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(14 replies, posted in General Discussion)

Dianne-

I dot not have CC, my mother did.  However, I can relate in this topic odly because I too took Reglan.  When I had my daughter I for some reason quick producing breastmilk and the doctor prescribed me Reglan.  It was supposed to help increase breastmilk.  So very odd, I know.  However, I took it for 2 weeks hoping my system would adjust and it would work.  I was absolutley miserable, with diziness, blurry vision, nausea and just yucky.  It was so bad, I could sit 5 feet from the tv and couldn't make out what was on.  I couldn't drive and just felt completely out of it.  I did quit taking it and felt much better.  Not long after that was when the commercial came out that Reglan was linked to Tardive Dyskensia (not sure on spelling).  Anyway, sorry if this didn't help at all, I just know I didn't feel even close to "normal" when I took it for the short period of time.  Hope you can get the information you're looking for.

God Bless,
Ash

Hi Kristin--

I like you was young and only 25 at the time my mother was diagnosed 2 years with stage IV CC at the age of 46.  At the time she was given a year to live max...something you do not want to hear but I understand where you come from wanting to know how much time you have to enjoy and soak up every last moment and memory.  As many of said, there are several on this website who have survived this awful disease and taken to treatment very well.  Chemo effects everyone differently.  Please please know you are NOT alone through this journey.  This website has so many amazing and wonderful people that you've never met, yet you feel you can tell them anything.  Their words of encouragement and advice helped me feel comfort during many times of need.  Like some of them said, writing in a journal can help.  I know it did me.  It allowed me to "talk" to someone, mostly my mother without breaking down in front of her when I needed to be strong.  I still continue to write in and "talk" to her a year after her passing.  I'll be praying the good Lord gives you the strength and comfort you need during this difficult time.

God Bless,
Ash

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(4 replies, posted in Members' Cafe)

Thank you both for the kind words.  And Marion, I recently ordered the book "Motherless Daughters" and "Motherless Mothers" by Hope Edelman.  I have just got them in and cannot wait to read them.  They have great reviews, so I'm hoping they will help!

I have been so sick throughout this pregnancy so far as I was with my first.  However, the first time around, my momma was always there to take care of me.  I've had to put on my big girl panties this time.  She suffered so much through her treatment and this cancer, so its the least I can do to suck it up.  smile

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(4 replies, posted in Members' Cafe)

Hello All--
I have not written in a while but get on every so often to check on everyone or to see if my experiences can help.  Mom has been gone a little over a year now, and dad has moved 9 hours away.  Fortunately, my sister who will be 22 soon moved in with my husband, me, and my daughter who will be 3 soon.  She moved in shortly after my mom dad while attending college and I thought it would be good for the both of us to always have someone right there when we needed to laugh, cry or a hug.

I've been stuggling with my feelings a little lately which isn't normal for me.  Momma always taught me to look on the bright side of things and that someone somewhere else always has it worse.  Be thankful for the people and things in your life.  My husband and I have found out recently that we are expecting  baby #2 in May!!! 

There have been so many things i just want to call momma about to tell her, share with her.  We always used to talk 1-3 times a day, she would send me emails from 4am when she couldn't sleep or was just up drinking coffee.  I try so hard to be a good mother and a good wife like the example she set...and sometimes I just feel like its not good enough.  Not because my husband or daughter say so, but just because I need her encouragement, her warm hug to tell me I'm doing fine.

Since I've found out we are expecting again, all I do is cry.  I should be happy...and I am...but I cant stand that she wont be here to experience it all with me like last time.  I am blessed beyond measure with a loving husband, beautiful daughter, wonderful daddy and a best friend of a sister.

I've "dealt" with everything fairly well this long..why am I having such a hard time now? 

As always, thank you for your advice.  It amazes me to have such a wonderful group of friends.

