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Confused, Questions posted for Sharpie102

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

I hope I'm not overstepping any boundries (well, that would be normal for me I guess - LOL) but this was added to the bottom of another thread and I thought it was important enough that it should be it's own thread.

Sharpie102 wrote:

I just found this site, and I apologize in advance for the lack of my English language knowledge. I'm writing on behalf of my mommy. Ok, so she was diagnosized in May, 2006 with colon cancer which already was pretty big (like a nice big palm of a man). So, in June 2006 she had a surgery where they removed half meter of her colon, and by the beginning of July she started chemo. (Avastin, Campto, 5-fluoro-uracyl). By the way, I haven't heard about this Folfox, and Folfiri, seems to me that some of you got this next to Avastin. (I'll check into it on the net, maybe it's just a "fantasy" name for 5-fluoro-uracyl). So anyway, her CEA went down really neat, but she continued the chemo every second week. She felt really sick because of the side effects, but she never gave up. Then in March 2008, PET showed met. on liver, at the colon, and lung. She got into the hospital for surgery, and when they "opened her up" (sorry, don't know if this the proper term or not) they didn't see any cancer on liver, and lung. However they found some more at the abdominal part, so they took all out what they saw, and then she continued getting Avastin (with the above combination). By summer, June 2008, another met. appeared, so she went through another surgery and they removed her uterus as there were met.tumors behind them attached. Then she got to continue Avastin, but by October 2008 she felt she's gonna get killed by the chemo, so she stopped. (which probably was a mistake) In November they did a scan, and she seemed completely empty. However, in December she had a very bad pain in the abdomen, so after new year, she went to hospital again. They did a scan and turned out her whole stomach is full of tumors, all met. and one of her kidney failed already, and there's no way for surgery, and no need for chemo. This shocked us a lot, and we couldn't believe that from November 2008 scan the january 2009 scan has such a large difference. Well, later turned out, that back in November they forgot to use any contrast, so of course, she seemed "empty". Now, she is here at home, no chemo, nothing. She has bad pains already, on morphine patch (150), and no appetite at all (gets nutridrink) and although I'm not a doctor at all, but I learned to give infusion, and giving her a 28 day long B17 treatment. I found out about B17 on the web, and what I read, that it helps. I don't know what else I can do. And I've got so jealous that you guys are so positive...how could I make my mommy be more positive? She sleeps most of the day, and when she's awake she cries how she will not see me finish school (I just stopped school this February, so I can help her 24/7), how she will not see me getting married, and having kids and so on. And I don't want to cry front of her because it would give the feeling for her that I gave up on her already as well. So, I cry at nights when she sleeps already, and I just can't believe that there's no way back. Do you guys think, she could still try to get that Erbitux that many of you mentioned? Should I bike to the hospital and ask them? It's so bad that they don't take me seriously at the hospital because I'm just a stupid kid....I don't know what to do, but I need some help...at least, on how I could make her be more positive...I will definitely tell all of your stories to her, maybe that will also encourage her...please respond something!
Thank you very much, and I wish you all the best to you all!
Sophie

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I am sorry to hear how hard a time you are having with this beast. You didn't say how young you are, but it sounds as though you are handling a lot for a young person. My youngest was 17 when I was first diagnosed and I know it scared the heck out of her, as it would any child! I know there are other people on here who have even younger children. Know that you are doing the best you can for your mother and that she is grateful! If your mother is in pain, she is going to cry and feel bad until the pain is under control; it's very hard to manage much of anything when you are trying just to get through the pain. Her doctors need to get her better pain management since what she has isn't doing the job! Do you have another adult in the family that can accompany your mother to the doctor's office and speak to the doctors for her? Your mother can sign papers that give another person the legal right to speak for her about her medical care if she is unable to herself. They need to insist that the doctors do everything they can to make your mother comfortable. When she has a better handle on her pain, she will cry less and be better able to handle what is going on right now. It also sounds like you need someone to help you with all this as well, it's tough for us old people to deal with and we would never want to do it alone, so don't you either. Find a close relative or friend's parent that you can confide in and let them help with the burden of all this. You are an awesome daughter! Don't hide your fear from your mother; she can see it in your eyes anyhow, and it really does make us feel better to be able to talk about what's going on; especially with our children. She is your mother and wants to care for you, but finds herself unable to and it is probably making her more sad.

