Topic: New Member

Hi, I am Krish from India. I bumped into this forum recently and wanted to get the members opinion.

Life was going smooth till my father was diagnosed with CC in May 2012 when he was 66yrs old. The latest discharge summary as below gives the complete picture what he has gone through.

" A known case of metastatic carcinoma of liver had biopsy and cholangiocarcinoma was diagnosed. Patient had six course of chemotherapy with Inj.Gemcitabine and capciabine. Last course of chemotherapy was on Oct 2012.

Subesquently patient was found to have progressive disease hence started on Gemcitabine and pacliall. Had two course of chemotherapy. But patient was progressing symptomatically and had progressively elevated AFP. Hence patient was started on palliative therapy with Tab.Erlotinib.

Now patient is brought to us with the history of pain in the right hypcondrium an vomiting with one episode of hemetemesis. History of fever on and off"

Course in the hospital:

" A known case of CC progressive disease on erlotinib came with progressive pain and one episode of hematemesis. Patient was started with hydration and Inj.Pan infusion. CBC done showed heamoglobin and platelet within normal range. Patient was managed with antiemetic and analgesic. With this patient improved.

Progressive nature of the disease has been explained to patient's relative. Resistant nature of the disease has been explained. After discussion it was decided to continue supportive care at home"

Currently he is on Addnok (Buprenorphine) for pain management 2-3 tabs a day. Adviced to discontinue Erlotinib. Review with med.onc. this friday with ALT/ALP and CBC tests done.

Three days back, his legs started swelling and now from lower abdomen he swelling is increasing. Pain is getting more and only moderately being controlled by addnok. He is able to walk few steps but mostly sits or sleeps in the bed.

Few questions for the experienced forum members

1. Why this sudden swelling? Is it indication of liver functions failure?
2. He has lymph node metastasis. Is the swelling because of any problem in cancer effected lymph nodes?
3. After one episode of hematemesis, what are the chances that it will occur again. (though the first episode we were told may be due to gastric ulcer)?
3. Are we seeing signs of end?
4. What can we expect so that we are prepared ?
5. Can the dosage of addnok be increased if pain not controlled?

It has been a tough journey for my father and our family but we also understand that he could manage for more than a year while the initial time given was less than six months.  For the past 3-4 months erlotinib worked well with minimum side effects with manageable pain.

My prayer to almighty is that he suffers less. We can only see his pain and not able to do anything. The doctor has told nothing much can be done further.

Your help is much appreciated to go through these tough times.

regards,

Krish

Re: New Member

Hi,
1. Swelling of the lower part of the body and abdomen is caused by ascites. As the liver function declined ,it's ability to filter toxin, to perform it normal activity to digest food with its production of enzymes and proteins is declining; it's ability to filter the blood is affected and therefore no longer to perform effectively . The excess fluids now are handled by the lymphetic system and the excess lymph fluids will be end up  as ascites ,part of the reason for the swelling.
2. The lymph node mets ,yes will affected by the tumor growth,it will cause the lymph nodes themselves swelling .( think of it as a battle ground of lymphocytes as an army exchanged fire with the tumor cells as its counter parts; ) it can affect the lymph flow with regard to ascites.
3. I think the hematemesis may be more related to the esophageal varices, it is related to the liver which cannot maintain its normal function.
4. Sign of the end and how to prepare for it. Please read the link below.and other members will give you helpful encouragement and other hint of such .

http://www.cholangiocarcinoma.org/punbb … 9972#p9972

5. The dosage should adjusted and titrated up by your doctor , the rule is to give enough of morphine to easy your father'pain without over dosing him into sleepiness. Put his legs up with a couple pillows and request doctors to do a paracentesis procedure( to remove the fluid in the abdoman) will make him feel more comfortable.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: New Member

Dear Krish, welcome to our remarkable family but sorry you had to join. I am very sorry to read what your Father has gone through and what he is now going through. At any time COMFORT is the bottom line. I don't know how your system works but you could try another opinion with another ONC. If he cannot get comfortable you must let the Doctor know. You asked if this is the end? I have a short list of what to look for and I would be glad to email it to you if you wish. Please try to be very strong as that is what will get you through this awful journey. Also please keep us posted on your Father as we truly care.

