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Opinions on what my options are

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hey All,

I go in Monday (8/10) for first PET/CT since 1st dx. I have been through 4 treatments thus far. CEA has went from 75 to 29. I don't really know if that matters. The following Thursday I see my onc. to discuss possibilities. He has always told me from day 1 that I have NO possibilities of anything other than chemo.... now he says I may have other options... WHAT??? He said he didn't say that but oh yeah he did. I would not mistake hearing words like that. Regardless, he said to wait and see what PET scan shows.

He said the 15 tumors shown in my lungs from CT scan taken at MDA my not even be cancerous. No way of knowing for sure without PET or biopsy. New PET should show a lot. I know some of you have had surgery or RFA or other things done at the same time you had mets in other organs. My onc says we have to rid lungs before liver can even be considered. WHY? I can understand surgery but something non-invasive seems to be right up my ladder. Let me know what you all think about doing treatment if you have mets to multiple organs. I need ammo to take with me to my onc visit.

Oh yeah.... something else I wanted to tell you. I got sores on my mouth and remembered what you all said about the Magic Mouthwash. Called onc for rx. He said he never heard of it but would give me an rx for some stuff their group uses. It is called Popovic's Solution. It kinda made me mad cause I didn't want his stuff I wanted the Magic Mouthwash.... but I was hurting so I used it. My mouth got worse. I was quite mad then. When I called him back it hit me that Popovic was one of the doctors in their group and they gotta be making all kinds of money off this stuff. No wonder he never heard of Magic Mouthwash. He replaced it with some other stuff and it still don't work.

Depending on what info I get as far as options from this onc.... it may be time to look into another opinion. Thanks guys!

Jennie

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hi Jennie

What do I know? But here are a few thoughts...

First your CEA falling is a good sign - they are not falling for nothing. In your case, I think this is a good sign. Why? Because your numbers were high to begin with and have shown evidence of falling since you started treatment. Now, if you were one of the people who had a low CEA to begin with and it stayed about or nearly the same, the CEA might not mean anything. But I believe in your case, this is a good sign.

For the lung mets, I agree, the PET should at least be an indicator, because you will be able to see if any of those spots show uptake to those areas and what the corresponding value of that uptake would be. While it could be true that some of them may or may not be cancerous, I would think they would want to do another CT scan to go along with the one you did at MDA. If the spots have grown, that is a possible indicator of Cancer activity. Combine that with the PET to see if there is uptake and some answers should come out of that.

Wanting to clear the lungs before moving to the liver - the only thing I can gather from that is since it has spread from the liver to the lungs, maybe they are thinking they need to clear the lungs to stop the advance and then can double back and work on the liver to prevent future metastasis. Not really sure, but will be interested in what you find out here.

I don't know of anything that is a non-invasive procedure for the lungs or liver. I'm not sure how they do RFA for the lungs...but with the liver, it would more than likely be an "open" procedure, because the surgeon needs room to get around in there, especially if there are tumors involved, depends on the number and location.

CyberKnife is an invasive procedure too, because they have to insert the radioactive seed markers in and around the tumor for the device to know where to "cut." This might be laprascopic as well, but would probably be an open - it usually follows the RFA and they have you open anyway, so they can lay the seeds down at that time.

And I don't doubt that you are right on the Popovic mouthwash! It seems like they used the old "bait and switch" on you there. And with all things in life, money is the root of all evil. I read recently where 80-90% of an oncoligists revenue is derived from chemo. So, nothing surprises me there.

I know that MDA was a bust for you and everybody touts it as the best in Texas. And maybe it is good...but that would mean that the hospitals that I went to were not. I did my RFA and CyberKnife at Baylor Medical Center in Dallas. I'm currently working with UT Southwestern, which is very highly regarded as well - they even consult with MDA.

I'm still playing my hand right now with UTSW to see what my future holds, but these would be considered good reputable hospitals as well - if you ever decide to try Texas again.

Well, there's my opinion - that and $4 will get you a Starbucks coffee.

