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For those with Lymph nodes affected , I need your coments!

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

of you who have or had Mets on Lymph nodes I would like your doctor expects, does he esxpect for a cure?, does he expect to keep you stable? , are they concerned because linph nodes can spread C everywhere?.
I just have a conversation with my onc. and said since y got the cancer in a lymph node further surgeries in case I would need it would not be suggestible as normally cancer cells once one node is affected it means you already got cells in all your lymphatic system,so before tying any surgery you must be very sire the wold system is clean, asked him if possible said yes but his face didn't convinced to me!.it does not mind that his goal is not to cure it definitively since of course they got quite a few successful cases! .
I would like to know your coments and opinions and the goal your docs. pretend to achieve!.
Thank you in advance!.
PS.actually we are doing very well, but thinking in the future!

daBeachBum's picture
daBeachBum
Posts: 164
Joined: Apr 2011

From my conversations with my onc and what I have read, once cancer has hit more than a very few lymph nodes that surgery is usually not worth the risks, but that can change if a patient is closing in on remission. My doctor's primamry focus has been on the large tumor next to my colon and she is not nearly as worried about the "Caking" of my peritoneum or the lymph nodes affected.

Since my first CT scan showed great improvement to all three areas, its likely they are colon cancer cells that migrated. I'm hoping for more good news in my second scan coming up soon.

I send good thoughts your way and wish you all the best!

On another note, I want to thank you for your upbeat posts and sunny attitude. I always look forward to reading your threads. I know that there must have been times when you were feeling poorly and still posted with encouraging and fun content.

Take care!

Ray

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

I like yours as well, most of your post are really funny and positives!.
Well just have one linph affected in my collarbone ,and I think most of it has deasapeared since can't touch it any more!.The problem is ,and in my opinion has some sense, that once you got a distant node affected, not the local ones, it means cancer can be in the whole lymph system which means it can spread it to any organ any time, so it's theory is that before to operate anything we better are sure lynph system is under control!.
well hugs my friend! any interesting party or so? hahahaha! Get fun!

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Hi Pepe,

Dick has cancer in lymph nodes. In May 2010 he had surgery on some since that is the only place the cancer was showing. He did more Folfori after surgery, 8 rounds, and had no cancer showing from June 2010 till it showed up again in January 2011 in lymph nodes and lungs. His oncologists say it must be attacked by chemo since it is in the nodes. Right now they are saying chemo for life but who knows? Maybe Dick can have some big breaks in there.

Best to you.

Aloha
Kathleen

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I keep getting the same answer - chemo, chemo, chemo. I have only distant lymph node involvement - no organ involvement. (For those of you "new" to the cancer journey, we are not talking about nodes near the original tumor site.) The opinion of my oncologist, and a second opinion from the Duke Tumor Board, is to treat with chemo only.

I had progression to multiple distant nodes and FOLFIRI with Avastin seemed to have them under control. So we backed off to 5-FU and Avastin. I progressed again very quickly, with new nodes involved (some of the olds ones gone, one not, plus new ones). So I went back on FOLFIRI and Avastin. I am now on only Irinotecan and Avastin. My theory was that if I progressed on 5-FU, then why continue it? Definitely Irinotecan was making the difference for me, because just like the first time on it, my CEA started dropping immediately. 5-FU is supposed to be easier to tolerate than Irinotecan, but for me it is not. It is a very hard drug for me - I just don't do well on it. Irinotecan is no picnic, but I am doing better w/o the 5-FU, and we are keeping my cancer under control. My CEA is down to 3.2 now. If I can get back under 3 again, and have a clear scan, we will back off to tx every 3 weeks instead of every 2. But at least for a while, I won't dare to go off chemo. We are pushing to find the lowest toxicity that keeps the cancer under control.

