Topic: sick Mom still undiagnosed

Hi all
I've been observing and reading this forum the past couple of weeks and see such tremendous value in all that this forum does and that which other people provide.

Background-
Mom- 64yo- had a lot of stomach pain and constipation starting a few months ago (june 08). she went in for scans which didnt really show any obstructions. she continued working and even taking a cruise with my dad to alaska- though she was uncomfortable throughout she did not want to miss it. upon her return she went in for further tests and while her blood work was fine they found a few spots on her liver and very small spot on the lung. they did a biopsy and were unable to differentiate and define the source; they proceeded to believe it was metastatic breast cancer as she had non-metastatic BC 2x in the past. However, prior to beginning treatment she began to exhibit other symptoms- jaundice, itching, etc.. that typically presents itself with CC or bile duct cancer. Still not having a full diagnosis- they tried an ERCP to input a stent to alleviate a blockage in her bile ducts and duodenum but were unsuccessful so they resorted to a PCT the next day (on wed 8/27) and she now has an external bag to drain the bile. She is still yellow but the color is diminishing and she is not as itchy. On fri she went in for a follow up and blood work and found that in addition to her diabetes (existing condition prior to cancer which has now become exacerbated) she is also anemic.  The anemia is taking a big toll as she is very very weak and barely able to get out of bed and also loses her appetite. Today she is starting chemo (gemcitabine and taxotere i believe) at Columbia (where she's been treated b/4 and where her doctors are) and she will also be getting an iron boost weekly. Throughout all this she experiences intermittent shooting back pain and nauseau (threw up last night). Since this all started she's lost 25lbs (she was slightly overweight before).
We are interested in getting a second opinion, likely from Sloan kettering, but it's more important to stop delaying this whole process- it's been a few months now since she started feeling all this and is only starting treatment today! they ruled out surgery and figure chemo is the way to go.


My dad, recently retired, has been a godsend- catering to her every beck and call. I live roughly 20 minutes from my parents so i've been able to go home on weekends to help out where i can. i try to speak to her at least 2x a day.
I've been really affected by all this- it's very tough to cope. i see the stats and prognoses and i know it's not good. i constantly have dire thoughts that make me tear up even at work. I try to stay positive but i find it really difficult- especially when i can sense that my mom doesn't feel good- sometimes her mood on the phone is chipper and then i find i'm feeling a little better; but sometimes, like today, she could barely talk and handed the phone to my dad- from whom i've found out that she was not feeling well last night. i really don't know how to deal with all this- i'm constantly sad about the future. i've told my girlfriend and am considering mentioning it to a few more very close friends, but even so i'm not sure what i can do.

Any advise, support and words of encouragement will be very helpful.
thanks,

sad son

Re: sick Mom still undiagnosed

Very sorry to hear this mate... think the best thing to do is to try and stay as positive as possible. Is your mum eating much? I know my mum found it very difficult to cope with my dad when he started refusing food because of the sickness...

If your mum has had other types of cancer before i would seriously try to find out whether they think it is a primary cancer in the liver/ducting or whether it is something that has metastasized from elsewhere.

Also take the opportunity to do a full review with your mum about her family history and relatives as this may give some clue as to whether it is a familial cancerous sydrome of some sort...worth investigating and a good  medic will thank you for your efforts.

It must be really tough for you...sounds like you live a way away from your mum (which doesn't help does it). Keep your chin up!!

Re: sick Mom still undiagnosed

Unfortunately I welcome you to our elite club! This is for you...everyone reacts differently to these situations. When my husband was diagnosed 3 years ago with bile duct cancer I found the more I talked the better I felt. Talk, talk , talk.
I also keep a list of people that I update weekly on his progress and what ever may be gong on in the way of treatment.  This site has been a godsend. A lot of good, knowing people who have been there done that. It may sound weird 
but as time goes by you adjust a little bit more to the diagnosis. No time though  can erase watching a loved one go through this. You just need to be as strong as you can in front of your mother then just let go if you want away from her. When I go out alone, like to the store I give myself  a couple of screams in the car. I am sure others think I am singing!! Most of all your dad is really going to need all the support and help he can get. Your family will be in our prayers and please keep us posted. P.S. A 2nd opinions is always the way to go.

