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(34 replies, posted in Introductions!)

Sorry for the long lapse.  Mom made it thru making her molds for the SBRT Tx's, she said, that was the worse because of having to have her arms above her head for long periods of time.  In March she had 5 treatments over 5 days ranging anywhere from 30 - 60 minutes depending on her breathing routine.  She did start to feel fatigued after the 3rd treatment and the fatigue continued for about 3 weeks but it did decrease over those 3 weeks.  She is now feeling and looking very good.  She had her 3 month blood work and scans, she requested a full body scan - good for her, just last week, we received really good news.  She has some elevated liver enzymes, doctor was not surprised to see that because of the radiation, expects to see it decrease at her next check up, total bilirubin is at 0.5 smile scans showed a possible reduction in the size of her bile duct mass, at least it didn't grow, hopefully will see more reduction in 3 months, no new lesions were observed.  She's been in good spirits about all of this and I think our faith has grown going thru all of this with lots of support and prayer.  God bless us all as we travel this unpredictable journey together.

Lainey
Thoughts, prayers and well wishes being sent your way.


Theresa

3

(34 replies, posted in Introductions!)

Canceled for today. Rescheduled for Monday 24th and Thursday 27th of next week. 

Stay tuned smile

T

4

(34 replies, posted in Introductions!)

Thank you
I feel my mom has been fortunate in a couple of ways thru all this.  She had to have 2 ERCP's done, first plastic stent plugged so now she has 2 metal stents in place and they have done very well for her.  I will let her know about the fatigue build up, they did give us a list of most common side effects to watch for.  Her appointment is tomorrow morning and she is so looking forward to it, unfortunately we are having a terrible blizzard storm as I type, and I may not be able to get out to take her because I live in the country - I guess I should have stayed at her place in town tonight.  I will keep you all updated as we plug along.

Hugs to all and In Faith,

Theresa

5

(34 replies, posted in Introductions!)

Mom's evaluation, labs and consult went well.  The type of radiation treatment is SBRT.  She goes in this Friday for simulation imaging, MRI and CT Scan to get everything "lined up" for the treatments.  5 treatments over a 2 week period depending on hers and their schedule.  With the neuropathy in her hands, response to chemo as far as shrinkage, they felt radiation would be the way to go.  She feels good about the path they are taking.  We did learn that she only has one kidney today, a complete surprise.  Need to really watch her kidney function tests as well. 

Is there anyone that could give me some feedback on their experience with this SBRT?

LisaS, how are you doing?  I believe you were to start radiation or already started.  Hope it's going well for you.

Percy, I hope you are gaining your strength back.

Keeping all of you in my prayers,

Theresa

Bilirubin is down to 0.5 today, still coming down

Percy
Nice to see you back on-line smile

I pray for your quick recovery, be strong.

T

Catherine
We have a bit in common, I too am the middle daughter, but 2nd to last out of 6 siblings.  Mom's tumor is also inoperable only because of it's location and she is not a candidate for transplant because of her age, not even a partial transplant, because, again, the location, bifurcation of the liver bile duct.  Her blood tests, consult, and evaluation for radiation therapy, hopefully IMRT from what I'm reading, is next Monday the 17th, at Mayo in Rochester, Minnesota.  I'll have to read up on this SIRT.  Mom overall is doing well and looks well, can't ask for anymore than that, I guess for any of us in that matter.  Take care and I look forward to keeping in touch and comparing "notes".

Prayers
Theresa

Hi Catherine
My mom was diagnosed in October as well and will be 78 in June.  She is on the same regimen as your mom for treatment.  Mom was concerned about hair loss and her specialist said there would be very little hair loss and so far that's what we've noticed.  Everyone is different and react differently to similar things.  We've agreed that if it happens, it happens and we'll deal with it at that time.  The cancer support group in our area, give out care packages to patients when they come in for their first treatment.  in the package there is a beautifully hand made scarf hat to wear if wanted, we found a beautiful feather pin to clip to it if she wants to dress it up.  My mother is also dealing with stress from one of my siblings, substance abuse and jail time, I'm surprised she has not lost more.  We deal with things a day at a time and take a big breath before taking the next step.  Take care.