Once multiple distant nodes are involved, it is very hard to get any surgical cure. I know of one patient (we have the same onc) who had a recurrance with just one distant node involved. He did have it resected and did more chemo, and has remained cancer free for 2 years now. I know of two others with multiple node recurrance involvement that had one or more nodes removed that were not successful - within less than a year, they had node progression again. Part of the issue is that while we go off chemo for surgery, there is a high risk of progression. Those little cells are good at hiding and then taking advantage if we stop the chemo war on them...

I don't like the idea of chemo for life. And at some point I will have to stop - it is a quality of life issue. But for now, we keep pushing for the least toxicity so I can tolerate it as long as possible.

sasjourney
Posts: 395
Joined: Jul 2010

Pepe,

One of my oncologists is trying for a cure and the other is just treating the disease. Needless to say, I am following the direction of the first onc. Does all cancer travel through the lymph system? How does it get to remote locations? I know stage 3 people with lymph node involvement are cured so I guess I don't understand why we couldn't be if the chemo does its job.

Hugs,
Sara

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I really don't mean to be negative, but there is a big difference in involvement in distant nodes and the nodes next to the original tumor site. Just like there is a big difference in everything being contained within the original tumor area, or spreading to distant organs.

Stage III is very different than Stage IV, and the chances for cure show that as well. Even a IIIc with multiple nodes involved is still "contained" in the original area. It has not spread throughout the body as when there are multiple distant nodes involved.

It is not impossible for a cure when distant nodes are involved, but the truth is the chances are less than for those with resectable progression (liver or lung mets). For those with multiple distant nodes or brain mets, the chance of cure is very low. That is just the way it is. This doesn't mean any of us should give up. But you also need to understand "chemo doing its job" doesn't make sense here - chemo is NOT a cure for cancer. Many people seem to be confused by that - they think chemo is a cure, but it is actually not. Yes, it can kill off a few small stray cells to keep them from turning into a bigger problem, but chemo alone is not a cure.

mom_2_3
Posts: 964
Joined: Nov 2008

Pepe,

I figured I would post this again for you and Sara as well as for any others interested in this thread.

As you know, the father of one of our best friend's was diagnosed with Stage IV colon cancer about 8 years ago. I remember it clearly as we were at this friend's wedding at the time of his father's diagnosis and it weighed heavily on the event.

When this man (Tom) started feeling ill he had 2 colonscopies, both of which failed to find anything in his colon. A scan revealed that he had lymph node mets up and down his chest and around his neck. Doctors were perplexed and did a biopsy of one of the mets in his neck and determined that they were adenocarcinoma which made no sense given the two clean colonscopies. They did a third scope and this doctor actually went to the cecum (which the two previous doctors had not) and discovered the tumor.

The doctors told Tom not to worry about the colon tumor as it was non-obstructing and to start chemo right away. Tom went on FOLFOX and Avastin (which I believe was just coming out as a treatment for colon cancer). After 6 months of this chemo regimen his lymph mets completely resolved and the doctors went in and did the colon surgery. No remote lymph nodes were removed. I am not sure whether he did mop up chemo but I think he may have done 3 more months of it.

This past May at our friend's twin's birthday party, we saw Tom. He looked great and healthy and had just gotten results from his last scan, 7 years NED.

Did the doctors think they could cure him? I don't know but I guess in 3 more years he will be considered cured, at least by MSK standards which are 10 years NED. Tom is a patient at MSK and is on a yearly scan cycle.

I know you know most of this story but I thought some newbies may find it encouraging.

Hugs to you!
Amy

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

Hugs!

sasjourney
Posts: 395
Joined: Jul 2010

Amy,

Thanks for posting about your friend, Tom. It is great to hear about people that have beaten this thing and not just assuming that everyone will be in the same predicament. We are all so different in our reactions to medications, complications, and disease progression. There is hope...

Hugs,
Sara

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

Most of the doctors, surgeons and oncologists, seem to expect the worst for my wife, expecting both peritoneal invasion and general metastasis based on the original mesenteric invasion and conglomerated para-aortic lymph nodes (ca 14). Her originally pronounced "average probable expiration date", pronounced last year, is two months from now.

