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Treated like diabetes?

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

My CEA doubled to 30.6.  Doctor says we are limited in treatment because platelets are low and he does not see them coming back up.  Said he doesn't think we can get this into remission. He said that these days colorectal cancer can be treated like diabetes but that he cannot promise I will get that either.   What exactly does that mean?  Do people with diabetes live until they are old? 

PatchAdams
Posts: 272
Joined: Nov 2011

I've heard that too.  Not regarding me, but Colorectal cancer in general.  I've seen remarks that say with new advances that CRC can be a chronic disease, much like diabetes.  

 

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

Interesting comment to be  made by a doctor. I agree with Patch he probably meant like a chronic disease.. however I would ask the DR to explain what he meant to be for sure and put you at ease.

My Dr clearly told me when they found the mets in my lungs that we can control this but can't cure it or ever irradicate it totally from the body, since CRC growth microscopicly and since mine are so small in size but in volume evidence of mine to be slow growing. All this said means I will be being treating in some way forever and she also clearly stated to me that forever is a long time.. I know from time to time our forevers seem limited or at least varied but the best I can offer is value the forever.. don't take it for granted if possible.

Cea is not too bad .. sorry it is increasing.. I never heard of not being able to increase the platelet counts- is that because he wants you on chemo? Sometimes they infuse platelets? I really would ask for more details from him and what he has planned..

Hang in there...

Donna

PhillieG's picture
PhillieG
Posts: 4673
Joined: May 2005

I'm basically in the "Chronic Condition" stage. I will have been at this non-stop basically for 9 years come February. I just came back from chemo a little over an hour ago. I'd say 80% of the time I feel good to quite good. The chemo knocks me out for a bit but it's manageable. I'm in a position where I can usually just sleep. I've yet to be NED which is not the worst thing in the world. I'm not on the roller coaster of being NED then having a recurrence. What the chemo does for me is to keep a few small nodes growing slowly. It's certainly not the worst thing in the world Vicki

My mantra for a while as been that it could always be worse...

Undecided

 

 

Annabelle41415's picture
Annabelle41415
Posts: 4271
Joined: Feb 2009

Is this on your property.  It is beautiful.  You always take such lovely pictures.  Still loving that one of you kayaking on the lake with the mist.  Never could get that picture out of my mind.

 

PhillieG's picture
PhillieG
Posts: 4673
Joined: May 2005

I wish that was my place. It's a horse riding academy in NJ (yes! New Jersey) that I often pass. I recently got a "new" used Canon D20 digital SLR camera which is a nice one. It's from 2004 I think but it's a big upgrade from the $120 digital I've been using for years.

The kayaking in the mist is one of my favorites too. I'm glad you enjoyed it.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for sharing. Keep going another nine (x3) years!!! This is good to know.

PhillieG's picture
PhillieG
Posts: 4673
Joined: May 2005

I tend to post that info only when I think it's relevant. When someone is just starting out then don't want to think about 9 years in the trenches but when others have been in there a while and hear chemo for life or chronic disease I feel this offers some hope.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Absolutely. My oncologist walks in the room and I just start crying. I know he doesn't take it personally. Round two of chemo tomorrow. His attitude is that this is no longer an automatic death sentence. He sees it as chronic, like diabetes, depression, etc. It helps to read posts like yours, PhillieG.

wawaju04976's picture
wawaju04976
Posts: 316
Joined: Dec 2012

Thank you for sharing. Keep going another nine (x3) years!!! This is good to know.

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I'm happy to hear that you are doing good on the continued chemo.  My platelets have really screwed me of getting the chemo I need so as long as they stay where they are at then I will continue with the Avastin and Xeloda I am on now.  My petscan on the 7th will have a lot to do with the doctor's plan of action.  Thank you for the words of encouragement.

