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chemo indefinitely

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

just had 10th chemo treatment. thought i only had 2 more to go. was excited when i saw doctor and he told me where did i get the idea that i only had 6 months of treatment. i said you told me that and he said no. that i will continue treatment. i was quite upset and he said we will take it month by month. that maybe i will just do avastin. it will all depend on scans and bloodwork. i haven't had a life since this started and now i don't know when i will. i'm just upset and need to vent. thanks for listening.

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Yes I know chemo.and radiation are a big pain,but you are still alive.You just have to sqeeze in a little here,and there when you can.Good luck.

jararno's picture
jararno
Posts: 189
Joined: May 2010

I too just finished my 10th treatment....I am sure you were told 6 months and 12 treatments! I hate when a doctor tries to tell you something different and acts like you heard wrong!!
If my Oncologist adds more treatments I may just kill him!!

Have you had any tests yet??? I have only had the Chemo since April and had a sigmoid colectomy in February. I have actually only seen the oncologist 3 times!!!

Everyone keeps saying you are almost done, but I have been a bit leary about things! I guess you need to reevaluate where you are and what you are ready to do??

Best Wishes!!

Barb

PS....We started Chemo on the same date!!!

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Try not to be too upset. Vent away. After George finished the initial six months, he had scans to see where things stood and then went on to maintenance chemo. The maintenance chemo hasn't been too bad. It is working so far and that is the important thing. His maintenance chemo is IV of F5U and Leucovorin weekly adding Avastin every other week. The total infusion from blood draw until he walks out the door takes about 40 minutes. Maybe your doc can work out this type of plan for you. He has been on this maintenance for several months now. He will probably be on some type of treatment with breaks of course forever.

Most Stage IV's have to continue treatment in one form or another. Some are lucky, after the six months they have liver resection, etc. and stay clean but from my reading, that is not the norm.

If it is any help, George said the maintenance chemo is more of an annoyance in having to go in than anything else. With this maintenance chemo his liver function stuff, all blood work and stuff looks really good.

Take care - Tina

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

I am so sorry. It's got to be so frustrating though.

I know quite a few stage IV survivors who have to go in for maintenance chemo and for them, it's more of a hassle of going than getting.

To them, it also means no new tumors, stable tumors and longer lives with their families.

I can't say I know exactly how you feel as I'm not a stage IV. I also don't blame you for venting. I've done that quite a bit on here. hang in there. Strong vibes to you!

Love and Hugs

Holly

Erinb
Posts: 295
Joined: Apr 2010

Errr! You probably did hear right. Our oncologist did that to. Why don't they just say in the beginning "I'm not sure how many treatments you will get, it depends on scans and bloodwork." It is frustrating to have a plan, a mental mind set, and then it changes. It is discouraging! On the upside, Atleast you are well enough to get chemo. Maybe just Avastin won't be as difficult. I don't know how any of you do it. I feel helpless and just do what I can for my husband while he is going through his treatments. It is awful to see the person that you love have to battle this dreadful disease.
Erin

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

has said something that hit home. thank you for that, only other survivors can understand. i'm still bummed but i was afraid of chemo ending and the cancer still be there and doing it's nasty thing. if i only have to do small chemo and the side affects are not too bad, i would be okay with it. it was just such a bummer when i thought i might get to thoroughly clean my house in november. the dust alone is ridiculous let alone all the mail (medical bills) that i keep throwing on the floor and leaving. i need a housekeeper, lol, but i'm too poor. but even more i need to get my but back in cancer therapy. thanks to all of you.

taraHK
Posts: 1961
Joined: Aug 2003

I can understand your frustration -- particularly since you had a date/finish line in your mind.

For what it is worth, I will almost certainly be going on 'maintainence chemo' (Xeloda, in my case) when my current chemo (Xeliri plus Avastin finishes). I'm not thrilled (the Xeloda affects my feet and I like to hike!). But, it's all part of the "chronic disease model" I am trying to embrace -- we can live WITH this, with decent quality of life, for a looong time.

I wonder if you might want to ask your onc about a chemo break -- I've been hearing a little about 'start-stop" chemo (maybe more popular in Europe??). Might give you a chance to get caught up on the house stuff! (I can relate -- you should see my filing pile!!)

Good luck

Tara

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I kind of know how you feel, I just had a two month break because of low platelets, and went back to onc today and platelets are back up to 154 so the chemo starts again Wednesday.
Just as I was feeling invincible, doing landscaping, hauling bucket after bucket of rocks, and now I have one day in which to finish it all. I did three truck loads Saturday and only two truckloads today. Darn it.
And I know I need the chemo, just kind of sad about it anyway. My chemo takes from 6 to 7 hours. Oh well, so it goes.
I guess what I'm saying is I know the disappointment you feel. We'll both get over it I'm sure.
Hang in there.
Winter Marie

damama24
Posts: 175
Joined: Nov 2009

My oncologist told me right from the start that I would be on chemo a minimum of one year. I started out on Folfox and Avastin. Onc stopped oxiliplatin after 6 rounds and I continued on the rest. But, then in March the tumors in my liver showed progression. So I started all over again on Iriontecan and Vectibix. So six months into the year we switched chemos and the year started all over. At first I was ready to just quit it all, being stage 4 and inoperable I figured why prolong the inevitable. I'm now 11 rounds in out of 26 and its not so bad. It would be nice to see a light at the end of the tunnel but I think the tunnel for me will be an endless one. It is just one of those things I have had to accept and come to terms with. If I ever get to the point that I can't take it anymore I will have a tough decision to make.Living on chemo for the rest of my life is not all that appealing.But I will cross that bridge when I get to it.
Deb

