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Permission to stop chemo

Glow
Posts: 41
Joined: May 2003

I don't mean to sound negative but I can't stand the thought of one more drop of toxic waste being pumped into my body. I have been in treatment for 7years now including high dose chemo with a bone marrow transplant and EVERY OTHER CHEMOTHERAPEUTIC AGENT ON THE MARKET. We have started to go around the second time. I just started on Doxil....AGAIN. I am exhausted. What is wrong with stopping????? Does that make me a whimp?? or weak??? or less than the next person?? My family and doctor are totally appaled by my desire to stop. I tell them that I am the one who lives with this 24/7....not them and i am tired. Despite all...markers continue to rise..and Docs continue to treat the markers..............WHAT ABOUT THE REST OF ME???? Has anyone ever had a doctor let them take a break from chemo or give permission to stop altogether?? What does it take???

jeancmici
Posts: 682
Joined: Feb 2001

Dear Glow,
You have every right to sound negative. I am in awe of how long you have been in treatment and yes, I have known of people who just stopped treatment. sometimes, I've read, it stops those old cancer cells for awhile because they are confused - and this may work for you too.
But at some point (any point) the patient has every right to say enough. Doctors seldom suggest it - it is usually the patient who does.

Some doctors suggest a break of a month now and then or you could decide if the break is for good. My doc and nurse suggested at one time I see a psychologist on their staff who deals just with cancer patients. I didn't but maybe this is the time for you to talk to someone before you decide anything either way.

My thoughts and prayers are with you - I've only been dealing with treatment for mets since August on a weekly basis and i am TIRED.
Jean

Glow
Posts: 41
Joined: May 2003

Jean..I have read some of yourposts in the past. I am sorry you are going through a tough time. Please know you are in my prayers.

DeeNY711
Posts: 482
Joined: Apr 2003

Sometimes doctors initiate the break from chemotherapy if the lab work is way off, or if cardiac function is so impaired that a rest must be taken in order to permit time for the heart to recover enough to continue. Other times, breaks are taken while an infection is treated, or if a complication related to the port occurs. It is not unheard of to take a break. Perhaps your local branch of American Cancer Society or a local breast cancer organization can help you find resources to explore your options and make a decision that you feel is the very best one for you. I am so sorry that you are feeling this awful.
Love,
Denise

QQN4answers
Posts: 16
Joined: Jun 2003

Wow.... To say that I am impressed that you have been battling with this for 7 years is an understatement. It shows just how strong you are.

One thing you should remember is that you don't need permission from your Dr or your family to stop treatment. It is a very personal decision, one that only you can make. No, you are not a wimp or less then another. You have been fighting (both physically and emotionally) for a long time. Treatments take a lot out of our bodies and souls and those who have not experienced cancer just don't understand. This includes Oncologist, who should experience a round of chemo before they start treating patients. It would be interesting to see if their attitudes towards treatments change. I'm kidding of course, but Oncologist have tunnel vision. It is their job to treat the cancer and the rest is up to you. The term "Quality of life"is not always in their vocabulary. Families can be the same way too. They feel scared and helpless and sometimes guilty because there is nothing they can do. They want you to continue to fight, even when they can see how sick and tired you are.

As for being negative how many times have your heard the saying "Having a Positive Attitude" makes all the difference. Well, I don't always agree with that. I say you've earned the right to feel however you want to on any given day. Feel what you need to feel.

Like some of the other posts suggested try to find a psychologist who will LISTEN. They are impartial and can be a great sounding board when it comes to making your decision. Good Luck and take care ..... Liz

hummingbyrd's picture
hummingbyrd
Posts: 961
Joined: Sep 2002

Liz, great idea, if it was mandatory for every onc to take a round of chemo we'd have another treatment option, I guarantee! LOL

Glow, in answer to your question, NO YOU ARE NOT A WIMP! You don't need permission either honey, do what you think is right. My tumor markers have been going up since Dec 2001. I haven't had any chemo sinced finished what was first diagnosed 6/00 (4 AC, 4 taxol) completed 4/01. My doc told me a couple of months ago, "You look really good for someone with metastatic disease, especially considering you haven't had much chemo. You don't even look like you've got cancer."
I said, "Thank you. Did you ever consider maybe it's BECAUSE I haven't had a lot of chemo?"
Well, that ended that conversation. LOL
My CEA is 399, my CA 27.29 is 180something.
Everyone is different, and I'm not saying stop your treatments. I am saying it's a personnal decision, so do what you feel is right.
If you want to talk email me at tbyrd2@sbcglobal.net
God bless (((HUGS))) hummingbyrd

zietta
Posts: 4
Joined: Apr 2004

hummingbyrd - I like your attitude!! I believe that chemo can cause more harm than good. I think it may even have caused a secondary colon cancer in me. I think it the future there will be a vaccination for cancers. Treatment of the immune system. That's why I am going to an acupuncturist besides seeing my oncologist. My markers for CA 27.29 are rising from last year, they are at 83 and I am taking tamoxifen and living in the "now".
Good luck to you Liz, you are a real trooper and survivor!!!

