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Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

I thought I'd share what two oncologists have told me and invite your feedback and thoughts and comments. Any insights you may offer are very welcomed!

I met with the small-town oncologist first. My diagnosis was a single tumor in the lower colon (just above the rectum). And a metastisis of the colon cancer in a single tumor in my lower right lung. Both the colon and lung have been resectioned with clear margins. I also had one out of 17 lymph nodes test positive with cancer. E.g. Stage IV diagnosis.

This first small-town oncologist suggested I should undergo FulFox + Avastin and radiation treatment. He also suggested I undergo another PET scan immediately (even thought I just finished surgery).

The second oncologist (from University of Michigan Cancer Center) recommended FulFox + Calcium and Magnesium (to help manage side affects from Oxaliplatin). He specifically said that radiation was not really an options given the location of the tumor and he said that there is NOT solid evidence that the Avastin would help and thought the risks vs. benefit did not justify this additional toxic drug (quoting a few recent studies on the use of his drug).

I really don't have a lot of faith in the small-town oncologist and the U of M oncologist really won my confidence in how knowledgable he seemed to be about the studies and about coloretal cancer in general. He also did an excellent job of explaining the treatment and side affects with me, spending a good 40 minutes going over material and answering my questions, even creating an outline of the info for my benefit. He also gave me his email and actually answered an email I sent him (within a few hours of me sending it).

He also was clear that he believes Stage IV colorectal cancer can be cured and that there are varying degrees of Stage IV cancer. For example, he suggested that someone with four or five nodules on their lungs differs significantly with someone with one nodule. He also clarified that the number of mets on the liver is less signifiant than where they are on the liver. And he suggested that even if I have a recurrence chances are another surgery could be done and additional chemo if required.

In my case (solitary nodule on lung and solitary tumor in lower anterior colon, both resected with clear margins) he suggested that it is curable and that he estimated a 40 to 60% chance of cure. He also estimated that there is a 70% chance of recurrence if I don't do FulFox chemo and that, although the data is not clear, he felt there was a 50% chance of recurrence if I did undergo the chemo (which he recommended).

How does this sound to you all?

Avastin comments? Radiation & Chemo comments?

Thanks in advance for your input.

Phil

ps. Today is my first day back to work, after six weeks off. I'm feeling good. :-)

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

Sounds good - no argument here. It sounds like he gave it to you straight.

And he prepped you for recurrence, so that's a bonus...because that's important, Phil...

Recurrence is always where the real fight with cancer is ultimately won - or lost. That's what makes cancer such a formidable opponent...it's relentless and floats and hides behind our organs even when it looks like the coast is clear.

So, knowing that you might do chemo and still recur is good to know - doesn't make it better - just makes you stronger about knowing of the possibility....and that if you do recur, that other steps can be made.

There are alot of bullets left to fire with you in your fight.

All that any of us can really do is try and do what is recommended to us from the options that we have available....tumors and cure are moving targets - and as such, are very hard to hit, especially the first time through.

But, we do as much as we can - hoping that we knocked it back some, maybe forever. But, that even if we do not...we can extend our lives by stretches of time that we gain through surgery and treatments....for some of us that might be a lifetime...for others, they get off at the next stop and don't look back.

As for Avastin, I'm with you...if they don't recommend it, I wouldn't beg for it. It's efficacy is doubled in combination with either folfox or folfiri....avastin by itself has not proved to be the answer....I did the avastin with Xeloda when I did it.

It's a dangerous drug as most are. It can lead to congestive heart failure and says so in the pamphlet. I had some heart problems after 11-months of it.

Radiation, while cruel, can be effective as well...if the location is in a bad spot, there may be no current way to address that except through chemo.

Folfox, (main drug is Oxaliplatin) is the first-line drug of choice by oncologists. I like the fact that he is already prescribing the magnesium to ease side effects. They gave me MAGNESIUM SULFATE - known affectionately as "The Mags."

If it works for you, it will ease the cold sensations in your throat and allow you to drink cold beverages right out of infusion...instead of the usual 7-day waiting period. This was the biggest benefit to me. It does help with the tingling in your fingers and feet as well....lessens but does not take away those sharp sensations.

I'm glad to see your onc thinking about you that way. And I think you've already answered the question on which onc you will be going with. Hate to say it, but your odds increase at a bigger facility, such as a teaching hospital or an NCI facility.

The equipment is newer and up to date and they study on the latest and greatest that is available.

Congrats on returning to work - speaking of which, I better get back to myself:)

I'm in! Good luck.

-Craig

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Craig, I'm sure I am speaking on behalf of many people on this support site when I say;

THANK YOU!

