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  • #60360
    pamela
    Spectator

    Hi Melissa,

    We live in Uniontown, Ohio which is about an hour south of Cleveland. So believe me, if this hospital wasn’t great, we sure wouldn’t drive that far. Lauren lives at home with us and our son, Ryan. As far as the chemo goes, I think the combination of those 3 are pretty powerful and very rough on a lot of people. Lauren might have an easier time because she is young and healthy. The main thing to remember with chemo is to keep up with your nausea meds. Lauren takes them around the clock for two days after chemo. You will probably be given Zofran and Compazine for nausea. Zofran gave Lauren headaches so she only takes Compazine. If she takes it once she is really nauseous, she will usually throw up, so take it at the first sign of nausea, not when it is full blown. With the three chemos, Lauren would feel like she was run over by a truck for a few days after. After she had 12 rounds of chemo, Dr. Z took her off the Cisplatin for a while to give her kidneys a rest. It is the hardest of the three to take because Lauren feels fine after chemo with only the other two. It also lowered Lauren’s platelet count quite a bit and she had to skip a few chemos because they were low. They have to be over 100,000 to receive chemo. The 5FU is administered in a pump that is hooked in to the port. Your Mom will wear it home for 48 hours, then have to go to the hospital to have it disconnected. It is put in a pouch that your Mom can wear like a fanny pack or over her shoulder. It is kind of a big pain for sleeping and all. Since we live so far away, a visiting nurse came out once, didn’t know how to unhook it and Lauren freaked out. After that, I asked if I could be trained to do it myself, and a nurse educator at the hospital trained me to do it and I have done every one of Lauren’s disconnects with no problems. That could be an option for you if you wanted to do that. Theraspheres is not real common. I know Dr. Sonnenday thinks it is a really good treatment option. Radioembolization is when millions of tiny, I mean like smaller than a fine grain of sand, glass beads of radiation are shot directly into the liver tumors to kill them. They are put in through the groin in an artery. Lauren had a practice run with dye on Thursday to see if she is a good candidate for the procedure. She is scheduled for the procedure on May 16. They are called Theraspheres or Sirspheres. Two different companies. They come from Canada. They are not approved by the FDA in the US. They have some promising outcomes though. Well it is getting late. I need to go to bed. Any other questions you may have, feel free to ask away. If I don’t know the answer, there are so many very bright and helpful people that will know. Take care and all the best. Maybe we will both be there for treatments one day and can meet.

    Love, -Pam

    #60359
    melissapalma
    Spectator

    Thanks Pamela. It is amazing that my mother and your daughter have the exact same doctors. Small world! Where do you live? And where does Lauren live? That is a very long drive! Maybe we can get together for a coffee or tea sometime.

    My mother is considering the same regiment as Lauren (Gem/Cis and 5FU clinical study). I don’t think my mother is prepared for how hard chemo might be. She has this idea that it is going to be mild and that she won’t lose her hair. Have you found anything to help Lauren’s discomfort during chemo outside of the drugs that are prescribed?

    Since your family is a few months ahead of us, I am sure I will have a lot of very specific questions for you because yes, you are right, in the beginning it is a lot of information to process at the same time as trying to cope with the emotional shock of it all.

    I am so glad to hear that Lauren’s treatment is showing signs of improvement, that the tumor has shrunk. I had never heard of Theraspheres. Is it a common procedure? What exactly is radioembolization?

    I am happy to meet you here and am sending you, Lauren and your family lots of healing thoughts and energy.

    Melissa

    #60357
    pamela
    Spectator

    Oh my gosh Melissa. Now I am thrilled to meet you. You live in Ann Arbor. How lucky you are to be that close to the hospital. My daughter’s name is Lauren. She just turned 26 in March. She was diagnosed on Aug. 29, 2011 after a liver biopsy ordered by Dr. Sonnenday. My daughter, Kristen, is 3rd year anesthesia resident at the hospital and she spoke with Dr. Sonnenday about Lauren and that is how we found him. He is the most wonderful doctor we have ever met. He gives us hope. Dr Zalupski is great too. It took us a little longer to warm up to him. Being an oncologist, I think they are taught to give the bad news and keep a distance. He has come around though and I really think he loves Lauren. He really cares so much about her. Lauren is doing really well. She is in a clinical study where she received Gem/Cis and 5FU. She had one large tumor and a few small tumors. The large one was the size of a canteloupe. It has shrunk at least 4 cm. The small ones have as well. We spoke with a radiologist a few weeks ago and her large tumor is now 50% necrotic (dead). She just had a mapping procedure this week to see if she is a candidate for Theraspheres. In a nutshell, this a form of radioembolization where tiny glass beads of radiation are shot directly into the tumors. If this kills her tumors, she might be able to have a resection. When we first started out, I think everyone thought Lauren’s future looked mighty grim, but with the help of these wonderful doctors, things are looking better. She feels great most of the time. Her back hurts, but that is about it. Chemo is hard on people, but she has had an easier time than most with it. She did lose her hair. Cisplatin was the hardest drug for Lauren to handle. Her platelets would go pretty low and she had to miss a few treatments because they have to be over 100,000 for treatment. She is only on Gemzar and 5 FU now because Dr. Z wanted to give her a break from it for a while. It is hard on the kidneys. If you have any questions at all, feel free. I have learned so much from this site. I felt lost when I first joined and had not a clue about terminology or anything. This site has been such a blessing to me. I hope it will be for you as well. I wish you and your Mom all the best and I can say she is in the best hands at U of M. God bless.

