This is not my idea of living.

jamiegww
jamiegww Member Posts: 384
Last Thursday I received my second infusion of Ixempra and started a second cycle of Xeloda. Over the weekend I developed an infection in my mouth (oral thrush) and yesterday I got a prescription called Nystatin to swish and swallow four times a day. Thankfully it doesn't taste too bad but when I swallow, it feels more like I have strep throat. The bone and joint pain is almost unbearable and I just feel more dead than alive. I'm afraid the chemo will kill me long before the cancer does. I'm sorry to be so negative but I guess I really could use some prayers for this to get easier. Maybe I made the wrong decision to fight it this time around? I want so badly to feel good again. Thank you all for listening.

HUGS!!!
Jamie
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Comments

  • smalldoggroomer
    smalldoggroomer Member Posts: 1,184
    Hello Jamie,
    I am so

    Hello Jamie,
    I am so sorry you have to deal with this. Have you talked to you Dr about how you feel? Maybe they can change or adjust your chemo. I too have just been Dx with mets to my lungs and spine. So I know how you feel. I have just started back to chemo. Still weighting for the side effects to start. I want you to know you are in my prayers and thoughts. I wish you well my sister. Take care Kay,
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    oh Jamie, I'm so sorry to
    oh Jamie, I'm so sorry to hear about the thrush and the bone pain. Hopefully in another day or two the nystatin will kick in and at least your mouth and throat will start feeling better.

    Does the doc have you on neupogin or neulasta to rebuild your WBC? If so, that could be the cause of the bone/joint pain. Claratin virtually eliminated that pain for me.

    Please don't worry about being 'negative'...this is the safest place you can be to let those grumpy grouchy feelings out. BTW, I didn't read your post as negative at all, you were simply telling us how you feel right now. Again, this is a great place to do that, because we've got your back.

    Hugs,

    Linda
  • Pam5
    Pam5 Member Posts: 232

    oh Jamie, I'm so sorry to
    oh Jamie, I'm so sorry to hear about the thrush and the bone pain. Hopefully in another day or two the nystatin will kick in and at least your mouth and throat will start feeling better.

    Does the doc have you on neupogin or neulasta to rebuild your WBC? If so, that could be the cause of the bone/joint pain. Claratin virtually eliminated that pain for me.

    Please don't worry about being 'negative'...this is the safest place you can be to let those grumpy grouchy feelings out. BTW, I didn't read your post as negative at all, you were simply telling us how you feel right now. Again, this is a great place to do that, because we've got your back.

    Hugs,

    Linda

    Jamie
    I too am so sorry you have to go through this. Of course you can dump your troubles here! That's one of the reasons we're here. The Nystatin will help. It certainly helped me - a lot. As I recall, it took a few days. Also, I started keeping crushed ice in my mouth during chemo. That kept my mouth pretty clear.

    Pam
  • natly15
    natly15 Member Posts: 1,941
    Pam5 said:

    Jamie
    I too am so sorry you have to go through this. Of course you can dump your troubles here! That's one of the reasons we're here. The Nystatin will help. It certainly helped me - a lot. As I recall, it took a few days. Also, I started keeping crushed ice in my mouth during chemo. That kept my mouth pretty clear.

    Pam

    I'm offering prayers for all
    I'm offering prayers for all you gals.
  • natly15
    natly15 Member Posts: 1,941
    Pam5 said:

    Jamie
    I too am so sorry you have to go through this. Of course you can dump your troubles here! That's one of the reasons we're here. The Nystatin will help. It certainly helped me - a lot. As I recall, it took a few days. Also, I started keeping crushed ice in my mouth during chemo. That kept my mouth pretty clear.

    Pam

    I'm offering prayers for all
    double post - CSN is always up to it's tricks
  • SIROD
    SIROD Member Posts: 2,194 Member
    Your Not Negative
    Hi Jamie,

    I also would 2nd Kay's suggestion that you inform your oncologist how you are feeling. Perhaps to see if there can be some adjustment made to your meds.

    Your making a statement of fact and that isn't a negative.

    Wishing you the very best,

    Doris
  • jendrey
    jendrey Member Posts: 377
    SIROD said:

    Your Not Negative
    Hi Jamie,

    I also would 2nd Kay's suggestion that you inform your oncologist how you are feeling. Perhaps to see if there can be some adjustment made to your meds.

    Your making a statement of fact and that isn't a negative.

