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When to stop treatment

funbeadgirl
Posts: 181
Joined: Jan 2009

just wondering if anyone has had to make decision as to whether or not continue with treatment? I understand everyone has their own way of looking at their life and I don't expect anyone to give me my own personal answer to this but perhaps I can glean from others thought process.

i am just so tired all the time and I'm tired of being sick all the time, I feel I have no quality of life anymore, and this chemo is making me feel like I'm dieing on the inside a little at a time the way it is. I don't want to give up, I don't want to disappoint anyone, and I don't want to fail in the fight, but how does one know when enough is enough?

perhaps it will become more apparent to me after my next scan, yet I feel I have to prepare my mind for that decision before the scan. It has been a particularly rough few weeks, I've had chemo every week, and this passed week I had three neupogen shots, which I am sure added to my body already feeling like I have nothing left.

i still enjoy life, I don't have a bad life at all, I just feel I can't take more treatments unless there is a 'remarkable' difference in the scan. How much more am I willing to put myself through without knowing it's truly going to make a difference? Of course there's no way to answer that until after treatment  and the scan. It's like a dog chasing its tail. It's frustrating.and sad. It makes me mad and hopeless. Yet I'm not without hope, I have solid faith that has carried me thus far and I see the bigger picture. But I am in the here and now...and trying to reconcile both. See what I mean?

well, as always, thank you for letting me express what is going on in my head, that is therapeutic in itself. a fervent prayer is needed now.

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

We all wonder what is "right" when it's "enough".  The Good GOD knows you have been through Hell and back.  You are over tired, stressed, have so many unknowns.  Never  fear you will dissapoint or fail....you can't you are still here!  It's the middle of the night and your mind is going around and around.  Wait for the new day,the new scan,the new whatever.  If you have a good life then you are already doing more and having more than most people.  Stopping, or going on vacation from chemo is , of course, up to you, but let it rest for a while.  You have been in this cancer thing for years and why in the world wouldn't you be tired of all of it?  I love fudge, but if I eat it every day I will start to hate it.  You just need to stop HAVING to think about cancer for a while.  You need a mental break wheither the cancer likes it or not!  I wish you all the very best, take a deep breath, and smile...I'll stand guard tonigt!  Best, Debrajo

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

funbeadgirl, wow.  That is a lot to think about.  Of course, you are in a safe place and are welcomed with open arms so where better to ask such questions? 

I will pray you find the answer to your question. I think you will know the "when" and "what to do". 

ccfighter
Posts: 476
Joined: Jan 2012

I wish I knew the right thing to say.  This is a very personal decision that only you can make.  Please do not let the worry of disappointing others weigh in your decision.  You are a strong, brave, beautiful woman who has had to deal with some of the most difficult situations that exist in this world.  You are a fighter, and even knowing when to stop treatments that diminish quality of life is part of that fight.  It is not giving up.  We do not get to control when we will leave this earth, but to some extent we can control how we feel while we are here.  chemo is hard, no ifs ands or buts about it.  We endure it for cure, for relief of symptoms, for more time.  But if these things are not happening, then what is the benefit?

 

i hope that your upcoming scans show the chemo working, your disease regressing, and that it lifts your spirit to endure the treatments to reap the benefits.  

 

I will pray that you find peace in whatever decision you make.  You are one of the most inspirational women I have ever met, and whatever decision you make, you have my highest admiration and respect.  I just wish I knew how to make it easier.  I just wish they'd find a cure.

 

hugs to you.  I truly hope you are feeling better soon.

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

Well said ccfighter. I am so sorry you are feeling this way funbeadgirl. Please know we are all here for you, in thought, love and prayers. You have helped so many on this site, me included. I have always been so inspired by your posts. You are just incredible. I will keep you in my prayers for a good scan and peace in your heart. 

babe

Ouch_Ouch_Ouch
Posts: 505
Joined: Aug 2014

I don't know you beyond your above post, but I can tell how tired you are of carrying a very heavy burden. It would feel good to lay it down, if only for a while. Can your doctors make a suggestion as to how you could lay it down for a little in order to recharge your battery?

You also sound very depressed. Who could blame you!?! Perhaps a therapist can help you get in touch with the joy of life again or help you organize your thoughts in order to reach or reject the decision to stop treatment. Antidepressants are wonderful adjuncts to cancer care and are commonly prescribed in addition to the antianxiety meds. If you are already on one, perhaps you need a med or dose adjustment. If you are new to taking an antidepressant, bear in mind that they take some weeks to come to full effect as it takes that long to form new cells and neuro-connections in the hippocampus.

