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Marion...So happy to hear that your daughter is doing well!  Yes, I actually had enlarged lymph nodes at the time of my initial surgery for CC, 4.5 years ago.  The doctors thought my nodes were maybe reacting to the surgery or to the mesh that I had to have implanted because of an incisional hernia.... and I even had a biopsy of one of the mesenteric nodes in 2011 which did not show any disease.  This same node was biopsied last month, this time with a follicular lymphoma diagnosis.  The doctors feel that I have probably had the F.L. for many years....interesting that I still wouldn't know that I have it if not for the many scans for CC.
My very best wishes for your daughter! Dianne

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Dianne.....My very best to you as well with the upcoming treatment for F.L.  I don't know much about Lymphoma, but sure is interesting to know that you and my daughter had enlarged lymph nodes and yet there was no correlation to cancer.  Had your white blood count been elevated for some time?
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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Marion....My white counts have been perfectly normal.  I still wouldn't know I had F.L. if not for my many scans for C.C.  The standard treatment for F.L. is to watch and wait until symptoms present or until lymph nodes get to a certain size, neither of which has happened in my case.  My doctors are still discussing my treatment options, but most likely will continue to wait until my next scan, then make the call to either treat with chemo or continue to watch and wait.  How old is your daughter and what is the location of her enlarged nodes?  Mine were in the abdomen, so not noticeable except by scan.   My best to you both! Dianne

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Matt...great news!!!!!
Marion, I did not know your daughter had a diagnosis
Prayers for everyone!
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

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Looking back at her medial records, my daughter's white blood count continued to rise for more than 2 years and no physician took note of it.  At time of diagnoses she had enlarged lymph
nodes all through her body, some as big as golf balls.  Retrospectively all the signs where there, but no one caught it early.  My daughter is 39 years old, completed treatments and is in remission/cured.  Dianne, I expect things to work out just fine for you as well.
Lisa, thanks for your concern.  We are in a positive mode, she is young and has recuperated exceptionally well.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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Hi Dianne,

I'm just now reading your post - I'm so sorry to have missed it!

Yes, amazing doctors and amazing facility. I'm not going anywhere else for medical care from now on even tho it's a long haul from VA to MN!

The only oncologists I saw were while in my hospital room recovering from surgery. I can't remember their names but know it wasn't Dr. Alberts.

I love hearing of others with similar experiences that are still around to share! Best of luck to you!!

-Matt

Dianne.N wrote:

Hi Matt....I wanted to reply to your post because we sound like we've had very similar paths, with the same doctors!, and I'm 4 1/2 years post resection!  My symptoms started right after Thanksgiving dinner in 2009 with severe indigestion.  Then I got the itching and finally an MD friend of mine got me to my local doctor who did an ultrasound and MRI and recommended a major cancer center.  I went to Mayo in Rochester in Dec. 2009 and saw Dr. Gores and then Dr. Nagorney...both amazing doctors who saved my life.   My surgery was Jan. 5 and I chose not to do any adjuvant therapy.  I had a few bumps in the road after the surgery but am pretty much fine now...except that the docs kept scratching their heads regarding some enlarging mesenteric and retroperitoneal lymph nodes.  I finally had a biopsy of a mesenteric lymph node that revealed I have follicular lymphoma which is much more treatable than CC.  I see an oncologist this afternoon to figure out treatment for the F.L.  Anyway, I'm wondering who your oncologist is at Mayo.  I had Dr. Alberts initially but for some reason that I don't understand he has not been assigned to me the last two times I was at Mayo.  (Oh, I take Metamucil every day for diarrhea issues - it helps.) I know this must be very difficult for you with younger kids at home, but it sounds like you have a great attitude.  We learn to enjoy and appreciate each and every day!

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Hello all,

It's been about 10 months since my diagnosis and 9 months since my surgery. I had some blood work done last week and am relieved and happy to say that everything remains normal, including CA 19-9. My next check up with scans and blood work will be in January 2015.

I offer my good news as a source of hope for others with similar experiences.

xo

-Matt

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MATT you get one huge YIPPEE for your post today. I am over the moon with this one and YES I can't think of a better RX for all than to read of your success! I am so happy for you! All of the upcoming holidays will be doubly good this year!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Matt,
Congratulations and keep up the good work!! Always love good news and reasons for hope! Thank you and take care!!
Melinda

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Matt.....simply fantastic. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

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Thats great news Matt, thanks so much for letting us all know!  My fingers are crossed for you and further good news from you as well!

My best to you,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

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Congratulations Matt- that's wonderful news.

Best wishes,

January

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Hooray Matt!!!!

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

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Hi Everybody.

This Saturday, 1/17/15, will be the one year anniversary of my surgical resection with clear margins.

I've made an appointment with my team at the Mayo Clinic in Rochester, MN for bloodwork and an MRI to look for recurrence and/or metastasis.

