When to stop treatment

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". 

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 said:

Hello, funbeadgirl....

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.

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 said:

Thank you all for your

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!

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 said:

Well, it's been two months

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!

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 said:

I know it has been awhile

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.

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 said:

Taking a month off

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!

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

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.