Friend with PC and liver mets

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Hello all,

I posted about a week ago, and then when the forums had a glitch, my message disappeared into cyberspace. No matter...

I have joined this forum because I am caring for my friend who was diagnosed with PC with liver mets on August 7. Her CA 19.9 was over 23,000. She has her appointment with the oncologist tomorrow (trust me, we were all trying to get it brought forward), and so hopefully they can do something then.

She is very very very tired, with some pain. The pain is managed with a combination of slow release painkillers and 'top up' painkillers. She has started trying high potency aged garlic for energy levels - has anyone tried that? She has a theory (just from the feeling within herself and not from anything she has been told or read) that her blood just isn't right at the moment, and I think is hoping that she will be given a blood transfusion when she sees the doctor tomorrow - anyone heard anything about this?

Also, we are also looking into glyconutrients - has anyone tried these or heard anything about them? I am Helen's 'campaign manager', so I'm looking at all suggestions and opportunities...

I'd appreciate hearing of your experiences... Helen and I both understand that a cure or even long term survival is a million to one, but Helen is a one in a million, so that makes sense to my simple brain... Helen will deal with any other reality with dignity and grace if that time comes...

Take care everyone, and I am sending out very good wishes to you all.
Mandy
Brisbane, Australia.

LOVE4MOMMA · Regular Joined: 22 Jul 2008 Posts: 45 Location: Kentucky

Hi Mandy,
My mom was diagnosed on June 20th, 2008 with Pancreatic cancer with liver mets as well and her CA19-9 is 42,000. She also is verrrrry tired and has pain which is being controlled the same way as your friend. Mom is also taking herbs (HFL-Herbs For Life) and this juice called MonaVie (Monavie and its main ingredient the Acai Berry from Brazil, has one of the highest levels of anti-oxidants you can put in your body). We learned about both of these from word of mouth from people who were taking these. I think it helps. They check moms blood counts before they give her chemo, and they have always been very good. Mom believes that the herbs and juice have helped her immune system and kept her blood counts good. She can tell she doesn't have as much energy if she forgets to take the herbs and juice.

I haven't heard anything about blood transfusions with this.

Garlic is always very good for you (and tastes wonderful)!! I've not heard of the high potency aged garlic.

I will keep you and your friend in my prayers.
_________________
Crystal
I love my momma!!

http://www.carepages.com/carepages/Cynthia

nee66 · New User Joined: 07 Sep 2008 Posts: 5

hi there my dad has been diagnosed with pancreatic cancer with mets to the liver also, whilst he will be starting chemo soon i have started him on milk thistle tablets, you might want to try these, but ask your oncologist first as some natural therapies dont go well with western medicine, good luck

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Just an update on Helen... After we saw her oncologist, he put her into hospital to put her on steroids to get her energy levels and apetite back on track. They put her into hospital because the diabetes that started recently (probably as a result of the early cancer) was likely to become unstable due to the steroids.

Anyhow, they also gave her a blood transfusion (she was right after all!) because of her low iron levels. She came out last week and had her first round of gemcitabine chemo today. Since she got out of hospital, she has been mostly good with some very bad days... She is very tired, and has back and upper tummy pain, that is mostly controlled well with pain meds.

Anyhow, that is how things are travelling... we are taking a day at a time, but Helen still has those moments where she get very distraught... of course. I don't have anything to say to make her feel better except that it is crap and not fair... and that we love her. What is there to say? I want Helen to be one of the miracle success stories, but I also don't want to pump her full of false hopes or make ridiculous demands on her to 'think positive' like it is a mind over matter kind of thing...

Anyhow, thanks for letting me vent. I'm thinking of you all.
Mandy

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Hi All,

Another update... Helen took a turn for the worse on Saturday - in a lot of pain. I will never forget it. We called the ambulance and took her up to the hospital who got her pain under control. They put in a grasby morphine pump and put her on IV fluids. Her calcium was very low and electrolytes were out of whack.

Anyhow, on Sunday we thought we were going to lose her... She was unresponsive all day, did not wake at all except when the doctor tried hard to rouse her. She did not eat and looked extremely ill.

Miraculously she rallied incredibly on Monday... I couldn't believe it. I walked in to her room, and she is sitting up asking for something to eat! I had a grin from ear to ear.

She was also very jaundiced, and they did an ultrasound to see if they could consider a stent. They couldn't even find the bile duct on ultrasound, so she is now on symptom control to keep her comfortable.

Her pain medication is being increased gradually... The palliative care team at the hospital tell us that they don't expect she will go home. Helen is the most popular person at that hospital I think, and the nurses have become very strict on visitor numbers and length of stay. There is someone with her every minute of the day, just sitting quietly so she can rest, but being there if she needs a sip of water.

