Topic: New to Site - My Aunt

Hello everybody.  Unfortunately I have had to research this horrible cancer.  I have been looking at posts here for the last couple weeks and feel overwhelmed.  My aunt age 56 has had Leukemia for approximately five years.  It was diagnosed at stage 0 and was being monitored.  She did not need any treatment.  Approximately September of 2013 blood tests indicated that it was at stage 4 and they wanted to start a chemo pill.  They told her she could wait one more month before starting and they would do additional tests to see if it was maintaining.  In October they did additional tests and her levels were better and they held off on chemo but she was to go in for blood tests once a month.  In November the blood tests indicated that her liver levels (not sure of the term) were high but nothing to be concerned about.  She had been complaining about abdomen paid and was able to feel a lump in her stomach.  The doctors at first could not feel it when she came in to report the pain.  A few weeks later she went in the doctor and they were able to feel the lump.  Shortly after Christmas they did a biopsy and determined it was Cholangiocarcinoma Cancer.  They said the cancer is in stage 4+.  She was initially in a lot of pain but they have been able to manage that since. She is still very nauseous and so far no medicine has been able to help with this.  She eats very little and sleeps all the time.  Doctors say not to worry about not eating…I guess I think you have to eat to keep your energy up and maybe if she ate more she wouldn‘t feel so sick.  The doctors have not once mentioned that surgery is an option.  She just had her second dose of chemo last week.  And has to go in and get fluids often. 

The posts I have read encourage me that there is hope.  The doctors have given her 3-6 months (she does not know this part, she just knows she has terminal cancer stage 4+).  Of course the doctors say she could certainly be here longer then 6 moths.  Can it really go that fast?  It breaks my heart to see her.  I really think she gave up the fight to live before she was even diagnosed due to the pain and feeling so sick all the time.  The last week she tells us she hopes she will be hospitalized.  I think she feels they will be able to make her more comfortable.  I have no idea what to do for her and when I went to one of her appointments with her, it just seems like they are trying to keep her comfortable and are not fighting for her.  I am not saying the doctors are mean, they want the best for her but I just don’t see creative thinking and game plans like I expected.  Our family has not seen a scan of the cancer as of yet…the doctor she has is new to the clinic and her access was not working at the time.  I figured they could have figured out a way for the family to see what they see.  One worry is that she will become too sick from the chemo and they will then have to stop…if this happens then they said it is all about comfort until the end.  I just don’t understand that they can’t be anything after chemo….so sad!  I feel like our family is not asking the right questions and the doctors aren’t providing a lot of information.  I hear about surgery from the site but it has never been mentioned.  I look at her and feel so helpless.  I have mentioned getting a second opinion but they started her on chemo so fast and I guess we just accepted what the doctors have said.  The other day I remember seeing one of the cancer doctors and he mentioned gull bladder cancer…my aunt and I looked at each other as this was the first we had heard of this.  It seems like we are very uneducated about this cancer as when we asked more questions we were told it was in the gull bladder, liver, bile duct and lymph nodes around that area.  They also found a spot of cancer on her cheek and a couple spots on her liver but said they would not worry about that as the chemo would help it all.

I will cherish every moment I have with her while she is here.  I have two children age 7 and 10 and it is so hard to tell them what to expect and why it is so important to visit her often.  I am just glad we live so close!  Today we made her a message board and had the entire family sign it with a little personal messages.   She really liked this and I will continue to have my kids make her personal gifts!  I feel like I am kind of everywhere in this post and I apologize.  I just needed to write and it all just came out…in no particular order. 

My questions are…could it really happen so fast?  Should we just accept that there is nothing that can be done?  Anybody have suggestions about the nausea, she has had this even before chemo?    Any suggestions on what questions our family could ask the doctors? 

Thank you to everybody who posts information on this website.  There is a lot to go through and I am sure my concerns/answers are in here...but it may take me a while to find them.

God Bless and prayers to all that are suffering!
Tina

Re: New to Site - My Aunt

Wow, I'm sorry that your aunt is so sick, so quickly. She's my age, so that hits home. I think of 56 as young!  I wish I had answers for you. I think every single person's experience with this nasty disease is unique. Some, as I've discovered, don't get much time after diagnosis, but others do, despite good and bad periods.

I have a hard time accepting there is nothing that can be done, but that's me personally. My biggest question would be how much experience the doctors/hospital where she is has with this very specific and rare cancer and if it's not a lot, I'd be trying hard to get her in for a second opinion somewhere they are experienced.