Antidepressants will not do the thinking for you nor reduce you to a zombie, though they may make you feel sleepy for a few weeks as you adjust. A well-fitted med will lift the clouds from your brain so that you will think more clearly on your own and help you not feel so soul-weary. Taking them is not a failure; they are just another very helpful med that can help you proceed on to the next step, whatever that may be. They are a true God-send.

Please be sure to hug and be hugged a lot, no matter what lies ahead. It feels awfully good!

PS: I can tell by your jolly username that you are a live wire when you feel hopeful and surely must laugh a lot. I hope that you can reach that place again no matter your decision. From my totally subjective point of view that you should ignore completely, the world needs people like the one you seem to be.

Ouch_Ouch_Ouch
Posts: 505
Joined: Aug 2014

If you have the opportunity, read GrannyFranny's Mar 2 post in this thread. She's more eloquent than I: http://csn.cancer.org/node/142459

funbeadgirl
Posts: 181
Joined: Jan 2009

Thank you all for your encouraging words of understanding. My scan did not show a remarkable difference in the existing tumors but there were no new tumors either, so that is positive! I however express my thoughts to my oncologist and he was very understanding, he felt a break from treatment is just what I needed. I am content with that decision and came to that conclusion before I ever saw doc today. I just know myself, I need to balance treatment with quality of life and right now I desire to gain my strength back and get stronger so I can do things with my grandkids, my family and friends. I will research some reasonable alternatives to build my health back up, but I will not become obssessed with only that. It's back to living my life my way and in my time frame, I'm sure there will be ups and down, but overall I am in the drivers seat. now I have a winter vacation to plan and make some lunch dates with friends and put some distance between me and cancer treatments. I will have fun doing it too!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

Fun Bead Girl, I am happy to hear this, mostly because I can hear the peace with your decision and your approach sounds good.  Please check in at some point during all your FUN!!  Enjoy.

funbeadgirl
Posts: 181
Joined: Jan 2009

Well, it's been two months since I stopped my chemo treatments, I have recovered from the sick feelings and blood counts are back in normal range completely! I still suffer from fatigue but I think that is only normal,considering what my body has endured the past six years, but I do have good days where I can get out and run a few errands and even get in a little retail therapy...something I had lost interest in previously.

Im still in physical therapy for leg issues once a week, and next week I start a wellness water exercise class two more days a week and I think that will help my energy levels recover too. I hurt shoulder picking up my 25pound grandson, not smart, so besides knots in my shoulder blade muscles, I pulled rib muscles and that will take a long time to heal. I also aggravated rotator cuff but I just got a cortisone shot for that and in a few days it will be better, I got cortisone in hip too and that is better immediately. My ortho oncologist is most understanding person, he fits me in whenever I need something.

im feeling very positive about things now, I feel better and I've got a plan , so I won't look too far forward, just focus on the present and truly enjoy it. I'm doing it my way now, I'm enjoying it when I can and get extra rest the days I need it.

i hope you all are doing well and coping and looking forward to better times too.

i know so many people with this flu going around, those are the people I'm staying away from.

as always ladies, be strong and stand firm!

p.s. I have two trips planned, one in February to a great resort in a Door County, WI, and in March im going for a week to Sedona, Arizona to stay at friends house and being flown out there in his private jet! Who hoo!   Love conquers all!

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

It all sounds WONDERFUL!!!  "Go out and live life" were the parting words from my gyn onc nurse and, without that being said to you, you are doing it!!  I am so glad to hear of your adventures and can't wait to hear about them.  Wisconsin in February????  I don't know about that, your AZ trip sounds more my style. ha!

funbeadgirl
Posts: 181
Joined: Jan 2009

I live in Wisconsin, but Door County is beautiful area, it's like a Martha's Vineyard of the north woods, very relaxed in winter. We go there as a family with grandkids every winter and the Arizona trip is a bonus gift from friends for our 42nd anniversary!

i enjoy any weather, if I feel it, I'm living it and that's what I want...more living.

ribs are getting worse so oncologist wants me to come in, I do have mets in the ribs so they could be cause of the problem. Pain is hard to control because it's not just pain, it's muscle spasms in the ribs and that pain is worse than anything I've ever had, breathing is painful. Guess it's good to check it out.

ccfighter
Posts: 476
Joined: Jan 2012

I'm so glad that you are feeling well and enjoying yourself.  I unfortunately was one of those who got the flu (shame on me for not getting the flu shot) ...woke up sick on Christmas and spent the next five days in bed with a fever of 101 and a horrendous cough.  Finally started feeling better and was then struck by another bowel obstruction.  Didn't go to ER because they have to admit me and then all they do is starve me so I figured I could do that myself from the comfort of my own home.  It resolved much quicker than last time so I am back to pretty much normal.