 

Vicki

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I'm happy to hear that you are doing good on the continued chemo.  My platelets have really screwed me of getting the chemo I need so as long as they stay where they are at then I will continue with the Avastin and Xeloda I am on now.  My petscan on the 7th will have a lot to do with the doctor's plan of action.  Thank you for the words of encouragement.

 

Vicki

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

the new off label use is for cancer, have a google, ic'll put on my blog my links. i was put on metformin over the break over xmas from germany clinics. just have a google yourself, i started these new regime xmas day, a good omen. 

maybe your doctor is discussing the sugar and insulin theories with regard to crc. i found a page about dca and metfomin that was interesting and as always i am happy to try.

sorry about your news, 

 

hugs,

pete

 

 

 

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

Pete, know that you mentioned this I do recall seeing that article. Will you be on a constant dose of metformin or will they increase the dose as you go along like they do for diabetics..  Prior to my gastric bypass I was prediabetic and had horrifying issues with metformin- I was in the bathroom more of the day than out. I could never imagine trying to manage that along with Chemo and Colostomy.. Please let your DR know how you feel and are doing on the metformin honestly. I also recall getting lightheaded from metformin and feeling like the ground was coming up to me my head when I walked and not knowing it as metformin side effects.

 

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

Pete, now that you mentioned this I do recall seeing that article. Will you be on a constant dose of metformin or will they increase the dose as you go along like they do for diabetics..  Prior to my gastric bypass I was prediabetic and had horrifying issues with metformin- I was in the bathroom more of the day than out. I could never imagine trying to manage that along with Chemo and Colostomy.. Please let your DR know how you feel and are doing on the metformin honestly. I also recall getting lightheaded from metformin and feeling like the ground was coming up to me my head when I walked and not knowing it as metformin side effects.

 

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

the catch is the doctors who advised it are german, i am in sydney. i am doing these therapies unsupported at the moment. i had an unusual amount of gas and bathroom visits ysterday. i will keep research****.

hugs,

pete

ron50's picture
ron50
Posts: 1290
Joined: Nov 2001

Heavy doses of prednisone wiped out my pancreas. I started on 500mg daily then went to 1000. I have been taken off a lot of meds because of diarreah. It now appears that the drugs merely aggravated an existing problem. For 90% of people who lose their gall bladder all problems go for the other ten percent symptoms remain and chronic diarreah becomes the norm. I'm in this group. I have started taking an old cholesterol drug called Questran lite. It comes in 4 gramm sachets and i mix it with orange juice with pulp. It does not dissolve but clings to the pulp. Its action is to bind the bile acids and stops the diarreah. I have gone from 6-10 bms a day to two. It is not an invasive drug and does not appear to have any side effects. I gradually built the dose to 4mg to avoid initial constipation. It works for chemo related diarreah as well. Ask your doc about it.Ron.

Annabelle41415's picture
Annabelle41415
Posts: 4271
Joined: Feb 2009

Look at Mary Tyler Moore she has had diabetes since a young age and she has managed quite well.  I'm sorry that your count is going up and hoping that they can control it to a manageable stage.

Kim

wolfen's picture
wolfen
Posts: 1194
Joined: Apr 2009

I would imagine the doctor was using diabetes as an example of a chronic disease which can be controlled, as cancer can. Where cancer can metastasize to other parts of the body, diabetes can affect various parts of the body. My husband is 65, and has had diabetes for about 25 years. So, I would say that you can grow old with it. It can be managed with medication and diet and requires learning "your" normal and accepting it, just as cancer does.

You can do this!

Luv,

Wolfen

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Thank you for the responses and Wolfen, I truly love the "you can do this" comment.  Wishing everyone the best in 2013.

 

Vicki

scared99
Posts: 73
Joined: Jun 2012

Vic,  When my mom was diagnosed in June  her oncologist said this to her.   He said with the proper response from treatment stage 4 can be controlled like a chronic condition.  He also told her the optimal scenario was treatment into remission and re treatment if a relapse would occur.   

