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anyone have second round of chem for residual mass?

erikire
Posts: 11
Joined: Nov 2013

Went through 6 weeks of treatment - radiation and chemo - second PET scan revealed there is still a mass an it is still active although it is much smaller and much less active.  Medical oncologist is recommending second round of chemo - mitamycin booster + higher dose of Xeloda.  Trying to avoid surgery.  Has anyone else gone through a similar approach and what was your experience.  Many thanks. 

Marynb
Posts: 1134
Joined: Aug 2012

Hi. Sorry this is continuing for you. I am just wondering if you had 2 weeks of chemo duirng your six week treatment. Also, I had 8 weeks of radiation and 2 weeks of chemo with Mitomycin and 5FU. I thought that what I had was the standard accepted protocol? Where were you treated?

pializ
Posts: 256
Joined: Nov 2012

Sorry on your need to discover this site. However, you will find it really helpful. Lots of support.

How long ago did you have your treatment? The radiotherapy remains active for about 6 months.

Liz

erikire
Posts: 11
Joined: Nov 2013

I ended treatment on Aug 5th and this last PET Scan was about 3 months after treatment.  My radiation oncologist told me it would be working for 3 months after treatment, not six.  I am meeting with him today and will get more information.  Thanks for your support and reply. 

erikire
Posts: 11
Joined: Nov 2013

I had 6 weeks of radiation and chemo combined.  Chemo was Xeloda pills plus one Mitomycin booster.  Treated at St. Josephs in Houston + Oncology Consultants.  I researched Xeloda option and found that it is used in place of 5FU these days.  What was your story/experience?  Thanks....

Marynb
Posts: 1134
Joined: Aug 2012

I was told that the use of Xeloda for anal cancer was not research based and that the proven protocol was 8 weeks of radiation and two weeks of chemo with a combination of Mitomycin and 5 FU. I really suggest that you seek a second opinion at a top rated cancer hospital, if you can.

mxperry220
Posts: 357
Joined: Mar 2011

I had 6 weeks of radiation 30 radiation doses and 2 rounds of mytomycin and 5FU.  My treatment ended 1-15-09.

Mike

erikire
Posts: 11
Joined: Nov 2013

Heading to meet with doctor later today and will review these concerns.  My hopes were very high after first PET Scan and my oncologists had experience curing this type of cancer (mine is rectal squamous cell which is especially rare). 

erikire
Posts: 11
Joined: Nov 2013

I asked about the protocol and essentially, Xeloda transforms into 5FU and has the same benefits but is much easier tolerated.  It appears to have worked after all, as my original concerns were put to rest about the success of the treatment.  While I was not treated at MD Anderson, I do think I am receiving excellent care. 

erikire
Posts: 11
Joined: Nov 2013

i am greatly relieved after meeting with Radiation Oncologist, Dr. Kessel.  Radiation Oncologist's opinion is NED - no evidence of disease.  However, because my cancer was in a location where it is typically not found (squamous cell in rectum), as a precautionary measure, Medical Oncologist is recommending a second round of chemotherapy.  Rectal cancers (non-squamous) are more likely to spread.  My understanding is that it is purely preventative and although I don't relish the thought of 3 more months of chemo, I don't want to have any regrets.  I'm not looking forward to it but I am looking forward to being a cancer survivor.  :-) So my fear that the treatment was unsuccessful was unfounded. Its so amazing how communication styles between doctors can send such different messages.  Dr. Kessel showed me the PET Scan from before treatment compared with the scan from this week and you could clearly see the difference.  He said its hard to tell how much is scar tissue and how much is residual mass.  But the difference in the "glowing" was literally night and day. 

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

This is wonderful news!  I am very happy that your fears have been relieved and all is well.  The additional round of chemo is just more insurance that the cancer is gone and will not return.  I would go for it too.  It's not always easy to remember when the chemo is wearing us down, but it is kicking cancer's butt and when you finish that treatment, you can focus on staying well.  Good luck and keep us posted!