 

keep on enjoying your travels and shopping.  Rest the shoulder and ribs, muscle injuries can really hurt.  embrace the new year with thoughts of happiness and health.  Hugs.

funbeadgirl
Posts: 181
Joined: Jan 2009

I'm sorry you've had to experience the flu, my son, his wife and four kids all picked it up at disney world and were sick for a week, it was a long drive home to wisconsin for them. Sorry about the bowelmobstruction too, that must be terribly painful and uncomfortable, I hope that doesn't happen to you again. Take care dear friend!

Ouch_Ouch_Ouch
Posts: 505
Joined: Aug 2014

Be sure to take lots and lots of photos of all your fun times!

funbeadgirl
Posts: 181
Joined: Jan 2009

I know it has been awhile since my last posting, just to catch you all up...had another PET scan at end of January, my disease is progressing with tumors growing. The scan also revealed that I had a couple broken ribs, one broken in two spots and my thoracic tumors also caused some fractures, it's no wonder I was in so much pain and having muscle spasms! Because of this I was referred back to radiation oncologist to consult for treatment. Well he saw me and did planning the same day and I started treatment a couple days later, I finished last Friday, 10 treatments in all. Tomorrow I see medical oncologist, although he is aware that I will not start chemo until after my arizona trip!

something of concern to me was that radiation doc kept talking about my thoracic spine...I thought the tumor was in cervical spine at C2? That's what I've been told for past year,mthsts what was on scan report...BIG questions! Apparently radiologist made an interpretation mistake, it was T2 not C2. It's better that tumor is in my thoracic spine rather than at C2, but all that time I imagined the worst because they said it was not treatable! Now I wonder if it could have been treated with radiation before? My confidence in this process is somewhat deflated. I will check and double check every thing they tell me now, and then check it again. I put up a bit of a fuss (in a nice way) about this so I doubt anyone will forget me very soon,

my Arizona trip is coming up on March 21st, so now I'm getting ready for that. I hope to recover from radiation by then also, my esophagus is burned from radiation and I can't swallow without excruciating pain, feels like shards of glass in my throat...eating is impossible , so I have one protein smoothie a day and have brothy soup. 

This next round of chemo will be done once a week for three weeks in row then one week off, repeat for four cycles, which takes me to mid July . I wonder if I can handle it again, I barely made it last.   I'm sure all my questions will Be answered . I'm just so tired , literally I have been falling asleep , so I will close now. I will hopefully remember to come back after I see doc tomorrow.

i always say to be courageous and stand firmñ

Thank you for always being here to listen and support my endeavors.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

fun bead girl, so good to hear from you.  I am glad you pushed them on what you had been told and what you are hearing now.  Sometimes I think doctors think want to know.  It may be hard to hear, but dang it! We will decide for ourselves. 

Don't fight the sleep that radiation fatigue gave you  Sleep away and I pray your throat heals fast.  Sweet dreams dear soul!

funbeadgirl
Posts: 181
Joined: Jan 2009

Thank you No Time! My oncology appointment yesterday was as I expected it, PET scan April 2nd, first treatment April 9th. I will be receiving taxoter this time and he's thinking about doing it once every week, I guess my blood counts will determine that. I have come to despise the PET scan, mostly because of that crazy no carb diet the day before and the prep time waiting for the ratio tracer to circulate through my body, I certainly have better things to do with my time. I'm trying to get my head into ' maintenence ' mode, as this may be what my life will be from here on out. No 'cure' for me, just keeping it at bay, and I guess that's better than this disease grabbing hold of me and aggressively destroying me. I think it is all about perspective anyway, you can train your mind to do something that might otherwise be unacceptable. I saw a story the other day about a newborn baby that was sick, he had leukemia and received first chemo treatment at four days old...now THAT is not fair! Someone always has it worse than I do.

my doc did give me prescription for liquid pain med and Magic Mouthwash...that stuff numbs the throat, making it easier to eat but I still have to stay with soft foods, and it is a weird feeling but at least it gives me pain relief for awhile. Very costly, then a friend told me about Goodrx.com...that script went from $200. To $38., well worth a little investigation on Internet, although I did have to run to two separate pharmacies. why radiation oncologist didn't give me that who knows?

