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Now a lymph node lights up

janie1
Posts: 753
Joined: Apr 2011

I had some hope despite the ugly nature of this disease. Now, it appears chemo isn't working. Dx'd Stage 4 about 16 months ago.
Felt like we were chipping away at the liver mets. Had liver pump implanted last August, but didn't use much until recently.
-- Liver surgery in January
-- 3 new tumors in liver in May - ablated those
-- 1 new tumor in liver in July - plan is to ablate this one too in a week. (Is this worth it ?????)

But the kicker is, NOW a lymph node near liver on PET lit up (almost didn't have a PET done), but doc wanted to double check the liver spot seen on the CT.

Radiation oncologist said it won't be difficult to radiate the lymph node....not in a bad place. So that will be done in a couple of weeks,

I am horrified, since I've been on chemo for 16 months except for 2 surgeries. I wonder if the break in January for liver surgery spread things, or if the chemo is just not working anymore.

Also, with a lymph node involved.....what exactly does that mean?? I think I know, but just want to hear other experiences. I can handle it. My onc is the liver pump expert, but when one runs out of chemo options......well, I've been on Folfox (she stopped it due to neuropathy),
been on Folfuri which doesn't seem to be working with all these new growths.
Haven't been on xeloda and avastin (she doesn't seem to think much about avastin).

I feel a trial is all that is left. Need to really talk with onc. The last visit was a whirlwind, she had me seeing the 2 radiologists at the same time I was to get chemo, so I was grateful that she was pushing to get things moving. But I left there devastated. And I travel out-of-state and don't have a local onc. This is a nightmare. Wasn't expecting it this soon. And seems things grow really fast that I won't even have time to try anything else. It's like a run-a-way train.

Scared out of my mind.

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Awwwww Joan!!!!
Really can't articulate my thoughts at this moment but just read your post and would hug you if I was there...

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

Ago , I have killed it several times but always had new recurrences , as far it stays in the lymph nodes is ok.
I get twice radiation on the nodes and was a success , main problem is that if limph nodes are affected you must attack it with
Chemo since it use to be in the whole lymphatic liquid ,,until today l have killed it 2 times with some periods of Ned and off chemo,
Hope this time 3th, is the definitive ! Any case the important is to have it controlled and well monitored in order it doesn't spread to any vital organ!
Hugs my friend!.
PS. Every time I been Ned have told the Dr. To stop chemo and as per my experience recurrence didn't appear before 4 months and it's been 5 Times now.

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

I am not clear what secondary adjuncts (cimetidine [VEGF, EGFR signaling], aspirin, celecoxib [COX2], natural versions) you may have tried long or short term alongside your chemo treatments.

Has your oncologist cited any negative biomarker work (e.g. serum VEGF, tissue CA19-9, Target Now Colon Panel) for not using some kind of anti-VEGF treatment like Avastin or cimetidine? The group based odds of VEGF being involved at stage IV with new liver mets is something like 80+%. High dose cimetidine may have a radioprotective standoff period (hours, days...?) from radiation. Avastin has side effects and a standoff period before surgery.

In my wife's case, both CA19-9 and COX2 tissue biomarkers were positive, as they were likely to be, so we were glad we didn't wait for lab results (well after 2nd surgery) to start pre-emptively with mild generics and supplements for those biomarkers after discussions with two alternative MD and a LEF.org ND. For both surgeries, the surgeons were eager to give her Celecoxib but we depend on natural COX2 inhibitors and 1/4-1/2 aspirin alone after ~2 weeks following surgery (LEF advocates high dose celecoxib for COX2 inhibition, we prefer natural for long term maintenance without large tumors).

When a surgeon and/or oncologist tells us "your're out of options", it means that *they* are out of options that they provide, and that it is time to find somebody or something else.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

The way lymph nodes were explained to me, is that they were
like "jail cells". They kept the bad cells captive until the good guys
(the immune system) came and took the bad guys away.