    Love, -Pam

    #60356
    melissapalma
    Spectator

    Pamela,

    We live in Ann Arbor so my mother is seeing Dr. Sonnenday and Dr. Zupaluski. I have been reading old posts here and see that your daughter sees the same doctors! You have said wonderful things about them both. Can you tell me more about your daughter? When was she diagnosed? Where is she at with her tx now? I am getting a crash course in cancer and am trying to learn everything I possibly can.

    Warmly,

    -Melissa

    #60358
    pamela
    Spectator

    Hi Melissa,

    I just wanted to welcome you to this site and ask you where your Mom is being treated in Michigan. We travel 3 1/2 hours to University of Michigan Hospital for my daughter, Lauren’s treatment. If you go there, I will be more than happy to tell you about Lauren’s treatment, progression, etc. We have been going there since Aug. 2011. Good luck to you.

    -Pam

    #60355
    marions
    Moderator

    Melissa…I agree with what has been said by the others. Educated patients ask educated questions – physicians welcome that. Advocating for our loved ones is a must in today’s age. It just might be that you are the strong one in the family. Please continue to reach out to the great members in this board; we are in this together.
    Hugs,
    Marion

    #60354
    gavin
    Moderator

    Hi Melissa,

    Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But you have done the right thing in coming here and you will get a ton of support and help from us all. I know that right now your head is spinning and that you feel that your world has totally changed. That is normal and we all go through that. After we were told of my dads diagnosis I felt like I had been hit in the head with a bat.

    From what you have said, it sounds like you will be the member of your family that wants to seek out as much information about all of this and your mums situation as possible. And indeed, in you coming here and joining us that also says to me that you want to find out more. As Lainy says, it is not rude at all to ask questions of the doctor and indeed your mums doctor will expect you all to have questions for him/her. I know you say that your parents and brother will probably not ask questions of the doctor, but how will they feel about tyou askin g questions?

    I understand your nervousness about the meeting tomorrow, this is common. We all get nervous before these meetings or when it comes to getting scan results etc. It does sound like your mum is in some sort of denial, but maybe her attitude will change after she hears what the doctors or onc will be doing when it comes to her treatment. It was sort of similar for me and my dad. He wasn’t the type to ask a lot of questions and would just do basically what the doctor said. So we agreed that I could ask any questions that I thought needed to be asked about my dads situation. What is a good idea is to make a list of questions that you wnat to ask and write them and the answers down, as it is easy to forget what to ask and what has been said in these meetings.

    I know that once you get more information about everything then you will have questions that we can help you with. So please, ask away and we will do everything that we can to help in answering them. Please let us know how the meeting goes and know that we are all here for you.

    My best wishes to you,

    Gavin

    #60353
    pcl1029
    Member

    Hi,
    You will get great emotional support from many other members here especially our poet,Lainy,among others,
    For advice,I am only a patient with this disease for 35 months,but since you ask for a little bit of advice :
    I will suggest the following:
    1. Ask whether the cancer is extrahepatic or intrahepatic( out side the liver or inside the liver)
    2. Ask what stage of the cancer is.
    3.ask what the oncologist or the liver doctor if this is her or his mother,what will they do ? Will they treat their mother the same as they will treat your mother? WATCH THEIR BODY LANGUAGES not just believe what they will tell you.
    And finally,
    4. Can you refer me to seek opinion on radiation oncology treatment?
    5. Is it too early to consider “quality of life “vs “quantity of life” Now.
    All the above will give you a time frame,a picture of the status of your mom’s current condition ,and most importantly, your opinion and feeling about the doctors.
    God bless.

    #60352
    lainy
    Spectator

    Dear Melissa, welcome to our extraordinary family but sorry you had to join us. Wow, you have more than your share to contend with, with everyone in denial. Sadly, to put it bluntly, without asking questions and without learning all they can learn the family will hamper your Mother’s well being and comfort. It is not rude to question a Doctor when dealing with a rare disease like CC. We always say on here that the most powerful weapon for CC is knowledge as that is about all we have. No matter what they say, I would bring a pad and pen to the meeting and make notes. Normally we would say take a tape recorder but that may freak them out. Perhaps it is a good thing they will be attending the meeting as then they are forced to listen to the ONC. Really sending you some good wishes and best of luck and please keep us posted.

    #6718
    melissapalma
    Spectator

    Hello.

    My name is Melissa (from Michigan) and my mother was just diagnosed with this type of cancer 13 days ago. It is amazing how everything in your world can change from one minute to the next with the diagnosis of cancer. Tomorrow is our first appointment with her oncologist and the second appointment since we met with the liver specialist. I am nervous for the meeting. I want to get more information but am scared of it at the same time. I think they will start with chemo and we don’t even know if the tumor is operable yet but we do know that it spread to her upper abdomen and lymph nodes. I also know that my mother does not want to talk about cancer or learn about it or ask questions about it…basically she is in denial. I want to be patient with her process but when I asked her what her goal is through this process, she said “to have a stiff upper lip”. She is the type of person who will not ask for help, who will not complain if she is uncomfortable, who basically does not believe in support. I am nervous for tomorrow.

    And while I am not happy for the circumstance that brings me to this forum, I feel grateful to meet you all and to learn from your experience and wisdom. I’d love some supportive words or advice to get me through the first meeting tomorrow. Thanks so much.

    -Melissa

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