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Reviewing my case for opinions from group

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

The more I read here, the more I wonder about the level of care I am getting.  Just to recap, I am stage 4 with mets to LNs, liver, lung and omentum/peritoneum.  I was diagnosed in June 2012, and had surgery on June 4th.  The initial plan was laproscopic resection and reconnection of the colon, but the surgeon was unable to remove my tumor (sigmoid location), so he did a loop trannverse colostomy (left side right before the colon desecnds) and sewed me back up.  I was told at that time that chemo was the only treatment option for me, as I had many small and diffuse tumors, including on my liver.  The surgeon did remove several of the tumors on the omentum.  I went to NW Memorial in Chicago for a second opinion on the chemo treatment, and I continiue to go there for my CT scans.  They agreed with the local oncologist that 5FU + oxaliplatin + Avastin was the correct chemo regimen (I have a RAS mutation, so no Erbitux for me).  I took 5 rounds of 5FU + oxy, and 3 rounds of Avastin, and then had my first post tx CT scans, which showed no growth, no new tumors, and shrinkage in some tumors of 40+%.  I continued on my chemo regimen for an additional 7 tx (completed yestertday) with CT scans scheduled for Monday, Jan. 7th.  Maybe there will be more discussion after the results are in, but here are a couple of concerns:

1.  I have never had a PET scan, which seems common for most on here.

2.  They do not monitor my CEA levels.  Granted, my level was low at diagnosis (I think around 6), but they have never measured since.

3.  I have taken 10 tx of Avastin, but they have never done a urinalysis to check for protein leakage from my kidneys, which seems common for people on Avastin.

4.  I read my CT scan reports, and there has never been any mention of small, diffuse tumors on my liver, which they said I had at diagnosis.  There is a one large tumor on my liver (approximately 4 x 3 cm), but that is the only one ever mentioned in the CT scans.  They also mention my primary colon tumor, and list the lung tumors (approximately 6 total in both lungs, all under 7mm in size), as well as any LNs that look abnormal.  The CT scans also mention any other abnormalities they see (i.e. a non-obstructing kidney stone, whether or not I have pelvic fluid, any and all spinal degeneration, which I have a little of apparently, etc...). 

For the record, I have never had any abnormal kidney function indications on my bloodwork, and I have been feeling very good throughout all my tx, I did have a complicating bile duct blockage which they fixed via a biliary drain and now a stent, so I seem to be doing well on the chemo they are doing.  However, I just wonder if I am getting the maximum level of treatment and diagnosis that is available (i.e. RFA, radiation, HIPEC, etc...)???  It appears that the plan after the CT scans will be to continue with 5FU + Avastin if I am not NED (but have continued stability/shrinkage) or if NED to go to Xeloda instead (not sure if with Avastin).  I get the feeling that my initial diagnosis was pretty grim, which may be why I have not been offered more options, but maybe I will surprise my docs and then will be a candidate for other options.  Thanks for any help or advice you can offer.  I just want to make sure I am not missing out on anything that may be important.

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I have a similar diseae state and i am trying experimental in germany, just google germany and pete.

I am having interesting therapies and combining my love of travel and now german food.

I have put in links and descriptions in all the therapies ie removab, dendritic cell vaccine and chemo embolisation.

goodluck with whatever you decide. this course of treatment is expensive. pm me if you want details.

of course exercise, diet and lifestyle are an essential component of rebuidling health and most standard chemo regimes not really that good for your

immune system. I will let my conventional friends comment on conventional suggestions. 

I think a pet every 6 months or so good. I also get an mri every month with the chemo embolisation so they know where to target.

lots of interestig tests to do from genostics, to thyroid, to stools, the list is endless. i think i have done them all, they need to be ordered by a competant alternative or wholistic doctor. Most oncologists are not interested in these tests. I personally find them interesting and my oncologists a bit boring when you start to discuss our amazinf biology. just my opinion. 

hugs,

Pete

Chelsea71
Posts: 1170
Joined: Sep 2012

I think you are right to be questioning the quality of treatment you are receiving.  It sounds like your onc isn't trying very hard.  I find it alarming that they aren't even doing a urinalysis.  Might be time to make some changes.

 

Chelsea

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I'm asking my oncologist at NW some of these questions via e-mail already, and plan to ask many more detailed questions when I meet with her on the 8th.  I've also asked them to have all of my CT scans available so we can review them.  Based on what others have posted about their treatments, it seems like I am just getting the most basic/standard options and care, and maybe not even some important stuff that I should be getting....  The meeting after my first CT scans was about 15 minutes or less, and basically all I got was "terrific response" and keep up what you are doing.  If I am respomding well to my chemo, I want to keep all other options on the table.  I have 6 young kids, so anything that will keep me around longer is something I am interested in.  Also, I feel very good now, so it sems like the best time to be aggressive with my treatments.

Tedd

geotina's picture
geotina
Posts: 2059
Joined: Oct 2009

I am going to try and address some of your questions.  As far as surgery(s) go, generally, when more than one organ metastasis is involved, this limits surgical options mainly due to the fact that you must be off of chemo, especially Avastin, for a period of time both before and after the surgery.  If chemo is working and say your lung mets are shrinking and you go off for liver surgery, this may compromisesthe success you have had with the lung mets.  Hope this makes sense. 