So, finding a cancer cell inside a lymph node is finding what
is supposed to happen in the best of conditions! The lymph node
is holding the cancer cell there, rather than allowing it to travel
throughout your system.

Both my surgeons (2006/2010) did not like the use of PET scans
in the manner the industry is presently using it. The PET was
intended to help define the cancer tumor for the surgical team,
not locate possible cancer cells. Both my surgeons referred to the.
use of the PET for "diagnostics" as a "fishing expeditions", and/or
a "treasure hunts".

If the node's purpose is to hold a bad (cancer) cell, why is there
the sudden need to provide chemical therapy to kill it? Chemical
therapy was not designed to kill single cancer cells, or even small
clusters of cancer, it was designed to destroy tumors. Why not
wait to see if the node will discharge the cancer cell to the immune
system for removal?

I had 7 of 28 nodes with cancer cells inside. They knew that because
they took out 28 nodes for diagnosis; they did not take them out to
prevent cancer from spreading (20 nodes for examination is the
suggested minimum). Once a node is removed, you do not "get more",
so taking out more is actually more harmful to your future well being,
than just leaving things alone (as I have been made aware of)!

I never had a PET scan, and refuse any attempt to suggest one. One
oncologist sat at the foot of my bed in ICU, and made an appointment
for me, for a PET scan that week. When she left, I cancelled the
appointment. When my surgeon checked in later that day, I told him
that the Onco made the appointment...... He said he would cancel it,
and I told him I already did. He was amazed that the Onco would do
such a thing, since it was too soon after surgery. All it would produce,
he said, are dozens, if not thousands, of bright areas. Those areas are
cells in their healing process, not cancer cells..... Healing cells uptake
glucose as fast, or faster than cancer cells.

I'll let -you- (the reader) decide what the Onco's motive might have been.

I personally would not be worried about nodes, and even less interested
in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
the diagnostics.

I wish people would listen to their own gift of common sense and
survival instincts, rather than another individual without the same
inherently individual instinct each of us has.

We were all given the gift of a survival instinct and common sense;
many of us have survived the worst, thanks to our personal "gift".......
while others toss it aside like trash and rely on "technology" and
the education of others.

"Trust thyself"

Best of health to all,

John

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

Very well said. I know my liver surgeon always felt like the onc wanted pets and done to soon because he said that the spot was still healing and would light up.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Maybe we all have a pet node!

An "Abstract" excerpt:

"In patients with positive mediastinal PET mages, invasive
surgical staging remains mandatory because of the possibility of
false-positive findings due to inflammatory nodes or granulomatous
disorders. In the search for metastatic spread, PET is a useful
adjunct to conventional imaging. This may be due to the finding
of unexpected metastatic lesions or due to exclusion of malignancy
in lesions that are equivocal on standard imaging.

However, at this time, PET does not replace conventional imaging.
Large-scale randomized studies are currently examining whether
PET staging will actually improve the appearance of lung cancer outcome.
"

From: The Oncologist (Journal of the Society for Translational Oncology)

I realize that this article is not "new", but it is more concise and easier
to read than most documents to be found on the web. Nothing has
changed; the technology remains the same, and later journals reflect
the same theme.

It is easy to become panicked when hearing results of scans, and
even more so when a specialist is saying the words. But no-one
should panic! You have to try to remain calm, and make certain
you get another opinion from another surgeon specializing in cancer.

The "second opinion" should be from a different surgeon that is
not of the same group or association, and preferably not in the
same town as the present team that is treating you.

Surgeons usually are more objective regarding cancer situations
than Oncologists, and often have other views on a course of action
that can save your life.

Get other opinions prior to agreeing to -any- remedy. Use your
gift of logic and instincts for self-survival in your effort to beat
cancer at any stage.

Staying alive is not always that difficult, when we give ourselves
the time to think things through.

You're probably wondering when I'm going to toss in the
"TCM card", right? Ok.... I just did.

If anyone is even considering an "alternative", treat the alternative
just as you should treat any other modality. Look for data that
supports the claims, and question any claim.

