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Update On Liver and Lung Mets

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

All test are back and here is the plan. Surgery to remove the liver spot where the ablation did not work in February. Still debate on if this is cancer but my CEA level is slightly elevated and this has always been a good indicator for me. Oncologist wants surgery done immediately. Liver surgeon will do it but wants to wait to see if more appear. Any thoughts on this?

As for the lung spot, catscan confirmed there is only one, non-calcified spot that is too small to detect for cancer so it will be a lets watch it to see what it does. It didn't light on the Petscan however I have read that if it is non-calcified then it most likely will turn into cancer especially with my history. Has anyone ever had this where it doesn't turn into cancer.

Doctors are planning on the surgeries - liver now and lung when bigger - to cut out the cancer for a cure. No chem is planned as the doctors want to see what this cancer has in mind and they do not want the chemo to supress it. Thoughts on this?

Trying to keep a positive outlook on anything. How I would love for the doctors to be right and that we cut all of this out and that the cancer never comes back again. Are there such cases out there where it finally never came back after spreading to two oragans?

abackhou
Posts: 77
Joined: Jan 2012

If you have surgery then you have to wait at least 30 days after chemo and then another 30 days before commencing chemo treatment.
I have stage 4 CRC with secondary mets to liver & lungs which are still growing. Had Colon surgery in May 09, no more surgery for this fella......no point wasting good time for a very poor future....the cards have been dealt!!!!!

Given 20 months but still here after 37 months...what a bonus...

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

Sorry to hear this. I am not on chemo and there is no plan on the chemo as they said surgery is the only way to cure this for me. Why have you chosen to not do surgeries?

abackhou
Posts: 77
Joined: Jan 2012

Hi Vicki,

I chose to have 2 years of chemo treatment (since May 09) after colon surgery in an attempt to "cure" me but this did not work. I knew that a cure was very near impossible from the onset.. but the chemo treatment (Oxy/Zeloda/Avastin/Erbitux etc..) helped in keeping the cancer under control, and it did up until a month ago. The Oncologist has advised me that any further surgery is out of the question with Stage 4ers. I could have surgery on the liver and lungs but really tumours could re-appear elsewhere. I have 8 tumours in both lungs, numerous lymph tumors once again and a large one in the liver. My Oncologist is now worried about the one in the liver. My CEA is steadily increasing, now around 30. I DO want to have it all cut out but they refuse to do any further surgery on me because they say it would be futile for this disease. The only remaining treatment for me now is "palliative " and symptom management. I do not understand how some oncologists can say go with surgery and others say NO to further surgery!!!!!! I have sought a second opinion and they all agree surgery for MY Stage 4 is not an option. I wish you all the very best and I hope it all works out well for you and others on this forum. Anyway, under the very trying circumstances, I am happy with my life....

Andrew (Aged 57)

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

I am frustrated for you. Everyone's cancer is different and I am far, far, far from being an expert. I do know that if my scan had shown more spots on my lung then they wouldn't do the liver surgery and I would have gone straight to chemo. I don't know what the connection is with the lung and why it determines if you can have surgery or not. The lung situation is very new for me. My doctors did tell me that if it ever got to a point where there was nothing more they could do to "cure" me, that they would tell me and that the next step would be the chemo for life. She did say there comes a point where you just cannot cut anymore which is why I am trying to get the liver done as quickly as possible before some other bloody spot appears on the lung. Andrew, I am really very sorry. I know that there are many people that have been on chemo for life as they say and are leading normal lives - sort of like having diabetes. I am sending you a big hug.

gophergenius
Posts: 33
Joined: Apr 2012

I am glad I have read your post...someone understands what I think as well. Not only is the outcome usually poor, but surgeries/chemo/radiation and so forth changes the quality life in many ways...emotionally, physically and financially. I'd rather have less time with good quality of life, than longer with misery. But I do understand those that fight on, it is what they choose...especially young people that have not lived long, people with children...be supportive of choice.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

.

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

There are such successful case histories with two affected organs.

We use supplements similar to the LEF protocols, and beyond, with the primary aim to stop the spread.

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

Hi, you lost me with the LEF protocols. What supplements?