Will be very interested in hearing about your results and subsequent meeting. I've got a CT next week and then I meet with the onc - and wait for the hammer to fall.

Take care
-Craig

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Hi Jennie,
I think it sounds great that your lung spots may not be cancer. Also that they are doing a scan so soon. John will have 12 treatments and have to wait a month before a scan. So, if they can give you good news this far in that will be great. As far as the magic mouthwash goes John's onc called it in for him. Do you have a family doc that might call it in for you? John hasn't had to use it because by the time he got it the sores were gone. We have it in case. You are right you don't forget when they tell you Chemo is your only option. I have scheduled John to see another doctor on the 28th. Luck to you Jennie, Paula

amcp
Posts: 251
Joined: Jan 2009

My husband Frank had a lung Met and also multiple liver mets. They said they had to go in and remove the lung met to make sure that is was a met from the colorectal cancer and not lung cancer. He said it made a difference. They would not do the liver resection until Frank had the lung met removed and he healed. This was rough because it gave the liver mets time to even get larger and grow and attach to his diaphram. After the lung surgery they told us it was met. not lung cancer. This was all done at Vanderbilt. It all worked out okay for him.
Keeping you in our prayers
Anna

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

http://www.drotterholt.com/magicmouthwash.html

The pharmacy I am sure knows about it.....

Paula I have had about 4-5 scans since November. My ONC said you should have an intial scan to see what activity has been going on in the body, since treatment.

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

CEA coming down is good. Possible surgery candidate is good. Get your doctor off his bottom. Print out a description of whatever it is you want to take, you can probably get it from the company website, have him look it up while your in his office and tell him you want to try it. If he fails to satisfy your request, start knocking things off his desk and off his book shelf, get really loud and make a fool of yourself. There is no better reason for getting rowdy. Another good sign is the approach they are looking to take. It sounds as though you have more extensive disease in your lungs than liver. If so that is an extremely good thing for now. Liver failure is your biggest threat with colon cancer, by a wide margin, around 90% of deaths are because of liver failure, 10% by everything else. Controlling the liver disease with chemo and removing the extensive lung disease reduces the chance for further spread in the liver. If you can get the lung disease under control. They will be able to remove what ever is left in your liver fairly easy. Sounds to me as though things are really looking up for you, congrats!

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I agree with the scan stuff. I think it should have been done more. How in the h*** do they know if it is working if they don't scan? We have asked. I have him scheduled to see another Onc on the 28th of this month and her office told me that it wasn't all that uncommon to wait until twelve treatments are done and then wait a month for things to calm down and then scan. But after she heard the story her scheduler called me back and said that she would see him and get all of his records and go from there.I don't like this Onc he is seeing but don't want to burn bridges either. Thanks for the info and Jennie I think it is a good thing that they are going to do another scan. I hope you get good news. Paula G.

kidlife's picture
kidlife
Posts: 8
Joined: May 2009

Jenny, I was diagnosed at the Mayo Clinic May, 2009 with Stage IV colon cancer of the sigmoid area with mets to liver and 3 very small spots on the lung. Mayo claimed liver was inoperatable, recommended colon resection right away and the compromised lung was not even a topic for discussion and that chemo. was my only option. Well, being from NYC, I opted for a second opinion at Sloan Kettering and here's what's going on: first a team was quickly placed together, they said to wait on the colon resection and do chemo (heavy duty chemo) for 4-6 months, pet scan after the 4th round which I am headed for tomorrow, liver surgery at the same time as colon surgery. YES, they said operable without chemo. results being the deciding factor. On the 21st I will be checked into the hospital to have a left-lobe liver embolizaton, where a gel-like substance will be injected into my left liver. That will cut off blood supply from the damaged side and reroute blood flow to the healthier side of the liver. By the time he does the liver surgery my healther side would have grown and the unhealthy side with the 4 two cm. tumors will have died. During surgery the dead side with be removed and recovery, along with complications will be more positive because the healthier side would have grown. During that same surgery on my sigmoid will be removed along with whatever she decides. My doctors there are: colon surgeon, Dr. Temple. Magical liver surgeon, Dr. Fong and Onc, is Dr. D'Adamo. Oh the lung... they suggested I meet with the lung doctor after the surgery. In addition, the onc. and liver doc. felt the chemo would be sufficient for the lung, essentially because they were in a preferred location and less than 1/2 inch in size. Personally, I like the idea of surgically removing cancer related anything, any size.

