The Colon Club

I guess my question is....has anybody not had the full 12 treatments and everything was alright?

.... I am done with chemo. Went Wednesday for tx and onc said, no more, your body can't handle anymore!
He said, while he wasn't thrilled, I did get in 10 tx, 8 tx with the oxi. I will have a CT Scan on the 13th, see him for the results on the 20th. Then he will arrange to have the port removed. I am sooo happy not having chemo anymore If I felt better, I would be throwing a party!
The onc gave me a medication for the neuropathy, hope it works! He said I might want to see a neurologist, in case
he missed something. I started the medication this morning (Lyrica), been a little dizzy, just ate and my stomach isn't feeling so hot......I want to feel better, not sick again!
I'm not sure which is worse, the neuropathy or feeling sick.....
I'm looking forward to the day that I feel "normal" again! I do have to say, I don't have that nasty taste in my mouth anymore

Carol,

No two people are the same and your body can only handle what your body can handle. You didn't say what your side effects were that made the oncologist say no more treatments but it had to have been of concern to him to have done stopped treatment. No matter how much he or you may have wanted those extra two treatments, if your onc feels that you can't handle them, then you have to respect his/her decision. Your body is telling you that it's had enough and you have to listen to it. Oftentimes the risks associated with more chemo far outweigh any benefits that you might reap and all those parameters must be taken into consideration. Many people can't finish their treatments and still come out just fine.

The Lyrica was originally developed as a pain relief for patients suffering from Diabetic Neuropathy. While Lyrica will not 'cure' the neuropathy, it can and does help with the tingling and burning sensation that can be associated with it. I have neuropathy and neuritis from repeated foot surgeries (not at all related to chemo) and know exactly what you are going through. Lyrica, unfortunately, did not work for me but that doesn't mean it won't work for you. Please give it a try as many many people find relief on it. One of the side effects, unfortunately, is the dizziness. Here is a link to the Lyrica website about the side effects of the drug.

http://www.lyrica.com/content/main_side ... ffects.jsp

Good luck and congrats on finishing your chemo. Good luck on your upcoming scan.

Jaynee

Jaynee,

Thank you for your information. The side effects I was having was every side effect possible. I think what made the deciding factor with my oncologist was how bad the neuropathy had gotten. It goes from my feet all the way up to my waist. I also have it in my hands and feel it in my arms also. He (my onc) had told me it won't cure the neuropathy, but help with the symptoms. I'll take the Lyrica for the weekend and see how the drug and I do.

thanks again

Carol,

That truly is some pretty bad neuropathy and it sounds as though your onc is totally on track! You shouldn't do any more chemo if you are having that type of reaction to it. I can't imagine how you are handling it. I remember when my mom had diabetic neuropathy in her calves and she was in miserable pain. Honestly, I had no idea what she was dealing with until I got it. Mine, however, stays in my feet and ankles and will never go away because of the damage done during foot surgery. You must be so uncomfortable! Please, unless the dizziness or other side effects get so extreme, consider giving the Lycrica more than just a few days. I realize that it's difficult to balance this all out, but giving the drug some time may very well prove to be beneficial.

You are an incredible woman to have put up with neuropathy like that. I will keep you in my prayers for a quick and complete recovery.

Jaynee

My husband was taken off of Oxi. 2 treatments ago and is now on Folfiri. He could feel the cold sensitivity during the infusion and then could not drink for about 5 days. I would get on his case so he would not get dehydrated. He could mainly do hot drinks only for the first 5 days and he is not a hot drink lover. The Folfiri does not have that problem but it does make him way more nauseous the first day of chemo but he felt it was worth it to be able to drink fluids a lot sooner. He is off of chemo for a little while until liver resection surgery is decided on.

I hope all goes well for you.

Tracy

My chemo nurse told me she has only had 4 patients who made it through 12 treatments of FOLFOX - most have to stop early due to one side effect or another from the OXI. If you made it through 10 - GOOD FOR YOU!!! Pat yourself on the back and while you're resting, think of the party you can have when you regain some of your strength back.

I'm with NWgirl, 10 treatments, YEAH!!! I've read about so many stopping as little as one so 10 (8 with oxi) sounds like a good number from what I've read. I'm sure a lot of people on here that haven't had the full course will post soon. It's always a little slower on these boards on the weekends. As far as the Lyrica goes, a lot of times the side effects from medications will go away after a couple of weeks so give it time if you can handle it.

Good Luck!

