Hello once again,
Thank you for your kind words, it means so much to the boys and me.  I think initially I was so strong and now I seem to be strong one day and weak the next but I am getting there.  My boys are trying very hard, hopefully in a few more months we will start feeling much better.  We are trying very hard. 
The boys miss their Dad and I miss my hubby. I have started my bereavement counseling again, hopefully this time it would make a difference.  Your words of encouragement strengthened me.  Thank you and God bless.  Phil

Hello Everyone,
Today is a very painful day as we relive this time last year when my husband was called to eternal life.  I have not been on these discussion boards as it brings far too many memories.  My children have still got a long way to go in their grief and for me some days are good and others pretty awful.  I often feel he was taken too early and am still angry as I feel the medical faculty worked on him very slowly.  They took their own time to do things with his treatment.  Anyway please pray for the boys and  myself.  I had tried to send several e-mails to Lainy but they keep coming back.  All the best to everyone going through this terrible cancer.  My prayers are with you.  God Bless  Phil

Greetings to Marions, Percy, Gavin and Darla.  All the best

Hi Everyone,
My young sons and I are so sad as my dear hubby passed away, he  did not make 3 years.  The whole of this year he has been in Hospital with a couple of days at home during Easter.  I did send messages to both Lainy and Percy via e-mail but  for some reason Lainy's mail was sent back.  His last moments or dare I say few weeks were complete torture for all of us.  He was just a skeleton when he passed.  He wanted to come home and die but sadly could not make it.  He got VRE and that weakended him.  He could not eat or drink for almost 10 days.  I remained in the Hospital with him for the past 2 months.  He was so young and had so much to live for.  Till the very end he kept fighting but sadly lost the battle.  His funeral was on the 30th of July.  I am still in complete shock and have not gone back to work.  This was the only place where everyone heard me out and gave me a bit of comfort and peace.  I had some big disagreements with both Doctors and Nursing staff.  I am still so exhausted.  Thanks to everyone for your help and assistance.  To everyone fighting this huge Monster you are in my thoughts and prayers.  Godbless  Phil

4

(11 replies, posted in General Discussion)

Gerry is struggling for his life, they have put him on IV antibiotics yet again this time Vankomycin, Merapen.  While he was in the Palliative hospital he developed an infection "gram negative e-coli", so they transferred him to another Hospital.  Whilst in this hospital he developed another infection "Strepp bacteria".  Apparently he is septic, very confused, slurred speech, and extreme weakness.  His INR levels were high so they gave him vitamin K.  He is so bloated, and remember he is only a thin man.  Now every part of his body has fluid retention.  His albumin is only 19.  The C reactive protein is high.  His LFT;s are still deranged. Does not look very good.  I requested for them to put him on TPN feeding but they refused.    It all happened on Sunday night, his blood pressure dropped to 72/45, and from then on he just deteriorated.  He is unable to speak much.  They did give him some Albumin infusion but that does not help a great deal, the Albumin went up to 22.  He is still spiking temperatures at night.  Today they have started him on a low dose of lasix to reduce the fluid.  His billirubin is still high but the GI specialist does not believe that it is due to a blocked bile duct.  They have found 3 lesions on the liver and one is a solid mass, they are not too sure if 2 of them are liver abscess.

(1)  Could the overdose of the Methadone have any relation to these events?
(2)  Is the liver shutting down doing into Liver failure?
(3) Can anything else be done to bring the albumin up again

I have a very bad feeling that things are not going our way please remember us in your prayers - Godbless you all    Phil

5

(11 replies, posted in General Discussion)

I am just back from the Hospital, Gerry still has fevers, the whole day no fever but towards the night 38.2 when I left the Hospital.  Yesterday his Billirubin crept up to 82.  I was so scared today as he seemed so confused, and his speech was slurred.  He was  very dis-oriented and was very sleepy.  When we said a pray together he was getting confused with the words (very scary). He would not wake up and the nurse had to shake him up.   I asked for the RMO to check him out and  the doc  has taken some bloods again today.  I asked if this was liver failure and the doctor said that it did not look like it but there is definitely something going on.  His phosphate levels were low.  His BP was 98/57.  Saturation was good.  Yesterday they also gave him an iron infusion as his iron levels were low.  Thanks to everyone.  I did ask about oesophageal varices but the doctor did not think so (thanks Marion),  He has been on Methadone for his pain and was going well for the past 2 weeks with his pain medication.  Do I need to push them to do any further tests, please advise.  Has anyone experienced these symptoms?

