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WoW that's all I can say

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Well today Jorge had a appt at the onc. And our youngest had a appt. So I had to go with Natalia and I felt so bad that I couldn't go with Jorge but when he came home he was so happy his Cea was at 1.8 before the liver surgery and that was 2 weeks ago . Today the doctor told him no more chemo un less something starts to grow back . Man this is not good .

baldwin
Posts: 25
Joined: Dec 2008

I don't understand, I may be missing something. A CEA of 1.8 is excellent. Why do you say this is not good?

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Before surgery we were told he would do 5months of chemo

Lovekitties's picture
Lovekitties
Posts: 3322
Joined: Jan 2010

From what you have shared this sounds like fantastic news! Saving chemo should anything come back is a good thing. It will give Jorge a chance to recover his health and spirits.

Hoping that there will be no reason to ever have to do chemo again.

Hugs,

Marie who loves kitties

Annabelle41415's picture
Annabelle41415
Posts: 6147
Joined: Feb 2009

I'm thinking this is good news, no chemo. You aren't being very specific and it doesn't make sense. Why is this not good news?

Kim

Brenda Bricco
Posts: 579
Joined: Aug 2011

Tina, I am so glad you are where you are and things seem to be under control :) Are you thinking that you would rather him have the chemo to make sure it's gone? That's the way I tend to think, tell us what you are thinking.
Brenda

tko683
Posts: 265
Joined: Aug 2011

I am confused. It sounds like good news to me if the doctor's are saying he doesn't need chemo right now. My husband is scheduled for liver resection in 9 days and we are being told that depending on the surgery he will either need more chemo or radiation....depends on the pathology of the tumor also....so I am curious about your comment...I am also amazed that he was able to drive so soon after surgery...it seems like he must be doing really well....hope so...Hugs, Teri

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I understand this makes you nervous, because you fear future growths, but try to see the good side of it. As long as careful watch is being done, the chemo break is good. It will give his body time to get stronger, and then if he has to face chemo again, that will be a good thing.

Praying you find peace with this.

*hugs*
Gail

jasminsaba
Posts: 157
Joined: Jul 2011

This sounds like that ideal situation everyone seeks to reach ... I do, however, get how you're feeling right now. I was literally trying to force surgeons and interventional radiologists to perform procedures on my mom prophylactically - sounds crazy to want to put your loved one through more hard treatments, but I totally get it. You need that safety net.

This is what all the docs told me, collectively ... your loved one is being carefully and frequently monitored - if there ever is a sign of anything (hoping there never will be), they can be proactive and address it then. For now, we just have to accept the good news and SAY THANKS for the blessings.

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

Tina

Shoveling chemo to Jorge with no evidence of a tumor is not a guarantee that a recurrence will not happen at some point.

Continuous doses of chemo also allows the cancer cells to be able to metabolize and become resistant over time the more it is used.

Doctors usually don't treat if they don't see something to treat. More chemo will just weaken Jorge needlessly and hinder his progress, if the doctors don't feel that the benefits warrant its use.

I know you are equating CHEMO = Jorge lives. But chemo is a treatment option - not a lifestyle. You will have the chemo available should it be necessary for the future, which I hope that Jorge does not have to do it.

They will be scanning every 2-3 months for the next year and if something comes up, the plan will resume. It sounds like your doctor is doing the right thing.

Look at me...I've done chemo 51x and had 3 recurrences. Just knocked it back down this year as you remember - I'm not on ANY kind of chemo or medication of any kind. Should it return again, I will be in position to address it.

Time for Jorge to catch his breath - cancer is a marathon and not a sprint - and sometimes, the body and the mind need to rest.

It's good news and not bad news.

-Craig

laurettas
Posts: 372
Joined: May 2011

I have a question for you. You have stated that you have knocked back your cancer several times. What exactly does that mean? Do you get to the point where no cancer can be discerned in your body or do PET scans just show no activity or does the cancer just stop growing and become stable?