This will be my fourth follow-up visit/scan and the scanxiety is going up every day now... I could use some encouragement  smile

Mentally/emotionally I feel great for about a month or two after a clean scan and then gradually start worrying about the next scan until it gets pretty consuming. I know it's pretty normal but I can't help thinking about if/when the CC comes back.

I tell people that this past year, including CC diagnosis, surgery, and recovery, has been both the worst and the best year of my life. I've gained a new perspective on life and made some related changes as a result.

I continue to visit this forum primarily to keep tabs on some of you, my friends, and your journeys. I also try to focus on the long term survivor stories and hope to be contributing to them myself over the years. It is SO SO very helpful to hear from the people who have survived CC for years.

If anyone's going to be in Rochester, MN the week of 1/26/15 and would care to meet, I'd love it - let me know!

-Matt

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Dear Matt, as you already stated the scanxiety gets too much at times and is perfectly normal. I have found that before my scans (2 X a year for a Cancer I had) the more nervous I get the better my report turns out. Don't ask, I am totally weird! I am not a psychic but I have a good feeling about yours and anyway I want to be able to write on here, YIPPEE! Keep yourself busy so you can't over think and I will have everything crossed for that good report!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Matt, Darn...wish that we were more coordinated with our checkup appointments.  My next one will probably be late Feb or into early March, depending on when they make the appointment and how weather cooperates for travel.   My one year anniversary of surgical resection with clear margins will be Feb 28th this year...a month behind you.  I'm quite sure that in another several weeks, I'll be having some anxiety creep in also.  However, today, I had an MRI done here at home, due to a back problem....so I asked them if while they were reading the MRI....if they'd be sure to watch out for anything unusual that could be CC mets.  They assured me that they look for anything out of order.....but....I figured that unless I mentioned iit, they might pass off something as not significant to my back problem.   This wasn't done with contrast, so I don't know how much they'll be able to see of the type of stuff associated with CC.  My main concern at the moment is getting my back issue (which has been on-going since the diagnostic process for CC back in early Feb 2014) diagnosed and fixed if possible.  How nice to have something besides CC be my main medical concern.  Go figure! 

I'll have a meeting later this week, with blood labs with my local oncologist who oversaw the chemo.   I must ask about the CA 19-9.  That has never been drawn again since before diagnosis that one time.  It was negative then...so maybe that's why they don't rerun it.  But, I figure if the CC comes back...it's possible that a new location might run up the CA 19-9???????   Dunno!   As I said...I need to ask.  In fact, all of my blood counts were in the normal range before diagnosis....so the blood labs really only have shown issues that the chemo caused.    Are you getting the CA 19-9....and was it elevated when you were diagnosed?  I can't remember right now and haven't looked back on your messages....easier to ask you again.  smile))

Pretty much with you on the scan anxiety....fine for a month or two afterward...and then it builds until the next scan.  Except, this last one was done the day after Thanksgiving, and I have to say I had a hard time with the lead up to Christmas.....very weepy for no apparent reason...and the smallest things would set it off.  I still tried and did enjoy the holidays a lot.....so I can't say it was bad...but there was definitely something amiss.  Once Christmas and New Years was over, things seemed to lighten up some.  I have many good and happy memories of Christmas 2014 to look back on.......how can I not.....I have a 3 and a half year old grandson and another on the way.  Life is indeed good. 

I'm so pleased for you.....and hope to hear back great news from your end of January scan.  Will be watching for your post.  Happy Anniversary!!!!!   

Julie T.

I

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

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Iowagirl wrote:

{snip} I must ask about the CA 19-9.  That has never been drawn again since before diagnosis that one time.  It was negative then...so maybe that's why they don't rerun it.  But, I figure if the CC comes back...it's possible that a new location might run up the CA 19-9???????   Dunno!   As I said...I need to ask.  In fact, all of my blood counts were in the normal range before diagnosis....so the blood labs really only have shown issues that the chemo caused.    Are you getting the CA 19-9....and was it elevated when you were diagnosed?  I{snip}

Julie, my CA 19-9 was 453 upon diagnosis, about 2 weeks prior to surgery. They check it routinely now. It was 11 one time and 10 the next. Under 55 is "normal".

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Matt...maybe that's why the doctors don't check my CA 19-9 any longer....since it didn't register as abnormal from the get-go.  Thanks for the additional info about yours.  That makes me feel a bit better that it isn't something they're forgetting about. 