Love,
Ash

4Neil--

My experiences were very similar with my momma.  She started to get sick back in 2001.  She always knew she had a gut feeling that something wasn't right.  After many doctors appointments and stilly rememedies to try and fix the pain she was feeling - nothing.  No one ever thought to do a ct scan except only of her brain...they thought she was crazy.  She was diagnosed stage 4 in August 2010 and died in August 2011.  She spent much of her time in the hospital also being treated as a room number, multple attempts at tube feedings, needles left in the bed, being too rough with external drains so they get ripped out, and just a waste of their time because she was dying anyway.  It is hard to describe the helpless and agry feelings when your loved one has to experience this and you just have to sit and watch.  The only comfort I find is knowing that she is pain free and dancing on the streets of gold in Heaven.  I pray that you will find peace and comfort through these times until you see Neil again.  The times when it gets hard...just know that you're not alone!  God Bless - Ashley

When my mother was diagnosed with CC we were told by the oncologists that this disease is hereditary.  I have been having off and on pain in my upper right side, feels like its under my rib cage.  It comes and goes, never severe but just reminding that something doesn't feel right.

I am hesitant to go to the doctor only because we've had our fair share of run-a-rounds.  My mother was told several times that the pain she felt was made up and she was crazy.  A CT scan was never done until it was too late and revealed the multiple masses on her liver.

I have been to the doctor about 5 times in the past year and a half due to constant sore throat and swollen lympnodes.  The doctor told me that I was depressed about my mother and thats why I was noticing it more.  Come to find out, I needed a root canal.  Seems silly but I was so upset by the doctors remarks.  He had no clue.

My question is, should I ignore this pain?  Am I maybe overreacting thinking it could be in relation to CC?  How do I approach a doctor about this without thinking I'm crazy or just paranoid.  I don't feel like I am, but because I have a 2 1/2 year old daughter who needs me, I feel like I owe it to her to get it checked out.  Just not sure who to see or where to start.

Thank you for your help and wonderful advice once again.  Y'all are always there to count on and pull me through.  This Sunday would have been mom's 48th birthday...glad her birthday and mothers day is all is one day!  Let the celebration begin!  smile

Ash

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(10 replies, posted in Introductions!)

Chrissy--

I too know how you are feeling.  I lost my sweet mother who would have been 49 on mother's day this year.  You story is pretty similar to mine.  You sound like a wonderful daughter and I'm sure your momma was a lucky woman with a good heart. I pray that the good Lord gives you peace and comfort.

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(8 replies, posted in General Discussion)

Hopeful daughter--

I have been exactly where you are, a hopeful daughter.  Life, stress, money, the feeling of drowning in everything that you have no control over can make you feel like you're in pain, lost and spinning out of control.  There are things than WE cannot control and as much as we want to fix it or find a way, the one and only thing I have found to do...is like you said...Trust in the good Lord.  He will never fail us and will give us the strength to move forward. Philippians 4:13.  You are doing your very best and although it may not seem like enough, just remember that faith and the grace of God can take you a long way.  Take some deep breaths and enjoy each and everyday! 

Ashley

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(8 replies, posted in General Discussion)

mn--my heart goes out to you and your family.  I was just in a similar situation with my momma and I know how it feels as a daughter to want the fix-all for momma with no more tears and enjoying as much as possible.  It's hard to do when they are in so much pain and you feel helpless.  My mother had upper and lower abdominal pain, especially after her liver resection in April 2011.  She was on a fentanyl patch and dilaudid for pain.  I believe they would give her morphine as needed for breakthrough pain.  She was on a routine schedule for lactulose for both her ammonia levels and to help her have a bm.  It helped a little with the ammonial levels but not much with the bm.  They would do scans of her abdomen and found nothing, do more scans and find nothing.  Couldn't figure out why she kept complaining of horrible pain.  In July 2011, she starting vomiting for 4 days straight and couldn't keep anything down.  She had a small bowel obstruction and it had COMPLETELY closed shut.  She had to have emergency surgery before it ruptured.  Have they done anymore scans or xrays of her bowels to be sure?

I am sure that you are doing your best and that's all that we can do.  Stay strong and keep us posted.