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

Very little ones < 5 mm PET can didn't pop up , after more than two years of multiple CT and PET, they remain the same size ( even one year with no chemo) and not lighting on PET so doctors think is nothing cancer related but something to do with smoking scares or an old infection .
So of not growing or lighting how can they know is cancer , not possible a biopsy ?Well you see don't miss hope! .
Good luck Vickilg.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

im glad you have a plan.sorry i cant be of anymore help.my cancer is fast spreading so i have to be on chemo.sounds like your is slow growing just take a breath and pm me sometime if you need to....Godbless...johnnybegood

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

Always a lot of tough decisions to make, Vicki. I can see how with the one spot, the onc would vote to have it removed...now, while the liver surgeon would prefer to wait? As you said, he's probably seeing if there will be more - and where they would be.

This is a tough one - you could always play for this one - and if more turn up, then you try and address those with whatever action your medical team recommended. If you were to wait and more grew, they just might nix the surgery and tell you that you are no longer a candidate.

I had 2 lung spots that I had operated on that were benign...the next two in the subsequent surgery that followed in short order, were malignant.

If the surgery yields clear margins, this opens up two choices for you. First, you could elect no chemo and just watch and wait...recovery is better, no harsh chemicals to wade through and cancer might or might not return.

Second, you get clear margins and elect to do the chemo. This is a tough route as you know and the cancer might or might not return.

Alot of folks think this gives one the best chance. And I think when you're early on in the fight, this might me a good approach...fire every bullet early and often.

Should the fight continue on over time, my onc's opinion is to save the chemo for another time when cancer is evident. Over time chemo and desensitize our cells and the treatment can become less effective. So, if we use the chemo and we were to recur at a later date, we may have used up that particuar chemo's effectiveness.

It's really tough to know which way to go - and what is the right thing to do.

Cure is such a moving target and therefore very elusive to ascertain - he lives on a slippery slope. This is just one of the most difficult crossroads any of us find in the battles - when or when not to pull the trigger.

As always, we lean towards what our medical team(s)plan for us and use our best guestimates in hopes for the outcome that we all hope for.

Best of luck as you move forward.

I'm looking at maybe my 4th recurrence, with new spots in the good lung and back in the liver...I had no clear margin in the lung last time and thus necessitated a full program of chemo along with 30x of rads, which followed the major lung surgery.

Had there been clear margin, I probably would have elected to not do chemo...if I recur this time (having done chemo), then I would have ended up in roughly the same spot either way I would have chosen. But, because we did not get clear margins - and there was cancer visibly present in my chest cavity, that pretty much made the decision for me.

The real issue is when you do get clear margins - then do you - or don't you?

And I wish I had the answer....if I looked at this question a thousand times, I only come to this same crossroad each and every time.

Best of luck with your decision.

-Craig

janie1
Posts: 753
Joined: Apr 2011

This stuff keeps us guessing.
I'm always for surgery. Recently, someone said their liver surgeon did 7 resection on someone.....still better than chemo, IMO.
It would ne nice if your surgeon would really want to do the surgery now, since they are the one doing it. But I do see their pointy. But if
You just have one spot, they'll have plenty of opportunity to take out a big slice. No sense in cutting corners and having unclear margins.
Go for a big one.
The lungs you have time to see if it really is anything.....so wouldn't dwell too much on that.
Good luck. You still have a lot of good going on here.
I hate to hear the ablation didn't work in Feb.
I'm having (trying it) 3 ablations next week (saving the surgery). I do hope the HAI pump I went through the trouble having put in can be a little extra insurance after the ablations. Fingers crossed.

janie1
Posts: 753
Joined: Apr 2011

Speaking of HAI pump......
Since your surgeon wants to see if anything else pops up....
If you do have the surgery, this is usually the time to put in the pump. It has kept many from having another recurrence in the liver.
But, currently, I only know of it being done at MSK. I've always been baffeled at why more of the big centers didn't use this.
Just curious what your oncologist/surgeons think.
And does no one in your state use it? You've got excellent places in your state, especially where you go (which we talked about in PM.)
Anyway....just wondering. But either way.....you are staying on top of this, and that's what we need to do. :)

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

Hi there... thank you for responding. I will ask about he HAI pump and let you know what they say. I am meeting with the surgeon on Thursday. As for the ablation, that is what they wanted to do again, ablate the same area however it is my oncologist that is fighting them on this. He wants it cut out and that's that. Men and their pissing contest, lol. Just kidding. They are just working on figuring out what the best shot at a cure for me will be but the oncologist doesn't want to take a wait and see approach on the liver. He knows I don't handle chemo well and his words were that he is holding a chemo cocktail in his back pocket if the surgeries do not take care of everything. I agree with you. I am goign to ask the liver doctor to cut out as much as he possibly can. I will let you know on Friday what he says about the pummp. Do not worry about the ablation. It does work. My spot was right next to a vein which sucks up the heat. It took them a bit longer than normal and it is probably because of the vein sucking up the heat that it didn't fully take. I was on a 3 hour road trip the next day with a small bandage. Good luck, Janie!

