A Little Lost but Trying to Find Our Way.

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  • #39617
    christine4
    Member

    Marions, thanks for the link and I will do the search. My Mother is making the appointment today. So, not sure, until I talk with her later today.
    Somebody told her to use those stocking you get in the hospital after surgery. She threw hers out. I have a pair, from when I had my gall bladder taken out this past October. Do you think this is a good idea? You use them after surgery to help from getting blood clots, but what about the swelling? Would the stocking, cut-off her circulation? I just don’t know? Let me know your thoughts. Thanks!

    Christine

    #39616
    marions
    Moderator

    Christine….there is a connection with blood clots. Here is a link: http://en.wikipedia.org/wiki/Trousseau_sign_of_malignancy
    Generally, patients are treated with blood thinners. There also are several postings regarding blood clots and CC. You may find the info by using the google function, top, right hand side of page.
    When is the appointment for the ultrasound?
    Best wishes,
    Marion

    #39615
    christine4
    Member

    Gavin, thanks for the links. I googled contrasts and found a few more links. They are basically the same information. Helpful and informative. I appreciate your posting the above links.

    Kimmie & Marions, thanks also for your insight and suggestions. I will most certainly pass them on to my Mother. Hopefully, she start feeling better with her leg pains.

    I told her, that she needed to elevate her legs more often. She tends to sit at the kitchen table most of the day. I suggested, she use another chair or the very least a step stool to elevate her legs while sitting. She said, she would do so. Again, hoping this helps bring the swelling down a little faster. She did tell me, that the doctors wanst to do a Ultrasound on her legs, just to make sure there are no blood clots causing the swelling. She has this done, toward the end of this week.

    Has anybody else, experienced swelling of the legs cause by blood clots? If so, what did they do to solve that issue? Just curious?

    Christine

    #39614
    marions
    Moderator

    Christine…..You definitely will have to run this past the physician however, Bennadryl or Claritin appears to help eliminate the bone pain caused by Neulasta (Pegfilgrastim). As Kimmie has mentioned, in many instances the bone last for 3 to 4 days only. Others have had good results with Tylenol.
    I hope this helped. Your Mom sounds lovely as do her children.
    Best wishes,
    Marion

    #39613
    gavin
    Moderator

    Hi Christine,

    Here are some links that may help you with your questions regarding contrast.

    http://www.imaginis.com/ct-scan/information-about-intravenous-and-oral-contrast-used-in-ct-1

    http://www.e-radiography.net/contrast_media/ct_contrast_agents.htm

    I hope these links help. And yes, supportiveness does indeed give strength and laughter goes a long way in helping us all with our struggles!

    Best wishes to you and your mum,

    Gavin

    #39612
    kimmie
    Member

    Christine, I’ve mostly been a lurker for over a year, since my mother, age 63, was diagnosed in May of last year. But I just HAD to respond to your post. In addition to my mom’s CC, which has just returned, we are also dealing with our father, age 69, who has dementia. My sister and I would not be able to make it through all this without each other, and we say that all the time. We are a close family, geographically as well as personally. And laughter has always been a huge part of our lives. It’s so important to my family, and your family, that we are close, isn’t it? And that we can laugh when we need to, even in the face of all we’re dealing with.
    My sister and I both are self-appointed Research Queens. It’s good because she’s a hospice nurse and used to be an oncology RN, so when I read something I don’t understand I can ask her. I started a binder last year where I take notes at every appointment and keep all Mom’s bloodwork, scan results, reports, etc. My mother jokes that I should be given an honorary medical degree because I’ve learned so much!
    BTW, not sure about the leg swelling, but my mom had lots of bone pain when getting neulasta (I think hers was neupogen – same thing?) They started giving it to her I think by her 2nd or 3rd chemo cycle because her blood levels were going way too low. She said her joints felt as if she had the flu. She took tylenol to help relieve. It usually started a day or two after the shot and lasted about 3-4 days.

