Starting treatments again

colon2
colon2 Member Posts: 183
edited March 2014 in Colorectal Cancer #1
Well it has been a while since i last posted anything. During that time they sent me to have the port declotted, twice. Nothing happened. They still could not get blood from the port. So the onc. said it needed to come out because of the possobility of the chemo not all going in and that it could get into surrounding tissue. He wanted them to take that one out and put in another one. I get an appointment to see surgeon and he says the port is fine. Leave it alone. That sometimes you just can't get blood from them. Anyway I had a month off almost . I must admit that physically I feel better. Emotionally is another case though. I had mentioned before that my mother started Hospice at home because her cancer had come back and become aggressive. She lived with us. Well basically she decided it was time to go home and she stopped eating. I could not get her to eat anything. She would drink a little ensure when she took her pills, but that was it. She passed away on may 24. I truly believe she is in a better place , but I sure do miss her. She was my best friend, and a GREAT MOM.
I started chemo again today. # 7 of 12. They gave the oxy thru an IV in my hand because they say if there is a problem with the port, this would be better. Then they hooked up the 2 day infusion of 5FU thru the port. So far no side effects except the cold sensitivity. Anyway. I just wanted to say I'm back and I hope everyone has been doing ok.
God Bless ,
carletta

Comments

  • SandyL
    SandyL Member Posts: 218
    #2
    So sorry about your mom
    I know what a drag the treatments can be, especially with what you've been going thru with your mother. Again, please know that I will be remembering you in my prayers.

    My husband is going for his #12 next Tuesday and we can hardly wait. I'm sure that you are glad that you are more than half way now,too. Keep your chin up and know that we are here for you. BTW, just wondering if you get the jaw spasms with the Oxyaliplatin infusion. He gets a severe pain in his jaw when he takes his first bite at meal times. Weird. I guess everyone doesn't get that jaw thing, but he gets it whenever he has the Oxal.


    Stay strong-
    Sandy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #3
    I'm so sorry
    I'm sorry to hear of your mother's passing. That has to be so hard on you. You are dealing with so much at one time.

    Is there anyway that they can test your port to make sure that you are getting your infusions like maybe putting some dye in there and watching it with an ultra sound or something. I guess I would get a second opinion of the surgeon saying that all is ok. It's not his treatment that might or might not be getting into your system. You might want to ask your oncologist what they think about seeing if the port is open.

    I know your mother is in a better place and now out of pain. You take care of yourself and good luck with beginning your treatments again.

    Kim
  • Nana b
    Nana b Member Posts: 3,030 Member
    #4
    Hands up!
    They have probably already tried this.. but the ony way I can get blood drawn from my port is for me to be lying back on the relcliner with my hands up and back along my head. Just an FYI
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #5
    Hi Carletta
    Sorry to hear about your Mom.
    As far as the ports go, sometimes that just happens. Mine lets fluid in fine but I sometimes get blood back, sometimes I don't. There a a flow study they can do that will determine if it's working or not. It's different than just unclogging it. I'm surprised they didn't do that (or maybe they did?) The other doctor who said it's fine sounds more in touch than the other one does to me.

    Any break is usually welcomed, it kind of stinks to go back but you are more than half way there. Hang in there, keep up the great work.
    -phil
  • VickiCO
    VickiCO Member Posts: 917
    #6
    Carletta
    I ma so sorry you lost your Mom. It sounds as though she knew it was time, even if it's hard on those left behind. My heart goes out to you.

    As I told you before, when I had trouble with my port, my doctor insisted it be changed. My surgeon (not the one who put it in wrong) agreed and he changed it when I had my resection. What a difference! The nurses all were happy, as I have no problems now. I don't even feel the needles going in or out. Just a thought...
    Many hugs for you....Vicki
  • colon2
    colon2 Member Posts: 183
    #7
    SandyL said:

    So sorry about your mom
    I know what a drag the treatments can be, especially with what you've been going thru with your mother. Again, please know that I will be remembering you in my prayers.