Don't worry about venting. Vent away.

Lisa

Impatient patient.

Re: New to Site - My Aunt

Tina -
Well, welcome to the best little family no one really wants to be a part of. Sounds like things have happened pretty fast and you are both overwhelmed. One of the things I would encourage is to get a second opinion from a cancer center that has dealt with the CC more. And always remember that we were not born with expiration dates so there is no knowing how long any of us have.

That being said I would make a list of questions to ask the ONC the next time you go. Ask point blank about surgery. Is is an option? Could it be an option at some point? Would radiation of some sort be an option? Ask the questions, take a tape recorder so that way you don't have to write or remember everything that is said.

As far as eating and sleeping, the sleeping is typical. Her body is fighting a lot. My husband just finished his last chemo and he naps almost all the time when he is not a work. As for what she eats, just make sure the calories she consumes are good calories, try to limit junk food. Protein shakes are great - frozen fruit, couple of scoops of ice cream/frozen yogurt, some plain vanilla yogurt then add milk and blend until milkshake thickness. You can also add protein powder bought a nutrition store. Ensure, Carnation Instant Breakfast those work too.

Good luck, Keep us posted and know you are both in our thoughts.

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: New to Site - My Aunt

Tina, welcome to our remarkable family but sorry you had to find us. I agree with the comments above about getting a second opinion and ASAP. I just have this feeling that where your Aunt is, the are not used to this Cancer. You not only need answers you need to ask what the chemo is going to do for her. If it is only going to buy her a short time she may opt for no chemo and have quality instead of quantity. If you feel she is getting worse ask the ONC about Home Hospice. They are wonderful and will keep her very comfortable then she can stay home instead of the hospital. Is anyone helping you work with the Doctors? I am so sorry but something here does not sound right. I would ask them if they have treated much CC before. We are here for you, you are not alone. We have had members who were stage IV with Mets like your Aunt has and through the proper care the tumors have shrunk. Please keep us posted and we will help you through as much as we can.

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: New to Site - My Aunt

Tina...I too would like to welcome you to our site.  My first and foremost concern is the vomiting you describe.  Is your Aunt able to hold down anything including water?  Do you know whether the vomiting is related to her Chemotherapy treatments? What type of chemotherapy is she taking? 
Who is tending to her? Sorry for the multiple questions?
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

Re: New to Site - My Aunt

Thank you all so much for taking the time to read and respond to my posting!  Kris congratulations to your husband on his last chemo!

Marion - She started vomiting and spitting up what she drinks since before her diagnosis.  The first dose of chemo she did not seem to have any side effects. She received her second dose of chemo last Wednesday and Friday after getting a bag of fluids, she has been getting sick since.  She is blaming it on the fluids but I thought it may also be the chemo reaction that was delayed.  She only eats very minimal…like last Monday she had a banana.  She cannot keep down water all the time either…hopefully when she gets sick she doesn’t lose it all.  From the list of drugs I had them print out for me, I believe the chemo she is on is Gemzar 2000mg and Cisplatin 50mg.  She is being treated in Cedar Rapids, IA by PCI (Physicians Clinic of Iowa). 

Lainy - I will have to bring up hospice some how.  We all work including her husband so she is home during the day when she does not have her appointments by herself.  Her not knowing what the doctors feel will be the time she has left, it may be hard to bring this up at this time.  But I think this would be great to have a nurse come and make sure she is comfortable.  I thought when hospice becomes involved the treatments stop…it may be hard for me to swallow this but it may just be what she wants.

Lisa & Lainy - I will definitely be talking to her about a second opinion, I think a great option for a second opinion would be the University of Iowa Hospital, they are only 20 minutes away.  When she was first diagnosed we did ask PCI where she is being treated if they have dealt with this cancer before and they said yes. I did not ask how many cases.  When we asked if we should get a second opinion, they said it was not needed.  I feel they should encourage us to get a second opinion, this is a life not a car or appliance at home.

I really enjoy reading your posts and appreciate the time you have given to me already!  Take care and have a good evening!

Tina

Re: New to Site - My Aunt

I wanted to make a correction to my initial post as well: They also found a spot of cancer on her cheek and a couple spots on her liver but said they would not worry about that as the chemo would help it all.

Should say They also found a spot of cancer on her cheek and a couple spots on her LUNG but said they would not worry about that as the chemo would help it all. 

There was no tests besides the scan to know if what they seen on the cheek and lung was cancer.

