CSN Login
Members Online: 12

Survivor who did not have the second round of chemo

Cheyenne's picture
Cheyenne
Posts: 72
Joined: Apr 2012

Anyone here who is NED that did not get the second round of chemotherapy?

mp327's picture
mp327
Posts: 2972
Joined: Jan 2010

This was not my personal experience. I do know of some people who did not receive the 2nd. dose of mitomycin--I'm not sure about the 5FU.

horsepad's picture
horsepad
Posts: 84
Joined: Apr 2012

I did not have a 2nd round of chemo. My radiation oncologist said it was up to my medical oncologist. He did not suggest it. I didn't realize people have could/should have a second round. I see my other medical oncologist in a couple weeks and will ask about it.

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

I thought the second round was part of protocol for our type of cancer. I had squamous cell type. They had to reduce mine to 80% of dosage for me to continue to tale it simultaneous with the radiation since my counts were really low. My Oncologist said it was better to take a lower dosage and do it with the radiation for best results than to wait until the counts came up. Where were your treated. How long have you been cancer free? I think it would be great if people did not have to take that second round.

sephie's picture
sephie
Posts: 536
Joined: Apr 2009

i also had squamous cell and had the 2nd round reduced by 20 % and was in the hospital at the time. they just rolled me in on hospital bed and lifted me up to the radiation table and fit me in my molds. went to MDA. sephie

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

Sephie:
I could not believe they took me from my hospital bed and lifted me onto the radiation table as sick as I was but they did. I never missed a day of radiation during my treatment at Sloan. MSK is known for being a very aggressive cancer treatment center and that's what I got for sure. I would be happy if it was not necessary for others to have the second round of chemo.
But from what I researched it was protocol for Squamous Cell Anal Cancer at any stage. But it seemed odd that we would all get the same treatment. I hope everyone on this site gets a vaginal dilator from their radiologist! It's not something you think about at the time, but it will prove to be an important part of your treatment as time goes on and that's a good thing:-)

Cindy B
Posts: 9
Joined: Jul 2012

Hi sandy

Could you tell me more about your cancer....stage......how nauseous you were.....I'm starting treat eat soon.....scared.....had hodgkins lymphoma 23 yrs ago. Thanks Cindy b

horsepad's picture
horsepad
Posts: 84
Joined: Apr 2012

I am NED and had the traditional 2 rounds of chemo during treatment. I am not sure I understand. You had more Chemo after the original treatment and being declared NED? If so, why would they want to do more chemo if you are NED? I don't understand. Wouldn't you save chemo treatments for reoccuring cancer? I thought the human body could only take so much chemo and then doctors do not allow any more.

Phoebesnow
Posts: 448
Joined: Apr 2011

Apparently there are different protocols for tx. I insisted on the second round of chemo to include 5fu, they were only going to give the mito but I insisted on both.

I recommend all patients to do there research b4 tx.

Phoebesnow
Posts: 448
Joined: Apr 2011

Cindy don't be scared, u will be ok. Everyone here has gotten thru the tx and has recovered enough to live a full and productive life. It is 5-6 weeks of tx, which starts to become more difficult after the end of the second week for some not until the third week and others have no trouble at all. It takes a while to recover if u r badly burned, maybe another 2 weeks after tx.

Look at it this way. Weeks for years.

We r here for you.

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

I am sorry I missed your question here. I wasn't that nauseous. The drugs they gave me worked. How are you doing? Are you done with your treatment? I was stage 3 (T2N1MO) and all my scans are good now. It was rough but they gave me 80% of the dose (chemo) second time round. Make sure the people who treat you really know what they are doing. How are you?

sephie's picture
sephie
Posts: 536
Joined: Apr 2009

sandy, i got 80% dose on 2nd round also and was afraid that it was not enough. but they said i could not stand the full dose. but i did have the mito with it also. sephie

ecodancer
Posts: 4
Joined: Aug 2012

I had such a violent reaction to the first round that I am considering not doing the second. I developed severe colitis as a result of it. I'm also receiving Hyperthermia, which potentiates the radiation.

My counts are low, and I have major edema and weakness. I don't think I'll survive a second round; however, does anyone know anyone who had done only 1 round, and is 2 years out of treatment?

Thanks.

Ecodancer

mp327's picture
mp327
Posts: 2972
Joined: Jan 2010

There seems to be a small percentage of us who did not receive the 2nd. round of mitomycin. I, however, received both rounds and am a 4-year survivor.

rds711
Posts: 113
Joined: Dec 2011

Hi Cheyenne,

I got a larger dose of mitomycin the first round and then none the second, did get the 5fu
both times and I am NED. The mitomycin is so hard to come by or at least was in May, so my oncologist decided to do it that way. Hope all is well.

Randy

z810840b's picture
z810840b
Posts: 212
Joined: Jan 2010

i did not get second round of mitomycin .I was told that is the protocol.I also knew someone who was treated four years before me.They gave her second round of mitomycin ,and she was so sick..had to be in hospital for 3 weeks.She later found out it was a mistake..oncologist screwed up. Just saying..

Marynb
Posts: 1134
Joined: Aug 2012

I had mitomycin for both rounds. I am not sure whether I can say I am ned(for this cancer, I had 2 types) . I did not have scan after treatments, just dre and scope. Nothing visible to the naked eye, can I say I am NED really? I guess so.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network