Discussion Board Forums Introductions! First post

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  • #65348
    marions
    Moderator

    Karen…. Please know that both, depression and heart palpitations are considered side effects of Gemzar. Definitively, let your physician know.

    http://www.sideeffective.com/drugdrug/gemzar/nasonex/heart+palpitations/

    Karen, know that you are not alone -we had numerous discussions on depression and I am sure for others to come around and share their thoughts with you.

    Hang in there. We are rooting for you.
    Hugs,
    Marion

    #65347
    lainy
    Participant

    Dear Karen, thanks for your update and it looks like you are doing all the right things and are getting good care. Who would not feel a little depressed with all you are going through and you might want to ask your ONC for something to get you over the bumps or I should say mountains! Instead of full meals may I suggest grazing during the day? Quite a few of our CC patients have found grazing easier than meals. I know there is nothing tastier than homemade chicken or vegetable soup that you can grab of bowl of a few times a day. I used to give my Teddy Carnation Instant Breakfast, vanilla, blended with a banana and that has a load of nutrients and can take the place of a meal. I would ask your doctor if the chemo can give heart palpatations. Hoping for everything to start turning around for you, but please keep us posted, we truly care.

    #65346
    kaklon
    Member

    Lainy and Marion,
    Thank you for your kind responses. I had the radiological embolization at Northwestern Memorial Hospital in Chicago. My chemo is at Siteman Cancer Center, Gem/cisplatin. I’m scheduled to do another round (Day 1, 8, & 21) and then have another MRI to see how the tumors look and what should be done next.
    Although I keep trying to do the fluids (use to drink water all day by the bottle), my stomach objects. Can only eat small amounts at a time, so I try to make it all healthy, continue to take my daily vitamins as I have done for the past 30 years, and make foods that I love in order to rouse my appetite.
    We did get a second opinion at Northwestern Mem Hospital and they coordinated efforts with Siteman so that I had the embolization before the chemo. Also, had an endoscopic biopsy of the lymph node nearest the liver the day before chemo began. The samples were sent to Caris Lab in Texas for genetic profiling for possible nuclear medicine.
    Does the chemo effect the heart? My heart palpatations go on all the time. Magnesium once a day use to take care of it for me.
    Slightly depressed,
    Karen

    #65345
    tryingtohelp
    Member

    Thanks! I posted latest update under the same section…

    #65344
    marions
    Moderator

    Alla….I have responded to you in the Supportive, Palliative & Hospice Care of our site.

    Hugs,
    Marion

    #65343
    tryingtohelp
    Member

    Well, talked to the doctor this morning. He recommends hospice with pain management only. He says he’ll probably have 1-2 weeks without nutrition. I asked about TPN – he said it will add few more weeks, but most likely will have vomiting daily. He said he himself would have chosen hospice to reduce suffering. I didn’t talk to my husband yet – what he’d want. I still think TPN would be the way to go and if it gets to unbearable point, then go with hospice.
    Marion, how long did it take for your husband from the point they offered hospice (and he refused) till passing?
    About the whole handling the situation – in nurses defense, I was pressing for information and they told me what was in doctor’s notes. And since I’m working full time, I wasn’t able to be there when doctor was. But he called me this morning and explained most of it. Of course now I have more questions…

    #65342
    marions
    Moderator

    Alla… My husband refused to have Hospice involved in his care. He wanted to live and to him Hospice represented the opposite. It was not until the very last afternoon of his life when I was unable to control his vomiting that I called in Hospice. Yes, Alla, the TPN pump was replaced with a morphine pump; the same line was used. I promised him to replace the morphine with the TPN pump in the morning, but never had the chance to do so.
    Alla, you do not have to take Marty (Marion) home. At this point you are unable to care for him. I know how tough this situation is, but let’s see what tomorrow brings.
    Hopefully Marty is able to handle the liquids and possibly is able to digest solids also. It truly is one step at a time.
    Hugs,
    Marion

    #65341
    lainy
    Participant

    Dear Alla, the mother bear in me is coming out now and I am a little upset to say the least at how the ONC and Nurses handled this. The talk of Hospice should have come from your ONC! He should have come in the room, sat down and explained everything to you both. This was unacceptable as far as I am concerned as he needed to explain why he is saying what he is. When is the ONC supposed to come see Marty? I don’t know if it will do any good but I would let them know you cannot take Marty home until you have both talked with the ONC! If necessary talk to a Social Worker at the hospital. Above all, be very strong!

