.

This is how much has been comparatively spent on figuring out how to overcome loss of sexual drive as a result of cancer treatment:

Cue Sound: Crickets Chirping

About ten years ago, I attended the San Antonio Breast Cancer Symposium as a patient advocate. At the end of each day, advocates would gather with a panel of selected scientists and clinicians to discuss the highlights of the daily program and answer questions the advocates might have.

On the panel at one of the sessions was Dr. Susan Love, author of The Breast Book, esteemed UCLA breast surgeon and founder of Dr. Susan Love Research Foundation among other things. She is an amazing woman who can take complex issues and provide analogies and stories to make these issues understandable. From all of my encounters with her, I’ve found her to always be open minded and more than willing to answer tough questions.

One of the big questions on my mind that day was loss of libido that many cancer patients face after surgery, during treatment and even after treatment. This is particularly true of stage 4 cancer patients who are always on some sort of treatment. So I asked Dr. Love if she’s heard about that and what a patient might do to increase her drive.

You could see presenters and advocates squirm in their seats as I asked the question and Dr. Love even blushed a bit. She said she had known about the issue and suggested that patients do things to make them feel “in the mood,” like wearing sexy lingerie or listening to soothing music. You could hear the soft groans from the audience. This time, Dr. Love dropped the ball, so to speak.

A year or so ago, Dr. Love was diagnosed with AML, acute myelogenous leukemia and underwent bone marrow transplant. After her treatment, she gave a short talk to cancer researchers where she stated, “The only difference between a researcher and a patient is a diagnosis. We’re all patients.”

Well said.

This week, SHARE hosted a webinar featuring Dr. Love entitled “When the Doctor Becomes a Patient.” There was time at the end for Q&A. Guess what question I typed into the Q&A box?

“A few years back in San Antonio, I asked you what a patient could do to overcome loss of libido due to treatment. You answered ‘do something that gets you in the mood.’ Now that you’ve undergone cancer treatment yourself, would you reconsider your response?”

You could hear a little gasp on the line.

Dr. Love responded by saying that the libido issue is real and that it’s extremely complex; there are no real answers to how to overcome it. She publicly regretted her earlier response to my question.

I performed a silent victory fist pump.

Loss of sexual drive is a real issue for cancer patients. Consider these situations:

  • Some men undergoing life-saving prostate cancer surgery are left impotent forever
  • Mastectomies and reconstruction might leave breasts looking good most of the time, but the owner of the breasts have no sensation as the nerves are severed during surgery. Some are in constant pain from multiple surgeries.
  • Young women with hormone sensitive cancers often face permanent premature menopause from surgery, chemotherapy, and/or anti-hormonal drug treatments. They cannot take hormone replacement therapy because this could cause the cancer to come back and potentially kill them.
  • Chemotherapy kills fast growing cells, including all the linings to sexual organs. This makes intercourse painful, even dangerous should the patient contract a bacterial infection that the body can’t destroy.
  • Cancer treatment is exhausting. Just doing daily activities like showering can send one straight to the couch for a long rest.

One of the biggest issues I hear from women I mentor on the breast cancer helpline who have metastatic disease is that at the very time when they need to be closest to their life partners, their lack of desire can pull them apart. Some cancer patients even divorce during treatment. Think Newt Gingrich and John Edwards.

In a few cancer patient publications, there is a line or two about loss of sexual interest from treatment. It’s listed as a minor side effect in those brochures, but not in pamphlets provided by drug manufacturers. So this condition can come as an unpleasant surprise to cancer patients. They don’t know this is normal for most and they feel inadequate, all adding to overall stress levels.

Most oncologists don’t talk about sexual dysfunction before treatment begins and have little to say if patients bring up the subject. There aren’t any clear-cut answers.

I guess you could say that cancer patients are lucky to be alive. What more do they want? Yes, there’s the pain, the loss of appetite, the overwhelming exhaustion, stress on all bodily organs, and the anxiety of not knowing if disease will spread and kill them.

So your deal with the devil is to take treatment, hope for a cure, and face both short term and long term side effects including saying “buh-bye libido” hopefully only for the time being.