That includes all of western medicine practices as well!

Try to understand, that the cancer is growing inside you because
your body/immune system is allowing it to do so. No amount of
toxic chemical (that manages not to kill you), is going to manage to
stop cancer from forming.

Weakening your immune system allows cancer to grow. That notion
is supported by the mere fact that they stop chemical therapy if/when
your immune system becomes too weak. It is why the chemicals used
in "chemo" are well known carcinogenic; they weaken your system
by damaging your good cells. Damaged cells were being allowed to remain
in your system, and that was the cause of your cancer to begin with.

Chemo can help knock down tumors, and may be the best way
to attack what might be on the cusp of killing you immediately.
For fast growing, and/or life threatening cancer growth, whatever
works fastest, is usually the best!

But your overall health should never take the major hit; how can
anyone be expected to survive massive toxic chemical attacks
to their body and soul?

Options are there for your survival, but be careful and be
very selective. Take time to allow your better senses to go
into action.....

Above all, do not allow fear to guide you.

Easy to say, I know... But to beat the odds, you have to do
what makes your body feel best, and you have to work at it.

It's a relentless fight, and some of us will succumb anyway,
but many, many of us will outlive the prognosis that was
given to us; some by years and years and years.

Think positive; "Trust Thyself".

Best of hopes,

John

danker
Posts: 1191
Joined: Apr 2012

Totally agree with your comment about letting cancer surgeon make decisions. My onc wanted more chemo after resection which surgeon vetoed. Faith in my surgeon has made me NED for last 2 years.

janie1
Posts: 753
Joined: Apr 2011

Hi Danker,

I agree, too, but I have always had some cancer activity. Haven't gotten to an NED state (yet). If I get there, then a chemo break will be highly necessary.

patricko3312
Posts: 1
Joined: Jul 2013

John,

I'm a first time poster and after scouring the sight for some clarity, you have eloquently answered my question.  GREAT ananlogy about the ''jail cell''...thank you!  

My best to all and EVERY ONE OF YOU and your family are in my constant prayers.

Thanks again John.

jen2012
Posts: 1607
Joined: Aug 2012

Hi Patrick...this is an old post and many wont open it and see your reply. Start a topic if you have any questions or just to introduce yourself...folks here are great.

Joan...if you happen to see this I'd love to know how you are doing?!

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

Sorry! Praying it can be taken care of and you will be cancer free!

*hugs*
Gail

steved
Posts: 835
Joined: Apr 2004

SOrry to hear of your continued struggle- it really is two steps forwards and one back (sometimes feels like more back) in this journey. Spread to lymph nodes is common and really not a lot different than spread to any other place. The three main ways tumours spread is simply growing into local areas, getting into blood suppply (veins draining the area and because teh veins from the bowel drain to the liver most go there) and getting into lymph drainage systems which drain to lymph nodes.
John 23 is partly right in his description but I would disagree with him on one or two points. The lymph system is about draining bad things from parts of teh body for the immune system to deal with and that is its purpose. This include cancer cells. Howeever, what happened in your situation is that cells have spread through through the drainage channels and have now grown into a small tumour. It is no longer a single cells or a small cluster, but a growth big enough to light up on PET scan. That is the reason why it needs active targetting in treatment and the main method for that is radiotherapy if accessible and more chemo.
I appreciate your anxieties at present and you know continued spread on chemo is not great news but it is the most common picture in those of us in stage 4 of this disease. Whilst we still hold hopes of cure for many in stage 4 the main role of chemo is control. As you say you have been on the main protocol concoctions of chemo but there are still other options. I do think it is worth considering avastin and have you had your KRAS done and been having cetuximab with your folfiri? You have had a lot of 5fu and my understanding is that xeloda as oral 5fu doesn't offer anything much beyond the iv (except convenience). Then there are new developments such as regorafinib (see other discussions) that you may qualify for.