    Wishing you the very best,

    Doris

    ...
    Well, I would hope that you'd come here and share with us how you feel - good or bad! I also didn't view your post as negative at all. We get it here, like nobody else ever could. Sending you a rainbow of wishes to feel better and soon!

    (((Hugs)))
  • RE
    RE Member Posts: 4,591 Member
    Hugs
    Oh Jamie I remember that horrible bone pain you have every right to complain it is certainly painful and no fun at all then add the mouth issues poor thing! We are here for you you complain all you want it is what helps us make it through it all!

    Wishing brighter day's for you and soon!

    RE
  • missrenee
    missrenee Member Posts: 2,136 Member
    RE said:

    Hugs
    Oh Jamie I remember that horrible bone pain you have every right to complain it is certainly painful and no fun at all then add the mouth issues poor thing! We are here for you you complain all you want it is what helps us make it through it all!

    Wishing brighter day's for you and soon!

    RE

    Jamie--my heart and prayers go out to you
    I am so sorry you are in this place. I know when I feel my most hopeless is when I'm in my most pain. I'm hoping the side effects lessen for you and your fight becomes more manageable. I'm stage 4 with bone mets and just had a mastectomy 10 days ago for a recurrence. There has been a lot of pain and that is when I feel my spirit starting to diminish. I hate that.

    Let's pray for less pain and more healing and getting our spirit back soon.

    Hugs, Renee
  • missrenee
    missrenee Member Posts: 2,136 Member
    RE said:

    Hugs
    Oh Jamie I remember that horrible bone pain you have every right to complain it is certainly painful and no fun at all then add the mouth issues poor thing! We are here for you you complain all you want it is what helps us make it through it all!

    Wishing brighter day's for you and soon!

    RE

    Jamie--my heart and prayers go out to you
    I am so sorry you are in this place. I know when I feel my most hopeless is when I'm in my most pain. I'm hoping the side effects lessen for you and your fight becomes more manageable. I'm stage 4 with bone mets and just had a mastectomy 10 days ago for a recurrence. There has been a lot of pain and that is when I feel my spirit starting to diminish. I hate that.

    Let's pray for less pain and more healing and getting our spirit back soon.

    Hugs, Renee
  • MsGebby
    MsGebby Member Posts: 659
    Please hang in there. I
    Please hang in there. I haven't had (and hope I never do) this kind of experience. I just want you to know that I think coming here to vent, moan and cry is good therapy in and of itself.

    I am in awe of you and all the other fine women who come here to share their experiences with others.

    Please though ... please don't believe for one minute that you made the wrong decision to fight this time. Life is a beautiful thing. AND ... you are a beautiful woman making life beautiful for others.

    xoxo
    Mary
  • sdukowitz
    sdukowitz Member Posts: 250
    No wrong decision .... you
    No wrong decision .... you have to fight this before you can win this! And you will! Prayers and hugs! Sue D
  • MAJW
    MAJW Member Posts: 2,510 Member
    sdukowitz said:

    No wrong decision .... you
    No wrong decision .... you have to fight this before you can win this! And you will! Prayers and hugs! Sue D

    Jamie..
    Hang on Sweetie..
    one word of advice about the thrush..I had it 3 times after my brain rads..the Nystatin is soothing, and has a slight numbing effect... I took it but it didn't help....prescription meds is what I had to take, 3 different times....I took Xelada for 7 months and had zero side effects other than some slight thinning of my hair...I'd say it's the other chemo drug that is causing the thrush....if you don't get much relief from the Nystatin, ask for on RX...before it really gets worse.....it was miserable for me....that started my weight loss, because I couldn't eat much....

    As others have said this is the place to rant, scream, whine whatever it takes....don't give up....keep us posted...you know we care, deeply...
    Hugs, Nancy
  • rallendorfer
    rallendorfer Member Posts: 244
    I understand.
    I am also suffering right now with a terrible sore mouth and tongue...it is all white. The Oncologist prescribed what you are taking too, Nystatin. It doesn't seem to help for very long, and the pain comes back, with the other SE from chemo (mine is Taxotere) Food is like wax and very painful to swallow. It is hard to be positive and hopeful when in pain. Times like these we need the other girls to pray, even if just for a moment or two for us.

    I take Vicodin for the joint and bone pain right now. It is bad. But, forward we go. We have to keep moving forward, and don't collapse.

    Gentle hugs,
    Rebecca
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member

    I understand.
    I am also suffering right now with a terrible sore mouth and tongue...it is all white. The Oncologist prescribed what you are taking too, Nystatin. It doesn't seem to help for very long, and the pain comes back, with the other SE from chemo (mine is Taxotere) Food is like wax and very painful to swallow. It is hard to be positive and hopeful when in pain. Times like these we need the other girls to pray, even if just for a moment or two for us.