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: sick Mom still undiagnosed

Dear sad son

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: sick Mom still undiagnosed

Hello,

I am so sorry to hear about your Mom. I am relatively new to this board. My husband who was 62 was perfectly healthy until around the middle of July. He died on 9/02/08. His journey with this horrible disease was short. Many are longer. I am now trying to deal with the loss & the great void it has left in my life. I understand your frustration. He was not definitively diagnosed until 1 week before he passed. The following is information that was given to me by a 2nd year med student. Unfortunately I received it the day he passed away. It is not something that is easy to read or accept, however, I wish I had know all of this to better understand what was going on with my husband. Every thing stated is exactly what he was going through.


>> cholangiocarcinoma is a cancer of the bile ducts- vessels that drain
>> bile into and out of the liver.  it is a weird tumor in that it is
>> very silent until it is large enough to impede on other organs around
>> it (ie. liver, gallbladder, pancrease, etc).   by the time it
>> manifests itself in symptoms such as turning yellow, abdominal pain,
>> itching, vomting, nausea, and things like that, it is often spread to
>> a point where it is not able to be resectable by sugery, which is the
>> only definitive cure.  thus, a lot of the management is by palliative
>> measures and pain management because of the late diagnosis.
>>
>> there is a higher prevalence in asia due to some kind of endemic
>> chronic infection associated with liver flukes.  other risks factors
>> include chronic hepatitis, HIV and ulcerative colitis (a form of IBS).
>> it is hard to pinpoint any one of these down because many people with
>> the above don't develop the cancer.  the fact that he had a parasitic
>> infection may have contributed to the development of the cancer, but i
>> would not say that it is the sole cause.  the majority of people
>> diagnosed with cholangiocarcinoma have no known risk factors.
>>
>> as a family, i would make sure he is in sufficient pain control- if
>> this means very high doses of pain meds, that is ok.  if he is still
>> lucid, he will eventually want to stop eating and stop drinking
>> fluids- this is alarming because it is against our thoughts that food
>> = comfort but this is normal and very characteristic of the final
>> stages of death.  hydrate the mouth with small ice chips if he cannot
>> drink fluids.  in the last days, he may spike a fever.  this is also
>> normal.  there may be secretions in the mouth that towards the end
>> will accumulate because the swallowing reflex is diminished and this
>> will make a rattling noise.  these secretions can be sucked out of the
>> mouth if necessary.
>>
>> i know this is all hard to hear but i wanted to write it out in case
>> the doctors didn't say anything about what to expect.

Try to be strong for your Mom. As time passes maybe knowing all of this will better help you to cope with what she is going through. Just be there for her & the rest of the family & make the most of the time you have with her. As you read more on these boards you will see that everyone's story & illness progresses differently. All the information you receive on this site willl be helpful to you as we have all been there or are dealing with this horrible cancer now. There is always hope. I only wish I'd had more time with my husband, but I know he is now in a better place & is no longer suffering. God Bless You. You, your Mom & your family are in my prayers. Stay strong. Please let us know how things are going. There are a lot of good people here & we are all here to listen, help & support you & your family.

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: sick Mom still undiagnosed

Sad Son

So sorry to hear your mom has this terrible disease.  My stepdad has it and yes a second, third or however many opinions it takes is so very important.  If we hadn't gone for a second opinion my stepdad would have passed 2 years ago.  Even after that in June after we were told to let nature run it's course we still didn't stop.  We went back to his surgeon who did his liver resection and he said absolutely we can do something.  It is not going to cure him but it will at least give him more time with us and most importantly help with pain.  I lost my dad, grandmother, father n'law and sister n'law to cancer and you have to consistently search for new and better treatments as there are people out there who have dedicated their lives basically to finding help for people.  I think the main thing is knowing for sure what is wrong and that you did everything that medicine can do and then the rest is up to only one person.  Hang in there!!


SherriG

Re: sick Mom still undiagnosed

Thanks everyone for responding, it truly does help.