AnneCan
Posts: 3692
Joined: Oct 2009

I am sorry for your disappointment. If it is any consolation, I am on chemo indefinitely also. Although this can be very upsetting (especially on diconnect day when I feel at my worst), I try to remember this is better than if they gave a "finish" date + the date came + went but there were still tumours + they just said "your treatments are over". In the long run, it is better that they monitor changes + tweak treatments as needed. I try to (key word is TRY) live one day at a time but with three month plans based on how treatments are going. You know you can always come here + someone will have a similar expereince. Take good care!

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Hi Tessie, sorry you had to get that kind of news. I am currently doing drug trials and my fear is that I won't have any chemo to take! It is crazy what our minds can do with what info we are trying to process! It is indeed frightening to hear that it won't end and that you don't really have a "plan". I hope you will vent all you want, because later, you will accept that this is what is keeping you alive right now! As my new doc at UCSF said, we aren't looking to cure you with this treatment, but to keep you healthy until we find the one that will! I'm holding on to that for all of us that are using chemo for long term! Hang in there and when you can't take it any more, post hear and let your friends help you through! Prayers and best wishes to you! Jean

tesslee's picture
tesslee
Posts: 97
Joined: Apr 2010

you've really helped me. to understand and feel supported. i love you all, it's amazing how this common ground can bring you together. i feel guilt because i want to support all of you, but i get into depression mode and can't find words to offer to others. but i want everyone to know i read this daily and my heart goes to each and everyone here. i know some have passed on since i joined and it's hard each time i read this. but i have to say that i only got to know Donna from her postings and it hit me hard. i know none of us like this one bit, but i am motivated by a lot of you and admire many. tess

oh and my medical bills began in a pile on my desk until it spilled on the floor and that's where they go for now.

vhtqm1's picture
vhtqm1
Posts: 107
Joined: Feb 2010

i definitely have figured out this is in all out sprint all of the time. it seems we have to be fighting this disease at no less then 100% and the second you let up is when or if something sinister can happen. i'm a stage IV and thought i'll get through my first treatment which by the way went very well. was considered NED for about 8 months and was able to get back into surgery to have the resection, removal of any dead and or live cancer tissue and reversal of colostomy. well i too as most of us am still fighting and fighting with as much vigor as the day this all started. so, there's no letting up and here's to your success thus far and more to come.

ed

sasjourney
Posts: 395
Joined: Jul 2010

Hi,

I just finished #11 of my Folfox treatment and will be doing a scan soon to see where I stand now. My tumors were surgically removed and I have been NED since starting chemo. My onc. said that I have 3 options: 1. Continue with 5-FU 2. Just do Avastin 3. Do nothing and wait for scans. My body is telling me to take a break and wait for the scan before I start any more treatments. I am also a stage 4 and have talked with other stage 4's about their treatments after the initial chemo. It really varies quite a bit for each person and I know several people that stopped and just wait for the scans. It really is up to you and what your body can take. I do not think the oncologists really know what would be best, but give options and let each person decide.

You are in my prayers and you'll make the right decision for you.

Hugs,
Sara

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hello,

I can imagine how surprised and upset you must have felt (getting excited to be near the end of the 12 chemo rounds), to be told that you'll be continuing on with more. Sounds like your onc will want to do some "maintenance" chemo when you finish this.
Not everyone needs that but, honestly, I always wonder if I would be in a better situation right now if my then-oncologist had put me on maintenance chemo of some sort (Avastin and/or Xeloda maybe) after finishing my Folfox, radiation, and liver surgery. I had no chemo at all following my liver surgery and although I was found to be NED at that time, I had a recurrence four months later and have been on chemo ever since (that was 2-1/2 years ago).
Not everyone is the same, of course. If you do end up taking just Avastin or Xeloda, know that it is not nearly as hard on your body as the Folfox you are now taking.
Maybe you can at least have a month or two off before starting it, just to get your body strong again and get the toxicity of the Folfox out of your system.
I definitely recommend getting the opinion of another oncologist, preferably one associated with an NCI cancer center, who is not associated in any way with your current oncologist. Different oncologists do not always think the same & I believe it's always worthwhile to get an additional opinion- it may offer another idea or it may validate what your current oncologist wants to do.

I don't like the sound of your current oncologist's attitude, though- sounds way to abrupt and insensitive. Sometimes insensitive is still a good doctor, knowledge-wise, but I don't think I could stay with a doctor who was like that.

Best wishes to you-
Lisa

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