Marynb
Posts: 1134
Joined: Aug 2012

Good luck with your next round of chemo! I really hope it works to rid your body of the cancer for good!

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

u said u had rectal cancer:    how did they do radiation on you???? did you lean over the table or was the radiation machine going around your body as you lay on a table.?? rectal cancer is treated differently from anal cancer in some ways.... just interested..... sephie

erikire
Posts: 11
Joined: Nov 2013

I laid face down with the three laser points - one near my tailbone, another on each side of my posterior and then the machine would go around my body as I lay on the table.  How do they do it for anal?  Thanks, Erik

Phoebesnow
Posts: 447
Joined: Apr 2011

I layed face down, three tattoos, tailbone and mid point of my side hips,  mycancer was classified anal, possibly rectal. Squamous cell.I also had two rounds of 5fu and mitomycin.

 

sephie's picture
sephie
Posts: 519
Joined: Apr 2009

i laid on my back face up on the table with my arms above my head in a stable mold and my legs in a mold with knees pointed outward to each side like a frog ... the machine rotated around my lower area some seconds at each stop (14 i think ).....i was tatooed for line up of radiation machine......sephie

Marynb
Posts: 1134
Joined: Aug 2012

Sounds like I had the same as Sephie.

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horsepad
Posts: 77
Joined: Apr 2012

I laid face up, legs in a mold but not frog style.  My arms had to be on my stomach holding a rubber ring.  I was marked all over pelvis area to make sure radiation was lined up exactly where needed.   A machine rotated around me, also beams coming from the sides and behind me.  I assumed this was standard way of radiation and everyone with anal cancer had the same.  I didn't realize some people laid face down

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

I received my treatments lying on my back with my butt and thighs in a mold that held my legs out in frog-style.  It became difficult for the techs to get me in the correct position using the mold, so eventually, they used two foam blocks, one under each thigh.  That way they could move one of my legs without having to move the other for positioning.  When they made that change, I had to go through simulation again.  The radiation machine circled around me, stopping at each point where a beam was delivered.  I think totally, the treatment took about 20 minutes each time.

I really don't know why some people get their treatment lying on their backs like I did and others are placed faced down.  I also heard of one case where a person got half of their treatment one way, then the other half turned over.  It may have something to do with the location of the tumor and trying to avoid radiation in areas where it shouldn't be.  It could be partly because of the type of machine used.  It may boil down to doctor preference or recommendation.  I just don't know.  This would be a good question for my rad onc and I'm sure he would tell me.  However, I haven't seen him for a follow-up in about 3 years since he released me from his care. 

Clovergirl
Posts: 46
Joined: Dec 2012

for me.  And I believe you and I have the same RAD ONC.  I guess it depends where your tumors and areas of cancer are.

erikire
Posts: 11
Joined: Nov 2013

Next meeting with my radiation onc. in three months I will try to remember to ask him about the position and why?  May have to do with anal vs. rectal.  Mine was high anal/low rectail - more rectal so they treated it as such. 

mp327's picture
mp327
Posts: 2848
Joined: Jan 2010

If your doc can give you any good insight as to the difference in treatment positions, we would love to know.  Thanks!

eihtak
Posts: 818
Joined: Oct 2011

My treatment also was on my back with legs open in mold (frog style). Gosh I sure don't miss those days, and pray for all going through this right now......just know you will make it as we have!

erikire
Posts: 11
Joined: Nov 2013

Next meeting with my radiation onc. in three months I will try to remember to ask him about the position and why?  May have to do with anal vs. rectal.  Mine was high anal/low rectail - more rectal so they treated it as such. 

Jo Joy
Posts: 39
Joined: Oct 2012

I was flat on my back with my legs together and my arms resting on my upper chest. The tumor was on the anal verge and was basil (sp?) Squamous cell carcinoma. I was required to drink 16 oz of water an hour before treatment. This was done to protect the bladder.  They knew from the initial scan before each treatment if I hadn't drank enough. They could also tell if I was constipated. There was twice when the machine stopped because it was off by a micro millimeter.

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