Once you finish Folfox, and things become stable, many people do go on a maintenance chemo such as a5FU and Avastin, hoping this will continue to keep things stable and many times it does for a good period of time.  My hubby was on this maintenance for over a year and it did keep things very stable.  When his numbers all changed, he had an immediate PET and CT scan and liver biopsy to see exactly what happened and then it was back to the hard stuff, the next line of therapy.  Now I will mention that George's prognosis at diagnosis was maybe 6 months, with chemo, (one of his liver mets was 12 cm, yep, you read that right) and he got 3 1/2 years, a pretty good run and his quality of life was pretty good, he continued to work, etc. 

If you are questioning the path your current oncologist is taking, seek a second opinion to see if someone else can offer you something more.  Again, with multiple metastasis many oncologists/surgeons are limited on what they can do but heck, you never know.  There have been people who were told no by one surgeon and yes by another. 

If you want to know your CEA number, ask them to run the test next time you have your monthly blood work but please, don't get too hung up on the numbers.   With multiple metastasis they do tend to go up and down a bit. 

As far as any alternative treatment, Peter and John23 are your best bets in that area.

Best wishes for continued success in your treatment.

Tina

 

annalexandria's picture
annalexandria
Posts: 2251
Joined: Oct 2011

When I was on Avastin, they checked my urine every time, prior to infusion.  Not exactly sure what they were looking for, but it was part of the protocol.

I always have PET/CT scans done, as the CT alone wasn't able to pick up my tumors until i was basically on my death bed, but the flip side of that is that the PET also shows a lot of things that look suspicious but turn out to be nothing, so it can add to the worry.  They're also expensive...I just coughed up $900 for my share of my last scan (and that's assuming your insurance co. will even cover it).

I've never had my CEA checked, due to the oddball nature of my tumor type, but I do know it doesn't work for many people.  Because yours was low when you had active cancer, they probably assume it's not a good marker for you in general.

I would ask my doc about these things, especially the issue of the liver tumors.  He/she should be able to clear up at least that question.  And congratulations on getting decent results on the chemo...sounds like it's having some effect, which is a good thing.  My hope for you would be that you can get enough reduction to be a candidate for surgery, which seems to offer us the best hope for a cure.  Hugs~Ann Alexandria

smokeyjoe
Posts: 1428
Joined: Feb 2011

My oncologist does the CEA check  but he never brings it up....I find out only if I ask for it.    I've never had a PET scan, it's not part of the scanning they do in Ontario.     I do have my urine checked for proteine though,   I find it unusual they are not doing this test with you getting Avastin.   

John23
Posts: 1832
Joined: Jan 2007

You can click on my name, read my "profile", and go to the
"blog" section of the profile page to see what I used...

Although most say that I've been just very, very lucky that
my cancer managed to "just disappear" on it's own, and nothing
I did made any difference...

You have "alternative" options that you can use along with "conventional
treatment", or by itself; you have choices that physicians can't tell
you about.

Don't allow yourself to be driven into any direction by the fear
of "not doing something right". When it comes to cancer, there
is no "right" or "wrong", there are only things that your own
inner self can direct you to in it's effort to survive.

"Trust thyself"

Be well,

John

atlanticcanada
Posts: 73
Joined: Sep 2012

John is right! you can use alternatives with your other treatment. Work on your immune system.A good naturopath doctor can work with you. You may be surprised!

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

To get more options, read, search, think, consult.

Although my wife's metastases do not correspond to yours, her para aortic lymph node cluster vs your liver mets, wound repair and bleeding are issues for surgery during chemo.  In the US, most surgeons will likely be allergic to this.  We have always used cimetidine and other biological modifiers heavily  instead of avastin/erbitux, oxi-, iri- with her 5FU derived chemo.    

She went through a second surgery with an oral 5FU derived treatment (UFT/LV), numerous wound repair nutrients, and high doses of cimetidine - not standard practices, although there are papers that support these individually.  Very successful, and little down time.   We closely track CEA, CBC and other blood parameters 1-2 times per month.  

Care different from or beyond the standard of care is often from ones' own pocket.  We pay the great majority of my wife's bills directly but shop internationally at lower cost with more options.  

 

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

I assume there may be varying opinions, however the meds and action your docs have selected is the normal initial standard of care offered patients presenting with colon cancer.. That being said the reason is if these drugs work YEA!!!! and you don't need the BIGGER GUNS... I feel that if you scans were showing progression of the disease they would alter the routine. Save the stronger stuff for when the disease stops responding to these meds you are currently taking.. is probably the logic they are following.

Xeloda instead of the 5FU infusion.. I don't know?... they are the same drug just diferent delivery system.

pet ct and ct are similar and both can measure what is occurring. It is your docs prefference.

IF you really are not comfortable with what the docs are doing for you .. always best to get another medical opinion....

Good luck!

 

LivinginNH's picture
LivinginNH
Posts: 1301
Joined: Apr 2010

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