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.

4 (edited by marions Wed, 31 Jul 2013 11:17:32)

Re: New Member

Krish...I too would like to welcome you to our site.  My heart is with you in this difficult time.  Krish, during conferences I have had the opportunity to speak with numerous physicians from you country and I have come to understand that palliative care differs in India than that of the US and other Western Countries.  One major issue appears to be the reluctance of administering pain medications to the patients.  I have been told that pain reducers are readily available, but the family members are hesitant to storing a supply of medicine and/or are uncomfortable in giving it to the patient.  Please know that advanced disease almost always demands escalation of pain reducers and that you should consult with the treating physician as soon as possible. Please stay in touch - we care.
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 Member

Hi Krish,

Welcome to the site. Sorry that you had to find us all here and I am sorry to hear what your dad is going through. But I'm glad that you've joined us all as I know that you will get so much support and help from everyone here. I know how you feel right now as a few years ago my dad was where your dad is right now.

My dad too had the swelling of his legs and abdomen and that as Percy has said to you is ascites. My dad was given tablets to try and help with that and ascites is a very common  issue with this cancer. It is also possible for the fluid build up to be drained and that is something that you could discuss with your dads doctors.

We so know that this is a tough time for you all right now but you are not alone in this any more, we are here with you. Please keep coming back here and let us know how everything goes. We are here for you and we care.

My best wishes to you and your dad,

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.

Re: New Member

PCL1029, Thanks for your comments, helped me to understand better.  Will check with for the mentioned procedure.

Lainy, we took opinion from one more onc. here and he said we may try TACE to only help the liver for a bit longer and nothing can be done with lymph nodes. But to ascertain that he required another PET-CT. My father said he does not want any more tests and no need any other procedures as he could not tolerate them. He was just ok with pills. We decided to go by his wish. Thanks for you concern.

Marions, you are right. Palliative care is yet to catch up here with western world, but is improving. Morphine is given here only at the last stage. While my father is hesitant to take them myself and doc are insisting that he dont have to suffer with pain. I will talk about the right dosage for him.

On a side note, is Buprenorphine better than Morpine? pardon my ignorance, which one would reduce pain effectively?

Gavin, I can understand what you have gone through. He is now prescribed with lasilactone tab. to increase fluid passage to see if the conditions improves. I will update.

Again a big thanks for all you guys. It helps a lot to share shoulders rather than struggling alone.

Will keep you posted after the test results of CBC, ALT/ALP and meeting with onc on friday.

regards,

Krish

Re: New Member

Today i had a discussion with onc. The ALT level is 79 (Normal range 5-35) and ALP is 795 (Normal range 75-275), Clearly showing damage of liver.

The onc. said nothing can be done much and objective is to keep my dad in comfort.

He is now on Durogesic 25 patch. Able to control pain. The onc. has told if the pain is getting more he will increase the dosage.

He also has a burning/pain in the lower abdomen on and off. The onc. said it may be due to some nerve compression and has prescribed Amitriptyline to control the nerve pain.

My mind is blank now. Hope his pain will be under control and he suffers less in this last journey.

Though my interaction with this group is in later stage, i have been a silent observer in the past and others experiences have helped me a lot.

Thanks for all the support.

regards,

Krish

Re: New Member

Hello Krish and thanks for the update. I am so sorry to read this about your Father. This is the time now, until when ever to make some wonderful Memories and I agree with the Doctor that the most important thing is his comfort. Please keep us advised as to how he is doing as we truly care. Be Strong!

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 Member

Dad's Present condition :

Bilirubin level is high 3.8 when tested last a week ago. He is on Duragesic 25 mcg patch. Mostly drowsy. Speaks with lot of difficulty. Unable to relate time, day or night but responds to questions. Does little bit of walking to the toilet. Takes liquid diet 2-3 hrs once. Gets fever once in a day. Urine is dark yellow and the frequency and quantity is reducing. Ascites and edema are not increasing.