    My husband is going for his #12 next Tuesday and we can hardly wait. I'm sure that you are glad that you are more than half way now,too. Keep your chin up and know that we are here for you. BTW, just wondering if you get the jaw spasms with the Oxyaliplatin infusion. He gets a severe pain in his jaw when he takes his first bite at meal times. Weird. I guess everyone doesn't get that jaw thing, but he gets it whenever he has the Oxal.


    Stay strong-
    Sandy

    jaw spasms
    I haven't gotten it yet this time, but yes i did have it before. It feels relly wierd, luckily it only lasted 1 or 2 bites.Yes I can hardly wait for #12. I'm gonna have a Party.
    Carletta
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Carletta,
    I'm so sorry about
    Carletta,

    I'm so sorry about your mom. I'm sure you miss her so much.

    It seems really unfair that you have to deal wiih your grief and have to go through so much drama over yoru port at the same time.

    I'll be praying for you.

    *hugs*
    Gail
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    tootsie1 said:

    Carletta,
    I'm so sorry about
    Carletta,

    I'm so sorry about your mom. I'm sure you miss her so much.

    It seems really unfair that you have to deal wiih your grief and have to go through so much drama over yoru port at the same time.

    I'll be praying for you.

    *hugs*
    Gail

    Welcome Back Carletta
    Sorry about your Mom, I understand......Good to have you back in here and your over halfway done...Keep the chin up girl.....Hugs and Prayers.....Buzzard
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #10
    so sorry
    Carletta,
    I am so sorry about the loss of your Mom. You have a lot you're dealing with and I hope we can offer you some support. Know the prayers and thoughts are coming your way.
    Aloha,
    Kathleen
  • kmygil
    kmygil Member Posts: 876 Member
    #11
    Welcome back
    Hi Carletta,

    I am sorry to hear about your Mom; it is so very hard to let go of your mother and best friend. I still miss my Mom terribly, but I know that she could not have come back from her cancer either.

    Back on chemo again. I'm happy and sorry for you, if that makes any sense. I know that when I had the chemo at the office, I had to hold my left arm up to get things started in the port and I could not lean to the right at all or the flow would stop. However, when the pump was hooked up there was no problem at all. Ports are funny things.

    Stay hydrated and nourished and you will get through this in good shape. I'm keeping you in my prayers.

    Hugs,
    Kirsten
  • Shayenne
    Shayenne Member Posts: 2,342
    #12
    kmygil said:

    Welcome back
    Hi Carletta,

    I am sorry to hear about your Mom; it is so very hard to let go of your mother and best friend. I still miss my Mom terribly, but I know that she could not have come back from her cancer either.

    Back on chemo again. I'm happy and sorry for you, if that makes any sense. I know that when I had the chemo at the office, I had to hold my left arm up to get things started in the port and I could not lean to the right at all or the flow would stop. However, when the pump was hooked up there was no problem at all. Ports are funny things.

    Stay hydrated and nourished and you will get through this in good shape. I'm keeping you in my prayers.

    Hugs,
    Kirsten

    Carletta....
    ...so sorry to hear about your mom, that's so sad, I know when I lost my mom, it was very hard on me as well, I still think about her ALL the time, even though she passed away almost 28 years ago! she was my life too, and it still hurts that she's gone. I know she's out of pain though and in a better place, I just wish I had her around longer.

    Now, about that port, I would MAKE them give me a new one, I wouldn't want something that isn't half working in my body. Can't they inject that medicine in it and let it sit for a couple hours that will unclog it??? I had that done, and haven't had any problems since, I have the double line, and they both work, I can get blood drawn, and chemo and other meds infused in it, they should fix that.

    You are in my thoughts and prayers, and definitely see about getting that fixed.

    Hugsss!
    ~Donna
  • colon2
    colon2 Member Posts: 183
    #13
    Annabelle41415 said:

    I'm so sorry
    I'm sorry to hear of your mother's passing. That has to be so hard on you. You are dealing with so much at one time.