However, for now take some time to get your head in order and adjust to this new news. Ask questions of your team and don't leave till you are satisfied you understand. Talk to people who you trust close to you about what this all means to you. the 'whirlwind meetings' describe are overwhelming at the time and it isn't till after taht you digest and process what has happened. Give yourself time to do this.

My thoughts are with you,
steve

janie1
Posts: 753
Joined: Apr 2011

TC and Gangsta Gail - thanks for the hug and prayers.

Pepe - I thought of you (and Tans wife, and Kathryn_in _MN ) the second I heard lymph node. Your words lifted me up and I do appreciate you taking the time to respond. Always wishing you the best. I remember you being friends with your oncologist, so I am sure they will take good care of you.

Tans - i haven't researched near the way you have. My conversations with docs are pretty minimal. I learn more from you, but i am still confused on so much. My excitement level on using Celebrex in this cancer battle has really elevated. But, again, I just don't have enough info to even ask good questions. What is a more natural cox-2 that you use? I am Kras mutant, so that eliminates an option, but I thought someone was doing a trial on adding something to Erbitux to make it useful for KRAS mutants. Maybe this is taking time (years).
I take Protonics which reduces stomach acid.....recommended while I use the hepatic pump. I can't imagine that I could take cimetidine(sp), too. Oh cimetidine.....i don't fully understand. And you mentioned that along with radiation....something. Do you mean to take cimetidine before/after radiation for (reason?). Sorry, a bit frazzled.
I would love to know if there is anything that would decrease the damage from PET/CT scan contrast. I feel my kidneys are taking a toll. There's got to be something. Anyway, thanks as always. You always lift my spirits.....kicking arse your way.

Steve - thanks for your calming words. That's what you are about. That's why I think your upcoming surgery and rehab will go well.
( Kras- mutant here, so no Erbitux for me....that's why I was getting panicky......but I will find out more at next appt. It was just a very bad week.

John and Vicki - My first onc i think just loved to order a PET scan. My current onc and surgeon don't really want it, but I can see why this time she went for it. My liver surgery was in January, so shouldn't skew the PET. Before this, hadn't had a PET in a long time.
John, for what it's worth, i do go to a fairly well-known onc. She gets patients from all over the world. I talk to people in the waiting room week after week who are currently disease-free, many, for years. As to getting a second opinion from a "different" group, not connected to my current onc.....probably I will have to pass on that (ask Phillieg). Right now, where I go, gives me the best examples of good outcomes. Real live examples.
I would love to do something else, but I just don't have any live examples. But if things go way south with current plan, then, yes, WTH.
I have a Chinese friend who I asked about doing TCM. She vehemently said, don't do it.......and this is a person who has magnets taped to her neck. Sooooooooooo, this is what makes decisions soooooo hard.

(Sorry this is so long)

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

Bingo, J!

My kidneys have taken a big hit over the past eight-years...I'll have to say that I think much of it came in the form of Irinotecan aka Camptosar aka CPT-11.....the literature states that it's big on renal damage.

Were I to have to do anymore of that, I'd probably end up on a full-time catheter...things were very bad at the end of my last treatment.

The barium contrast we drink (if you don't do iodine) is equally hard on your kidneys as well....mine just ache after I do it.

I've been moved to every six month scans now....so eliminating one or two scans with contrast will help slow down that damage......and my place doesn't believe in PETs at all....I've done 1 of those in the three years I'm there.....that can only help as well.

So, I hear you.....:)

-c

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I am so sorry...hoping they can put the breaks on the run away train for you.  I had 4 out of 18 lymph nodes tested come back positive.  I am a stage 3 ... Signet ring appendix cancer.  Try not to read to much into the lymph node involvement.... It may just be localized.  had id 6 months of the Folfox...yes, I have neuropathy... But I also have some peace of mind that I did everything I could to stop this disease At the time.  I am now seeing an appendix cancer specialist...because of my pathology... I feel that I am in the right hands for now.  When I feelit is Lon longer working...I will seek another opinion.  i wish you all the best.

 

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