Your sharing is inspiring and informative and very helpful to us newcomers to this fight against cancer.

I truly appreciate your input.

Sincerely,

Philip

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Although I had Folfox + Avastin for my chemo 4 1/2 years ago, my surgeon at Memorial Sloan Kettering told me that for the same diagnosis (tumor type, type of spread) today, while my treatment overall would remain the same, my systemic chemo would not include the Avastin. The thoughts (and experience) on that have definitely changed.

I like that the U of M onc is thinking about addressing the side effects, which can be quite nasty.

swimmer22
Posts: 60
Joined: Oct 2011

Phil-

Our cases have something in common. I was diagnosed with rectal cancer December 2011. At that time, two small lung nodules were also noted. My option was to have them biopsied; however, I wanted them out. I went to an NCI Cancer center and they agreed to remove them via VATS surgery. The nodules were small so they had to mark them with titanium rods via a CAT scan immediately prior to surgery as they wouldn't have been able to see them as they were so small.

Lung surgery was successful, clear margins. I then did 6 Folflox/Avastin treatments. Next, I did 28 days of chemo/radiation prior to my resection surgery. I had a complete tumor response to the chemo/radiation and surgery entailed only removal of scar tissue where the tumor was located. No lymph nodes harvested were cancerous.

After surgery, I did 12 treatments of Folfiri. Since my resection, all scans have shown no evidence of disease. Like your oncologist, mine also Stage IV can be cured. I am praying that mine is.... although time will tell. Right now I am scanned every 3 months for one year-- then they move to every 4 months for the second year.

I would follow the post surgery treatment of Folfox (without avastin) as I believe that is the gold standard of care. I was told Avastin was best used when there was a known tumor--and not in the adjunctive state.

Phil64's picture
Phil64
Posts: 835
Joined: Apr 2012

Thank you all for your feedback. I'm starting my treatments at U of M on Thursday this week. One other question I have is regarding the port. I was prescribed some cream that I can rub on my port to numb this area prior to receiving treatment. I also had blood drawn out of it and the nurse told me that the cream was up to me as to whether I needed to use it or not. She lead me to beleive that the pain would be the same as when she drew blood and if that was tolerable I probably didn't need the numbing cream.

Did any of you use this numbing cream? I don't think the blood draw was that big a deal, so I guess I'm leaning towards not using the cream but I'd like to get your feedback on this...

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I found the cream to be extremely helpful for the first few accesses after having the port put in. Later I didn't really need to use it.

The calcium and magnesium can help with neuropathic side effects. In no way does it guarantee you won't get neuropathy or won't have cold sensitivity (the two are totally different issues). Some people get lucky and some don't, even with the calcium and magnesium - but it would probably be even worse without them. Another thing you can take to help for neuropathy is ALA (alpha lupoic acid). As with anything, clear it with your oncologist first. My oncology certified dietician recommended it for me - studies have shown that is is quite helpful for diabetics dealing with neuropathy. There have been some studies started to see if it also helps for chemo induced neuropathy, and so far they think it does. You'd have to ask for the correct dosing - if I remember, it is 6 times the normal daily dose. The good thing is there are no known side effects or issues taking these high dosages. Just remember to speak up and let them know how it is going per neuropathy. After stopping Oxaliplatin, it continues to worsen for a month or so. This means you do not want to wait until it is totally debilitating to stop it, if you have bad neuropathy.

I did take Avastin with my second-line chemo of FOLFIRI. All I can say is the combo of Irinotecan and Avastin worked well for me to keep me stable. 5-FU and Avastin alone didn't. Irinotecan and Avastin w/o 5-FU did. But maybe Irinotecan on its own would have been sufficient? I have very low blood pressure, so while it did rise on Avastin, it only rose to normal levels, and I did not have that problem to deal with as many do. I did get nosebleeds all the time. I did have trouble with healing - blisters on my toes took 2 months to heal. I went off Avastin before having dental work done.

Much of the time, the thought is that if you have solid tumors that can be seen, Avastin is good. If you don't have solid tumors, it may not serve a purpose. It helps cut off the blood supply to tumors - so if you don't have any, then why use it?

Good luck to you - I hope FOLFOX is kind to you.