Theresa

Percy, I'm hoping you are well and your appointments went well in Rochester.  I know how those appointments can get behind and time gets away.  Let us know how you are.

Prayers to you

Theresa

Percy, I work in Rochester at the college, RCTC, anywhere from 2 -5 days/week during the school year.  Give me a shout if your looking for someone to talk to.  I have gained so much knowledge from reading the posts on this website, to the point where one Doctor said "you've really been doing your homework".  I feel like I need to be an advocate for my mom since she really does not want to research this disease because of the prognosis received.  I do have a medical background, I'm a Certified Veterinary Technician, and do know the terminology, blood values, side effect issues, etc. etc. etc.  My saying is "a little knowledge, can be harmful", but not in this case, you need all the info you can absorb.


smile
Theresa

Percy, you're willingness to share your story with soooooo many strangers who have become your friends, support line, listeners and most of all learners is priceless, I thank you.  Maybe we'll meet you in Rochester when we are there, or if you need someone to be there, just to be there, I'm not far from Mayo at all.

(((((big hug)))))

Theresa

12

(34 replies, posted in Introductions!)

56 is young as I am 49 and my husband is 56 as well.  Moms appetite was not good either, she said things didn't taste good and that her coffee tasted bitter.  I noticed that she had a different scent, body wise and halitosis.  Her Bilirubin was at a 21 high.  Since her 2nd ERCP and two metal stints placed, her Bilirubin is down to 0.6 as of last Thursday.  Her color was a golden yellow, her house is neutral-brown colors so her color was not noticed until she stepped outside.  Sounds like you have a very knowledgeable team working for you.  They did mention drain placements to mom if the stints didn't work, now I have a resource to go to if need be.  I think moms overall exercise, healthy diet and healthy living has helped in this journey so far.  She dropped 15# which put her at 108#.  Not an ounce of fat on her in the beginning and now nothing to spare, but like I mentioned she has been gaining.  I've been thinking of doing a run of some sort myself as my husband and i are very active, work wise and fitness wise.

13

(34 replies, posted in Introductions!)

Thank you both for your input, gives me a place to start.  They've only been saying "localized radiation", not what type yet, and Dr. Pitot and the Radiation Specialist will decide which will be most beneficial, I'm sure.  We probably won't find out until 2/17/14 while we are there.  I will definitely look at this website so that I can educate myself before this meeting.  Lisa, I talk to mom about you a lot just because you both are so close in the time frame.  I had told her, because she asked how old you were, that I thought you somewhere between 45 - 55 just by in how you write.  I was not to far off, was I?  56 I believe is what I saw.  I will also look on this website in the treatment area to see if there is any other info that may be beneficial.  The way this IMRT sounds, it's sounds almost foolproof, nothing is though.  As we are at her meetings on the 17th, I will be thinking of you as you proceed.

Take care & I'll be checking in again,
Theresa

14

(34 replies, posted in Introductions!)

Mom is on her 8th treatment this week and handling Chemo well.  She has labs, radiation therapy consultation and evaluation appointments set up in Rochester with her specialist on February 17.  I'm sure there are questions I need to ask but I have no idea what I should ask.  I know treatments will be daily for 5 weeks and will take approximately 10 minutes once set up.  I should probably ask what technique they will use like "cyberknife". Could you all help me in what I need to ask?  Her overall health and outlook on all of this is positive, plus she has immense faith.  She continues to gain weight and is adding more daily tasks weekly.  She is also a childs advocate in the county, which has kept her mind sharp and her drive strong.  She has a few cases coming up that will finalized with forever homes - adoptions - which gives her the utmost satisfaction in difficult cases, this is where she gets her will and drive.  So any information or questions I need to address would be greatly appreciated.  I keep all of you in my prayers, you have given me such strength.

With Love
Theresa

15

(34 replies, posted in Introductions!)