She sleeps most of the time, but for the brief times that she is awake, she is very alert. She is coming to terms with the reality that she is dying, but still can't believe it. None of us can. It isn't right or fair.

We are taking one day at a time, but the most important thing to me is that she will never again have the sort of pain that she had last Saturday - nobody should ever have to go through that.

I'll let you know how we get on.

All the best to everyone,
Mandy

LOVE4MOMMA · Regular Joined: 22 Jul 2008 Posts: 45 Location: Kentucky

Mandy,
My mom had some relief after they put her stent in. They do an ERCP to place the stent. She just had it replaced today. Are they not going to place a stent in the bile duct?
_________________
Crystal
I love my momma!!

http://www.carepages.com/carepages/Cynthia

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Hi Crystal,

They looked for the bile duct on ultrasound, and it was so covered by tumours that they couldn't even see it...

This is a terrible disease.
Mandy

LOVE4MOMMA · Regular Joined: 22 Jul 2008 Posts: 45 Location: Kentucky

I'm so sorry. I will keep you and your friend in my prayers.
_________________
Crystal
I love my momma!!

http://www.carepages.com/carepages/Cynthia

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Hello all,

Helen has had a miraculous turnaround. She is so much improved that they are talking about sending her home from hospital for a while. The doctor had told me last week that it was very unlikely that she would go home again, so this is brilliant news!

She still sleeps much of the time and is on a morphine pump, but when she is awake she is very alert, and she can get to the bathroom often by herself, but otherwise with just a little bit of help.

We are starting to make preparations to get her home, and I hope that it happens now - it would be a real blow to have that hope and then have it taken away... Again, one day at a time...

Best wishes to everyone else dealing with PC.
Mandy

Queensland Girl

Hello Mandy,

We found the staff at the Holy Spirit Hospital to be very understanding. They are attached to the Prince Charles Hospital and the palliative care team are the best.

I do hope your friend can recover enough to enjoy her remaining time and not be in hospital.

My Mum died at home in the warmth and safety of her family. This is what she wanted. My Dad died in hospital which is not where he wanted to be, and I regret that I couldn't bring him home for this last wish.

This time is very difficult for everyone, however, I know that in time this will not be what you remember, only the good things and the good times.

I wish you both peace.
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

Queensland Girl

Hello Mandy,

We found the staff at the Holy Spirit Hospital to be very understanding. They are attached to the Prince Charles Hospital and the palliative care team are the best.

I do hope your friend can recover enough to enjoy her remaining time and not be in hospital.

My Mum died at home in the warmth and safety of her family. This is what she wanted. My Dad died in hospital which is not where he wanted to be, and I regret that I couldn't bring him home for this last wish.

This time is very difficult for everyone, however, I know that in time this will not be what you remember, only the good things and the good times.

I wish you both peace.
_________________
Regards,

Queensland Girl

Mum diagnosed June 1993, surgery and chemo died August 1993 (Pancreatic Cancer)
Dad diagnosed July 2007, chemo only died January 2008 (Pancreatic Cancer)

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

An update on Helen - she was in hospital for 2 and a half weeks, and sometimes we thought she might not come out again. Even the doctors and nurses felt that she would not go home...

Not Helen...

She was determined that she wanted to go home again. She lives on a farm, and so it was a mammoth task to get everything set up and the proper support put in place for her.

I went out and renovated her room - new curtains, new bedspread (she has a hospital bed), a new rug...

She came home on Wednesday - she was so thrilled - just to be home, and with her new room. She had worried that she wouldn't feel like we would cope with having her home, but as soon as she was settled in her bed, she said she felt so relaxed and knew that everything was going to be fine.

She had such a lovely day - her 16yo daughter was there for the day (she has started living with her dad). She even took a trip out to the shops in the wheelchair!

She has made peace within herself, and accepts what is going to happen. She says that she isn't worried, she just doesn't like seeing people upset. She wants to laugh.

I did up her medication roster based on the gazzilion page document they sent home from the hospital. I labelled the medications with the alphabet to make it easier - we got to the letter 'Q'!

The palliative care nurse came out yesterday, and said that the medication regime was ridiculous for her. She said that at this stage, she needs just morphine, panadol and movicol (for constipation), and maybe Somac for heartburn. Nausea pills as needed.

She is being treated for diabetes, blood pressure and god knows what else. She has huge tablets for pancreatic enzymes etc. We'll have her doctor review her medications, because she really struggles to get through them, especially in the morning. The nurse said that she was so close to the end that the other conditions would not make a difference now.

As for her physical condition, Her belly is very distended with her enlarged liver (chockers full of tumours) and ascites. Her legs are swollen with edema. She can barely support her own weight and it takes two people to help her get up to use the commode. The blue nurses are bringing in a bed pan because she is expected to be bed bound within the next few days.

