Treated like diabetes?

PhillieG said:

Hi Vicki

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...

 

 

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

Chelsea71 said:

My husbands oncologist (the
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.

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. 

janie1 said:

Vicki,
I am curious what IS

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.

 

 

 

 

 

 

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.