    #39611
    christine4
    Member

    Thank you, Lainy, Marions, Jemima and Gavin, for the warm welcomes and much needed advise. I’m glad that I finally posted. I have so many questions and I see that you all have questions for me too. So, let’s get started. :)

    I talked with my Mother, asked if they were documenting each doctor visit. She said, my sister took notes and used those to relay the information to the rest of us. She doesn’t know if she notebooked them or threw them away. My sister, was gone for the weekend, mini vacation. I talked with her this weekend, but thought best to wait for her to be home to talk about the notes. I believe note taking is important but recording the visit is the best idea. You can always take the recording and document them later, so you can visual review them at later dates. Great idea, everybody should practice this idea. Feel silly for not thinking of this idea. Sound advise and Thank You!

    My Mother’s Oncology doctors are Dr. Michael Gu, M.D., specialize in internal medicine and oncology. Dr. Eddy C. Hsueh, M.D., specialize in surgical oncology and chief of the division of general surgery at Saint Louis University School of Medicine. Both doctors are at St. Anthony’s Medical Center – Cancer Care Center, St. Louis, MO. My Mother has two appointments with both doctors the week of July 12th. She is anxious, she wants to know what are the next steps. She said, ‘I feels like I has been in Limbo, these past six months. I’ve played their part of the game and participated well, now they need to move to the next game plan.’ Dr. Hsueh will tell her whether they will do the surgury or not. My Mother says, ‘They better at least take out the offender, the gall bladder. After all this was the beginning of my problems.’ She knows that more is involved than the gall bladder, but she see the gall bladder at the messenger. ‘Shoot it.’ She’s a Hoot! My Mother will have a break, a fiesta, she calls it, from chemo and tests for about two weeks, before her doctors appointments. She is very happy for the break and enjoying it.

    As for as the second opinion and getting her records. I feel at this point, we should wait and see what the doctors will say, with the upcoming appointments. If, we are not happy or uncomfortable with the decision they have made, then getting her records and second opinion are warrant at that time. If we continue with their recommendation, then retrieving the records to better understand her situation would be best for all of us. Again, both sound advise and plan on acting on these suggestions. Thank You!

    My Mother has experience the leg swelling, discoloration and pain, throughout most of her chemo therapy. Is this a normal side effect? Her thoughts that the swelling in the legs may be from the contracts with her CT scans and MRI. Can the contracts cause these type of side effects? I thought, contracts was a temporary solution that flushes out of your system within two days. Not sure, I told her my thoughts and suggest she drink alot of water to help this process. Hope this was right, but then again water is always good, no matter what. Dr. Gu put her back on her water pill (diuretics) when the swelling first started. The water pills didn’t show much change. She gets her legs elevated a little each day, but I’ll suggest doing more so than she already is. She also experiences alot of pain in her legs. This may be the answer from Marions on the Neulasta causing bone pain. Is there anything to do about that?

    Just a funny story to end this post with. My sibling and I have had our moments with dealing with my Mother’s ‘mishap’ as she would call it. We have shared all our feelings together. Whether we were having a cry jag, angry about ‘why her’ or just being a sounding block for each other, we have done it together. Well, one evening, my sister and I were talking on the phone, about our Mother.
    Praising her. How well she is do, what she has been through, how great her attitude has been. We talked about when we were little and the thing our Mother would do for us. How supportive caring and loving, she was for all of us and still is. Several stories of funny stuff we did to her and her to us. And on and on we went. Of course, we were next talking about what will we do without her. My sister, at this point says, ‘She’s been a good old gal!’ I responded, ‘What are you ready to put her down? Where did ‘has been’ come from? But yes, she’s a good old gal.’ We got a little more sillier about our ‘good old gal’ we were cry laughing. Before the the conversation was over, we decided that it was best Mom did not know about this conversation, didn’t want her to take it the wrong way. So, a day or so goes by and out of the blue my Mothers says to me. ‘You know Christine, I’m a good old gal. Did you know that?’ (Shocked! Mouth fell opened, thinking I’m going to get my sister for this.) ‘Yes, Mother, I knew that.’ Then she laugh at me and walked away singing, ‘I’m a good old gal.’ That’s my Mother. Now I’m hearing everybody in the family referring to my Mother as the’good old gal’. Play and Laugher!

    Knowledge is important and can empower you. Supportiveness gives strength. Play and Laughter will get you through your struggles. Those are our goals for my Mother. After all, who taught us this in the first place? Our Mother!