His pain is increasing on and off. Manageble with addnok sublingual tablet once in 6-8 hrs. Not sure should we ask for next dosage (50 mcg) of the patch.

I am not sure whether he is shifting towards coma due to liver failure or because of the pain medicine. Not sure to ask for increase in dosage (50mcg). The doctor says there is a risk of becoming more drowsy and slip into coma.

We are now combining duragesic and addnok to a level of manageable pain. but it is increasing. Will talk with the oncologist soon about increasing the dosage.

Also started looking for Hospice service here and found very few. trying to get help from them. I am worried if they will change the course of pain management totally and start from scratch. I am not willing to totally stop consulting oncologist.

While i will ask the onc., can somebody clarify What is risk of increasing dosage of the medicine. My intention is to understand, how far it is possible to increase dosage without getting into coma.

Does duragesic and morphine combination or only higher dose of any one will help.

While i know the end, i am trying hard with all possible resources to keep him comfort. Any suggestion is much appreciated.

Thanks and regards,

Krish

Re: New Member

Krish, you are doing a magnificent job of taking care of your Dad. Yes, pain control is of the utmost importance with CC as you near the end of this journey. Teddy was always on Morphine only and they just kept increasing it as needed. I would definitely tell the ONC what all is going on as the state Dad is in could be the Meds, liver failure, his Amonia level may be too high or getting near Journeys end. Is Dad home with you now? Be strong!

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 Member

Hi Krishna,

A coma will happen with or without morphine.  What morphine will do is make him comfortable and pain free although yes it may make him more sleepy  as it can be a side effect of morphine.  If his pain is increasing though then he needs his pain medication increasing.  It can be given in different ways such as tablet, injection, patch or through a pump.  Have you been able to find any hospice help?

You are being very brave.

Clare

In the stars now . . . .

Re: New Member

Krish, my husband is end stage CC and he is on 150 mcg of Duragesic patch in addition to Dilaudid every 4 hours. Does your dad say if he is in pain? Another thing to consider is that the patient needs some meat on their bones for the patch to work. Many patients go off the patch at the end because they have lost too much weight.

Re: New Member

Shelley, good point to bring up, I totally forgot about the patch and weight! Excellent point! Thanks for the reminder.

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 Member

Krish....I too agree with what the others have mentioned.  The way I look at it and the way I approached it with my husband is that more than anything he needs be as pain free as possible and not suffer.  As had been mentioned by his physician, overdoses of pain meds' can cause the patient to fall into a coma.  It is a fine line of controlling pain (and nausea, if applicable) and simultaneously keeping the patient coherent.  However; I strongly believe that most emphasis has to be focused on the comfort of the patient.  Hospice personnel should be able to work with you on this.  This is what they do however; not all of their chapters handle these situations equally as well.  Hence, I would reach out to your local Hospices (if there is more than one) and address the issue directly with their staff. 
Please stay in touch.  My heart is with you.
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 Member

Dear Krish,

Having been where you are right now with my own dad a few years ago I can tell you that you are so doing a great job in fighting and caring for your dad and I know how much that will mean to him. I so agree with the others that pain control and comfort are of the utmost importance now and I hope that you will be able to do both for your dad. As Marion has said, hospice should be able to do this as that is what they do.

My dad was in hospice care and they took such good care of my dad. Many of my dads oral meds were stopped late in hospice and he was put on the syringe driver so that he could get his meds constantly over a 24 hour cycle. Through that, he was receiving pain meds, anxiety meds and anti nausea meds also and that worked very well for my dad. Along side that he was getting pain injections as and when he wanted them and that too worked well for him. My dad never had the pain patch that others have done and he slipped into a coma.

I know that this is such a tough time for you Krish, please know as well that we are all here for you and will help as much as we can.

My best to you and your dad,

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.

Re: New Member

Finally, found a dedicated comfort care clinic who does hospice services. Took dad to them admitted for two days and they brought the pain under control. Duragesic was removed. Shellina, yes you were right, his muscle mass was very less in the arms. Now he takes tab.Morphine 20 mg twice a day along with half tab triptomer and pregbalin for nerve pain.

Though he is mostly sleeping, not complaining of pain.