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

Life Extension Foundation has several articles and protocols, (a), (b),
(c), concerning cancer and specifically colorectal cancers that give specific supplements and off label drug use. My wife has used a modified version (see MK4, Hoffer, Block and Ohwada modified for stage IV) to stop or slow the process of new metastases so effectively, that she was able to get a second surgery when she should have already metastasized greatly. Our biggest problem had been the pessimism and disbelief of the surgeons, and the oncologists were worse about the pessimism and disbelief with their own agendas (heavy chemo, radiation without surgery).

The surgeons were a problem because she badly needed surgery and they weren't going to. The oncologists didn't matter if she had a successful surgery, because she already had a working protocol between Japanese research based immunochemotherapy and alternative adjuncts like LEF plus others. My wife had light chemotherapy much closer to the operation than is normal based on heavy chemo, with only 2 days off, and most of her supplements and cimetidine through surgery.

Although we had already decided to use cimetidine in the first and second surgeries, CSLEX and CA19-9 biomarker stained tissues from the second surgery show that cimetidine is a long term necessity for her survival to prevent metastases, as is probably the case for about 3/4 of stage IV patients.

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

Very interesting. I am going to do some research on all of this. Thank you very much for sharing the information. How is your wife now? I hope she is doing wonderful!

tanstaafl's picture
tanstaafl
Posts: 1299
Joined: Oct 2010

She is always doing fine. None of the dramatis of ordinary chemo, and she bounces up and out of the hospital after surgery due to the wound healing aspects of supernutrition. The doctors themselves can't tell when she's on chemo (all the time).

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

Very interesting. I am going to do some research on all of this. Thank you very much for sharing the information. How is your wife now? I hope she is doing wonderful!

smokeyjoe
Posts: 1428
Joined: Feb 2011

Tough decision Vicki...me I'd go for the surgery, but that's just me. I'm curious though about what you said of the calcification...I have a spot on my spleen that is now noted as calcified...and I don't quite know the relevance of that, other than onc. said it was "less worriesome" or something to that effect. Just curious as to what your doc.s have said about calcifications??

Tans, have you seen anything about Niclosamide, or Sulindac

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

Hi, Smokey...

Yeap, calcified is much better. Less likely to be or turn in to cancer. Mine is non-calcified so even though its too small to confirm it is most likely cancer. I got all happy when I heard non- thinking it was better. Just another smack in the forehead when I was told it was not better. Good luck, Smokey!

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

All I can say is WOW..,.
I have lung mets, spleen and tonsil as per a recent pet ct, and lung biopsy confirns it is colon primary.. my bones are clear(YEA) but my oncologist started me on Xeloda, she kept talking about preserving the quality of my life,, this concerned me... I am 48 and the lung spots are supposedly small but there are several. so I am going for 2nd opinion next week to see if there is more I should be doing,, We did speak about surgery but I am not so keen on that idea.. on my lungs.,. omg,. I told dr I don't want to be walking around with an oxygen tank.. I walked around with the chemo pump and that was nough for me.

Please keep posting on this subject.. I really want to know what peple do about this.. I am so confused

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

I've had 2 major surgeries on the lungs...I know a couple of folks here who have had 3...we're all as okay as we can be given the cirumstances

I had radiation to the lung following the surgery as well....I'm not on oxygen, I almost left the hospital with it, but stubbornly held out and build my SPO2 level back up in the mid 90's after I returned home and resumed walking on the treadmill.

It's scary, but I went around twice and the 2nd time around I was okay with it - even when the surgeon changed plans seconds before the surgery and said he was doing a "full-open" thoracotomy.

Respiratory exercises and treatments re-expand the lung and exercise helps to keep it expanded...once the wound heals, they pull the chest tube, which is a relief. The key issue with any lung surgery is SPO2 levels...ideally you want to be in the mid to high 90's....they will ususally hold you in the hospital if you are under 90...unless it is borderline and then you have an option to be on supplememental oxygen for a short time.

Morphine will make you feel like a superwoman and you'll be running laps around the corridors...get one last shot before you leave...once you get home and the morphine wears off, it gets a little tougher...but it's just time and patience at that point.

We can walk you through all of that.

-Craig

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