God bless,
Ash

Sissy--

I have to say when I read your post I was a littl taken back just by your name.  That is what my momma always called, she never referred to me as Ashley (unless she was upset).  smile  In regard to your question, my mother was in a similar situation.  The Gem/Cisplatin did work for her a little but not to the degree of shrinking them like they neeeded for surgery and in addition, new ones surfaced.  She started chemo in August of 2010 and had a chemoembolization treatment around February 2011.  It was our only other option at the time.  She was always in pain due to the size of her tumors so it was hard for her to tell how much was the treatment.  However, I can say that the treatment took a major toll on her body (she was only 46 at the time) and I don't think she recovered well.  They told us that it didn't work only 2 weeks after the procedure and now I'm learning that it could take a couple of months to actually know the results.  Also, the surgeon assumed that it worked because she was able to have a 70% liver resection in April 2011. Like all the others say, it varies from person to person and their situation.  Mom was in the situation that it was her only option, so she took it.  Please keep us updated on your journey.

God Bless,
Ash

Katie--

this happened to my mother.  She was in tremendous pain even before her chemoembolization treatment.  After the CE treatment it did seem to get worse.  They did scan after scan and test after test to see what it could be but nothing ever showed up.  We were told that it was because her tumors were so large, the biggest being 9cm x 9cm pressing on the other organs and then the treatment from the CE could be causing the pain as well.  She was also on Dilaudid but a PCA pump, which also didn't help.  She was also on a Fentanyl patch every 72 hours.  Unfortunatley nothing ever seemed to help the pain and they said that there was nothing else to give her.  She had a 70% liver resecetion and the pain continued, mostly under her rib cage and she had a hard time breathing like something was pressing on her lungs.  Once again, nothing showed up.

Also, we were told that my mothers stage IV CC was inoperable too.  After 6 months of chemo and one chemoembolization treatment, she had the liver resection and "supposedly" all the cancer was gone.  Our oncologist told us that it was impossible for the surgery, and the surgeon didn't agree.  Worth getting a second opinion.

I will pray for you and your family.  I know that it is tough watching your mother suffer and feeling so helpless.  Stay strong!

Ash

I wanted to update everyone on my last posting.  We received word from the doctor on Saturday, August 6, 2011 that we would be taking my mother home with hospice.  By the time the hospital got around to it, it was Tuesday afternoon on August 9th before we got her home.  She was already expieriencing hepatic encephalopathy and was for the most part unresponsive.  Tuesday evening she went through a period where she would talk for short moments, ask for some water and wanted to get up to to go the bathroom even though she had a folley in.  Tuesday evening we all went to bed, except for dad and he stayed in the room with her.  I woke up around 4:00 am and could hear hear moaning or trying to talk, I'm not sure.  Dad gave her some more morphine to help with the pain but it didn't seem to help.  I got up around 7:00 am to relieve my dad from the long night he'd had.  We've all been so exhausted trying to spend every last moment with her this past year.  There was never one moment that she was alone.  I sat there beside her, played with her hair as she had always loved.  I held her hand and told her that it was okay to go home.  She stopped moaning and making noises and just layed there breathing.  It was two short breaths at a time for a couple of mintues and then one short breath for a couple of mintues.  I will never forget the look on her face when she took her last breath, it was as though she was being lifted up, carried away.  After her last breath, she was so peaceful.  I cannot explain how much comfort I felt in such a moment of sadness.  No more hurt, no more pain and suffering, no more hospital beds.  She passed away on Wednesday, August 10, 2011 at 8:51am with her family surrounding her.  Although I've lost my best friend, mother and memaw to my 2 year old daughter, I will never forget the love and support of my CC family here.  You have all given such wonderful words of advice, shared stories and offered your hearts to a stranger.  Thank you for everything.  God Bless!

