In Hospital pain in Solar Plexus – Action Plan required

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  • #57329
    santineerp
    Member

    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)

    #57328
    lainy
    Spectator

    Dearest Phil (PRU) I am so very sorry about the news. Like I said in an e mail to you, PLEASE try not to dwell on what was or should have been. You will drive yourself crazy as with this CC you will never know. Concentrate on the here and now. Don’t understand why this DOC is not communicating with you! Burns me up! The ducts can still be stented, Teddy’s were after his Whipple. The itching would clear right up.
    When Teddy itched bad, we used ice packs on his arms and legs and the cold helped or he would take a cool Shower. I did find a cream called Sarna but not sure you have it there. Ask his ONC what else he can do. Not sure the antihistamine works for this. I am not a believer of the special diets. When the appetite is gone, instead of meals let him graze all day. And again a nutritional shake with maybe a banana blended in is just as good as a meal. I gave Teddy comfort food like scramble eggs and toast, homemade soup, buttered noodles. Honestly Pru I hate writing negative but I am so angry for you and what is not being done for Gerard. Guess if was there, you are probably lucky I am not, I would be storming this doctor without an appointment. There is no reason on this earth for Gerard to be suffering so and not be able to talk to a doctor. I call it barbaric! Sorry, girl, now I feel better. Hope this helped. I am so with you!

    #57327
    santineerp
    Member

    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

    #57326
    lainy
    Spectator

    Phil, I am with you and thinking about you! Hang in and be strong as I know you are doing the best you can. It is 1,000 times harder when we have no control!

    #57325
    santineerp
    Member

    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)

    #57324
    pcl1029
    Member

    Hi,Phil,
    MRCP can only tell whether there is a blockage or not and ERCP is the only procedure to put the stents in .
    The pain that your husband had most likely is cause by pancreatitis or pancrease related problem and the Cipro antibiotic along with narcotic analgesic can take care of the problem.But if the pain is not relief enough by the narcotic pain killers; non-pharmacological therapies such as celiac plexus block using steroids or celiac plexus neurolysis with injection may be considered by your attending physicians. But I will not suggest at this moment to the doctors,; let’s deal with the current ERCP,MRCP and MRI to see what is actual current problem first.
    Good luck
    God bless.

    #57323
    marions
    Moderator

    Pru…please, keep us posted.
    Hugs and love,
    Marion

    #57322
    santineerp
    Member

    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)

    #57321

    Pru,
    One symptom you mentioned was nausea after he ate. That was definitely one of my symptoms, every time I ate anything whether it was a large or small meal I would have nausea. I had the right branch of my bile duct blocked right where it splits just inside the liver. Immediately after installation of the stent (via the ERCP procedure) my symptoms started to recede and the nausea stopped almost right away, literally the next meal I ate had no nausea. My other main symptom was very dark urine (almost orange and chalky it seemed) and occasional (not the greatest subject matter here…) very light or clay colored floating stools. My billiruben didn’t get above 3.0, maybe even less than that from what I recall, so I did itch but not insanely all the time. Itching was present mostly shoulders/back and legs a bit too. My blockage was so small that it was virtually undetectable with an MRI and the ultrasound so the ERCP was the only way to know for sure. Of course, mine was done pre-surgery prior to my ‘modified anatomy’ also…

    Don’t know if this will help you or not, but that’s what I had for symptoms and a blockage was definitely (Klatskin’s tumor) there in the wall of the bile duct.

    #57320
    pamela
    Spectator

    Dear Pru,

    I am sorry for I also do not have any answers for you because my Lauren does not have any of what you say your husband has. Only right side pain, back pain, and a stomach pain after chemo. She used to have pain in her right shoulder also, but doesn’t seem to get that much anymore. It is so hard to see someone you love suffer. I pray for a plan of attack to make your husband feel better. Take care.

    Love, -Pam

    #57319
    lisacraine
    Spectator

    I don’t have any answers but I wanted you to know how sorry I am for your pain and will continue prayers for you and your family. Lisa

    #57318
    santineerp
    Member

    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)

    #57317
    marions
    Moderator

    Santineerp…I feel for you because, until things are sorted out too many questions will stay unanswered. I have learned that bile ducts can become clogged to the point that no food or liquids can pass through the intestinal tract. In those instances antacids and enzymes don’t appear to help either.
    I am wondering: is the medication keeping your husband’s pain under control? In re: to infection: have they run a blood culture?
    Also, is the surgeon, who performed the Whipple involved? You would want to insist on that.
    I wish with all my heart for things to be sorted out quickly and that your husband will receive whatever treatment necessary to eliminate the problems he is encountering.
    Know that a tidal wave of support is heading your way.
    Hugs and love,
    Marion

    #57316
    lainy
    Spectator

    Hi my dear Pru, I was wondering if you got the e mail and I see you did. Gerard needs something stronger than just an over the counter antacid. After Teddy’s Whipple they said they could no longer do an ERCP due to his ‘reconstuction’. You might want to check that. (I am just answering things that you did not have in the email). Yes, he had stents and they were replaced every few months so stents can be done. Pru, I wish I could magically take all this away from you and Gerard. As for eating, let him graze more than trying to put down a meal. Pru, is he hiccuping or actual burping. I know you will get some more responses here. Sending a huge hug loaded with Love!

    #6311
    santineerp
    Member

    Thanks to Lainy(Elaine), Percy, Marions for all your support and assistance. We are back in Hospital struggling.
    My hubby Gerry presented at ER with pain in his right abdomen, severe pain in his solar plexus (celiac plexus),pain in his left arm and pain radiating to his back. He did not look jaundiced but his urine was slightly yellow. He was severely fatigued and complained of overwhelming weakness. His LFT’s have risen and keeps rising & his CA19-9 has reached 1487 when we last checked about 3 weeks back. He also has severe digestive disorders and keeps burping even if he drinks water, being treated by the local doctor with antacids with no effect.
    There was a CT scan performed last Tuesday but they could not use contrast as he is allergic to the dye. They did what they call a negative CT scan, just meaning that the pictures are black instead of white and they are more difficult to read. After being admitted in Hospital on Thursday they did a chest X’ray and on Friday an ultrasound of his liver. The ultrasound showed that his ducts are dilated. The Oncologist initially thought that there was a blockage of the liver but on Wednesday said that there were 4 spots and one looked a bit suspicious (note all inconclusive). He is loosing weight and sometimes has a fever. This long and winding waiting for them to give me an answer as to what it is and an action plan is really getting to me.
    In your experience has anyone you know had similar symptoms of pain in the solar plexus, I did do a search but came up with nil results. Just devastated and do not know what to do. Any suggestions? By the way I have requested a MRI MRCP (thanks Percy). They are also doing an endoscopy on Monday and the MRCP will de done only on Thursday next week (this waiting is agony).

    If there is a blockage they want to do an ERCP the last time he did an ERCP he became very ill and because of the whipple’s surgery he had it may cause further complications, any suggestions. They may want to put a stent in but before all this I want to know 100% if there is a blockage.

    What are the other methods of putting in a stent if required without an ERCP, can you put in a stent with an MRCP?. His latest pathology results show that the LFT’s are rising, they put him on a course of antibiotics “Ciprofloxacin (cifran). He also takes SOMAC, (digestive issues) and Creon (pancreatic enzyme).
    Because he is loosing weight I tried ensure plus as I cannot get carnation breakfast (thanks Lainy) but Ensure makes his sick. The other symptom I noticed is he always gets nausea after he eats, with chills but no fever.

    I am desperate and need help. Please advise. I am with him in hospital with limitations of using my computer but I will check tonight when I am back home.

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