LarkAlexis's picture
LarkAlexis
Posts: 13
Joined: Jul 2017

Hummingbyrd, are you still posting? I know it has been eight years since this conversation, so I am just checking. Thanks! LarkAlexis

inkblot
Posts: 711
Joined: Jul 2001

Glow:

You don't need anyone's permission to stop treatment if that's what you want to do.

You also must not feel guilty or wimpy if you do decide to stop. This is your life, your body and your own decision.

You've been through so much and only you know when it's enough. It must be a decision that you make with peace in your heart. Don't let anyone tell you any differently. If you need a rest or you want to quit permanently, it's your call. No one else's.

Love and a big hug your way.

Ink

jhope's picture
jhope
Posts: 58
Joined: Mar 2004

Liz, sorry to play devil's advocate, kay! Have you thought about getting a second medical opinion. We can all say what we did and what we think but medically we are all too different to say I'm better because I don't take chemo. Yes you get to choose, you like all of us have that right. The point is how long do you want to fight - period. If you have been fighting for 7 years, I can't even imagine it, quality of life counts for alot. Is there things, family, something to keep fighting? I wish I could just sit and hold you and let you cry it out, throw stuff, talk about your cancer all you want for as long as you want. Maybe your hitting a wall, I know I did and thought about how much easier it would be to just be in heaven with Jesus. Please know we, dispite our different views all love you and want to help. Please email anytime you want..... to cuss me out, yell, cry, hug, anything, Love, Julia

inkblot
Posts: 711
Joined: Jul 2001

We can never tell anyone else what to do, regarding stopping chemo. (Also, I don't think you need your doctor's or anyone else's permission to just stop)

If you just need a break, then that would need coordinating with your onc, as for how long and when to resume, etc..  Please talk with him/her about it as they can best guide you regarding a break. 

Just wanted to share my thoughts, and encourage you in making your best decisions about continuing tx and applaud your courage and endurance, this far!  Wishing you a good respite and all the best!

Love, light & laughter,

Ink

 

Beepositive
Posts: 259
Joined: Mar 2017

MANY PRAYERS AND HUGS TO ALL ...WE ALL GOING THRU DIFFERENT THINGS...KEEP FIGHTING..KEEP ASKING QUESTIONS TO YOUR DOCTORS..

BEEPOSITIVE!!Smile

peterz54's picture
peterz54
Posts: 345
Joined: Feb 2012

EDIT:   Pls note that the starting post is 2004.  Made my post in the mistaken assumption that it was recent, but will leave it in case it helps.

*********************************************************************

You are the decider. 

If you do not have someone on your medical team to deal specifically with side effects you should consider it.  Paliative care along side of oncology has been shown to result in better outcomes.   A paliatve care specialsist can also help you and the oncologists make better decision about when or when not to use chemco or radiation.   

Also, if you have not considered dietary measures it's something you might consider as certain regimes have promis as adjuncts to standard of care:     

There has been limited clinical testing and some small trials which indicate that low carbohydrate diets, ketogetic diets in some cases, and short term fasting can lower side effects of chemo and radiation and may have a growth stunting effect on the cancer by itself.      

Here are a few video lectures by oncologists and researchers which might be of help.   

Oncologist - Dr. Lemanne provides a good overveiw and some of the findings:

https://www.youtube.com/watch?v=W_diITmOeCM

Professor Seyfried has been studying the metabolism of cancer for years.  His refined technique, Press-Pulse, is explained starting at about 13 minutes:

 https://www.youtube.com/watch?v=3TZnjC7SR_w 

Professor Longo is doing important work applying limited fasting regimes to cancer treatments.   Here, he explains some of the background research:

 https://www.youtube.com/watch?v=v4ame4E1rtE

To summarize - 

Carbohydrate restriction (no simple carbs and sugary foods) is the base.  Also, moderate to low protein 

More agressive diets use much lower carbohydrates and supplement calories with quality fats.

Limited fasting for 2 or 3 days leading into treatment may lower side effects, allow for lower doses of chemo and radiation, and make chemo and radiation more effective.  Fasting can be done with small amounts of food totaling around 700 calories per day (of which 50% is fat).   

Avoid high protein.  Avoid excess calories.

Adding hyperbaric oxygen treatment along with glutamine inhibitor to treatment may fiurther kill off cancer.  

The big advantage to all of these options is that they are non-toxic. They can be done if you decide to take a break from chemo with some hope that they will slow cancer growth and make you feel better.  Or they can be done with reduced chemo dosage. 

 

Good luck with whatever path you take....

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