Thanks!
Tina

Re: New to Site - My Aunt

Tina, you are already very wise. Absolutely, the hospital/ONC should encourage a 2nd opinion. That to me is a red flag. None of us know but your Aunt's time may NOT be limited. Usually a good Doctor will have no problem with another opinion on such a rare Cancer. I just Googled the clinic and they mention a lot of Cancers that they treat but NOT CC. Not that, that means they don't but in my gut I put that together with them saying you don't need another opinion and it sounds like the typical Cancer Centers that do not really treat CC. We always recommend the BIG Hospitals.

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.

9 (edited by LisaS Mon, 27 Jan 2014 22:01:42)

Re: New to Site - My Aunt

Wow, I was having trouble keeping things down early on and it wasn't normal nausea. I could drink water and then throw it up quickly. It turned out my tumor was squeezing my duodenum and that and a plump lymph node were keeping me from getting any nutrition, causing the nausea and making me feel really, really sick. I thought I was dying. Fortunately, I am being treated at a large hospital that treats a lot of cholangio patients and figured it out really quickly. I had a surgical procedure called a gastrojujenostomy (gastro j) which is what, in essence, they do for gastric bypass patients. It re-routed my stomach around the blockage and saved me (for now), allowing me to get to chemo and work on attacking the cancer. So, something to ask about. I've written about it on my personal thread here and on a thread in the general discussion. You can search my posts by my name if you want.

Hope they can figure it out.

Lisa


Ps, my doctors not only encouraged me to get a second opinion, they said they'd help me get one wherever I wanted. I disagree with their saying one isn't necessary.

Impatient patient.

Re: New to Site - My Aunt

Thank you all for the information.  I will be writting down the feedback into questions for the doctors.  And I will ask about the voimiting too!  I made an appointment for my aunt on Monday for a second opinion at the University of Iowa.  Can't wait to hear what they opinion is.  I feel excited for some reason, guess I am just hopeful.  smile  I will let you all know what we find on Monday!

Lisa - I will be looking at your posts about your experience!

Take care everybody!
Tina

Re: New to Site - My Aunt

Tina,

You have gotten a lot of good advice here and I think you are on the right path.  The second opinion is a good step in the right direction.  Good luck on Monday.  Looking forward to hearing how it went and what you learn.  Wishing your aunt the best.

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: New to Site - My Aunt

Good evening,

Thought I would send a short update from my Aunt's second opinion today with the University of Iowa.  They agreed that there is not much that can be done for her.  They also said the chemo she was receiving would be what they would have done as well.  They stated the cancer is in both lobes of the liver and my Mom thought they said on the inside and outside of the bile...not sure if that makes sense to anybody.  This weekend was rough for her, nothing would stay down, not even a little.  She has lost 20 lbs in a little over a week.  They gave her two choices, either be admitted to the hospital at the University of Iowa Hospitals or be admitted to St. Lukes in Cedar Rapids.  She choose to be admitted to University of Iowa.  She is dehydrated so they will be giving her fluids.  They are going to run tests to see if there is a blockage causing her not to keep solids/liquid down and also her stomach is full of liquids so they are going to see what that is about and said they may need to drain the fluid.  (I have no idea about this fluid in her stomach area...they moved her stomach and my Mom said you could hear the fluid in there.)  My Mom said she seemed relived to be admitted...as I mentioned in an earlier post she said how she wanted to be admitted.  The University's concern at this time is getting her more comfortable and figuring out the fluids in the belly and if there is a blockage.

Lisa, thank you for letting me know about your experience.  My Mom brought up the blockage right away...and they expressed concern that she may have one.  I feel this is a great place to start and at least figure out what is goiong on vs just giving more meds that are not helping her feel better.

So not as short as I thought...I will post again once the testing is done.  You all are so awesome and I pray for each person and family that is going through cancer!

Good night!
Tina

Re: New to Site - My Aunt

Tina -
Sounds like you have a good plan of attack there and you are a wonderful advocate for you aunt.

As for the fluid in her stomach....it is most likely ascites which is fluid build up in the abdomen but not inside any organ such as the stomach or intestines. They drain it fairly easily and they can put a permanent drain in if it needs to be drained often. The ascites is from the blood not flowing correctly though the liver due to the liver not functioning as well as it should. It backs up in the veins and the clear part of the blood leaks out into the stomach. Sounds worse that it is for the most part. It does often make noise when it sloshes around.