So, as I mentioned in an earlier post to you, I feel Sloan Kettering is crucial for a second opinion for advanced stages of cancer. They are agressive than most centers, based on my experience. If you need help on this end, I will gladly help.

All the best,
Naira

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Thank you all for your wonderful input. I feel I have some information to play with now. Naira... If I do not get the treatment I am looking for here I definately will be going to Sloan Kettering. Ihave already checked with my insurance and I am covered there so I am just waiting to see what this onc tells me my options are. I think he will suggest another 4 rounds of chemo but I just don't know if I want to wait or SHOULD wait. Thanks for offering to help and I may just take you up on that. I will keep you all posted next week on scan results and what onc suggests.

Jennie

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

I suffer the same thing..
1) get on a Rinse and spit regimen. All day long rinse with water and spit (or drink if thirsty!)
2)Get Biotene Toothpaste and mouthwash- OTC. No alcahol so less burning when you brush your teeth.
3) Magic mouthwash is maaloz and lydocaine. The pharmacy can certainly make it. It helps numb the mouth for a while and will ease pain of swallowing foods that are textured. I only eat smooth slippery foods with my mouth sores.

Good luck!

Peggy

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I tried a Colgate mouthwash today and whoa! I could hear the sizzling going on in my mouth. I am thinking it must have peroxide in it. It got all white on those sores and pieces of it was falling off... LOL...sorry... that really sounded gross. It WAS gross... and ewe wee... burned like a mf'r. I think it is getting worse cause it is hurting in my glands now.

Jennie

Paul 1959
Posts: 8
Joined: Aug 2009

Maybe this can be of help to you...
Sounds like it could be thrush a side effect of chemo.The oncologist prescribed NYSTATIN for me.In about week the mouth sores where gone and I have not used it since.
Also the oncologist said not to use mouth washes ie.Listerene Scope etc. as they can aggravate the condition.

Mike49's picture
Mike49
Posts: 269
Joined: Nov 2008

I mix my own, Maalox, Lidocaine and Benedryl liquid. I use very little of of the lidocaine because I don't like the numb tongue. It helps immediately and it speeds the healing.

My oncologist prescribes the Lidocaine and the nurses explained the mixture to me. Mouth sores are rough, it gets in the way of weight gain and nutrition too.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

There's a small tube of stuff you can buy at Wal-Mart or other pharmacies. It's with Oral-Gel. It's an ugly brown stuff and smells a little like road tar. You dry the sore and the apply the gel. It dries up and protects the spot all day. I get canker sores once in a while and this is the best stuff in the world. It costs about $7.00.

Diane

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Jenni,

Hope your Test come back good,

It may just be my observation, but does not sound like you like your Onc. Group very much.

Doctors canbe a Little hard to understand and tend to change there opinions alot, My Surg, team is like that, but since we have not concluded what my options are yet, I know i will have surg, on both liver and rectum mass, but when and in what order they keep going back and forth on, I have one more Chemo and then some more scans including an ultra sound of the rectum tumer and possible radiation, which i am not sure i want. I will keep questioning my Docs, Because thats what we all need to do until we are comfortable with the answers. If your not comfortable seek other advice. Your going to have these Onc, Doc a long time you might as well like and trust them. I love mine, and i trust them but i will question them if i don't like the advice.

I have heard of Magic Mouthwash but i have not needed to use it ask the pharmisist(misspelled) about it they know what it is.

My thoughts are with you.
Hugs and prayers
Winney

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