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Am I Doing Enough?

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

To all,

 

I am looking for advice.  I had my 1 yr colonoscopy in Jan that found a pre-c polyp that was removed.  Had a flex sigmoid in May that found some pre-c cells at that same area.  Doctors all say to continue to monitor.

I was Dx'ed 3b/signet cell 1/13/12,  had rt hemicol surgey 1/31/13 and 12 rounds of Oxi and 5fu.  All my CT scans have been clear and CEA taken every 3 months is very low and never risen.

 

Now my question, besides CT scans every 6 mon, CEA every 3 months, very controlled diet, exercise, much improved attitude,  colonoscoopy every 6 months or 1 year (not sure yet)..................... what else can I, should I do?

I am not a very good person to just wait........  Is this how it goes?  I know I am very blessed and extremely lucky, but is there more I can do?

I feel I should be doing something.  I am so confused!

Thanks for all your help and advise.  Everyone here has been a wealth of support and information.  Many a day I sat at my PC with tears running down my face, after signing onto the site and reading I always felt better.

Smile

Trubrit's picture
Trubrit
Posts: 1343
Joined: Jan 2013

It sounds like you are doing everything you can, especially with diet and exercise and a good positive attitude.

Do you keep a journal? I have kept a special journal just for this journey.  I take my vitals everyday, and write down everything I experience every day that I believe is connected with this Cancer. 

No stressing. I have found that soothing music is a great help when I feel the blues coming on. 

Good luck and keep us informed. 

thxmiker's picture
thxmiker
Posts: 1202
Joined: Oct 2010

It sounds like you are doing a good job for your health.  

 

As a fellow Signet Ring Cell survivor, I added Juicing for the miicro and macro nutrients.  Milk Thistle as recommended by Dr. Lenz at USC.  Mistle Toe Extract from Ash Trees. (It does taste bad but there are several good studies for it as a super food.) Vitmin D  Vitamin B12   Cinammon (another super food) 

 

Think about super foods:  Mushrooms once a day.  Tumeric to season foods. (We love Tumeric and eat it a few times a week.) Cruciferous vegetables. Blue Berries, black berries.

 

Since none of these can hurt me, I add as many as I can during the day. I do not necessarily get each one every day but many of them every day.   With my last round of Chemo I had 90% cell reduction!  Was it the Chemo, was it the super foods, was it the elephant hiding in my yard? I do not know.   I am hedging my bet on every little bit helps.

 

Best Always,  mike

PS  Keep up the good fight!  

Trubrit's picture
Trubrit
Posts: 1343
Joined: Jan 2013

Your posts area always the best Mike.

I'm trying to follow the Med foods and juicing, but my taste buds are shot and I can't taste anything (Thrush does not help) so I am eagerly waiting for that to get better so that I can follow a more healthy diet. 

Thanks Mike!

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

Research has shown better outcomes and lower rates of colorectal cancers in people with adequate Vitamin D levels. Get tested, or think about adding 1000-2000iu od D3 to your daily regimen.

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

My Onc does a cbc with the CEA where we check vit d levels.

 

I am not a patient person and waiting is a hard thing to do.

 

 

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

Thanks - I really needed this!

 

Forgot to add - I am on a mediter-based diet with cinnamon (keeps blood sugar levels low) and alot of cummin and tumeric.  I also eat only organic and eat a ton of blueberries.  Probably a pint in 2 days. 

If eating tree bark showed it lowered re-occurance risk I would be eating trees!

 

I see the Onc tomorrow - I will keep you all posted. 

 

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

Got word back on CEA, still very low no rise and all other panels are very good.

So as you guys said like my Onc,  I continue with what I am doing and will be watched very closely.

Thanks for the sanity check.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Mike  90% cell reduction?   Congratulations!!!!   I forget which chemo. you are on.....   was this by scan or your CEA marker???   Mistletoe extract, how do you get this, infusion or can you buy supplements??? 

thxmiker's picture
thxmiker
Posts: 1202
Joined: Oct 2010

I did Folfiri w/Avastin during my last round of Chemo.  It kicked my Hiney!  I also was taking 3k IU VIT D,  B12, Milk Thistle two tabs, 20 drops Mistle Toe from Ash tree every 12 hours.  Was it the chemo, was it the supplements, was it the elephant hiding in my garden? I do not know. I am bettting it was a little bit of everything. (God bless the elephant !) Nuvalife is where I found my supplements at the best price. (I also love Treader Joes, although they are not nation wide and do zero mail order. (I am cheap. lol))  https://www.nuvalife.com/store/message.aspx?message=It+seems+that+you+are+not+logged+in.  We also juice at least 2 x 8oz every day.  Mostly carrot and what ever seasonal greens we can find. My wife has a couple of chronic alilments and they have pretty much gone away! (endometriosis, allergies (Soy, and 59 other plants), scoliosis of the vertibrae.) Our food and life style was killing us. (Laurie was on 17 meds and now is down to 2! One for allergies and the thyroid med.)