    Christine

    #39610
    jvega2010
    Member

    Hi, my name is Judy and my younger sister, who turned 40 this past February was diagnosed with advanced cc June 14, 2010. Growing up in a family of 10 kids is great but we are on the verge of losing a 2nd sibling within 5 years, both under the age of 46. My older brother was a testicular cancer survivor only to lose the battle with complications with a kidney transplant 4 years ago.

    I am writing because I am concerned because of the length of time they gave my sister to live, 6 months, and because the cancer has completely covered the left lobe of her liver, she has tumors on the right lobe but the right lobe has expanded to compensate for the loss of the left lobe, and the cancer has spread to her lymph nodes. She will begin her chemo treatment of gemzar and another chemo which I am not familiar with, this coming week.

    I will be with her for her 1st treatment and was wondering what I should expect. Is there anything I can do to make her more comfortable?

    She is definitely a fighter and she will not take any of this lying down. The day she found out she called a family meeting and told all of face-to-face. The next day she invited her friends over and told them face-to face. We are all helping her get her affairs in order so all she has to worry about is fighting and living. She is the most positive person I know. She is not afraid to talk about it and welcomes any advice she can get her hands on. It is all about surviving. I was the one crying and she was consoling me?

    I am still in shock and at times it doesn’t seem real. I am so glad I came to this sight because it has given me more hope that my sister can and will live past the 6 months she was given.

    I look forward to reading more success stories and welcome any advice on what more I can do to help her through this.

    #39609
    gavin
    Moderator

    Hi Christine,

    Welcome to the site, although I am sorry that you had to find us. But I am glad that you have joined us all after viewing the site for these months. There is not really much that I can add to what Lainy, Marion and Jemima have said to you, but I just wanted to join them in welcoming you here.

    And no apologies are needed for the length of your post. Please feel free to write as much as you want and to ask any questions that you can think of, and someone will be able to help you. I am very happy to hear that your mum is in fighting mode and this is indeed the best mode to be in! And it is also great to hear that your mum has such a great family as this and the support that you will all give your mum will be so important to her. I was my dads carer during his fight with CC and you are right in that sometimes it can all feel very overwhelming with all the docs apps, researching stuff that is new to you and just in general dealing with everything. But you are doing everything right in coming here, researching and asking questions about CC. As Marions said, knowledge is power.

    My dad also suffered from swelling in his legs but that was not chemo realated and he used to spend a lot of time when he was sitting with his feet up and this seemed to help him a bit. I hope that you keep coming back here and keep us up to date with how your mum is doing.

    My best wishes to you and your mum,

    Gavin

    #39608
    jemima
    Member

    Hello Christine and welcome to the website officially ! You have been on here longer than I have but it is such a great place to get information and support that I couldn’t help diving in straight away.
    What an amazing woman your Mum is to have such a great attitude and to be surrounded by so much family. My mum was diagnosed in Feb 2010 but has not yet reached the angry/fighting stage which I would so love her to have. She has been such a strong person all her life but this seems to have beaten her at the moment.
    I am sure it will come eventually and in the meantime she has family and friends who are fighting for her. Especially me as I am closest to her physically (only 500 yards away !).
    As the others said getting a tape recorder so that everyone can hear what the doctors say about your mum would be a great idea. Whereabouts are you and who is your doctor ?
    Ask as many questions as you can even if they sound basic. I got the doctor to draw diagrams and things so that both Mum and I could understand where things were and what is going on.
    Have they said no to surgery for the tumours ? You mention her gallbladder. It is always worth getting a second opinion or even third (it’s what we are doing) if you want to go down that route.
    best wishes to you, your mum and your family
    Jemima

    #39607
    marions
    Moderator

    Dear Christine…..I love the little jumping jack next to your name and would like to follow Lainy in welcoming you. You must have already read our welcomes to new members. I won’t repeat it, but will extend the very same to you.
    I believe strongly that you need to question the doctors. Also, you are entitled of copies of all medical records including, blood tests. scan reports, surgery reports, etc. You may request such and you may consider another opinion from a physician “very” familiar with this cancer. Knowledge is power and that knowledge will allow you to make informed decisions.
    Is the swelling of the legs addressed? You might already know that diuretics have shown to be helpful and raising the legs for several hours per day may be beneficial. The Neulasta can cause bone pain; something else you might want to keep in mind.
    The fact that your Mom has such great attitude and 6 incredible children by her side makes for a good situation. She must be so very proud of you.
    As Lainy has mentioned, writing notes and even recording the sessions with the physicians will be of great benefit for future references.
    Also, I love your long post and I congratulate you on reaching out to the members of this site. As you have noticed already, we are quite a group consisting of some of the greatest, most compassionate, and caring individuals. You are in the right place. Please, continue to put out your question as there is always someone ready to respond.
    Best wishes are coming your way,
    Marion