Right now my husband has only one node with a slight uptake showing on the PET scan but there are still visible nodes on CT scans. They are just not active right now. Is that what you are talking about with knocking it back or is your cancer not even discernible on the scans? Just curious.

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

Hi there.

What I mean is that the cancer has gone under the radar and cannot be detected by any current means that medicine has to measure it by.

We just no longer see it in the scans and I go back to a period of watching and waiting.

I use the phrase "knock it back down", because I have not beaten cancer. I've only gotten "1/2 step ahead" of him during those times.

But recurrence always find me - sooner than later.

And I like 'watching and waiting', because remission or the term NED do not apply to me, because one has to go 5-years with no recurrences in order for the medical community to proclaim you 'cured.'

That's never happened to me - and most likely never will.

Still, having had cancer 3x now and physically not seeing evidence during those times, is about as good as it can get - for me. I still feel like I have won some major battles and still around at the 7.5 year mark - and have been stage IV for nearly 4 years of that.

-Craig

here4lfe
Posts: 306
Joined: Jan 2010

CEA 1.8 is a good starting point for monitoring any future activity. Enjoy the break.

Best

laurettas
Posts: 372
Joined: May 2011

I think I understand what you are saying. My husband and I discussed the options if his cancer happens to stay quiet for a few scans. One option is to stop chemo for awhile but that is a scary idea in a way. You come to trust the chemo to keep the cancer subdued and the idea of taking away that restraint is scary. Still don't know what our choice will be if we ever have the option!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Tina,

I'm thinking that you're thinking "man, this isn't good" because you're worried about Jorge not getting the follow-up chemo, is that right?
My thinking used to be that everyone should do follow up chemo after surgery. I did not have chemo following my liver resection and later wished I had, BUT... my thinking has changed since then- I could have had a recurrence with or without having taken the chemo (but don't just go by me cause I think I've been a more extreme case- there are a lot of people on this board who didn't have any follow up chemo after surgery and they stayed free and clear of any cancer anyhow!). I don't know that putting more poisonous chemo in Jorge's body "just in case" is going to be beneficial to him or not & the doctor apparently doesn't think it's needed. Just make sure the CEA is tested again within the month- it should be monitored & maybe chemo would be warranted if the CEA starts to rise again (but I'm praying that it will stay down!)

Here's my opinion of what Jorge should do... now that he had the surgery & his CEA is so low(!), he should help his body naturally so the cancer doesn't rise up again. I know you're skeptical of the natural stuff, but I've heard of so many people who have had success this way- stay away from sugar (or at least greatly reduce it), give up red meat (or at least eat it just on occasion), add more vegetables into his diet (raw or lightly steamed- not boiled or microwaved), take vitamin D-3, B-12, turmeric, garlic, vitamin C, cimetidine (Tagamet- 800 mg/day is what the study said to take), etc- any other antioxidants and cell boosters- chlorella's a good one too & I hear many oncologists are now supporting taking it.

When I had my recurrence, I had not changed my diet in any way at all. I was a major sugar addict & I had meat (lots of burgers and fast food) one or two times a day. I have no way of knowing if that would have made a difference for me or not, but I know that having healthier habits can never hurt a body- only help it, at least in some way, shape, or form. I could kick myself for not taking my nutritional health more seriously sooner, but what's done is done- I can only control the here and now!

Try not to worry and just be glad for Jorge to have the chemo break- hopefully he will start feeling really good and energetic soon. But do encourage him to be proactive in doing something good for his body to prevent it from growing back!

Hugs to you,
Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

chemo as there was no evidence of disease , so it's very common , so enjoy it .Jorge has won the war for the moment!.
these are awesome news!

tina dasilva's picture
tina dasilva
Posts: 644
Joined: Sep 2010

Hey guys thank you so much I know its good news but also scary news I just pray that the doctors keep a close eye on him . Hugs to all

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