Done with chemo...Now What???

pluckey

After weekly chemo from April 2009 thru June 2010, I am done with chemo. I had a few breaks during that time due to infections, blockages, and other delightful set backs.

Then, as many of you know, I found my way to Sloan Kettering in March 2010 and had 8 tumors removed from my liver and one ablated. There is no protocol for post-resection chemo. Some believe that doing chemo when there is technically No Evidence of Disease, is stupid. Some people think some chemo is a bit of insurance.

I had 4 cycles post surgery and just had a break due to family and vacation etc. I went to chemo today, ready to do a few more rounds and I asked the Oncologist, OK, how many more cycles do you think?

Doctor basically said that doing "mop up chemo" is no guarantee that the cancer won't come back. If it's going to return, it won't be because I did or didn't do more chemo at this point. So, I said, let's end it.

Now, my CEA in June was 1.9 and today was 2.1. Still normal, but......?????

I'll do a CAT scan in 6 weeks amd blood work, then my first colonoscopy in September, since my diagnosis in March 2009.

So, now what? For 15 months, my life has been hospitals, surgeries, chemo, procedures blah blah blah.

I guess the mental/emotional battle begins. Re-establishing a life. Getting a job (hah, me and a gazillion other people) Learning to not live in fear and panic and anxiety of Cancer's Return.

Any Post Treatment Tips Welcome!!!!!

Peggy

Paula G.

I don't have any post tips
I don't have any post tips because my husbands will never be there. It does sound to me like you have a great plan in mind sooo GET ON WITH IT GIRL.
I am sure it will always be some place in your mind. Glad you posted good news and best to you. Paula G.

wifeandmom

Paula G. said:

I don't have any post tips
I don't have any post tips because my husbands will never be there. It does sound to me like you have a great plan in mind sooo GET ON WITH IT GIRL.
I am sure it will always be some place in your mind. Glad you posted good news and best to you. Paula G.

Hi Peggy
Hi Peggy,
I totally relate! I was diagnosed in April 2009 and it's been chemo, radiation, surgeries, infections, complications, etc. ever since. I had my last scheduled chemo a week ago and my PET/CT today (won't get results for a week, though). I've been wondering the same thing about "getting on with" post-chemo life (though I still have at least 2 more surgeries to get through).
If I get any insight, ideas or experience I'll pass it on. Otherwise, I'm on the journey right along with you and wish you all the best.
--Dorothy

AnneCan

Hey Peggy,
I am glad things
Hey Peggy,

I am glad things are looking so good for you. I can only imagine what a weird feeling it must be to be "done". Now you can deal with all the "regular" sttuff - job etc. Good luck with this transitional period. Thanks for posting; your story is very inspirational!

khl8

Here is the beat tip I can
Here is the beat tip I can give, I am 10 months post chemo and 9 months from the last surgery! Here goes...... ENJOY EVERY MINUTE!!!!
It may seem like you want to say " hey, where did everyone go?" We are so consumed with appointments, treatments, procedures, then all of a sudden, BAM you are done.
I personally was a little shocked at how quickly it all ended, but came to the realization that the panic I suddenly got when I heard the words "you have cancer" was the same as ehen they said the treatments were done, and the Onc said he will see me in a few months, the colorectal surgeon said see ya in 6 months.
So, relax, take stock of what has happened and to the best of your ability try and live your life, not as a cancer patient in treatment, but as someone who is a survivor! And this is a much better place to be!!
Kathy

ron50

just do it
Hi Peggy,
I am one of the old timers here. I was dx in 1998 with st3 colon with 6 of 13 nodes invoved. I was given 48 weekly sessions of 5fu and levamisole after surgery. It was so invasive that after i finished I felt quite abandoned. Fortunately I worked right thru chemo and the general oppinion all around was that I can't have been as bad as what I was telling people. Only my surgeon and onc knew better and they both thought I would not make it. I have been ca free for nearly thirteen years now but it never leaves you alone. I have had pancreatitis ,lost my gall bladder ,serious kidney problems ,extensive neuropathy and severe auto immune problems. In between all the garbage ,including my wife leaving me,I have worked non stop and tried to live as full a life as i possibly could . BUT that was me ,who knows what the future may bring for you. I hope you have a dream run and stay healthy ,wealthy and wise . I wish you good health and good luck,Ron.

thready

What to do now
Peggy,
It kind of feels like you have been fired when you finish with everything! I remember walking out of the chemo room thinking "what am I going to do now"? I have a job, my family has been fabulous, and I really enjoy getting back to the "normal" things I did before surgery, but there really seems to be something missing.

So I get up each morning and see the scars, feel the neuropathy, and think about the recent past, but then I remind myself that during the time I was going through everything that all I wanted was the simple-everyday things in life. That is what I look forward to now. I can tell you that first month was tough, I was not sure about anything. I felt abandoned by friends and family when I found out I had cancer, then when it was over I was feeling abandoned by those who helped me through it-it was actually quite weird! I have been told that when 10-12 months have passed all this seems like a very bad dream.

Best wishes to you, and let us know what you are up to!
Jan

5678dance

Post Chemo
Hi Peggy,

I had my last chemo 6 weeks ago. I had my base line blood work & PET scan, and all was well with those! I am trying to get back to "normal" whatever that is! LOL

I am finding that I am feeling better, but my body is not cooperating. I spent so much time, taking it easy, letting the poisons work their magic, and fighting off other things (small bowel obstruction & then a high fever)I am finding I don't have the stamina I used to have.

I am doing a little more each day. I overdid it over the holiday weekend, and I am paying for it, but still happy I am here, and able to do things! It still is a bit overwhelming, and yes, a bit lonely. I found that most people think that since I am through with chemo, that everything is great, but we all know it is not all great yet. Yes, being through is a VERY good thing, but I will be holding my breath until the next set of tests, hoping that nothing else shows up.

I am still maintaining my positive attitude, but still get frustrated that my body won't do what I want it to do yet. I do what I can every day, and sit down and take breaks when I need to. I have learned to listen to my body. We still have to recover from the poisons, and it does get a little better each week. Just hang in there, and live life the best you can!!

Hugs,
Kathi