6

(11 replies, posted in General Discussion)

Thanks Lainy, how very kind of you so early in the morning,  It is 5.20 am here and I am wondering what today is going to bring.  I so want him "Gerry" to come home and spend some time with the boys.  We miss him. 

They tell me that he is loosing blood but they are finding it hard to pin-point from where?  the blood transfusions did scare me.  He still continues with the fever, hopefully today will be a better day.  Warm wishes and Godbless to all
Phil

7

(11 replies, posted in General Discussion)

He is still having fevers, his blood Hb has gone gown to 66 and is now having blood transfusions.  He seems very weak.  For the gram negative e-coli bacteria they have him on TIMENTIN.  I did ask about the other medications both Lainy and Percy suggested but they went with Timentin. 

He is unable to empty his bowels real well and his bowel stools are dark green, they tell me that it is due to the iron tablets.  Any advise as I am very frightened.  Godbless you all  Phil

Thanks Lainy we are sitting here at the new Hospital but they have not started any antibiotic as yet.  I am praying that they will act on it quickly.  His BP is also rather low 85/60 I may just mention this antibiotic to the doctor.
Thanks so much for your help.  Phil

Thank you once again for helping me out.  Today we were told that the blood culture has grown a gram negative rod  - ecoli bacteria.  He is currently having timentin IV antibiotics and we have been moved to an acute Hospital from the
Palliative Hospital, note this is the third Hospital, hopefully this one would be the one to fix his problems. 

Percy, you are right the Augmentin is not working on my Husband should I just mention this to the doctor?

What is the best antibiotic for this bacteria? could this be the reason for the dark urine.  His temperatures are still high and they are being treated with Neurofen.  I am giving him plenty to drink and may be they will put him on some IV fluids.  Thanks everyone, I could not survive without you.
God Bless Phil

Thanks, Lainy, Percy, Gavin, Marions, Darla & Andie.  I need help once again please.

My hubby is still in Hospital, he came home just for 2 days and is back now in the Palliative Hospital.  They have now started him on Methadone 12mg with breakthrough still being Hydromorphine and Gabapentyn for the Neuropathic pain.

He seems to be tolerating the Methadone but unfortunately yesterday one of the nurses accidently gave him an overdose of Methadone 5 times over and the Doctors were very apologetic to us.  I was not Happy, anyway he was under review last night and seems very drowsy, has been given oxygen  His saturation is good.  The BP is 90/60 on the low side, has a bit of nausea but started spiking a high temperature.  Now I am not too sure if it is the Methadone or another blockage.  His urine is rather dark (not too bad).  This morning they have done another blood test.  Note:'

(1)  My husband had an ERCP to re-block a stent last month.  Note the first metal stent was put in on 23 March via PCT.  The second via ERCP.
(2)  He was put on IV antibiotics Tamacin & Timentin, Ertapenen  this brought down the temperature, and was sent home on Augmentin Duo oral

(3) From 21May he has been having a low grade temperature and after the Methadone overdose a spike in temperature to 39.2.

My Questions

(1)  Would this fever ever leave him?  blood cultures performed came back negative
(2)  Is it yet again another blockage just in 3 weeks?
(3)  Should we have had the stent re-blocked via PCT instead of ERCP?
(4)  The Oncologist was going to try some treatment on him but now he is so ill and I am sure he will not be able to go ahead with this treatment - not too sure what he had in mind.
(5)  Could Augmentin duo be causing the fever?
(6)  Note with IV broad spectrum antibiotics he seems fine
(7)  Has anyone had to battle this fever and  stents being blocked within a matter of 2 weeks?
(8)  Could dark urine also be the Methadone?

Sorry for asking so many questions but I have had no sleep and am trying to find some answers to keep my hubby comfortable.  Thanks and Godbless

Phil

Thanks, Lainy, Percy, Gavin, Marions, Darla & Andie.  I need help once again please.

My hubby is still in Hospital, he came home just for 2 days and is back now in the Palliative Hospital.  They have now started him on Methadone 12mg with breakthrough still being Hydromorphine and Gabapentyn for the Neuropathic pain.

