IMPORTANT QUESTION ON FOLFOX!

lp1964

I' m visiting from the rectal cancer patients, however since my cancer is right on the anal sphincter my treatment is very similar to yours except that in September they have to remove my sphincter and rectum.

 I just had a visit with my oncologist and everything is looking good.

He presented a plan to me that is different than what I was told at the beginning and what I heard from other patients here which was that you get all your Folfox treatment after surgery. He suggests that since I tolerated Xeloda a radiation so well and my blood levels look good why don't we get part of the Folfox treatment done before surgery which would be sometimes in September. He said it would be silly not to give me any treatment for two months and toldd me that if we stopped Folfox before the surgery it will not interfere with my healing capacity.

The questions that I forgot to ask him or came up since I talked with him:

Has any of you had treatment protocol of what he he suggested?

What is a "pick" and where do they place it?

What is your experience with the pick and the pump?

What kind of side effects should I expect and what are the remedies? 

Your help and support is greatly appreciated?

Laz

RoseC

Hi Laz

Anal cancer is treated with 5FU and mitomycin C or cisplatin, so I can't help you with the Folfox question. Anal cancer treatment normally consists of 6 weeks of radiation with chemo being delivered in weeks 1 and 5.

As to how the chemo is administered, with our treatment we were offered either a pick line or a port. I had the port. It was a small device (about 2"x2") inserted under the skin near the collarbone. Small tubes ran from the port to the pump, which was put inside a fanny-pack-type-thingie that was worn around the waist. The installation of the port was an out-patient procedure and wasn't painful (for me) at all. I've heard of some people having issues with it, but not many. The chemo ran for 96 hours then the pump was disconnected. I liked the port idea because the nurses could draw blood from it and thus save some wear and tear on veins.

The pick is similar in operation (ie, the pump in the fanny-pack) but as I understand it the pick line is removed completely after the chemo is delivered whereas the port stays in your body. The pick line (again, as I understand it, and someone who has had one will hopefully chime in with more details) is like an IV line in your arm and is removed after the chemo is delivered.

Hope this helps, and I wish you all the best.

mp327

Hi Laz

I don't know anything about Folfox, so I'm unable to give you any input about the treatment protocol your doctor has suggested.  The only thing I can say (and I would suggest asking your doctor about this) is certain types of chemo can only be given for so long before they become ineffective.  If giving you Folfox before your surgery would limit the length of time you could receive it post-surgery before it was no longer effective, would this be an issue and are there alternative chemos you could receive should that happen?  I would definitely ask. 

I had a port, so I don't really know much about picc lines either.  However, many people get them and have no problems with them.  They are inserted into a vein in the arm and run up to the same artery/vein that a port is inserted into.  Often, picc lines are removed after a round of chemo, but some people have them left in for the duration.  These would be questions for your doctor. 

As for side effects, since Folfox is a different chemo drug than I received, I can't tell you about that.  A Google search will give you a list, I'm sure, of possible side effects. 

The pump was a bit of an inconvenience, but not really a problem.  The fanny pack held it just fine and sleeping with it was not a problem for me.  Bathing is a challenge, but you can take a bath and lay the pump over the side of the tub.  Normally, there is enough tubing in order to do that.

I wish you all the best.  Let us know how it goes!

jcruz

picc line vs port

That's the only part of this that I can address.  I had a port and once the site healed after the surgery to put it in I thought about it very little.  Any day that I went in for chemo or for hydration I slapped on a bit of emla cream, covered it with a piece of Press and seal and the site was good and numb for the nurses to access.  I had my port removed (an office surgery) once I got the news that I'd had a negative biopsy and no longer had cancer.  I think the picc line involves more maintenance than a port.  My brother had a picc line when he was receiving chemo for his colon cancer.  He had to flush the line every day and I think he had to be careful about not getting it wet. 

z

Laz

I had the standard tx for anal cancer, which is 5fu and mito, no folfox.  

I see you have to have the rectum and anal sphincter removed, does your dr have any hope that the folfox will shrink the tumor enough to perform surgery in hopes to save the rectum and shpincter?  Have you had a second opinion on your diagnosis and treatment?

Please keep us posted and I wish you well. Lori

sandysp

z said:

Laz

I had the standard tx for anal cancer, which is 5fu and mito, no folfox.  

I see you have to have the rectum and anal sphincter removed, does your dr have any hope that the folfox will shrink the tumor enough to perform surgery in hopes to save the rectum and shpincter?  Have you had a second opinion on your diagnosis and treatment?

Please keep us posted and I wish you well. Lori

I'm with Lori

Two doctors told me I needed the surgery you are describing "right away". We looked a little harder and found for the cancer I had, like the others on the board here (or most of us) surgery was not the protocol. Some doctors really have never seen anal cancer before. Mine had spread into my rectum and even to my colon - I was stage 3 with lymph node involvement. I was my gastro doctor's first case and he got it ALL WRONG. Then my internist took the recommendations and set me on a terrible path. I am so glad I did not have an HMO or I would have been referred to an unecessary surgery and still would have needed the chemo and radiation that we had.

Even if you have to make big sacrifices right now, get yourself to a cancer hospital that treats anal cancer regularly. It's a rare cancer so many of us have had to travel. From what I have heard here, Cleveland Clinic, MD Anderson and Memorial Sloan Kettering are some of your best bets but I am sure there are others here who may be able to recommend other places to get a second opinion.

Take care,

Sandy

pializ

sandysp said:

I'm with Lori

Two doctors told me I needed the surgery you are describing "right away". We looked a little harder and found for the cancer I had, like the others on the board here (or most of us) surgery was not the protocol. Some doctors really have never seen anal cancer before. Mine had spread into my rectum and even to my colon - I was stage 3 with lymph node involvement. I was my gastro doctor's first case and he got it ALL WRONG. Then my internist took the recommendations and set me on a terrible path. I am so glad I did not have an HMO or I would have been referred to an unecessary surgery and still would have needed the chemo and radiation that we had.

Even if you have to make big sacrifices right now, get yourself to a cancer hospital that treats anal cancer regularly. It's a rare cancer so many of us have had to travel. From what I have heard here, Cleveland Clinic, MD Anderson and Memorial Sloan Kettering are some of your best bets but I am sure there are others here who may be able to recommend other places to get a second opinion.

Take care,

Sandy

picc

Hi there! I had a picc line. On you tube they show it being inserted. It really was not a terrible procedure. My weekly bloods were withdrawn through the picc. It needed flushing every week. It was taken out a couple of days after chemo was completed. I purchased a protective sleeve to enable showering. When pump was attached I used the bath trailing the pump over the side of the bath. I had no problems with the picc. I hope this helps. Liz

jcruz

folfox

You may have already seen this but I thought I'd share in case you hadn't.  It's one person's account of folfox

http://voices.yahoo.com/folfox-chemotherapy-firsthand-experience-11841356.html