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hi Phil,

I don't have anything to offer as far as the treatments go, other than to say it sounds like you've now got yourself a good, trustworthy oncologist who takes the time to go over things with you. That, to me, is half the battle! Since your oncologist is pretty much the head honcho of your medical team, you have to be able to feel totally comfortable with him, as well, that you know you can trust him. It's usually a gut feeling... something either clicks or it doesn't. It sounds like it didn't click with the first oncologist, not to say there was anything wrong with him, just that he wasn't the perfect fit for you. Hopefully you have found that perfect fit now :)

As for the numbing cream... I think your mileage will vary. I would hate to say "Naaaa, it's not worth it!" when, as soon as I'd say that you know someone would say that it works great for them and I'd end up with egg on my face . So, I'll just say, for ME, personally, it was really a waste of energy. For it to work, you should gob it on about 30 minutes prior to when you are going to be poked. That means trying to keep the gob of it there (don't rub it in) and not have it get all over your shirt/clothes. It's remembering to do it 30 minutes ahead of time that I had a problem with. The end result is... it's just a poke, no different than when you get blood drawn, which we seem to have to do every other week. For the most part, all the chemo techs/nurses are really good at their job of inserting the needles and I'd say most times you never feel them, or you have very very mild discomfort for half a second. Occasionally, one might be a little rougher than the others, but again, it's a poke you feel for half a second. I think you are going to find it was something you really didn't need to worry about... just go with the flow, take a breath in when they tell you and let it out when they tell you ... and most times you'll wonder how they got the needle in without you noticing :)

Cheryl... Creamless in Vancouver :)

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

There is a trick that works well. Put on the cream before leaving the house to go to the oncologist. Use Saran Wrap Press & Seal. Cut a square to put over the area after applying the cream, to protect your clothes - works great.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have no advice, I haven't had oxy...or avastin...I had Folfiri. I didn't use any cream, one nurse brought it up early on, I never got it, and didn't need it. Just don't look at the needle when they're prepping it, start talking about something and look around the room...I would feel the pressure but no pain per se. You may be different, who knows. Best of luck with which ever treatment you decide on.

danker's picture
danker
Posts: 1179
Joined: Apr 2012

I still have a full tube of lidocaIne cream. As they say the pokes through the port are no different than any other. I think of the navy medic who used to slap one cheek while sticking the other. LOL

omrhill
Posts: 125
Joined: May 2012

My oncologist's office uses a freezing spray. A couple of seconds of the spray and i can't feel a thing. It seems a lot easier than pre-meficating with messy cream. Ask if it's an option.

YoVita's picture
YoVita
Posts: 590
Joined: Mar 2010

I also used the spray. I found it helpful since my port was (unfortunately) deep.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

I don't take the numbing cream that pain is just momentary and the least of my worries..
However I wanted to weigh in on the Folfox and avastin..
FolFox neuropathy side effect totally sucks.. sorry to tell you but that is it.
My new doc said the mag only works while being infused and there is some concern that it may cut the effectiveness of the other drugs.. so it is a toss up..
Also Avastin make the folfox 10 % more effective, however it also can cause bowel perferations in 3% of patients.. those that have not had the primary tumor removed.. I would error on the 10% side personally. But my docs aren't huge pushers of this drug either at least not initially they have told me..
Good Luck Phil.
tough decisions to make,,

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Again at my little hospital in Santa Cruz, standard procedure is to ask you if you would like lidocaine, it's a nice SHOT with a skinny needle that doesn't hurt, numbs the area up quickly and no fuss no muss no pain, I can't imagine using just a cream or nothing at all, but then I am a BIG BABY when it comes to pain, I always say "yes please" bring on the lidocaine.
Winter Marie

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I liked my Avastin, I think it did a lot for keeping the tumors small and new ones away as the Oxi and Xeloda did it's thing. I was on Avastin BEFORE my tumor was cut out (9 months)and on it AFTER my tumor was cut out (15 months) I actually just got off of the Avastin about 3 months ago, it's been the only drug therapy I had been doing for the past year or so, every three weeks, I didn't have any side effects from it, I liked that it was biological warfare and not chemo warfare, but others have had other effects from it, so it's hard to tell you yea or nay, you might do as great as I did, or you might not, dang, that's the nasty thing about this disease, one just doesn't know until you do it what effect it will have.
Here in Santa Cruz, I think just about everybody gets mag and calcium with their oxi, seems to be standard protocol at this little hospital here, and my tumors sure shrunk from the combo of Oxi, Xeloda and Avastin.
One of the side effects of Avastin is high blood pressure, but since I had high blood pressure before Avastin, I can't tell you if it made a difference or not before I claim no side effects, let's just say, nothing new, and another is protein loss (they check for that). I am off of the Avastin due to having a heart stent put in, but that was due to Calcification and not the Avastin, and that is the reason I am off of Avastin now because of the blood thinners I'm on due to the heart stent otherwise I'd probably still be on Avastin, I felt better on it for some reason, then I do off physically (possibly psychological).
Winter Marie

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