He seems to be tolerating the Methadone but unfortunately yesterday one of the nurses accidently gave him an overdose of Methadone 5 times over and the Doctors were very apologetic to us.  I was not Happy, anyway he was under review last night and seems very drowsy, has been given oxygen  His saturation is good.  The BP is 90/60 on the low side, has a bit of nausea but started spiking a high temperature.  Now I am not too sure if it is the Methadone or another blockage.  His urine is rather dark (not too bad).  This morning they have done another blood test.  Note:'

(1)  My husband had an ERCP to re-block a stent last month.  Note the first metal stent was put in on 23 March via PCT.  The second via ERCP.
(2)  He was put on IV antibiotics Tamacin & Timentin, Ertapenen  this brought down the temperature, and was sent home on Augmentin Duo oral

(3) From 21May he has been having a low grade temperature and after the Methadone overdose a spike in temperature to 39.2. 

My Questions

(1)  Would this fever ever leave him?  blood cultures performed came back negative
(2)  Is it yet again another blockage just in 3 weeks?
(3)  Should we have had the stent re-blocked via PCT instead of ERCP?
(4)  The Oncologist was going to try some treatment on him but now he is so ill and I am sure he will not be able to go ahead with this treatment - not too sure what he had in mind.
(5)  Could Augmentin duo be causing the fever?
(6)  Note with IV broad spectrum antibiotics he seems fine
(7)  Has anyone had to battle this fever and  stents being blocked within a matter of 2 weeks?
(8)  Could dark urine also be the Methadone?

Sorry for asking so many questions but I have had no sleep and am trying to find some answers to keep my hubby comfortable.  Thanks and Godbless

Phil

Just back from the Hospital.  Very traumatic to watch him suffer with the pain.  Currently they have him now on Hydomprphine via the PCA and breakthrough via butterfly is also hydromorphine  4 hourly.  It is making him extremely weak.  I had a talk to the doctors and they are thinking that they should introduce Gabapentin, a drug which targets the nerve pain.  Can anyone give me feedback on this drug>

Percy, have you heard of this drug, I googled it and it did say that it can  increase the adenocarcinomas.  Is this true?  as they widely use it here in Australia.  Please advise.

Lainy, I did miss you while you were away and hope you are settling in nicely into your new apartment. 

Marions, Pecry, Andie, Darla, &  Gavin, thanks for being there for us.   I feel totally knackered.  Godbless   Phil

UPDATE  ON GERRY

They finally managed to get a second metal stent in via an ERCP.  He was done on Wednesday night, Thursday he was OK in some pain no fever.  On Friday he started getting a dry mouth, bloating, and is now having a fever.  The pain is severe.  He is on Fentanyl PCA and Hydomorphone every 4 hours but the pain is still bad.  Could it be pancretitis?  remember he did have whipples surgery in September 2009.  I cannot bear to see him in pain.

They said the Stenting was a success, urine not dark any more and I really thought that he is going to feel better but seems like the pain is worse.  There is a dull pain in his back and a pain in his celiac plexus. 

Is Gabapentyn the nerve pain drug a good one to take as I read this could increase the adenocarcinomas.  He is in Hospital.  It is 2.30 am and I am rushing to the HOspital, just got a call.  Please help me.

Thanks
Phil

Hello once again,

Thank you so much for your assistance, support, and guidance.  I went to ER and they started him on IV antibiotics.  His LFT's were really elevated.  His billirubin was 110.  They feel there is a blockage in the stent but the hospital communication is  very poor.  I took your advise and asked them all the questions.

Thery did not do the PCT todaybut promised to do it tomorrow so he is admitted in Hospital.  His BP was on the low side and he has fluctuating fevers some pretty high.  They have started giving him panadol,

We were told late this afternoon that the risk to unblocking the stent and re-stenting could cause his livery to bleed and hence it could be fatal.  Is this right?  If this be the case then why do I read that so many patients get their stents re-done when it is clogged.

Would an alternate option be to do an ERCP and then put the stent in because now it is localised, initially a stent could not be placed via an ERCP due to his alterter anatomy due to the whipples operation.  Now that they already have a stent in, I think it would be much easier and safer to put in a stent via an ERCP.  Can this de done please let me know asap as they are trying to have him in theatre tomorrow.