I should and hope to be on my 12th cycle this week. My platelets are low, but ususally creep up when I get blood before being ok to begin the weeks' treatment.

I have neuropathy in hands, throat and feet, but not as bad as some of you report. My bowels are a mess, and I have extremes of constipation to diahrea. I have also been very nauseaus. I vomit out of the blue, and then feel ok. Its all so weird!!!!!

But I am taking it all, cause I want to finish wek 12. I want to do the best for me, as long as I can handle it.

ONWARD!

Joanne

I made it through 11 rounds before I declared that stuff was going to kill me and I couldn't take it anymore. I listened to my body and I knew I had had enough. My onc was very supportive and said 12 was not a magic number. I've told this story before but it is worth repeating- The only one who gave me a hard time was the chemo nurse, who did not hide her disappointment in me and said I would not get my chemo graduation party.
I have terrible neuropathy but I keep telling myself it's a small price to pay for my life. I have a lot of balance issues b/c my feet are numb. If I close my eyes, I fall over. I am learning to live with it b/c I don't think it's coming back. I have seen no improvement and it's been 6 months since chemo ended.

I am trying to figure out why no-ne except me (it seems) has tried the 're-builder' for neurapathy pain-numbness-tingleing etc.
I have been on 3 chemos (in the last 5 years) that causes this. And in the very beginning I started the re-builer right away and have had NO neurapathy of any kind!!! Why hasnt anyone tried this? I have posted it many times. It is FDA approved for the pain etc. My insuranced covered it becasue it is a 10' unit. It is so easy to use. Only take 1/2 hour of day! Physical therapists use these all the time to treat pain, tingling, numbness and more. sue

http://www.rebuildermedical.com/

Sue, tell me more about insurance covering it????

Thank you all for all your support! I'm glad to hear that I'm not the only one who didn't make it to treatment #12.
Sue....I checked out the site you put up, the re-builder. If it's a 10's unit, my husband has one for his back, I think
I should give that a try first....and go from there.
I have taken the Lyrica for 2 days now, other then occasional dizziness, I'm okay with it. I haven't seen a difference
in the neuropathy, but I'm sure it will take time, not an over-night thing.
Joanne...Congratulations for making it so far in the treatments! You GO girl! I never had a problem with the platlets.
My problem was always my white blood count. It would go down to almost zero, so always had to get the neuporgin (sp?)
shot. That shot is no fun either, causes bone pain, feeling sicker than you already feel.
Thank you to all for prayers....I believe the prayer warriors that have been praying for me is what has gotten me this far.
Every day I pray for everybody on this board.
God Bless you all!

mpeters, I hope you told that nurse thanks for being so understanding and caring I don't know what's wrong with some of these nurses, ESPECIALLY chemo! My mother in law had cancer and (it came back several times and was not colon/rectal) she had to have an MRI because she was having horrible back pain. She called the nurse for the results and she started crying because she was scared. The nurse told her she was being a big baby! I was so mad, I called that nurse (by the way, I'm an RN) and gave her such a piece of my mind. Guess what, my mother in law had a big tumor on her thoracic spine and died! Thank God most oncology nurses care about the people their working with. Oooo makes me mad thinking about it again!

Apart from the learning process after the first treatment cycle, I had no neuropathy until after the tenth. The RNs at my centre start each cycle with pages of questions ( really foraging for info). Because of my lack of history of neuropathy it was also brought to the attention of the clinical nurse. After discussuon with the onc. on whether to reduce dosage or discontinue the oxi, the treatment proceeded at full dose ( 195 units) to the end. The CN mentioned that there is a lot of evidence that the last 3 doses of oxi have negligible benefit. My solicitor ( attorney) was Stage 3c, and is still NED 6 years after chemo. And all he got was 5FU. I wouldn't lose sleep over the lost treatments. 6 months after chemo I still have some neuropathy but it is slowly fading. Very slowly. I consider myself to be very fortunate in both my reactions to chemo and the attention that I received from the nursing staff. Some of the stories I have read on this forum are chilling.

There was just a report at the ASCO conference this summer that intermittent Folfox may actually be BETTER than the full 12 doses. In intermittent you do 8 cycles with Oxi, 8 with just 5-fu and then another 8 with oxi. Doesn't sound like this is an option for you because the 5-FU is hard on your white counts as well. But you can only do what you can do. Your body is clearly telling you to stop!

You are a major trouper. I would have dumped the Oxi long before you did!