While we've endured errors, omissions, and uncooperative monolithic mentalities, she has prospered, shopping and traveling as she pleases, newly fit and healthy looking to the amazed envy of friends and family. So far, with no chemo sick days either. We get 2nd, 3rd, 4th, etc opinions, we do our own homework which yields us different answers than usual, and we make the final decisions.

Although her p-nodes were resistant to 5FU, -IRI, -OXI, GEM even in pairs, our plan is to (try to continue to) stop new metastasis with a highly extended, continuous immunochemotherapy with therapeutic nutrition and off label treatments, and then cut or fry any old (micro)metastases that become resistant, when they grow visible. The idea is that if we can exhaust a finite number of old micrometastases emerging, and stop new metastases, that would be a potential cure. There are also non traditional chemo combinations that tested well against her nodes' tumor cells.

We encountered resistance to a second surgery to retrieve the previously missed para-aortic lymph nodes, but two sets of top surgeons (literally "head of..." and "pioneer") were impressed enough by her biomarkers, scans and bloodwork, to say that the expected metastasis had clearly not occurred, and agreed to a second surgery to remove the enlarged para-aortic conglomerate. The surgeons of the second surgery also allowed her to follow foreign protocols with cimetidine through surgery, and perioperative chemotherapy.

The surgeons were pleasantly surprised to find no evidence of the expected peritoneal invasion even on very close inspection from inside.

As far as I was concerned, "No" was for mere mortals and pretenders amongst the surgeons.

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey tanstafl, are the "non traditional chem combinations, and immunochemotherapy nutrition" that she is taking. Just Curious, thanks!!

tanstaafl's picture
tanstaafl
Posts: 1292
Joined: Oct 2010

"continuous immunochemotherapy": cimetidine, polysaccharide K are the "immuno-" part; low dose oral UFT for 5FU and the tetrahydrofuran metabolites, with leucovorin are "-chemo". This is aimed at micrometastases and angiogenesis more than nodes that are treated physically, slash and burn, if possible. The biggest issue remains duration of action from 5FU and resistance at different levels, such as nodes, individual old micromets remaining, or new tumor cell clusters trying to "spawn". New "spawn" are this chemo's priority. The live sample treatment assays suggest great difficulty in directly killing off nodes and masses with normal chemo.

"therapeutic nutrition" uses many nutrients in large amounts, excluding vitamin A, that have been researched or trialed to varying degrees for CRC and adenocarcinomas.

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

is not without its consequences, primarily lymphedema, which can be a MAJOR health issue.

Once upon a time the standard of care for breast cancer (ANY breast cancer) was a radical mastectomy. What was radical? Remove the breast, remove the muscle, sometimes remove ribs, and always remove all the lymph glands you can find, even up into the neck.

It was not until the 1970's that they realized for early BC a lumpectomy would do, and for patients with spread to distant lymph nodes, well the outcomes for those with the radical surgery was about the same as for those without it.

At its core, metastatic cancer is a disease of the blood and its related systems, that is why most, if not all, Oncologists are trained in Hematology.

One way of looking at this Pepe, is we "just" have lymph involvement. We do not have tumors in places that are going to lead to organ failure. As my Oncologist at USC Norris put it, compared to most of her patients I am (we are) doing remarkably well.

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

hugs!

Buckwirth's picture
Buckwirth
Posts: 1272
Joined: Jun 2010

Buzzard has had a long break.

But I'll settle for Phillieg's plan of once every three weeks if I can get there.

:)

marqimark's picture
marqimark
Posts: 242
Joined: Jun 2011

I was scared at first, until I realised the dicussion was about distant lymph nodes.

My 60% survival chances had diappeared.

Pepe, the best to you and your battle. I haven't the experience of the collected members of this board, but, I think, I would do all I could towards beating this beast of ours. I would look into surgery if that was an option.

Best to you

Mark

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