She has many bruises everywhere - apparently these are all classic signs of liver failure. Her eyes are quite yellow, but the severity of this comes and goes.

She sleeps a lot, but then she has done so ever since she was diagnosed nearly 2 months ago. She is also becoming quite confused at times, apparently due to the toxins that her liver is failing to cleanse.

We have a roster for people to help out (and she is so loved that people are lining up - we could fill it twice over) and have two people with her at all times around the clock.

She has elected to return to hospital if/when she deteriorates. The doctors and nurses expect that she has between one and two weeks left to live, but that a catastrophe could happen at any time. Myself, I have stopped thinking in terms of time frame and just take one day at a time.

Apart from all of this, at the moment when she is awake (apart from the intermittent confusion), she is bright, happy, and the same old Helen. She still has quality of life, and it makes us all so glad to see her final days filled this way. We know there is still a tough road ahead...

Her partner, Bob, is struggling. He really is going to fall apart. I'm not sure what can be done about this. I am so glad I had the task of getting her set up at home, because it gave me something positive to do instead of feeling so helpless!

Anyway, this is how it is... She is such a special person, and my heart also goes out to everyone else caring for somebody with this disease and also especially for those suffering from it.

I know that this forum is largely made up of carer contributions... but I also know that many people suffering from this terrible illness, especially those newly diagnosed, come searching for information and stories to help them through the process. My heart goes out to you, because there is not a great deal of good news. Hopefully that good news will come some day in the future in the form of a treatment or cure.

Good luck to everyone, and I will let you know how we get on.

Best wishes,
Mandy

LOVE4MOMMA · Regular Joined: 22 Jul 2008 Posts: 45 Location: Kentucky

I will keep Helen, her family, and you in my prayers. I'm so glad she is able to be bright and happy at times. I've been following this post, so please let us know how things are going. Also if you need to talk, I'm here.

--Crystal
_________________
Crystal
I love my momma!!

http://www.carepages.com/carepages/Cynthia

jessica026 · Regular Joined: 17 Jan 2008 Posts: 44

you are a wonderful person and wonderful friend Smile

helensfriend · Regular Joined: 26 Aug 2008 Posts: 17

Hello everybody,

I write with very sad news.

Helen passed away on Monday, the 6th of October. The next day would have been two months from when she was diagnosed.

Her family and I and other close friends are devastated, but glad that she is is not suffering any longer.

As I wrote in a previous post, Helen had gone home on the previous Wednesday, and had gone on an outing to the shops in her wheelchair! I think she wanted to make things seem normal for her 16 year old daughter, but she said to me afterwards that it was probably too much for her.

She continued to be well right up until Sunday - she was eating fine, pain free and with no nausea. The only thing that was getting progressively worse was that her legs were becoming very heavy. By Saturday we had a commode next to the bed and it was a real struggle to get her out to use it.

On Sunday, it became clear that she would need a bed pan as it was too hard on her to get out of bed to use the commode. Lifting her hurt her also.

Early Monday morning, she started getting bad pain, and her partner gave her morphine injections, 3 hours apart. A doctor's visit was arranged for late morning, but by then, Helen had said that she felt 'different' and wanted to go back to hospital.

Her family and close friends were all called up to the hospital through Monday afternoon. We all went in to say our goodbyes, and she understood what was going on, even though by that stage she couldn't talk anymore. I told her that she was a gift to me and that I loved her. She nodded.

At one point, all of use who loved her gathered around her bed hugging and holding hands. We told her that we loved her. The she was left with just her partner and her children. Then we took her children out of the room and they gave her more morphine. It was just her partner with her when she passed at 5.30 in the afternoon, and in the end, she died without pain.

The blessing is that her suffering was short lived.

Helen was an extraordinary person. She was filled with a generosity of spirit that seemed to light her soul. Her willingness to share her time, knowledge and wisdom without any regard for her own interests was a gift to anyone that knew her.

In Helen I found a soulmate, and my life is so much richer for having known her.

My grief comes in waves, but for the most part, I just have a heavy heart. Her children are coping quite well for the most part. Her partner struggles and I worry about him. Helen's funeral was yesterday, and it was a lovely celebration of her wonderful life.

Helen's path with this disease will not be the same as others. In hindsight, she could have been diagnosed up to 3 months earlier - but she had a 'she'll be right' attitude to her health... By the time she was diagnosed, I think that just about anyone could have told her there was something seriously wrong just by looking at her. I am mindful that people come hear looking for information and might panic when they read of someone passing away less that 2 months after diagnosis.

Thank you to those who have taken an interest in Helen's story.

Best wishes to anyone faced with this disease. It is so hard to adjust to the reality that options are so limited. I hope the future brings a cure or other treatment that provides a meaningful benefit and some hope.

Take care everybody,
Mandy

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