Now I lay here, unable to sleep, must have been that coffee I had at 3:00, usually doesn't bother me. I have one month before I start treatment and I'm using it to the fullest, since I feel pretty good, I will get some things done around the house and take a nap, then do some shopping and take a nap, spend time with my mom and nap, have grandkids over and definitely will need a nap! I'm looking forward to my vacation, some friends are treating us to staying in their vacation home in Sedona, and they have a private jet and are flying us down there also...talk about red carpet treatment! It will be our 42nd anniversary also, and two other couples we are very close to will be there also, it will be a very memorable time. They said they knew there was nothing they could do for me to help me get through this tough time, so they could do this for us to give us an escape from it even for a brief time. I'm so amazed at the kindness shown to me over these past years, I've been recepient of so many acts of kindness and comfort by my family and friends. We all see and hear so much sadness and conflict and horror on the news, yet there is still such a gentle kind human spirit is so many people. I am very sad for anyone, going through any type of crisis that does not experience that same support. We all need to be more keenly aware of others around us, you never know what another is going through. I've been trying to make eye contact with more people and smile, sometimes that's all a person needs and this world has become so impersonal, I think we forget that we are all human and have a need to be recognized.

Chances are I will be MIA around here until after I start treatment, my goal is to not talk or speak about any of my health issues for a month...I would say not think about it too, but that would be impossible! I'm going to get myself stronger and determined to fight as hard as I can... And have some margaritas too. Good thoughts and happy days to you all. I will be standing firm as I hope you all will be too!

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

Funbeadgirl, I wish you the best on your upcoming holiday. It sounds like you are being treated as a VIP!! If anyone deserves this, it is you. I hope you enjoy every second of this vacation & celebrate. It sounds like you have the battle plan laid out for afterwards. You have been fighting this hard & I have no doubt you will continue to do so. Please know my thoughts and prayers are with you throughout this journey. You have certainly been an inspiration to all of us on this board.

Babe

ccfighter
Posts: 476
Joined: Jan 2012

Have a margarita for me too!  Double fist it.  Sounds like you will be living it up just as you should be.  Enjoy your vacations and Happy Anniversary!  Whoo Hoooo!  No reason to think about, worry about, talk about or anything else about cancer right now.  Enjoy yourself and know the next battle on this disease you will win.  But that is then, and this is now, and now sounds like you will be having a real good time.  Hugs to you.  (Along with prayers, well wishes, good mojo, positive energy, and certainly , always, hope)

yamster34
Posts: 75
Joined: Apr 2015

If the tumors are still growing and the disease is still progressing, it would make me wonder if the chemo and radition are really doing anything to help.

funbeadgirl
Posts: 181
Joined: Jan 2009

Well I have started my next round of chemo, three on and one week off, I'm getting Taxotere this time, doc wants to do three or four complete cycles before doing another PET scan. Much will depend on how my blood counts cooperate . So far I'm tolerating treatment well, but I do know it is accumulative. All the same I take it one day at a time. i had treatment yesterday and today I felt so good and so energetic, I walked a mile and ran errands! Then spent over hour on phone with a friend going in for more testing on abnormal mammogram, she's flipping out completely, which is opposite of how I handle things, I need to be compassionate to her personal way of handling things but I do hope to help her try to tone down the emotion and constant crying, she doesn't even have a diagnosis yet. She says she can't be strong like me...well who of us here would have ever believed about themselves that they could be strong through such a hellish process? No one I'm guessing. It evolves and you learn how to do,it by watching how others handle it, and digging deep into yourself and pulling out that determined warrior! So I was mentally exhausted from the phone call, but glad she called me. Then I took chicken soup to my sick mother and visited with her from a long distance, I don't need to pick up something bad now. Now I will collapse into my comfy pillow and sleep well, and hopefully have another good day tomorrow...actually I see everyday as good, even if I'm a little sick from chemo, every day of life is good.

looks like my cycles will take me through July, then scan, then more chemo, either continue with Taxotere or move to something else, my doc admitted to me they are just guessing at this point, but they have to try something. I'm okay with that, so far I've been kept alive for nearly 7 years and having a pretty good life at that! i expect more to come. Whatever it takes I will do. There will always be progression of disease but if the chemo keeps it from overtaking vital organs that's a good thing, right?

in June I'm doing a walk for my ortho oncologist doc team, I did it last year and got 45 friends to sign up with me, this year my goal is 60, it's for Lombardi foundation, very good cause for cancer and it all goes to patients in local area. Gives me something to look forward to. I will do it.