    Is there anyway that they can test your port to make sure that you are getting your infusions like maybe putting some dye in there and watching it with an ultra sound or something. I guess I would get a second opinion of the surgeon saying that all is ok. It's not his treatment that might or might not be getting into your system. You might want to ask your oncologist what they think about seeing if the port is open.

    I know your mother is in a better place and now out of pain. You take care of yourself and good luck with beginning your treatments again.

    Kim

    they did
    They did a port scan and that is when the oncologis thought it might form clots. But the surgeon says no. It goes in really good, no resistance at all. it just won't goive up any blood. Stubborn little thing I guess. Yes my Mom is in a better place. I sure do miss her though. God Bless, Carletta
  • colon2
    colon2 Member Posts: 183
    #14
    Nana b said:

    Hands up!
    They have probably already tried this.. but the ony way I can get blood drawn from my port is for me to be lying back on the relcliner with my hands up and back along my head. Just an FYI

    yep
    tried that one. They even told me to turn my head and cough. I asked them just what kind of exam were they planning on doing.LOL The little thing just wants to be stubborn. Thanks for the info though.
    carletta
  • angelsbaby
    angelsbaby Member Posts: 1,165 Member
    #15
    Shayenne said:

    Carletta....
    ...so sorry to hear about your mom, that's so sad, I know when I lost my mom, it was very hard on me as well, I still think about her ALL the time, even though she passed away almost 28 years ago! she was my life too, and it still hurts that she's gone. I know she's out of pain though and in a better place, I just wish I had her around longer.

    Now, about that port, I would MAKE them give me a new one, I wouldn't want something that isn't half working in my body. Can't they inject that medicine in it and let it sit for a couple hours that will unclog it??? I had that done, and haven't had any problems since, I have the double line, and they both work, I can get blood drawn, and chemo and other meds infused in it, they should fix that.

    You are in my thoughts and prayers, and definitely see about getting that fixed.

    Hugsss!
    ~Donna

    Carletta
    Sorry about your mom.

    michelle
  • colon2
    colon2 Member Posts: 183
    #16
    Shayenne said:

    Carletta....
    ...so sorry to hear about your mom, that's so sad, I know when I lost my mom, it was very hard on me as well, I still think about her ALL the time, even though she passed away almost 28 years ago! she was my life too, and it still hurts that she's gone. I know she's out of pain though and in a better place, I just wish I had her around longer.

    Now, about that port, I would MAKE them give me a new one, I wouldn't want something that isn't half working in my body. Can't they inject that medicine in it and let it sit for a couple hours that will unclog it??? I had that done, and haven't had any problems since, I have the double line, and they both work, I can get blood drawn, and chemo and other meds infused in it, they should fix that.

    You are in my thoughts and prayers, and definitely see about getting that fixed.

    Hugsss!
    ~Donna

    Thanks everyone
    I just wanted to say thank you all for your support. it means a lot. It has definetly been a rough couple of weeks, but I will make it. I have my faith, family and friends to help. You all seem like family and i really appreciate your thoughts and prayers.
    As for the port, they say it works fine going in. It just won't give up any blood. I don't know what to do. I am just going to see what happens after this chemo treatment. They tried the clot buster drug twice. It still wouldn't give blood back. I'm beginning to think that I have a one way port.Ha ha.
    Carletta
  • JR
    JR Member Posts: 139 Member
    #17
    SandyL said:

    So sorry about your mom
    I know what a drag the treatments can be, especially with what you've been going thru with your mother. Again, please know that I will be remembering you in my prayers.

    My husband is going for his #12 next Tuesday and we can hardly wait. I'm sure that you are glad that you are more than half way now,too. Keep your chin up and know that we are here for you. BTW, just wondering if you get the jaw spasms with the Oxyaliplatin infusion. He gets a severe pain in his jaw when he takes his first bite at meal times. Weird. I guess everyone doesn't get that jaw thing, but he gets it whenever he has the Oxal.


    Stay strong-
    Sandy

    Jaw pain...
    Sandy,
    I get that jaw pain you mentioned. It's like biting into a lemon. It goes away immediately and doesn't happen until I eat again. It is kind of weird.
    John

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