Topic: Needing to vent

Hi all.  Haven't been on here too much.  Hope everyone is doing okay and trying to enjoy getting ready for the holiday. 
I had my scan on Monday and then met with my onc on Tuesday.  I also came down with the flu this week and couldn't have chemo.  So, Tuesday we drove our 2 hours to OHSU and didn't get results from the MRI or have chemo.  Two weeks ago I wasn't able to have chemo either bc my WBC was too low.  So I have missed 2 and then next week I was supposed to get chemo but I can't because I am leaving town to be with family.  I guess once again I just feel somewhat defeated and hate that I have to let go of not being able to have control over anything. I am scared, missing chemo is decreasing my ability to fight this damn thing and I tend to overthink what can happen during this 2 week period.  Is it aggressively going to get worse? Spread?  Get more sick? Etc. All meanwhile awaiting results from this scan.  Last time we got results immediately.  Today the nurse told me that we need to allow the radiologist up to 2 days to finalize the report.  So I feel a little frustrated that things seem somewhat inconsistent.  Feeling scared, anxious, and angry.  Thank everyone for letting me vent and express how I feel.  Blessings to all.
One positive thing is it was my son's 9th birthday on Sunday and I am so grateful that I got to be a part of that.  He is such an amazing wonderful son, and a reminder as far as why I want to fight so hard.  I pray that I get to be around for many more...

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Hi Porter,

You have every right to feel all the emotions you are feeling. This cancer is scary. I'm sorry you have to wait for scan results. I think that is the one thing that causes everyone such anxiety. I wish the results could be read instantly. Happy Birthday to your dear son. Children are such a bright spot in our lives. I am hoping you have great scan results and can resume chemo in the near future. Happy Holidays to you and your family.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

3 (edited by Darla Wed, 18 Dec 2013 19:35:10)

Re: Needing to vent

Vent away.  We are hear to listen.  You have every reason to be feeling this way right now.  I also want to wish your son happy birthday.  You are blessed to be here to spend it with him and I am sure you will be here to spend even more special times with him.   I'm hoping you can take a break from all this, relax and enjoy the holidays with your family.

Love & Hugs,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Needing to vent

The Doc just sent the results to my mychart.  I might post them.  It looks like maybe on the large mass it has shrunk maybe 1cm.  No new spreads or growth.  Impression reads stable with minimally improved disease.  I am not sure if I should be happy with these results or not.  Of course we are always hoping for shrinkage, but stable is okay right? Damn, I just wish there was something out there that we know would take this thing on more aggressively... sad

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Porter, stable is good! I understand that when you are off of chemo for a few weeks what you had keepson working for awhile. I know when Teddy had radiation and they had to wait for the Cyber Knife it took a couple of months and the Radiologist told us that this stuff can keep on working awhile. So with your report being stable and knowing you are still cooking take your family trip and try to enjoy! Happy Birthday to the young man and give yourself a break. You deserve it!

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.

Re: Needing to vent

Thanks Lainy!

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

And Pamela and Darla! smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Here is the findings.  What I am confused about too is the last scan on my last report said it shrunk from 17cm to 14cm.  I will be calling my doc tom morning just to clarify but feel free to give my any input. smile

"There is redemonstration of a large mass involving the anterior right and
medial left hepatic lobes that exhibits early predominately peripheral
enhancement with increasing central enhancement on the more delayed phases
measuring 12.0 x 11.0 cm, previously measured at 11.0 x 13.0 cm (image 22
series 15). Two unchanged 1.2 and 1.4-cm segment 5 satellite lesions are noted
(images 62 and 59 series 12, respectively). No new lesions are present. An
unchanged segment 5 hemangioma is present. There is no intrahepatic biliary
ductal dilatation."

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Porter -
Stable is one of the better words we hear on here. And it to me looks like a little bit of shrinkage which is even better.
Not to worry about venting. We all do here from time to time since this is such an up and down disease. Everyone has been 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.

Re: Needing to vent

I agree a call to the doctor is in order.  I'm no expert and don't really understand all this technical stuff, but it sounds promising to me and  as Lainy mentioned, stable is good.  Hang in there.  I'm hoping you will get the answers you are looking for from your doc tomorrow.
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Needing to vent

I guess i get confused as to why the numbers are always so inconsistent.  Like my last scan said 17 to 14.  and this one is say 13 to 12.  So I guess that is one of my biggest questions... KrisV, my trip to Seattle was great and I really enjoyed the ONC I saw up at the center.  I wish I could switch honestly. smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Porter, it's been my experience that scan results are often confusing. But, either way, it say shrinkage to me! And that's great! And, yes, you want to attack with chemo, but these drugs also attack good cells, so just be patient and let yourself heal between treatments. And Lainy is right in saying chemo continues to work between treatments. Call your onc for clarification on the readings, and PLEASE allow yourself to let go of some of the worry while you are on your trip.
And happy birthday to your son!!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Needing to vent

Porter -
Glad you were happy up here. It's too bad it's such a long drive for you...especially with the weather the way it is. The last time we drove up there it was snowing and terrible conditions. Not supposed to be much better this Friday.
I am not sure why it would be like that. The number should be more consistent. If it went from 17 to 14 then it goes from from 13 to 12. I wonder if is's different eyes measuring. I know when we are doing wound care sometimes it seems to change based on how you look at it. Hmm, be interesting to hear what he says.
We had the choice to go north to Seattle or south to Portland since we are about halfway. We went with Seattle since the docs we were too see there seemed more experienced.
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.

Re: Needing to vent

Yes and good choice you made.  They are much more familiar and have much more experience with this than they do down here at OHSU.  That being said, I am happy with OHSU as well. smile

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

As long as you are happy that is what is the best. And I do have to say that we really didn't make any kind of decision until after his surgery when we started looking at oncology. The surgery piece of it we were both so stunned that we couldn't even think to ask for other opinions. We just went where we were pointed. Got very lucky.

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.

Re: Needing to vent

Yes that is wonderful news.  Dr Harris up there wants me to come back in January to have a second surgical consult with one of his surgeons.  I've only heard from one at OHSU that I am not a candidate so I will be back up sometime in January..

Hope, love, strength...2013 and for the years to come, Porter.

Re: Needing to vent

Hi Porter,

I am by no means an expert on scans so speaking from experience of being my Dad's advocate. 

From my understanding, scans are generally 2-dimensional whereas tumors are 3-dimensional, so depending on which angle the radiologist is looking from, the measurement of the tumor(s) can differ even if the tumor's size did not necessarily change. 

Also, different radiologists looking at the same scan could also spot differences, one radiologist told me that sometimes, looking at scans is not just a science, but also a bit of an art (in which case experience does matter).

I would absolutely recommend you talk to the doctor about your question on the scans, but more likely than not, the radiologist would be able to give you a more clear answer than the oncologist.  Hope this helps.

Julie