It's been awhile since I've posted and the rollercoaster ride of CC, but here I am again.  Just when we were told that there was no more cancer and a successful but slow recovery of a liver resection, it happened again.  On July 6, 2011, mom was taken to the ER and had emergency surgery due to a small bowel obstruction.  It had completely closed up.  She had been vomitting for four days and kept getting worse.  She has been in the hospital since.  We "thought" this was the reasoning for her not getting any better and this surgery would do the trick.  As of Saturday, her sugeon told us that when she was so sick and had the small bowel obstruction, it cut off the blood supply to her liver.  In return, 30% of it had died.  Her bilirubin, ammonia and all the other markers for liver function keep continuting to rise.  He said that there is necrosis and another CT scan was done today to confirm that the liver is continuing to die.  She has slept alot over the past 3 days, been in tremendous pain, even with the dilaudid PCA pump.  She talks in and out of which we are used to since her ammonia levels have been in the hundreds lately.  Dr. said that we will be going home with hospice as there is nothing else that he can do.  I have been on this website for awhile now, and read many stories of what its like at the end.  I'm so afraid so she will be in pain.  Any thoughts, advice, insight, words of encouragement would be greatly appreciated.  Everyone here on the CC website has been a tremendous support system.  Its amazing the comfort I've felt here, never meeting a single one of you. God Bless!

I have posted on here several times about my momma and her battle with CC.  It will be a year on August 3rd since she was diagnosed.  Everyone on this website has helped so much with insight and personal expieriences that I think many of you know way more than any of her doctors.  I have a couple of more questions that we cant seem to get any answers to.  Here is where we stand.  On April 14, 2011 mom was admitted to the hopital for pneumonia.  2 weeks later she had a 70% liver resection.  Right after surgery we were told by the surgeon that he removed all the tumors (1 softball size, and 2 golf ball size) as well as 3 lymph nodes.  He didn't see any other cancer but we wouldn't know for sure until the pathology reports came back.  However, we found out 3 weeks after the surgery from the surgery that he "failed to mention" that he had to leave 2 small tumors on the remaining bile duct.  He couldn't remove them without damaging the bile duct.  Now we are told that her most recent scan..almost a week ago shows NO CANCER!!!!  What in the world?  How can there be no cancer when the surgeon said he left 2 tumors behind?  Mom went home after spending 2 months in the hospital (it was a horrible experience to say the least) and after developing the VRE infection.  She went home with a pic line to administer antibiotics, 2 drainage bags (one is the stomach and one outside the abdomen) and a feeding tube.  She weighs around 100 lbs but looks like a bag of bones.  Since the surgery her ammonia levels keeping surging.  She was home a week and a half and ended back up in the hospital due to her ammonia and bilirubin levels and she was dehydrated.  She couldn't keep anything down without having the urge to throw it all back up.  They have been giving her lactulose for over 4 months to help with the ammonia levels but then she is constantly running to the bathroom and even wearing depends now since she can't get there fast enough.  To make matters worse, she has been a smoker for 30 years.  She kept saying that she was going to quit and she was excited that she was able to have the surgery..its like getting a second chance since we were originally told to go home with hospice.  However, the first day that she got home, she started smoking again.  Talk about devastated and beyond mad.  My mother is my best friend..and I can't be mad at her because she has been fighting so hard for her life, but yet she doesn't see smoking as a bad thing.  I am hurt because for the entire year, I have spent EVERY weekend driving 2 hours to my parents missing my husbands football games (hes a coach) and taking countless hours away from my 19 month old daughter to be with my mom.  I have taken off work for weeks and a time and had paychecks cut because I am out of sick/vaction time.  Im not asking for any kind of thank you or pat on the back because I know that she would do the same for us in a heratbeat. And then shes goes home to smoke, I feel cheated, mad, sad, and all of the above.  I have no idea how to balance my emotions.  If I dont go on the weekends, I feel guilty because that is time I need to spend with her in case she's not here for much longer, but I also feel like I need to spend time with husband and daughter.  What could be causing her ammonia levels to soar like they are.  We were there this past weekend and she has no memory of even coming home from the hospital.  She almost has no memory of the entire year.  When you look at her, she's just in a daze..its like she's empty.  Any advice, thoughts or similar experiences would be greatly appreciated.  It is so wonderful having "another family" to talk to.  I hope you all have a wonderful weekend.