I am going to see an Oncologist to discuss the chemo regime and will keep you updated.  Godbless Phil

Thank you Percy, Marions and Gavin, taking him to ER will keep you updated.  I am ready to fight as I know this is going to be a battle.  I feel so helpless, you are my only hope.  Percy thanks for your e-mail.  It helped me so much.  I am printing your e-mail to prompt myself of what I need to ask them.
God bless you all
Phil

I am going mental with the run around I have had, apologies for not updating you earlier, I have had not much sleep, Gerry has been in Hospital for the past 5 weeks and then we have been running around with MRI's, blood tests etc.  I feel that I am not coping with work, kids and Gerry, please pray for us.

Now about Gerry, it was very difficult as the doctors could not make up their mind as to what they wanted to to
(1)  Operate (2) PCT and just kept putting it off and on hold while Gerry got sicker and I had to scream and make such a noise and finally they put in a metal stent as they found it a safer option due to the location of the tumour. The stent was put in on 23rd March after a long agonising wait.  We are now in the care of palliative care.

Gerry ofcourse has lost so much weight and is pretty weak.  He was going OK after the stent but now has started having a temperature/fever and his urine again has started to discolour and his eyes are slightly yellow (jaundiced).  I am at my wits end.  I cannot believe that it has hardly been 6 weeks after the stent and he seems to be having these symptoms.  I only hope the stent is not blocked or the tumour has not grown all over the stent.  What am I supposed to do?

Today we had a blood test and tomorrow we are back at the palliative doctor.  The frustrating bit is that they take so long to action anything.  In your experience can antinbiotics fix any infection/inflammation?  If the tumour has blocked the stent is there anything that can be done?

We were told that Chemo can be given to Gerry but the doctors feel that it may not do him any good.  I do not know where to go.  My sons are so devastated and I am exhausted.

The stent is on the right side of the biliary duct.

I do hope you and your families are well, I do not get on the webiste as I am struggling with time as my son also needs care.  He is doing OK.   Please pray for us.
Take care,

Phil

17

(36 replies, posted in General Discussion)

Lisa,
We in Sydney, Australia are storming heaven for you.  Like the doctor mentioned it does not metas..... to the breast.  My sister had an enlarged lymph node on her breast  and it was a benign cyst. All our prayers with you   
Phil

Crushing news about my husband.  Yesterday the Oncologist mainly called us in to tell us that Gerry did not have long to live.  He said that chemo could be given but in  Gerry’s case it may not do him any good.  Basically he said to go home and ….  We were in complete disbelief, he said the MRI result was reported by an experienced MRI specialist and hence he supported it.  We also met the Surgeon who mentioned to us earlier that he was not in total belief of the MRI scan and was doing his own investigation but that is being carried out very slowly (I hate this medical system).  He now says that the Pet scan would be done only after him consulting with some of the radiologists to see whether it is worth doing a PET.
If that is ok and the tumour is localised then he may try to go in again and see if surgery is possible.  Note Gerard did have Whipples in 2009 August.  He will only be able to give us an answer by Thursday or Friday this week.  If surgery is not possible then they will try and do the PTC as now Gerard is turning yellow, (note ERCP was unsuccessful) his ALT is 895, GGT 546 and Tumour Markers 2449.  I was speechless when I came home, yes thanks to all of you I am stronger than I thought I would be.  I cannot explain the internal turmoil.  He also mentioned that Gerard can have weeks or a few months left.  How about alternative therapies?  Is there anything out there that we can try? 
What sort of paperwork do I need to get ready, Will……  Please help.  This cancer is awful.   I have received more answers and assistance from this webiste rather than the doctors.  Godbless you all
Phil

19

(6 replies, posted in General Discussion)

Lainy, Andie, thanks for all the information about PTC.  I went to the Surgeon yesterday to try and see if he will change his mind and try and help us out.  He is now going to send us for a PET scan.  He will make a decision after he views the PET scan.  We have not received a date yet for the scan but hopefully it should be in the next couple of weeks.  My husband remains pretty fatigued and weak.  His pain is worse at night so we have some pain-killers (Endone) and sleeping tablets that never seem to work on him but altealst now I am aware that they can do PTC.  The Oncologist is seeing us on Monday.  Thank you so much for all your assistance as I was feeling so hopeless.All my prayers & blessings to you all

My husband ERCP was un-successful due to the previous whipples surgery. 
They could not identify the ducts and hence could not place the ducts.  My husband condition remains bad.  He is very tired, and today has developed pale stools.  The ERCP physician said that his Billirubin is 26 and that is not too bad.  Is that an answer?  I am so frustrated.  Is it possible to put stents via a laporoscopy?
I am going mad