As for the cancer it sounds like maybe both lobes of the lover and inside/outside the bile ducts which means that the tumors are actually in side the bile ducts causing blockages. I wonder if there has been any talk of stents or a biliary drain (this is a tube placed to drain the bile to the outside of the body) which can help relieve the pressure on the liver. It may be a question to ask.

Good luck and keep us posted.
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: New to Site - My Aunt

Hi Tina and welcome to the site. I was going to agree with others and say head for that second opinion and it looks like you have started down that path. Hugs and blessings to you all on her fight and journey ahead.

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

Re: New to Site - My Aunt

Gosh, I feel so certain she has a blockage.  Other than the fluids, this sounds exactly like what I went through.  Are they doing a cholangiogram?  I think that is what it is called. 

http://en.wikipedia.org/wiki/Cholangiography

I had the percutaneous transhepatic cholangiogram, which is where they fixed by blockage by inserting the bile drains.

Sending good throughts and prayers for her.

Lisa

Impatient patient.

Re: New to Site - My Aunt

It has been a while.  I hope everybody is doing good!

A lot has changed.  She did not have a blockage.  Long story short, chemo did not work, the cancer was still growing aggressively.  She has stopped chemo and once she did she started having a lot of pain again.  Hospice has been brought in and now it is just keeping her comfortable during these last weeks we will have with her.  She started taking pain medications with morphine this week and she is completely out of it.  Her eyes are not steady and she slurs her words.  She is already so weak that she cannot get up on her own, she tried walking to the bathroom with assistance yesterday and her legs gave out.  She told the doctor one thing she wanted was more time.  She said one thing she wanted to do was go camping.  Since she has declined so quickly I do not feel this will happen. 

I enjoyed learning about many of your experiences!  I continue to pray for each of you during your or your loved one's battle.  Hopefully there will be a cure soon!

Love,
Tina

Re: New to Site - My Aunt

Tina I am so sorry about the latest on your Aunt. You can ask Hospice for a Hospital bed, commode to keep next to the bed, Walker, wheel chair and oxygen. I found toward the end the oxygen helped keep my husband calm thereby  helping the pain. This is not an easy journey. Try to have the family showing and telling of their love. She deserves the rest after all she has been through. Be strong and best of luck.

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: New to Site - My Aunt

Truby....I am so sorry to hear that this disease has progressed.  My heart goes out to you and your family.  It is possible that the pain medication needs to be adjusted; don't hesitate from mentioning it.  Keeping the patient lucid while simultaneously addressing the pain is somewhat of an art, but it can be done. 
Hugs and love,
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

Re: New to Site - My Aunt

Hi Truby,

I am sorry to read how quickly this disease has progressed for your Aunt. 

Marion is right - it can take a bit of tweaking but pain and other symptoms such as agitation and nausea can and should be controlled.  There is no reason for her to suffer in any way.   My sister died only 5 months after being diagnosed - she was 41 and we cared for her at home.  Take strength from each other and here.

Much love x

Clare

In the stars now . . . .

Re: New to Site - My Aunt

Tina, 

Sorry to hear that things have progressed as they have.    Most important right now is to keep her as comfortable and pain free as possible.  My thoughts are with you.

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: New to Site - My Aunt

My aunt is dancing with angels. She passed away last night. It is so hard and sad but I am truly thankful that she did not have to suffer for long. The entire family was with her yesterday. I had read that many times loved ones will wait to pass until family has left so I shared this with my family. Since we had been with her all day we said our good byes and decided to go home. Everybody had left by 8:04 and she took her last breathe at 8:12 in her home thanks to Hospice. My Mom's friend said that was her last gift to us....waiting to go until we left. I do truly appreciate her gift! She will forever be missed and in our hearts! I hope they find a cure soon!!!

Keeping everybody that has been touched with this cancer in any way in my prayers always!

With love,
Tina

Re: New to Site - My Aunt

Dear Truby,

I am so sorry that your aunt has passed but I understand your relief that she did not have to suffer any longer. 

You have been a great support for your family and Aunt.

X

Clare

In the stars now . . . .

Re: New to Site - My Aunt

I am so sorry to hear about your Aunt. You and your family must have been a great joy to her.  My sincere condolences to you and your family.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: New to Site - My Aunt

Dear Tina,

I am so sorry to hear of the passing of your aunt, please accept my sincere condolences. I too am glad to hear that she did not suffer for long and she is in pain no more. We are all here for you and having lost my dad to this cancer I know the pain that you feel right now. My thoughts are with you and your family right now.

Hugs,

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.