Ash

Well, mom has been in the hospital for a month and half now.  To say the least I am floored in what our health"care" has become.  Our doctors have agreed that they dont know what they are doing.  They are not on the same page.  Today, we had a scheduled appointment with BOTH of them to sort everything out...so an hour past the appointment we are informed that they are not showing up.  We also found out that after mom's 75% liver resection, the surgeon left behind 2 tumors on her remaining bile duct.  He apologized for "failing" to mention that.  She now weighs 98 pounds and is starving to death, literally.  They are giving her tube feedings of Jevity, but they just now realized that for the FIFTH time, her tube was not in the right spot.  Therefore, she was vomitting all the jevity back up and receiving no nutrition.  They have hooked her back up to the suction tube..the jevity goes in through the feeding tube and comes right back out with the suction tube, makes a lot of sense huh?  My mother is the sweetest angel anyone could ever meet.  Not ONCE has she complained about anything since being in the hospital.  Today, when the doctor informed us that it was time to go home with hospice, that this was the end of the road she broke down and cried.  She said "I have been fighting so hard, how come that its not enough."  Helplessness is beyond how I feel.  She's not ready to give up and throw in the towel.  Her bilirubin levels are now a 30, ammonia and WBC's are soaring.  She has SEVERE abdominal pain and they can't figure out what it is, nor do they care.  In my opinion they look at her like she is a lost cause.  I never thought one could feel so many emotions at once.  She's not a quitter but we just told her, that if Jesus or the angels come to see her and are ready that its okay to go home.  Thank you all for your support and thoughts in this journey.  Its been a long road to say the least and I'm ready for momma to smile and be happy again.

Jennifer--

Since this post, mom has not been back to San Antonio.  She was admitted to the hospital for pneumonia 5 weeks ago and is still in the hospital.  When she was admitted here, her oncologist came by to see her in the hospital.  My dad brought up the treatment she was getting in SA.  The doctors there informed us that they were going to do radiation and chemo and then surgery to resect the tumors.  Needless to say, that is not what she was sent there for.  Her oncologist was livid..they (Doctors in SA) had lied to him also.  We were all told that she would be entering a "clinical trial."  That was not the case.  Her levels were all too high and she wasn't strong enough to be on the trial.  Our local oncologist at home said that mom would never survive radiation and that she would have died in San Antonio.  He left the decision up to us, but we felt very betrayed.  The oncologist called and cancelled all future appointments for mom.  I have learned through this, that you have to be an advocate for you loved one fighting this disgusting disease.  If not, the doctors will (at least in our case) will not fight for the patient either.  We didn't have a good "hopeful" experience with San Antonio in the first place..we should have known with the bad feeling not to go back.

Last time I posted I was griping about the "clinical trial" in San Antonio that my mom was supposed to be in.  Well, not only did that happen, but after my parents had traveled 9 hours to get there, they lied to them and her oncologist here at home.  She was not in the clinical trial, they were going to radiation instead.  1 month ago today was admitted to the hospital for pneumonia.  While there, the hospitilist, oncologist told us that this was the end and once she was released from there, we needed to go home with hospice.  My dad suggested that the surgeon look at the scan one more time to ensure that a liver resection wasn't possible.  Dr. Shane Holloway looked at her scans and said that he felt like he could do the surgery.  I asked him if he felt confident with that..he assured me that he even sent moms scans to friends that are also in the same field and they would have done the same.  She turns 47 tomorrow and he said that was one of the reasons for his decision.  She has too much to live for and its her only chance of hope.  He said she had a high chance of liver failure during surgery and for the week following.  Well, from that point, they put in a feeding tube to get her nutrition up, treated the pneumonia and surgery was done on April 26th.  She was in there for 8 1/2 hours..they removed 70% of her liver, 3 lymph nodes.  Dr. Holloway felt that the surgery went better than expected during the week of recovery.  However, things are falling apart.  To start off, our stay at the hospital has been horrendous.  We had a "hospitalist" get into a heated conversation about God and mom dying.  It came out of no were that we are christians and he is muslim.  Needless to say, he was quickly off the case.  Mom has starting diminishing.  She has an infection somewhere that they cant find.  Billirubin levels are now at a 14. ammonia and WBC are also high.  They haven't fed her food in 3 weeks or hooked up to the feeding tube in over a week.  She has only been allowed ice and water.  They are still giving her diuretics and amino acids.  There are so many doctors that keep taking turns, one orders something and the other one doesn't agree so they take her off.  Just like TPN, she was given that but then the surgeon took her back off of it because its too hard on the liver.  Yet, day before yesterday I went up to the hospital and she was getting it again.  Her hind end is so raw that the skin is peeling off and bleeds everywhere.  Her chest tube was removed and now she is feeling up with bile, her bag from her liver is still pouring out fluid and the bag from her abdomen is still filling up with blood.  She also has a NJE tube to suction out her stomach because it is 100% non functioning right now.  The doctors have no plan and don't know what to do with her.  Nurses have left open needles in her bed and they are taking advantage of the fact that someone from our family has been there with mom 24/7.  It takes them at least 30 minutes to come into the room when requested and you have to ASK for anything that needs to be done, including changing out her IV and pain pump.  She sleeps all day and night when she is not going to the batroom with watery diarrhea.  She is talking crazy about having a baby, looking for frogs in her bed and reaching for things that aren't there and in the meantime she pulled out her feeding tube last night that she just had replaced earlier that day.  Needless to say, I'm lost, we are all lost on what to do.  The people who you put your trust and faith in are failing us...they dont know what to do and have admitted that.  The good Lord sure has answered many prayers thus far and we have all our faith in Him.  Just not sure on what to do..mom is not living or even recovering..she is dwindling away.  Please tell me what you would do...we need to take action fast.  We are her only advocates..she doesnt even know whats going on.