 

I feel beating cancer is due to diligence, attitude, exercise, and mental health. (I am working on mental health. lol)  We have to beat a multi faced war. Diet, if we are eating fast food and processed food, we are killing ourselves. (Read the ingreidiendts. If you know what they are keep eating that product. If you do not know what the ingriendents are, then do eat that product. (It seems simple.) I exercise any tiem I m feling half way decent. I always feel better after I get out and walk, or run the dogs. Sometimes it is just for a couple of blocks, else it can be for miles. I have worked up to 8-10 miles at a time. Today we walked 8 miles. I have not felt that good in months!  Baby steps, and work your way up to what you feel comfortable with. (5 weeks after chemo for me.)   We eat a Med Diet. I have lost 50 lbs since having chemo. My wife lost 3 dress sizes and looks lke when we got married! We eat meat now 3 times a week versus every day. The Med Diet has not hurt anyone and we both feel better. My fte is just that, my fate. I looked and see zero experation tag or bar code on me. (My wife checked me over also. lol) We have to live our fate. We were litteraly told to get my affairs in order in November 2011. Luckily I have not listened to many through my life. We went and got the best medical oppinions and went with that.  (Dr. Lenz USC, Dr. Lowey at UCSD)

 

I followed their diet, exercise and Chemo regiment. I have surgery scheduled for the end of June. My fate is in my cotrol to some extent. I refuse to be a passenger in my life. If a pricedure makes sense, then I think one should go with it. If a prcedure is confusing, then question it!

 

Do what makes sense to you!

 

Best Always,  mike

 

PS. We are sending our thoughts and prayers for a speedy recovery!

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Are are you happy with your oncologist?  I was not happy with mine so I went to see a specialist In the signet ring/appendix cancers.  As you already know, my scans look ok and my CEA, while elevated a little, is still low.  But, I am still having that flank pain...been having it since February.  The new Dr is going to do a laparoscopic surgery to see if there is any evidence of peritoneal spread...and also to look at the ovaries.  He gave us the option...wait 6 months and scan again or go w/the laparoscopic.  I chose the laparoscopic because I am not comfortable just yet with a wait and see approach.  I still have the pain and I want to make sure that if this is progressing that we deal with it proactively.

alex

marbleotis's picture
marbleotis
Posts: 476
Joined: Mar 2012

I am happy with my Onc and my treatment falls within all regements for signet cell.  I have no pain, cea very low with no rise and CTs clear.  The pre-c polyp found/removed in Jan and the pre-c cells found in May are really it.  I am closely watched.  So there is really no indications of anything.

I also totally changed my diet and exercise alot more.  I lost 65 lbs with chemo and have kept off almost everything. 

This is what I have a hard time with.......being "patient".  After being on the go go go for so many months, now I feel I am waiting......  Sometime I hear a clock tick in my head.  I know perotenial issues are a concern for signet cell.  So that is why I feel "stuck".

When I had the initial surgery the surgeon said he really "looked around' in there so I am confortable with that.

I think if the cea ticked up I would look into laproscopic.  Not sure.  

I do have a collection of drs on a spreadsheet that I gathered from everyones recommendations, just in case.

It is such a weird position to be in. 

Please keep us posted.

marbleotis

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Will do.  We did not find out that it is signet cell until after I had already had my 1st chemo.  As far as I know, the surgeon did not do any real looking around for anything else ... He was going under the assumption that it was your average colon cancer diagnosis.  My CEA has ticked up a bit but still within normal...may just not be an indicator for me.  But, the higher CEA combined with the pain and ncase own physical cause that can be seen on a scan ... That got me the laparoscopic surgery...they just are not sure what is going on in there.

i agree...totally weird situation... I know other signet cells who have been treated w/CRS and HIPEC and others like you and me that have not.  I don't know what is the right thing to do.  Then there are the sad stories of still others who had too much disease that they couldn't do anything for and they are either having mets to other parts of the body (I know a couple who have bone mets) or even sadder, those that have lost this fight.

 

i guess just go with your gut instinct.  I just need to know what they see inside...aneh what is causing the pain.

alex

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Are are you happy with your oncologist?  I was not happy with mine so I went to see a specialist In the signet ring/appendix cancers.  As you already know, my scans look ok and my CEA, while elevated a little, is still low.  But, I am still having that flank pain...been having it since February.  The new Dr is going to do a laparoscopic surgery to see if there is any evidence of peritoneal spread...and also to look at the ovaries.  He gave us the option...wait 6 months and scan again or go w/the laparoscopic.  I chose the laparoscopic because I am not comfortable just yet with a wait and see approach.  I still have the pain and I want to make sure that if this is progressing that we deal with it proactively.

alex

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

well what you have done is what you have done is enough.

I dont think regrets achieve anything in this game of survival.

that said I would order an rgcc profile and as a minimum pickup some targetted supplements that your circulating stems and tumour cells may be susceptible to.

this test will show if you have a low, med or high risk of recurrence.

if you risk is high or medium you can take other steps at reducing it.

of course exercise, sulforaphane and the life extension recommendations are a good place to start.

focusing on a strong immune system, well thats also a good activity , but challenging to achieve.

hugs,

Pete

PS I always ask that question ? am i doing enough! my answer which is YES, gives me a degree of peace regardless how I end up with this disease. I my books doing more now, buys you are more peaceful passing if it comes to that, hopefully though all the effort buys you a long healthy life. see the post about asco and exercise.

 

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