    #65340
    tryingtohelp
    Member

    Thank you, Lainy, for your email – appreciate the information.
    Marion – since your husband was on TPN, did you use hospice at all? If yes, did they allow use of TPN? By the way, my husband’ first name is Marion (family name), but he goes by Marty…
    Still haven’t heard from the doctor, but the nurse said that doctor had wrote in the notes that he advices discharge home with hospice. My husband’s reaction to it was – “Doc had given up on me”. I was at loss for words…
    Currently they disconnected the NG tube, while still leaving it in the nose/throat, to see if his bowel would start working. My understanding, that they will slow start introducing clear liquids to see if he can produce stool (sorry for details…).
    Since I haven’t talked to a doctor and don’t know any details of the scan and what is his reasoning is, I only can say this for sure – I can’t agree for sending him home with hospice, if there is no TPN and his bowels are not working. In my mind it’s sending him home to starve to death. Am I overreacting?
    Just want to hear some opinions… Thanks again, Alla

    #65339
    lainy
    Participant

    ALLA, I just e mailed you.

    #65338
    tryingtohelp
    Member

    Thank you all for your support. We are still waiting to find out what is next. Surgery is definitely out. Oncologist is coming back only tomorrow morning, but “might” call me tonight according to the nurse. So nothing is being done, other than continue TPN and NG tube. Getting confusing information from different people – husband said that oncologist wasn’t talking about hospice with him at all, so why nurses asked us about it? Case manager from hospital asked me today if we are planning on him being discharged home. She checked doctors notes for me and said there was a note about him having feeding tube. Even more confused – if they can’t do surgery, how would they do feeding tube? If he goes to hospice – they don’t do feeding tube. Plus
    if his bowels not working, where would the food go? Mixed messages… Hope doctor will call me and explain!
    Lainy, wanted to ask you, when you were on your “second honeymoon”, was your husband able to eat ok? Did he have good days? What was his cancer marker when he started hospice?
    Thank you all!

    #65303
    marions
    Moderator

    Kaklon…welcome to our site. We have numerous discussions on in regards to ports. You can read up on some threads by clicking on the below link:
    http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7796
    I don’t recall anyone discussing the issue of sleeping on the tummy, but am hoping for others to chime in and help you out.
    I think that the most valuable testimony comes from those with first- hand experience; you will find plenty of that on our site. Make sure though and discuss everything with you physician.
    Kaklon, it is understandable that you are confused. The diagnoses of this cancer in addition to the embolization and the treatment with chemotherapy are difficult to comprehend. Hang in there; you too will adapt.
    But you must have nutrition. In order to raise your caloric count it might help to introduce nutritional shakes or, if possible, enlist a nutritionist . Are you drinking tons of liquids? Another “must,” as it will help flush the chemotherapy through your system! My husband loved the various flavors of Gatorade.
    Kaklon, please continue to reach out to the great people on this site. We are in this together.
    Hugs,
    Marion

    #65337
    lainy
    Participant

    Dear Kaklon, welcome to our extroadinary family but sorry you had to find us. My husband never had chemo but did have a port for blood draws as he had an ecoli infection. They put it high up on his back near the shoulder. Never had a problem with it. Not sure where they put it for chemo. The no appetite, fogginess, insomnia need to be discussed with your ONC as there are RX he can give you. May I ask where you are being treated? Try to read up as much as you can as knowledge is our most valuable tool. We are also believers in 2nd and 3rd opinions. Please keep up posted as we truly care.

    #65336
    kaklon
    Member

    Hello! I was diagnosed with cholangiocarcinoma at the end of August. First I had a radiologic embolization of the largest tumor, which is in the left lobe of my liver. September 21st I began chemo, cisplatin & Gemzar. This is my first post, although I’ve read some of the others posted. Have many questions, but feel very disorganized. Wondering how many people have had an IV port inserted for the blood draws and the chemo treatments. Are there problems with it? Is it difficult to keep up? Does it effect your sleep? I sleep on my stomach. Also having trouble with no appetite, fogginess, headaches and some insomnia.

    #65335
    kmwmsm
    Participant

    I really hate to hear all of this. My prayers are going out to you and your family. You are not too far from me and I went through a similar situation 2 years ago with my husband. Thankfully we caught his in time. If you ever need someone to talk with just call 540-616-6960. I have been in your shoes with little children too. We live in Pulaski. I will help you through as much as I can or just listen if need be.

    Kristi

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