FOLFOX and FOLFIRI are terms for the combination of drugs given most often to colon cancer survivors. The FOLF stands for 5FU (that fluorouracil) and Leucovorin, the OX stands for oxaliplatin and IRI stands for irinitocan (also referred to as CPT-11 and Camptosar). Your mother was on FOLFIRI plus Avastin. I have been on that drug multiples of times as well.

I understand your jealousy of how well others are doing in this battle, but remember that we are all different. But the most important thing to remember is that you are only seeing the small portion of colon cancer survivors who are doing well enough and are determined enough to come online for support. There are also care givers of survivors on here, but again, we are all the ones who are comfortable with a computer and are determined to find all the help we can get from all the sources we can get. There are many more out there who don't feel comfortable with a computer, or are just not feeling so happy about their situation that they want to come online and tell the world about it. There are local support groups that can help those people, if you can find one. However, the first priority is going to be getting your mother comfortable. Please come back often to tell us how you guys are doing, ok? I will be praying for you.
mary

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Sophie,

I'm so sorry that you are going through this. I don't have any good or easy answers for you, but here goes. First, if your mom wants to continue to fight (and it really is up to her) she can start with second opinions. She should look for a doctor willing to try. You don't mention what country you live in so I'm not sure how that works where you are. We have options to do those things in the US but it does vary by country.

Staying positive in the face of negative, well, that one is tough. We all struggle with attitude sometimes. I can only try to help from where I am and who I am. Maybe you could read to her...stories from here (if you click on our pictures you'll find our expressions pages and our blogs), poetry, inspirational or humorous books, etc. It is important that you talk to her. I know that I'm not afraid to die and don't really dread it. What I fear is the pain and struggles I'll leave behind for my husband and sons. I fight for them and their future. Your mother worries about not being there when you need her. It is more about your pain than how it effects her. She loves you and needs to know that you'll be ok. This is a time when you can share something very important but all your tears can't be alone. Be close with her now. That will also help you figure out if she wants to continue this fight and what you can do to help her to fight or not.

I truely hope this helps you some. I will be praying for you and your mother, if that's ok.
Hugs,

Kimby

tiny one
Posts: 467
Joined: Jan 2009

Sophie you sure sound like an adult and not a kid. I'm so sorry for what your Mom is going thru. I'm saying prayers for you and your Mom. I hope that there is someone near that can help. God bless.

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

Dear all three of you,

I am suprised how you all answered...I haven't even realized first, as I kept checking the thread where I left the note and didn't see any response. Then I realized this...Thank you! Well, I guess then my mom was on Folfiri with Avastin....but that didn't help. I will try to answer to your questions, sorry in advance, if I skip some, as I cannot recall them all. So, I live in Serbia and I guess things are not the same here as in the US. Mom cannot move at all, she is in bed all day, sleeping. If she's awake, she's in bed, and cries, and feels very bad. I just raised her patches today because she is still pain. I don't know, I feel so helpless, and dumb. There's no other adult in the family (dad passed away already) and the doctors don't seem to care too much. Here, luckily, we don't need any type of permission from my mom so that they can reveal medical issues...they do it without any permission...it's just that, you know, when you're not an adult, you're not treated that way either. And the couple doctors I'd managed to talk to told me that they cannot do anything, no need for surgery, no need for chemo. But I cannot believe this! And how long does she has to suffer? I am by her side all the time, and she tells me she doesn't want to live any longer as this is not life anymore. And somewhat, I understand her, as she is in pain, and sometimes I even tell myself, "let her go", but then I feel like crap because I want her to live a little longer. (sorry for my cussing) I will be sooooo alone, and I will be sooooo lost! I will not belong ANYWHERE!!!! I will be just like a stray dog...wondering around what to do next in this stupid life....anyway, I will try to do the best I can about getting rid of her pain...I guess that's all left for us.....>.<
Again, thank you for your response....I wish you all the very best!!!
Sophie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Sophie,