Thanks all for your support and encouragement, I'm doing great, I just needed that break and now I'm fighting again. I'm not depressed or sad, I'm determined and strong.

yamster34
Posts: 75
Joined: Apr 2015

My husband and I will be praying for you and your friend as you go through the journey ahead! Your good attitude is very helpful! Hopefully your attitude will rub off on your friend. 

funbeadgirl
Posts: 181
Joined: Jan 2009

I just finished first cycle of Taxotere, three weeks on, one week off. I am desperately sick, nausea, intestinal distress, neuropathy on tongue and face, so I have no ability to taste anything and food tastes very bad. Even water tastes like soap to me, I've tried lemon, mint, cucumber, Apple, strawberry, etc. to no avail. I have no appetite and force myself to eat which usually ends up gagging  me and then I can't eat. Neuropathy has now moved up to my forearms and fingertips are worse. The weird thing is that I can still smell food and it seems appealing but when I try to eat, I have an aversion. I'm subsisting on peanut butter, only thing I can taste.

I have made the decision to stop treatments. Oncologist scheduled three more cycles...so through summer, I know I cant do it, I don't want to do it. I want some quality of life now. My decision to stop is no less educated than their  educated 'guessing' which chemo will work, he admitted that this is all just a guess because they don't know  which chemo will be effective. He said if this one doesn't work, we can try others, then he named 5-6 other chemo drugs...I just don't want to be a guinea pig anymore.

I am resolved and at peace with my decision, I will recover from this, gain some strength back and then move on and live my life by my terms, whatever that means for my future. 

 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2574
Joined: Mar 2013

funbeadgirl, you know what is best for you.  I am sorry the latest chemo had caused you so many problems.  I pray for your strength and peace.

ccfighter
Posts: 476
Joined: Jan 2012

You deserve the best quality of life this world has to offer.  You are so strong and so inspirational and I hope you know that.  Chemo sucks.  No ifs ands or buts about it.  Many scientists believe that chemo is like trying to hit a target the size of a pin head with a shot gun.  You hit everything but your target.  I commend your strength and courage in your decision.  This is your life.  You call the shots.

 

in your quest for health and happiness I hope that you look into alternative treatment.  Curcumin with black seed oil, propolis, indole 3 carbinol,  massage therapy, acupuncture, meditation, marijuana.  Chaga tea also.  Perhaps some of these things can help you feeling good as long as possible.  Daily ibuprofin and evening antihistamine also good.  Once your taste returns lots of fresh fruits and veggies with as much of anything else your heart desires to go along with it.  Chocolate!  Gotta love the life we're living. Enjoy!  Bring the grandkids around a lot.  Love and laughter kills cancer cells.  Keep those bad boys in check.  Get plenty of rest too.  Sleep is restorative to more than just our energy levels.  

 

what did your last scan say?  Before you started treatment.  Do you mind me asking where your tumors are located?

 

please keep us updated.  If I can help in any way, you know where to find me.

love and peace and warm comforting hugs

funbeadgirl
Posts: 181
Joined: Jan 2009

Thank you for your words of encouragement and suggestions. Yes I know this is right decision for me. This afternoon I had to go to ER, I was sweaty, clammy, nearly passed out and raging diarrhea , I knew I was dehydrated so I called nurse and she said to go to ER. I feel better but weak, I'm sure in next week I will start feeling much better.

my last scan showed a decrease in SUV of a couple tumors, but increase in others, and new tumors also. My mets are on right hip bone, left pubic bone, thoracic spine T1-T6, left shoulder, in at least five ribs, some ribs have 2 tumors, that's the one I broke a few months back. Oh, I also have tumors in the sacrum .

ill be here and there as things develop to tell you about it. Well I'm sleepy now so I have to take advantage of it!

Thank you all!

babe12's picture
babe12
Posts: 103
Joined: Jul 2012

I say AMEN to everything ccfighter said. Funbeadgirl, you have been thru hell with this nasty cancer & fought it hard. You give so much courage & inspiration to others. Take care and know you are in my thoughts and prayers.

Hang tough!!!!

Dana

yamster34
Posts: 75
Joined: Apr 2015

Not long after being diagnosed, my pharmacist niece read an article that stated the vegan diet has cured some people with stage 4 cancer. I tried it for around 2 months and felt pretty good. I was not able to get enough protein and eventually had to go back to eating meat. Of course you have to wait until you can eat again first, but you may want to find out if it is something you want to try. It is a shame that chemo drugs are so hard on the body. Hopefully you will be feeling amazing soon!

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