CSN Login
Members Online: 5

You are here

Chemotherapy forever - stabilizer??

jcavanaugh
Posts: 100
Joined: Mar 2004

Has anyone's oncologist ever said that they will probably be on chemo forever - part of daily existence to keep the cancer at bay. Is that possible - is cancer a manageable disease? Kind of like they treat diabetes, etc... Any thoughts??

apache4's picture
apache4
Posts: 272
Joined: Jul 2007

Hi! you didn't mention what Stage you are, etc., but I have been told that. I am stage IV, many mets in liver, had colon resection,
port put in and started chemo in 7/06. I had 16 treatments of 5Fu, Oxaliplatin and Avastin. Counts pretty good the entire time. Dr. said I needed to stop chemo, had NED PET scan in 10/07, 3 month CT scan showed new tumors in liver so started on Folfiri. I started that in mid-Dec and am on my 7th treatment as we speak. I have been told it is "treatable but not curable" and that it is manageable to a point (just being realistic). I always get scared when I have to miss a treatment (platelets have been low) and figure it is the beginning of the end...like what if I can't have chemo anymore? I am lucky that it has stayed in my liver so far as the other reality is more spread. Not to bum you out, but these are my daily thoughts. Meanwhile, I am very active when not tired. I go to Taekwondo class three times a week when not on chemo, garden alot, visit with family and I do live alone with 2 huge dogs, one small one and four cats. My love for these guys really keeps me going and, of course, family. Hope this helps a little. When I am "on the pump" I am not thrilled with the situation and when I can't have it, I am not either. Whew! My best to you.

AuthorUnknown
Posts: 1560
Joined: May 2006

My DH is also stage 4 and has been on/off chemo since 7/05. I don't think that the onc has ever come out and said that this is like a chronic disease. He said that the goal is remission. Since we do not have remission, then yes, it is ongoing. I have read articles that state the new way of thinking (among onc) is to treat this as a chronic disease. I am not the one getting stuck every week but I think that chronic disease would be an step up from previous thoughts on stage 4 colon cancer. It really sounds better than the 5-10 percent survival at 5 years. I do not know how long you have been on the drugs but it seems for us it has just become a part of or week. On Monday we go for chemo and the rest of the week we deal with life in general.

shmurciakova's picture
shmurciakova
Posts: 910
Joined: Dec 2002

Hi J,
I know a lady who has been on a variety of treatments, including various "cherry picking" of tumors as she calls it, for 9+ years at this point. She has only been in remission breifly, for 3 months I think during this entire time. She has been treating this as a chronic illness. And think about it, the first 4 years or so of her treatment they didn't even have anywhere near the technology that they have today. I don't know what all mets you have at this point either. Just think, when I was diagnosed, six years ago, they didn't even have Oxy or Camptosar, Xeloda, Erubitux, or Avastin. They didn't have Sir-spheres, and I don't think they had the Gamma Knife either. My doctor at MD Anderson is working on these radioactive nano-tubes that will be injected into a patient, hook up with liver tumors, and then are activated somehow wherein they zap the cancer cells, but don't harm surrounding cells. They then, I believe will be peed out. This has already been tested to work in animals. So, there are all kinds of nano-tech things that are going to come to be here shortly, little microscopic robots that carry chemo directly to cancer cells, etc.
So, you just have to hang in there, because the "rest of your life" is really a lifetime when it comes to medical progress.
Best wishes,
Susan H.

kmygil
Posts: 881
Joined: Feb 2007

Hi. I was not told this by my oncologist, but I had chemo on the same day as a breast cancer survivor who has had weekly chemo for the past 10 years. She said she looked at it like a chronic condition much like diabetes. She takes her chemo once a week like a diabetic takes his/her insulin. She is one of the most inspiring people I have ever met.

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi -

I was told to expect chemo forever and that with good luck we could manage my Stage IV disease as a chronic disease. That was in early December 2005 after my 6th treatment with Xeloda / oxaliplatin / Avastin (diagnosed May 2005). (I had previously had scans after 2 cycles of chemo that showed almost complete resolution of liver metastatic disease, so we thought I was doing as well as possible.) Our plan was to take a 2-month chemo break to allow some recovery and resume. My mid December PET and CT scans were clean. I have had 10 PET and CT scans since then (plus a couple of MRI's) and all is still clean! So, I am still on that break.

I'll grant I have a personal perspective here, but I think being told this might be a manageable chronic disease is actually pretty good news.

Take care,
Betsy

tonya12
Posts: 3
Joined: Oct 2018

Betsy,

That sounds like good news.   i was diagnosed march of this year with uterine.  i had surgery.  I had three chemos that were so hard they put me in the

hospital.  i had some bleeding so they gave me radiation.  My spots have shrunk and are partially neucrotic( dead)  so i am thinking this is good news.

They said it was a good cat scan.  In July,  my cancer marker was 9.  But they say i will be on it forever.  I am just wondering how i can do that.

i don't think i can live like that.   thanks, Tonya

cjf2006
Posts: 84
Joined: Dec 2007

I have been told that by my oncologis as well. I'm stage IV with mets in liver and lungs, and have had colon resection, and various chemo regimens. Am currently taking fofiri w/ Avastin and may switch to Erbitux soon. I get breaks because I need them, not because the cancer has retreated.

tonya12
Posts: 3
Joined: Oct 2018

i was told the other day that i will be on chemo forever.  I freaked out.  i was hoping to go into remission.  I have a two spots and they

have both shrunk and are partially neucrotic.  That means partically dead.   So i was hoping to not be on much longer.  That is when the

doctor told me i would be on chemo for a long time.  if you have to do it every week,  i wonder if is any easier dosage wise,  cause the chemo

just wipes me out.  If i could take a pill or do a lighter dosage where i could still live,  i think i could handle this.  But i have troube driving,  i have

to have a care taker.  if i am going to live with this ,  i am going to have to get back to being a little like myself.  Anybody ever get back to sort of

normal living on chemo?

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

Sorry you are here Tonya, but it is a good place for help and support.  This thread is very old, last posts from 10 years ago.  You can start a new thread and introduce yourself at the link below if you like. (Sometimes older threads that get bumped do not see as many responses.)  As to chemo, I am going back on it Monday and it looks like it is for the rest of my life also.  Thought I was done with it, but nope. Sigh.  I made it through the first time every other week fairly well.  The week on chemo so-so, the week off chemo a mini vacation :)  Try to plan for the good weeks to enjoy them as much as possible.  Also discuss the chemo with your doctor.  Perhaps a different mix, certain steroids in the mix, etc may help with the issues.

https://csn.cancer.org/forum/128

 

Annabelle41415's picture
Annabelle41415
Posts: 6222
Joined: Feb 2009

Sorry that you are going through this.  PhillG was on chemo for many years and used to post regularly.  He handled it very well, continuing to do his daily activities.  I'm sure he is still around, but has not posted for some time, just wanting to move on.  It's best to post your own thread to see if others will respond.  Wishing you well.

Kim

Subscribe to Comments for "Chemotherapy forever - stabilizer??"