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Thank you for your response.  Gives me hope. 

jen2012
Posts: 1208
Joined: Aug 2012

I don't really understand this. Why do drs give that 2 yr prognosis then and why do some not even make it 2 yrs? My son was diagnosed with type 1 diabetes last month and the doc said he could live a normal life with this...much different than what the onc said when she diagnosed my husband with stage 4 crc in August.

scared99
Posts: 73
Joined: Jun 2012

Jen, I do not understand this either.   My mom has dealt with two different oncologists.  One at a very large medical center and one at our home town hospital.   The one at the large medical center has always seemed more optimistic.   He said there would be no cure but they could treat it.    The doctor at the smaller hospital said that chemotherapy would not cure her cancer and offered her hospice.    She then went back to her original oncologist who told her hospice is out of the question unless she does not want to  try any more treatment.   He said he does not even consider hospice unless the patient wants no treatment.  He said he has seen people respond well to first line chemotherapy for years and then go onto the second line and so on... he cannot predict who willl respond to treatment and who will not... so thats why he said its possible to treat colon cancer as a chronic condition.

Chelsea71
Posts: 1170
Joined: Sep 2012

My husbands oncologist (the surgeon who did the HIPEC) told him (when he broke the news of a recurrence) that the goal is to treat his cancer like a chronic disease, such as diabetes. I think back to this comment and I find it comforting. I hope this will be possible with Steve and everyone here. Although, truth be told, I would gladly trade this in for Diabetes!!!!

Chelsea

PS - I just want to add that I think attitude plays a big role in people's success. I think if your cancer responds well to chemo and if mentally you are able to approach your cancer like a chronic/manageable disease etc......I think it's possible to keep going for many years.

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I think it was summed up by Scarred99.... IF you respond to treatment then it can be treated like a chronic illness meaning if the chemo keeps it in check then you can live like that a long time.  Its that word we all hate "if" that is key here. 

Cindyc123
Posts: 1
Joined: Jan 2011

Vicki,
I haven't posted before, but I just read a post on the colon club forum about someone's husband who was having the same issue you've had with low platelets. The doctor said he has had success with previous patients by removing the spleen. This is what he did for her husband. As a result his platelets increased and he was able to resume treatment, which was vital since his cancer had become active again with the break from chemo due to low platelets. Maybe this is something you could discuss with your doctor.

janie1
Posts: 753
Joined: Apr 2011

Vicki,

I am curious what IS the treatment plan by this doctor?

If you can't do chemo.....what is he talking about treating it like diabetes?  It seems like there must have been a conference that some doctors went to to learn to tell their patients that cancer can be managed like diabetes.  Those 2 diseases really shouldn't be compared.

Vicki, i firmly believe you can keep this under control......but what has this doctor done for you?  Is he consulting with specialists on the low platelet count?  Would a splenectomy be a wise move?  It may very well be.  Then, you could resume chemo.  Has he checked into this?

Believe me, I know what a pain it is to get other opinions, but I think that is what you should do.  I don't want to scare you, but being too complacent and thinking of treating this like a chronic condition such as diabetes, is, IMO wasting valuable time.  I don't mean you have to RUSH, but I'd get things, records and scans in order (or maybe ask your doctor), and get a team of doctors get a plan together.  Not just talk the talk.

I'm just being real honest, because I think you have options and a good chance.  I am not a rah-rah cheerleader, kick cancer's as*, while all the while nothing is being done. 

Yes, there are a "few" who for reasons we will never know have been surviving with active cancer.  And I mean "active", NOT NED.  I would never throw all my eggs in one basket and think that maybe, maybe, I will be one of those.

Even without chemo, there may be things you can take that have anti-tumor effects.  For example, my oncologist approves of taking Celebrex.  Also, what Pete was saying is becoming more widely accepted.....taking Metformin.....it is a diabetes drug, but many with cancer take it.  I know many, many people who take this.  One person said, that anyone, with any type of cancer should take it.  It has hardly any, or no side effects.  But obviously, it needs monitored.