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(7 replies, posted in General Discussion)

Since my last post ranting about moms trip to San Antonio, she has been admitted to the hospital with pneumonia.  Her O2 was down to 65.  This was on Thursday night.  Her oncologist came up to the ER aroung 930 pm.  He was unaware that the people in SA were going to go radiation.  He told us that she would not survive that and that we shouldn't go back.  Her side effects from the chemoembolization treamtent in January really took a toll on her body.  The doctor called dad and I out into the hallway to talk.  He said that moms billirubin level was 27 and that she was going into liver failure.  That we should go home, call hospice and spend out last moments with her because he thought she would only survive a couple of weeks.  He told us how awful it is dying of liver failure and that she would get to a point of no talking, looking around much like a coma.  She would not be able to say any goodbyes.  Later that evening, they admit her and treat her for pneumonia.  She is still there.  Her oncologist wanted to look at her scans from SA one more time to see why they were going to do radiation.  At the same time, he decided to have another surgeon here look at them to get a second opinion.  With shocking news, the surgeon who originally looked at her scans last August and couldn't do surgery now says that he can do surgery.  Only on the condition that her respiratory gets better(she has been a smoker for the past 30 years) and that she get a feeding tube put in to get some nutrition and strength built back up.  He would remove 70% of her liver and bile ducts reconnecting everything to her small intestine.  This is her option or to go home with hospice.  She has been so in and out of it with all the pain meds (at least we hope thats whats causing the hallucinating) and we had to explain the sugery 5 times.  It was awful to watch when she finally comprehended that she had to chose the risky surgery when there is a possibility that she may never survive the surgery or to go home and die.  She decided on the surgery.  I pray that the good Lord will help to get her strong and a little healthier so that she will survive the sugery and recover well.  She knows that at any point she can go home.  I wish there was a way to help not make her so scared.  I almost hate for her to do the surgery because she is so weak and so tired.  She has been fighting hard for the past 8 months.  What would you do, suggest the surgery or the other alternative.  I just want to make sure that she does this for her and what she wants.  Not what we want.  She said, "yall are my family, you are all I've got and I have lived my life for yall."  So hard to watch her go through this.  I feel selfish for crying and being upset, I can't imagine how she feels.

It is about 565 miles.

Lainy--

I'm not sure that there is any other help close by, as we were told by moms oncologist here (Amarillo)that there is nothing else he can do, same from the doctors at Baylor in Dallas.  The place is throuh the Univeristy of Texas Health and Science Center at San Antonio.  I appreciate your help.