It is very sad that the the link between Cancer institute and comfort care does not exist, even if it does awareness is not there. There are only few people who do this here. Out of them mostly they would treat only at their premises. But, i could also get another organization who could support us at home. They are supposed to come today and they will take over. Hopefully, it happens as planned.

Thank you very much for all your comments. It helped me a lot. Now i am little bit relieved (not in the literal sense), that his pain will be controlled.

Re: New Member

Dear Krish, this is the best news, a good thing to wake up to today. What a relief to have found this comfort care! Hospice here is so prevalent there are so many to choose from. Teddy was on Morphine the whole way through and it worked well for him. I am sure you are extremely relieved. Please let us know how Dad gets along and thanks for this good news.

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 Member

Krish....I too am thrilled to hear that your Dad is comfortable.  Yeah to Sheilla for leading you in the right direction.  Unfortunately your comments re: palliative care in your country and the lack thereof rings so true.  I have spoken with numerous physicians, all of who are deeply concerned about this issue.  Although pain meds are readily available, people however are reluctant to either store these drugs within their homes or, there is an overall consensus not to use these drugs.  I am so glad that you have been able to bridge this problem by connecting with the right people.  I hope that others in your country follow your posting, as it may just set precedence for dealing with the issue of pain control for their loved ones.  Your Dad is surrounded by a loving family making excellent decisions on his behalf. 
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 Member

Very sorry to say my Dad passed away on 23rd Aug. Last two days was erratic, was gaining conscious on and off pain was becoming more during the end stage though he was on morphine. Tried increasing the dosage. but this pain seemed to be different. Pulse and BP dropped and last one hour breathing become shallow and took the final breath. Last night was horrible to handle for me, my sister and mother. We will never forget that night.

I am still trying digest the fact. But i am only getting thoughts of the last night 12 hrs.

Thank you all for the guidance. Your valuable inputs helped me a lot. It has been a tough journey for the past 15 months but nothing tough than what my Dad went through. I feel now he is relieved of the pain permanently.

Dad we miss you. R.I.P

Re: New Member

Dear Krish, I am so very sorry your family had to take this Journey but I know your Dad is now at Peace and in a good place. It is too soon yet but in time all of your good memories will take over the bad ones. I am sure your Dad is so very proud of you.

From your Dad to your family:

I’M  STILL  HERE

I’m at your side each night and day,
In your heart is where I’ll stay.
You can feel, see or hear, I am not gone, I’m always near.
I’m the colorful leaves when fall comes round,
The pure white snow that blankets ground.
I’m the first bright blossom you’ll see in Spring.
The first warm raindrop that April will bring.
I'm the first ray of light when the sun starts to shine,
And you'll see that the face in the moon is mine.
I'll whisper your name through the leaves on the trees,
And you'll feel my presence in the soft summer breeze.
I'm the salty tears that flow when you weep,
And the beautiful dreams that come while you sleep.
I'm the smile you see on a baby's face.
Just look for me, I'm every place!

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 Member

Dear Krish,

I am so very sorry indeed to hear of the passing of your dear dad. Having also lost my dad to this cancer I can so feel your pain right now. I know that the journey you have been on with your dad  was very tough, but I also know how much your dad would have appreciated you being there with him by his side throughout it all. We are here for you.

Please accept my sincere condolences and know that my thoughts are with you and your family right now.

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.

Re: New Member

Dear Krish,


I am so sorry to read that your dad has died.  Your father will have known you were right beside him until the end.  I sat with my sister when she passed in March and it was a very difficult passing to watch.  I promise you that with time, the memory of those last few hours will fade a little.

Your mum and sister are both also in my thoughts.

Clare

In the stars now . . . .

Re: New Member

Krish,

I am so very sorry to hear about your Dad.  I too was with my mother when she died of Lung cancer and it is difficult to get those images out of your head, but I can tell you from my own experience that with time, those images will be replaced with happy memories.

-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 Member

Krish, I am so sorry to read this. I pray for strength and love for you and yours. Take some comfort in the thoughts that he is now pain and cancer free.

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

Re: New Member

so sorry to hear about your dad. sad