We have encouraging news, the tumor is shrinking with no new lesions noted.  Her blood work came back "fabulous" as her Doctor put it.  The Doctor will now be consulting with her GI/Cholangiocarcinoma specialist on whether or not she will be a candidate for localized radiation.  I asked what the new measurement was on the tumor and I was told that it's not as visible or dense as it was before and therefore could not get a good measurement on it, but that it was considerably smaller.  She is having some neuropathy of the toes and finger tips, so they are lowering her Cysplatin a bit.  I'm still on the cautious side with the decisions made, but I feel I need to be an advocate for her, to an extent, in the end it is her decision as far as how much she wants to go thru.  I feel she'll keep fighting-with prayer and treatments- until she can't.  Thank you all again for your kind words and prayers.  I'll be keeping you informed through out this journey.

Theresa

16

(34 replies, posted in Introductions!)

Well, tomorrow we get the results of her Scan done this morning.  Please keep "Alice" in your prayers for healing.  I will check in tomorrow afternoon with news.

17

(34 replies, posted in Introductions!)

My mom is my best friend.  We have been fortunate to be able to travel together and spend quality time over the years, so this is not going to be an easy adventure for me.

I don't know how many other Clinics/Hospitals offer this, but Mayo Clinic has an App that I've downloaded to my phone.  I am able to view my moms records, in ALL areas, right in the palm of my hand.  It has been extremely helpful for me to be able to get results for within 20 minutes of a blood draw.  Obviously I am on her records as an information release contact.  It might be helpful for other people to ask their facilities if they offer such a service.

Her is her history:  1973 perforated malignant colon polyp, removed 12 inches of colon, mesenteric tissue and affected lymph nodes, no follow up treatment.

1979 removed a contained ovarian cyst, malignant cells observed, no follow up treatment.

She has had routine colonoscopies every 3-5 years since 1973.  Only once has she had a clean-no polyps- on her colonoscopy.

When we met with Dr.  Law to get her results from the first ERCP, he told us that their findings were Cholangiocarcinoma. This type of cancer is a metastatic type cancer usually stemming from breast, lung(?) and colon.  Another Dr. We met with said that since it has been this long and the colon cancer back in "73" was a T1 lesion, he didn't feel that this is where it came from.  Our family history has very little cancer within it.

In looking at her pathology reports from past years I came across a report for her 2/2008 colonoscopy.  In the report it states that there was a polyp removed and pathology finding were positive for Tubular Adenoma.  I asked her ONC if this was substantial and I was told no, that they are two different types of adenoma cells.  I can understand this to a point, I do have some training in cell morphology.  I come to the conclusion that "Things happen for a reason", I have not been able to figure this reasoning out yet, probably never will.  All of this, sounds like in everyone's situation, happens so fast and there are no real big flags that anyone can put up, except for the loss of weight, nausea and decrease in appetite prior to turning jaundice and itching.  Mom turned yellow and icteric with in a 24 hour time period. 

All I can say is that we pray a lot, and put our trust in God and her team of Specialists from here on out.  She is a fighter and continues to do so.  I gave her the website address yesterday, she's not sure yet if she wants to read what other people have to say - quite yet.  I told her that the stories i have read have given me HOPE and encouragement about her condition.  She said yesterday as many of you have that "no one has a specific expiration date".  If that doesn't tell you she's ready to fight, nothing will.  Thank you all for your kind words and support.

Theresa   

When we sat down with h

Wow, am I fortunate to find such a sight.  Mom, 77 years young, was diagnosed 10/17/13, Stage 3/4 - 25mm marker at the bifurcation of the liver bile duct with a PLBN tumor in the pancreatic duct.  From what I am reading she  doesn't appear to be as advanced as the majority of you.  They gave us an extremely grim prognosis, but after reading your stories of strength amoung yourselves and/or your family members you have given me some fresh air to breathe in, thank you.  She had to have a stent placed which became occluded immediately so a Y metal mesh stent had to replace it.  She will start her 3rd round of Gemzar/Cisplatin next week and then repeat scans soon after.  Her blood work is looking better as we go along.  I was most concerned about her ALKP being elevated for so long, but after reading DukeNukems post, I'm feeling ok about it.  Her bilirubin had been extremely high which has affected her short term memory, they say that that is permanent.  We take it day by day because each day is truly a gift.

She is Doctoring in the Mayo System out of Rochester, MN.  We live in Austin, MN - which is 40 minutes from Rochester - fortunately the Doctors come to Austin, she has a great team.  They have been extremely accessible and informative.