They have been able to diagnose her; with near certainty it's cholangiocarcinoma.
Her treatment went ok on wed and she was feeling very good until the day after the treatment when the steroids began to wear off- that's when the nausea set in. she's been scheduled for her next treatment this fri (9/12) and then she'll have a week off.
I was able to spend a lot of quality time with my mother over the weekend: when i got to the house fri evening she was very weak - and had not been eating nor drinking for almost two days. as a healthy person it's not easy to understand why she can't even drink, even if she has nausea. (apparently the previous time she vomited everyone  blames on bad food with poor timing given all that is going on).  being that she's a nurse she was aware enough that she was at the point where things needed to improve and instructed my father and me to take her to the ER. She was severely dehydrated and her bloods were way off (high potassium, high white blood count). They admitted her and began to immediately hydrate her w/ saline via IV and started her on various antibiotics (thinking there may be an infection causing the WBC to be elevated). on Saturday i went to visit her and she had improved tremendously- much more life in her face. she was improving the rest of sat and onto sunday too- requesting a more solid diet that the hospital was giving her and even drinking on her own (where before she couldn't even have more than a sip of liquid!), she also was interested in being able to sit up more and maybe move around a little. her blood work however was not improving as we all hoped- her RBC's were slowly decreasing with every test even though her WBC's were getting better. so they were monitoring her and even reduced the rate of the saline drip (thinking her counts may be off b/c of dilution or overhydration). it seems that she was still very weak even till this morning and they were planning on doing a transfusion to increase her strength and RBC's. as of last night she was disappointed and frustrated, maybe even depressed that she wasn't better yet but was able to relent in getting the transfusion today.

I'm back at work and it's really tough; i'd so rather just disregard it and be with her. I speak to her a few times a day but there are many times i just feel myself breaking down on the inside: any time i can tell her voice isn't as chipper or just indirectly from hearing people talk about they're moms on tv, etc. conversely when her voice is more positive and up or i see that she's feeling better i'm also in a much better mood.  Being at home was helpful for me as i felt that i was able to contribute- even if it meant just tidying the house seeing as my father is preoccupied caring for my mother. it was also good for me to see my mother, even if it was in the hospital.
Either way i know this forum fills a certain void of mine and even without responses i feel it helps to write it out and update everyone on the goings on.

Thanks and be well,

Sad Son

Re: sick Mom still undiagnosed

You sound like the most wonderful son and you are doing all you can just by showing the support you have shown. We learn in time to be very strong and to not let down in front of our loved ones.  I work part time and have found that is the best thing as then I can recondition and face what I have to face.
I have to say to all on this site I found a great diversion. My daughter gave me the sound track from the Broadway play Mamma Mia! As soon as I get in the car I put it on. Such wonderful happy music and I have found it to be a great way of soothing my brain for awhile. Sorry, I digressed. As we say, stay strong
and know that there is not much more you can do except what you are doing.
Unfortunately with CC the day one is diagnosed is the day it is taken out of our hands. Just show lots of love!!!

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: sick Mom still undiagnosed

I agree with all of the above. Music didn't change anything but helped me so I could go back & be strong for my husband. Just be there for your Mom & the rest of the family. You are doing all you can do. It truly is out of your hands.

"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: sick Mom still undiagnosed

Sad son,

If you haven't already done so, you should definitely tell your close friends, many people do not know how to react to such news but there will be those who instinctively know how to make you feel better and you need them.

This disease progresses so quickly that at one point I realized that, while the friends I had growing up knew my Mom was sick because they also knew her well, many of my other friends still did not know and, honestly, I knew that they would not want to get a phone call from me telling them that my Mom died when they didn't even know she was sick.

I ended up sending out an e-mail to those friends telling them she was very ill and I asked them to pray for her because she did not seem to be rebounding from the surgery and the doctor had said she was too weak for any further treatment, that she could not do anything for her in her condition. Everyone responded within hours and all thanked me for telling them. They must have been powerful prayers because my Mom did perk up. Many also made it a point to follow up with me over the next few weeks to see how she and I were doing.

Being fully present at work at a time like this is very difficult, have you told your supervisor your situation? I asked my supervisor how much sick time I was allowed to use to care for a sick relative so that clued her in to how serious it was and, in the end, I was allowed to take quite a bit of sick time and I also took vacation time to spend with her.

I would also try and find something that brings her joy that is not food related and use it as therapy. Many on this board have used music therapy, I work at a library and got a bunch of opera CDs for my Mom. Or perhaps you can read to her. Touch is also important, massage was very comforting to my mother and she had never had a professional massage in her life. If she enjoys watching movies, you can try and find some she would appreciate and watch them with her. Pull out old photo albums and go through them with her.

Patty