Julie

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

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Matt -
I understand the scanxiety.....my husband doesn't get it very much.....he's more of an optimist where I am more of a realist.....being a nurse I dwell more with the reality of things. He is now almost 2 years post surgery. His first set of scans and labs post chemo-radiation were clean then the next one was clear but his CA 19-9 was elevated for the first time since stopping treatment, all we did was go in a month earlier for labs and scans.....all clear again and the CA 19-9 was closer to normal but not quite. Enough that the ONC was not worried. He has another follow up in February but it will be labs only. Our doc told us that the 2 year mark was the big one......most all of the recurrence happens in two years, not to say that it doesn't come back at other times. Keep putting one foot in front of the other until you get there.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

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Dear Matt,
Sending you encouragement, good thoughts and prayers for a clean scan! Hoping you can have some peace and calm leading up to it......that darn scanxiety gets the better of us all at times!! Hang in there....I will be thinking of you and looking forward to your excellent report!
Melinda

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Matt,
Best wishes on the upcoming scan.  I think it is very, very normal to get nervous around scan time. I have my next scan in May.  That will be the 4 yr post resection scan for me. 
I still think about CC every single day but not all day every day like I used to.  I still get nervous around testing time and every time I feel anything weird happening in my abdomen.  I am accepting these feelings as the new normal.  I think that is all one can do.
I will be praying for you.

Take care,

Susie

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I'm afraid I have some bad news to share. My check up last week (Jan 2015) at Mayo did not go well.

My CA 19-9 is back up to 360. It was over 400 prior to resection and had been hovering around 10 post-resection until now. All other blood tests were completely normal.

They found a suspect 1.5cm fluid-filled spot near my pancreas, performed an EUS and FNA and the cytology was positive for cancer. The assumption is that this is the CCA back again vs a new primary cancer but I will know for certain later this week. The tumor is in the abdominal cavity vs in the pancreas and as of now doesn't appear to be impacting my health in any way. The tumor was not present in my previous MRI from June 2014.

My worst fear, realized, I'm sad to say. I expected this day to come, but was hoping it wouldn't be quite so soon.

Mayo is unwilling to even consider resecting the new tumor, believing that the cancer has metastasized and there is no benefit to doing so. I'm finding that hard to swallow.

Mayo's only recommendation was the standard Gem/Cis chemo treatment which I know is not curative and I'm afraid may not even have any tangible benefits in this situation. They did mention a few clinical trials but it seems that most require "failure" along the standard Gem/Cis treatment first.

I've asked Mayo to contact FoundationOne to look into genetic testing and am seeking a local oncologist to potentially start chemo. I'm also hoping to get a full scan - Mayo only scanned my abdomen so I don't know if things have popped up elsewhere such as in my lungs.

Question: Is it unheard of to resect something like this, assuming it's possible, even though it may be the result of metastasis? On the surface, it seems like an "easy" laparoscopic procedure...

98 (edited by Lainy Mon, 02 Feb 2015 13:49:13)

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Aw, Matt, I am so sorry to here this BUT I would think the tumor is small enough to try something else. My husbands had returned after a Whipple and the return was to the Ampulla Vater and he had Cyber Knife. It was like a miracle and it worked. I am a little surprised that Mayo feels they can do no more. Mmmmm  I think you are very wise to get a full scan as it's like half a story right now.
I sincerely hope it is just the one and that they put their heads together to come up with a plan. In the meantime I think you are doing the right thing with opting for chemo. You never know what it can do for you and at the very least it may contain the little beast until you come up with something else. Can't wait to read the next step. Keep your fight and courage up.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

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Matt, you know that I do love Mayo Clinic and trust them, but as much as that is true, sometimes there comes a time to get another opinion and this may be the case.  I broached the subject of a consult with another doctor....either at Mayo or elsewhere if my CC comes back, and he said he would facilitate that happening and do everything he could to get me in to see whoever I wanted.  It doesn't mean you have to change ...to move away from Mayo....but getting another opinion or two may be a good idea at this point. 

As to the abdominal scan.....it is my understanding that they catch at least part, if not all of the lungs with this scan.   At least that has been the case in my abdominal scans at Mayo.  However, since you've had a recurrence, I think you'd want to know what, if anything, was going on elsewhere in your body, to have a baseline in advance of any other treatment....to know that the treatment was working or not after the next scan. 

Did they refer to the abdominal recurrence as an ascite?

I don't know about resecting the abdominal met. ......if in that location it is not possible?......or being to the abdominal wall, it means that it's likely growing microscopically in other locations already, so hitting it systemically makes more sense.  I don't think it is possible that they could know the latter for sure....it's just a very educated guess.  I personally think that in that case, it ought to be up to the patient.  Heck, they make us choose on whether to do chemo or not, right? 

I'm glad to hear that you've contacted Foundation One.  That's a super idea to see if you can find a targeted treatment for your recurrence. 

Take care, Matt.  Let us know what's happening with this and what you find out.  Maybe someone on here has some info about resecting this small regrowth.

Julie T.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

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I'm in touch with NIH and have agreement from my Mayo team to refer me to the NCT01174121 trial.

What drives me crazy is that I've never had chemo and all of the trials, including this one, seem to have a requirement that "All patients must be refractory to approved standard systemic therapy." which for CCA basically means try Gem/Cis first.  We know that doesn't work for all and for those that is does work, it's temporary, so why force us to go that route first?