Phil

THANKS LAINY, yes you are right - I suppose it is the disappointment.  Thank you for being there, you just calm me right away.  I am giving him all you said as much as he can tolerate.  I only wish we had you here in Australia.  I love your passion, spirit and need some of that right now.  Godbless   Phil (Pru)

Update on my husband after the MRI - ERCP organised on Thursday for stents

I need your help so that I can ask the right questions

We were given bad news.  the cancer has spread into the liver and the hepatic ducts.  I am printing a copy of the findings:-
My young sons and I are devastated by the news we heard from the doctors after the MRI .  Please let me know if there is anything we can do as the surgical team say that they cannot operate.  I am very disappointed as in April if you remember the PET scan did show a hotspot but both the surgeon and Oncologist informed me that it was too early and because they could not really see anything they could not do anything about it.  In hindsight I think the Oncologist should have started chemo or RFA etc so that it did not grow (am I right?)  By them leaving it for so long it became in-operable.  In June 2011 the MRI did not show anything and  a 3 phased CT scan was performed and again the result was in-conclusive. 
________________________________________________________________
REPORT
Routine MRI with dynamic contrast lava sequences &  MRCP  sequences

Finding:  Noted ,Whipples procedure with  gastroenterestomy, choledochoenterostomy and head of pancreas resection.  There is an irregular mass with low T1 and high T2 signal and delayed contrast enhancement is seen insinuating the porta-hepatis and into the portal ??? in both the left and right hepatic lobes with the left being more involved an coursing through obstruction.  At the porta-hepatis, the left portal vein is smaller on calibre compared to the previous MR study, suspicious for partial stenosis caused by this tumour.  This mas is also seen to extendn beyond the porta-hepatis extrahepatically into the epigastrium and is seen to about the IVC and partially encasing the left renal vein, afferent duodenal loop and the celiac axis.
No ascities identified.  The adrenals, spleen, kidneys are within normal limits.
There is a tubular low intensity on all sequences structures seen in this subphrenic region most likely representing an artefact.
Comment:
Evidence of extensive tumour recurrence at the portahepatis and extending into the portal ??? affecting left more than right causing biliary obstruction and also extending into the retroperitoneum abutting and partially encasing the vessel and afferent duodenal loop as described.   
________________________________________________________________

(1)  Would it be easy to stent the ducts considering he has had whipples surgery?
(2)  He is itching, is there anything else I can do other than give him an antihistamine?
(3)  Is there anyone else who has experienced anything similar what was your action plan
(4)  I have written to the Oncologist but have not received any reply
(5) Is there anything else I need to know?
(6) Is there a special diet that I need to give him?, he does not eat much anyway

Thanks to both Lainy and Percy for your prompt replies to my e-mails. It helped me so much.  Praying  for everyone on this site.  Godbless.....   Phil

Thanks Percy.  He is currently undergoing a gastroscopy/endoscopy.  The junior doctor on duty mentioned to us that the liver scan/ultrasound showed dilation of the ducts in the liver.
I am awaiting the results of the endoscopy and then they are doing an MRCP/MRI on Thursday, I really am not sure why the delay but I am at their mercy.  Will keep you updated.  Thanks to everyone.

Phil (Pru)

Thank you Pam, Lisa and Sarasota, On Monday they are doing an MRI MRCP and then as Sarasota mentioned they may do an ERCP but in my husband's case it may not be an ideal situation as he has had the whipples surgery and his whole anatomy is altered.  Tonight he is itching, I am wondering if it was the shrimp he tried to eat.  Hopefully if they can get a stent in than may be it may help resolve his problems at least temporarily.  Thanks for all your prayers and well wishes.  Hope Lauren improves each day.  All the best and Godbless.  Pru (Phil)

Thanks Lainy and Marions, you give me so much courage. as I am at my wits end.  it is definitely burping (big loud ones - sounds terrible). I will ask today if they can involve the surgical team.  Everything is done very slowly, that is what is discouraging me.  Its been 8 months since I informed them that things are not ok.  The Medical staff sometimes wait for issues to escalate before they do something,  if they looked into these symptoms earlier may be we could have nipped it in the bud.  Sorry I am just going crazy.  Thanks for all your kindness    pru(phil)