Ashley

Well, the trip was a blow in the least.  Mom and Dad traveled to SA almost 2 weeks ago.  They got there early so that mom could get some extra rest from traveling in the car for 9 hours.  Her appt was on a Monday morning at 10:45.  They get there and the receptionist says, "what are yall doing here?" "We re-scheduled your appt."  Dad said that no one called and he verified the FOUR different phone numbers to get a hold of them, no missed call or message left.  To say the least, he was beyond mad.  Mom is in tremendous pain.  Dad is not one to make a scene or throw fits, but apparently he did.  He demanded that they drove this far, they WERE going to see a doctor and move on with the plan as scheduled.  I could make this go on for page and pages..but to make a long story short, it was chaos and a mess.  The doctors were so unorganized and didn't even know anything about her case or history.  They did an MRI and CT scan, hopefully will do PET scan soon but insurance has denied it twice.  It showed that her tumors have toubled in size.  At one point they had shrunk down 50% and now that have grown again.  They are both the size of tennis balls.  There are also some smaller ones and they did find a spot on her lungs.  They said they have no idea what it is.  They sent her back home to get stents put in tomorrow and she is jaundiced.  What does this mean?  It is getting a lot worse that we think?  They told her that if she gets the stents in and everthing goes as planned she is "scheduled" to come back to SA on April 18 to receive radiation and possible chemo.  The surgeon told her that "if" all that works out she think she can do surgery.  We are all so confused and feel like that the doctors are just pushing us around, especially mom.  I feel like their outlook is that she will die anyway, so what's another month without treatment.  So what you traveled here 9 hours and you cry because youre in so much pain, just keeping taking your meds and hope that it will get better.  I am to the point of beyond frustration with doctors and their knowledge.  I could do just as much as what they know just by researching the internet.  I apologize for the rant and LONG post.  You turn to doctors because they are supposed to know what they are talking about, they are supposed to do all that the can to save your life, make you feel comfortable and that they have faith in what they are doing also.  Apparently we just haven't found "those" doctors.

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(15 replies, posted in General Discussion)

Thank you all for your responses.  I have had the BRAC Analysis testing done last week and should know the results within 10-14 days.  I'm a little nervous even though if I do test positive for either of the gene's I know it doesn't mean that I do have cancer.  Just a little scary thinking that my daughter may be going through exactly what I am going through right now with my mom.  Its a horrible feeling.  I hope you all have a blessed day!

Ashley

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(8 replies, posted in General Discussion)

I know there is a discussion thread for this and I will post there as well but seems like this board gets more responses.  Mom is currently taking 480 mg of morphine daily not including the 15mg fast acting morphine when the pain gets unbearable.  She was wondering if there is any other type of pain medication that anyone has taken that seemed to help with the pain.  Its almost like she's getting immune to this..its not working and I hate seeing her hurt.  She is so sore from the tumors pressing on her organs as well.  We have talked to the doctor and he just up'd the dosage but still not working.  Thanks in advance for all of your help and support.  Mom is leaving on Saturday for her Phase 1 Clinical Trial in San Antonio.

Ash

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(1 replies, posted in Clinical Trials)

Has anyone done clinical trials through the University of Texas in San Antonio?  My mother will start receiving treatment on Monday 3/28/2011 and I was wondering if anyone had anything good/bad to say about their experience with the drugs/procedures and team of doctors.  We are all nervous about this experience.  Not only because of it being a "trial" but because mom will be 9 1/2 hours away from home! sad

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(15 replies, posted in General Discussion)

Kathy--

I was told by my doctor that I should have this testing done.  I have numerous family members who have had uterine, colon and breat cancer.  This BRCA testing, tests to see if you carry the gene BRCA 1 and BRCA 2.  If you do carry the gene BRCA 2, the information I received said that you are at a greater risk for developing, CC, colon, pancreatic and stomach cancer.  Because cancer is extremely high in family and the average age of diagnosis is 40.  If you have a high family history, most insurances will cover the cost ($4,000) test. 


jathy1125--I am curious on how you were able to get a liver transplant after being told that it was inoperable.  Dr's told us that mom would not receive a transplant...and now they have even ruled out surgery.  What type of treatment did you have during your clinical trial.  We should find out today what the next steps are for mom..if any.