Also, Ron50 made a very good point one time about perhaps why he never had a recurrance.  He was taking a number of other medications for other things, but lately these same drugs (not chemo) have been shown to have anti-tumor effects......i believe those were (and maybe he will correct me here)......metformin,.....and a statin drug,..... Nalproxen (sp?)....which is like celebrex.....and now I forget the last one.   ( I saved that thread, but now with the new and improved forum, it has been lost). 

I would check into TCM.  The good thing is, tumors in the lungs many times are slow-growing.....so TCM may be great in the arsenal.  John23 said, TCM takes a while to work.   (I don't use it, cause my tumors grow rapidly).

I hope this makes sense.  There are things you can do if you aren't doing chemo. Perhaps a splenectomy is what you need for starters.  (One doctor in the beginning told me about treating this as a chronic condition, and I ran out of that office.  I thought if that is the best you can do......no thanks!!!!!!  Hell, anyone can say that.  Gee, which doctor do I want to pay hundreds of thousands of dollars to????? )

To me, what it means to treat as a chronic condition is to say...... we can give you chemo until it stops working (and it usually does).  I never had the guts to ask "and how long can you treat this as a chronic condition -- REALISTICALLY" ???  Honestly, the answer is what the statistics show.  I don't like the statistics, and we don't have to settle for that.

Vicki, make some phone calls, or have some one help you.  It just doesn't sound iike your doc has any plan what so ever.

 

 

 

 

 

 

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

Hi, Janie... thank you for responding.  I was on Folfiri and Avastin.  Platelets kept making me skip treatments.  I am now reduced to Avastin and Xeloda because they can continue to give this to me as long as my platelets do not go below 50.  Unfortunately since being on this (3 chemo rounds), my CEA level has doubled each time.  He put on steriods now to see if I have some type of auto immune disorder that is effecting the platelets but he doesn't think that is the case.  He told me they could only remove the spleen if I have an autoimmune disorder. 

He did tell me I should get another opinion so I am going to get one after my Petscan on the 7th.  I agree with you, I would rather tackle this head on with what ever surgery they can do to the speen or spots removed with radiation if possible rather than just accepting this is it.

Most likely when I meet with him on the 14th he will have another chemo plan since the Avastin and Xeloda are not working to reduce the tumors as the CEA keeps going up.  He wants to wait to see if the Petscan is better, worse or the same as the one I did in July.

Thank you for kicking my butt back into fighting mode.  I needed it.

LivinginNH's picture
LivinginNH
Posts: 1307
Joined: Apr 2010

 

Hi Vicki,  Have you ever been put on Folfox?   I ask because Folfox was Rick's initital chemo, then Avastin, which didn't work.  As Janie said, what is the doctor's plan then??  And yes, please get another opinion, that should help with your decision making.

All my best,

Cynthia

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have a spot on my spleen  and I cannot understand why they didn't remove my spleen during the initial surgery.  I always forget to ask why....there must have been a good reason, maybe hysterectomy and colon resection was a lot of surgery already at that time.     I got two different opinions from doctors  about this,  my oncologist basically said my survival would be two years.....the gyno. surgeon said to treat it as a chronic illness long term, talked about a family member of his who is going on 10 years being treated for cancer and how they approach it as a chronic illness.   I suppose it all depends on how you respond to the chemo.,   like any other drug it all affects us individually.    My sister in law just  passed away,  she was put on a anti-depressant (one commonly advertised on t.v.),    she had that side affect of  "unusual bleeding".  She had only been started on the drug weeks earlier  and she fatally bled out from her intestines.    Other people can be on that drug for many many years  without issues.    

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Smokeyjoe,

I like your surgeons attitude much better than your onc's.

Sorry about your sister-in-law. Scary story. I guess one never knows when their time is up.

Chelsea

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