• Need help

    Asked by Vivien on Tuesday, February 18, 2014

    Need help

    My husband was just diagnosed and I am lost

    15 Answers from the Community

    15 answers
    • MelMom's Avatar
      MelMom

      I am so sorry and understand how you feel, I don't have Pancreatic cancer but Leukemia, but when you have cancer it's cancer and knocks you to your feet. I had to slow down and take things one step at a time and realize that there are things that can be done. It's not always the end of the world. Start getting organized, get a diary to write down everything, especially the questions you will want to ask your doctors. I always think of these at night, not when I'm sitting in front of the doctor, so writing them down helps. If you have family or friends around, go ahead and put out the call for help when it's needed. Let them know that you don't know what or when it will be needed, but could you count on them when the time comes. It's better than waiting until you do need them. And you will. Ask any question you need here, these great people have been a big help to me, just from me reading all the conversations, I don't ask much, but I learn from others. Give some details too, what stage is he, what has been done, what's the prognosis if there is one yet, etc. I for one, wish him and you both the best!

      about 7 years ago
    • Vivien's Avatar
      Vivien

      Thank you so much.. It is my husband that has been diagnosed and I am so lost.. I have diaries, keep track of his meds and fluid intake etc.. I'm a list maker.. but the doctors talk to him and not me and he forgets. The doctors say stage iv pancreatic and liver cancer.. This is his first week of chemo and I expected him to be tired..but I feel so helpless..

      Bless you MelMom for your response

      about 7 years ago
    • FreeBird's Avatar
      FreeBird

      Hi Vivien. I was a caregiver for my dad, who had pancreatic cancer that spread to his liver. If you have any specific questions, this is a good place to ask where everyone can see it. I was with dad when he received the news in that little exam room in 2012, and at that time I was just as lost. It was a long ride home. So I read everything I could get my hands on, and carefully kept notes. What I did was I made a notebook where I put all of the information in one place, including a calendar, lists of questions, doctor phone numbers, medication lists, and any information I might have needed if we went to the emergency room, hospital, or other facility. any copies of lab reports that show how the blood is doing through chemo, radiology reports that show the results of scans, and pathology reports that show the results of a biopsy.

      For general information on pancreatic cancer, the National Cancer Institute has a good page http://www.cancer.gov/cancertopics/types/pancreatic

      The Pancreatic Cancer Action Network can be a helpful resource, and they have one-on-one support available by telephone or email www.pancan.org This is a good place to ask about what doctors in your area might be good for a second opinion. They have some survivor stories too.

      The Lustgarten Foundation for Pancreatic Cancer Research has an informative booklet with nice images to help understand what's going on in there www.lustgarten.org Somewhere on their site, they also had a list of resources if they still have it.

      Best wishes to you both.

      about 7 years ago
    • FreeBird's Avatar
      FreeBird

      ....and the American Cancer Society http://www.cancer.org/cancer/pancreaticcancer/index

      What chemotherapy are they giving him? Do you know the name of it?

      about 7 years ago
    • Vivien's Avatar
      Vivien

      FreeBird

      thank you for your response , he is on carboplatin and etoposide but I don't feel they are addressing that he has a very difficult time swallowing fluids. Have been in twice in 2 days for dehydration, he is very yellow and yet they order more tests where he has to fast... What am I missing here?

      about 7 years ago
    • FreeBird's Avatar
      FreeBird

      If he is yellow, this may be a blockage of the bile ducts or biliary tree that drains bile from the liver into the intestines. He may get itchy, and his stool may be pale. Did they mention that?

      With those drugs, it seems your husband may have a different form of pancreatic cancer than my dad had. My dad did have difficulty swallowing at some point. He would throw up after drinking, Sometimes, it was clear. What was happening some of these times apparently was that the fluid was going towards the lungs instead. The doctor suggested trying thicker fluids, and that these may be easier to swallow. That may be something to ask the doctor.

      about 7 years ago
    • geekling's Avatar
      geekling

      Sometimes jaundice takes a while to resolve. The first link explains how it can happen and the second link bespeaks of what might be done about it:

      http://pancreaticcanceraction.org/pancreatic-cancer/symptoms/jaundice/

      https://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/symptoms/jaundice.php

      I think you need to go with to the doctor. I think you need to ask questions. If the doctors speak "over your head" (sometimes they try to give you gobbledy XXX in Latin or medical terminology with which you are unfamiliar) simply stop them and ask that they use lay terminology. In truth, this is a good way to determine the quality of your hubby's doctor. If the doctor is unable to explain to you in terms that you can understand, it is likely that the doctor doesn't understand what he is talking about any more than do you.