    #39606
    lainy
    Member

    Dearest Christine, welcome to our wonderful family! I LOVE your family. Wow. That is how a family should be and the way you all attacked this CC is excellent!
    It is not uncommon to have chemo before surgery. I do have a suggestion that your sister write all her questions down and then take a tape recorder so the family can hear the answers. And yes the questions that should be asked are the ones you mentioned. At this point I don’t know what else to tell you, you ahve come such a long way in such a short time. Can you tell us where mom is being treated? You will be so happy you posted as I know you will get some great help here by very caring and loving people. This site is a Miracle in itself. I am so looking forward to your next post.

    #3735
    christine4
    Member

    Hello Everybody! =)

    I don’t know where to begin. I have been viewing your website for the past six month. You have a great thing going on here. Very compassionate and supporting. So, I have decided to finally post. This is Hard!

    My Mother was diagnosis with cc in January. She went in for an outpatient surgery to have her gall bladder removed. The doctors pulled out of the surgery and told us, she has cc, a very aggressive cancer and she had 6 months to 5 years to live. What a Shock!
    She went through all the emotional stages a person goes through after receiving this type of news. Disbelieve, Shock, Upset and Angry. Angry mode put her in a fighting mode. This mode is our favorite mode. It isn’t just an angry mode, it has been ‘Oh no, I don’t think so,’ mode. She went from ‘I am not going to fight this and be sick with Chemo’, to ‘let’s get started and I’ll tell you when I am finished.’ She is so strong and my God funny! I tell her, ‘Mom, I want to grow-up and be just like you.’ Her response, ‘Goodness Christine, your 49, when will this happen, I’ll want to be there?’ And we laugh!

    So, the rough journey begins. Since January, she had a drain tube inserted after her first surgery, which she accidently pull out about a month ago. The doctors weren’t too concern about that. She went through the endoscopic procedure. She has had 3 CT scans and has gone through two different types of chemo therapies. First set was 7 days pills, 7 days off, three sets (xeloda). Nothing changed much. The next set was once a week chemo (gemzar), followed-up with a shot the next day (neulasta). Her side effects from chemo have been three things, tried, cold sensitations and swelling of the legs. But she is doing great. I am so proud of her. What a trooper. She just keeps on smiling and laughing at this situation she is in. She just had a MRI done, which show no growth but no change in sizes either. She is now waiting to find out if the doctors will do surgery to remove the gall baldder and whatever else. Now, I know this sounds like not much information, but this is what we know. This is why I have been on your site reading and researching for six months. I have become the coach, with my hands tied. Researching alternative treatments, what type of chemo people are taking, the different type of treaments, doing comparison from your stories to what my Mother is going through and on and on. Quite overwhelming at times, I must say.

    See, my Mother is 73 years old and has six children, I am number four child. Proud to say. We all have been helping my mother along, this past six month. My oldest brother and younger sister goes to the doctor appointments with my Mother. My sister also, takes her to chemo and may on occasion stay over night with her. They are the best of friends, which is great. I take her to whatever appointments, they can’t take her to. I have also been the research ‘queen’. (This is how I found this website.) I need information about what we are dealing with and the doctors, don’t say much. Because I don’t have the opportunity to go to the doctors with her, I get the information from her and my sister. I tell her what type of questions, to ask and to get more information. We are totally not sure where the cancer is located, size, what stage she at, etc… Told her to get the spelling for the type of cancer she has from the doctors – Cholangiocarcinoma. Where was it located? Two growth on the back of the gall bladder, resting against the liver and one attached to the liver duct. The doctors just don’t tell her much of what is going on. The doctors wanted to do chemo to shrink the growth before doing surgery. So, that is what we know and where we are at.

    We just have so many questions, don’t know what is right for her. I have been telling her as much as I can and what I have learnt from your website and others. We just feel a little lost and are trying to find our way.

    That’s our story and we’re sticking to it. Sorry for the long post.

    Christine

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