I'm so sorry to hear about your mom and what she/you are going through. I'm also so very sorry that you are going through this alone. Do the doctors know that you're the only one taking care of your mom? Is there any kind of home care nurse or anyone who can come to the house to help with your mom? If you haven't already, please try to talk to the doctors about that. I know it must be very hard since you are not an adult. Is there any adult at all- even a friend or neighbor or someone who can help you talk to the doctors? Do you have any relatives at all who might possibly help you or help you by talking to the doctors? You seem to be doing everything for your mom. Bless you for it, but you definitely need help. I don't know how things work in Serbia, but I'm sure hoping that they have a system that through insurance or the government, there can be extra help for your mom. Definitely ask about it and maybe you can try to research it on the internet for what your area offers so far as hospice or home health care. Also- maybe you can research on the internet- or even look up another oncologist in your area who might even be willing to come and examine your mom and her situation to see if another opinion can be given. Maybe something like that could be arranged through home health care. I really don't know, but I'm trying to think of anything that could be possible to help you with your mom.

Also- talk to the doctors and check on the internet- even go to your local hospitals and ask- to see if there is some kind of support group for YOU- a caregiver for someone with cancer. You need help and support! I'm very glad you found this discussion board on the internet- definitely keep coming here, but do try to find an actual support group or counselor or someone who can help YOU.

I will be praying for your mom and for you, Sophie. I believe in God's power and the power of prayer. I will be praying hard for a solution, for someone to help you, for a doctor who will listen and give your mom another opinion, or SOMETHING! I have stage IV cancer myself and am doing well now- I'm so thankful that my doctor did not give up on me, but chose to fight this very aggressively. It makes me sooo sad and angry to hear that some doctors don't do this, but just give up. I'll be thinking of you and your mom hoping and praying that this can turn around for you and your mom.

You take care of yourself too, and check back in with us- I care.

Stay strong- ask the Lord for strength to get through this-

Lisa

marc24
Posts: 92
Joined: Mar 2009

Hi sophie, im not a kid but i am a 24 yr old son of a cancer patient as well. My mom was diagnosed just 3-4 weeks ago with advanced liver mets colorectal cancer...over the past few weeks, i feel like im trying to be a doctor and learn everything about this disease..anything...and i am amazed at your courage for such a young age..you will definitely grow up stronger with this experience...i really dont have anything else to say but to hope for the very best to your mom as well. ..the thing i learned about this ordeal is that cancer affects all types of people and age and it is something i have a deep hatred to. My uncle has cancer as well as my aunt and she is a 5 yr cancer "survivor" meaning there is hope...HOPE is always the key and you are a brave one for keeping that..i myself sometimes doubt about alot of things, but you and me have to be strong...and my advice to you personally is also to try to take care of yourself as well as your mom....wish ur mom all the best...oh and even though i feel alot of hate inside me, i slowly realize, hate is a waste of time and i try to just use that energy to try to help my mom feel better.

sharpy102's picture
sharpy102
Posts: 370
Joined: Apr 2009

Thank you Lisa and Marc for the nice words...I wish you the very best Marc, and I completely understand what you mean when you say you find yourself having "hate" in you. I have that too occasionally, but then I realize, I have to "stand up" and dust myself off, and continue. It is extremely hard, but have to.
Tomorrow, I will go see a doctor with my mom's papers...please everybody cross your fingers for mom! I will let you all know the details...good luck to all of you, I am so glad I've found this site!
Please take care~

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Sophie,

I'm praying for you and your mom. I hope she will find a doctor who will offer her some hope. You sound like a wonderful daughter! Please let us know how things go.

*hugs*
Gail

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