      When a doctor gets ahead of me, I interrupt and say "Big word, I don't know it. Please use lay terms.". When the doctor has finished explaining, I try to repeat back what I've heard or use some analogy which has come to mind The last time I spoke to a doctor about something complicated, we wound up talking about train stations (the host body) and passengers (virus) because that was an analogy we could both picture and each understand.

      Simply ask the doctors if they need to find a surgeon to address the bile obstruction issue.

      Don't be lost. Be an advocate for your husband who is the patient.

      Best wishes to you for strength to get on with this and to your hubby to get past this illness and on with his life.

      about 7 years ago
    • geekling's Avatar
      geekling

      Hmm. . that XXX would be covering the g o o k after gobbledy.

      about 7 years ago
    • ajf's Avatar
      ajf

      Vivien, it is a brutal process and I am sorry you are going through it! Since your husband will be starting on chemo soon, I would start by giving him vitamins and minerals that forify the immune system and maximize the impact of the chemo. I have been taking my Mom to an acupuncturist that works mostly with advanced cancer patients. He does acupuncture, prepares teas to fight cancer and other forms of Eastern medicine. My Mom's symptoms have improved so much from going to him. She has less edema in her legs and less frequent/ violent ddiarrhea. His name is Bo In Lee in Jamaica Plain, Ma. The acupuncturist has helped troubleshoot her symptoms better than her oncologist. Just some things to consider. Thinking of you and your husband and sending positive thoughts!!

      about 7 years ago
    • country's Avatar
      country (Best Answer!)

      This post is just to let you know I know how you feel and will keep you and yours in my daily prayers,My husband also has pancreatic cancer, Many understand what you are feeling, Free Bird gave excellent advice and you will not feel so helpless in his care!

      about 7 years ago
    • Marichela's Avatar
      Marichela

      My little monsters are located in those areas too plus on my kidney.I was jaundice, I had a bilirubin wire to drain it, now I have a stent, I had 3 surgeries, one was an emergency one that I got my colonstomy bag, radio, chemo by the 3rd time . All this in 2 years & continue the good fight!! Well, it's a roller coaster of emotions, now, let's see what's the doctor say, surgery, chemo, radiation, maybe side effects . Maybe your hubby will get the port to get the chemo which is the best way to avoid the needles on his skin.Also, ask to doctor for the pill Creon to get enzymes for his pancreas & do the digestion better.The important thing is your hubby is a soldier now in this new war, he must be brave, keep his good spirits high & the family & friends must give him a lot of support. Tell him that this is not his & don't want it. Keep the faith & trust in the Higher Power.

      about 7 years ago
    • Vivien's Avatar
      Vivien

      Country, Thank you..It's like I have become a non-entity. Doctor and what I call the practicing (still practicing?) nurse she's a nurse practitioner is a bit too flighty for me . Yes my husband is 67 we have been married for 40 yrs. He has always been strong, it is very difficult to watch him go down hill so fast. I am trying to be strong but my faith in the medical community is fading fast. They do not live in my house and have no concern for the hour to hour...sorry just need to vent

      about 7 years ago
    • country's Avatar
      country

      Sorry to say I agree with you , although not everyones experience we have been promptly dismissed from our frequent $100 visits, Not a lot of compassion, For insurance reasons we are stuck!, I am an RN which makes it harder for me ,
      Do not be sorry, This is your husband, I would try to find a local cancer support group just to find names of doctors who are more supportive ,and maybe switch , I often think how much easier this would be if I felt the office cared about their patients. So keep looking, and ask your doctor about trials at the national cancer institute,
      Anytime, we are all in this together one way or another!
      Country

      about 7 years ago
    • dianep's Avatar
      dianep

      Viven, I am also in Wisconsin and living with Ampullary Cancer. I am not sure where your husband is going for treatment, but Froedtert has a Pancreatic/Billary duct cancer program that is very good. Hope this helps.

      about 7 years ago
    • Vivien's Avatar
      Vivien

      You are all Great! Comforting too. My wonderful man is going to the cancer center in my area which is a part of Froedhert. Lost it with his nurse practitioner today... Let me know what is going on and when I have a question answer me..I am the link and not stupid! Felt like a " B" but also better after I let her know. Thank you all for so much support...

      I wish each and every one of you a good day, a deep breath and love.....

      about 7 years ago

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