    I take Vicodin for the joint and bone pain right now. It is bad. But, forward we go. We have to keep moving forward, and don't collapse.

    Gentle hugs,
    Rebecca

    Sending hugs and prayers
    to both of you. I hope you get relief soon so you will regain your hope. In the meantime, we'll take that on for you and help carry you through.

    About the Claritin, I had a good friend who also took it for bone pain and was amazed at the relief she got.

    Suzanne
  • New Flower
    New Flower Member Posts: 4,294

    Sending hugs and prayers
    to both of you. I hope you get relief soon so you will regain your hope. In the meantime, we'll take that on for you and help carry you through.

    About the Claritin, I had a good friend who also took it for bone pain and was amazed at the relief she got.

    Suzanne

    Jamie how are you doing today
    Hi Jamie,
    I am very sorry that you have been having a hard time with this combo. Please talk to your doctor, who as everybody said, will adjust your medications tto tolerable level. Please, do not forget it is Temporary, the goal is put you back remission. Both of your medications are approved and used for either mono therapy or in combination. Let us know how are you doing and what your oncologist thinks about your conditions
    Hugs
    New Flower
  • Angie2U
    Angie2U Member Posts: 2,991
    Pam5 said:

    Jamie
    I too am so sorry you have to go through this. Of course you can dump your troubles here! That's one of the reasons we're here. The Nystatin will help. It certainly helped me - a lot. As I recall, it took a few days. Also, I started keeping crushed ice in my mouth during chemo. That kept my mouth pretty clear.

    Pam

    I'm so sorry Jamie to read
    I'm so sorry Jamie to read how you are feeling. At least by posting, I hope that you will feel better.

    Please talk to your onco about this and I bet he can help you out. Please do!

    Hugs, Angie
  • carkris
    carkris Member Posts: 4,553 Member

    Jamie how are you doing today
    Hi Jamie,
    I am very sorry that you have been having a hard time with this combo. Please talk to your doctor, who as everybody said, will adjust your medications tto tolerable level. Please, do not forget it is Temporary, the goal is put you back remission. Both of your medications are approved and used for either mono therapy or in combination. Let us know how are you doing and what your oncologist thinks about your conditions
    Hugs
    New Flower

    I got thrush with each of my
    I got thrush with each of my Ac treatments. started it before the symptoms started. I wonder ifeating yogurt or taking probiotics would help? I have also heard about the claritin. many people have said it helps. slow gentle exersize and warm baths. Please keep fighting, there has to be a way to help your SE's to make this more bearable. Ask and venthere that is what we are here for.
  • Heatherbelle
    Heatherbelle Member Posts: 1,226 Member
    I got mouth sores and
    I got mouth sores and terrible bone and joint pain with chemo. After my first neulasta shot after my first chemo, i developed excruciating pain. Dr prescribed vicodin and then a few days later Percocet, and I was on that the entire time i was having chemo. With the mouth sores, I got a prescription for Mary's Magic Mouthwash (or something like that) which helped, I drank alot of hot tea, and i ate ALOT of popsicles. Not ice cream - that tasted funny - but just the icy pop (the ones that when not frozen look like tubes of kool-aid) ones. I could barely taste them anyway, but they helped soothe my throat. Hang in there. Chemo was the hardest thing i've ever done in my life. Tell your Dr or nurse about your pain, they can help you manage it.
    hugs
    heather
  • Lighthouse_7
    Lighthouse_7 Member Posts: 1,566 Member

    I got mouth sores and
    I got mouth sores and terrible bone and joint pain with chemo. After my first neulasta shot after my first chemo, i developed excruciating pain. Dr prescribed vicodin and then a few days later Percocet, and I was on that the entire time i was having chemo. With the mouth sores, I got a prescription for Mary's Magic Mouthwash (or something like that) which helped, I drank alot of hot tea, and i ate ALOT of popsicles. Not ice cream - that tasted funny - but just the icy pop (the ones that when not frozen look like tubes of kool-aid) ones. I could barely taste them anyway, but they helped soothe my throat. Hang in there. Chemo was the hardest thing i've ever done in my life. Tell your Dr or nurse about your pain, they can help you manage it.
    hugs
    heather

    I'm so sorry
    that you're going through this. My heart aches for you because I remember how bad I felt when bone pain started. I, like Heather, had to have Percocet for that and for mouth sores I ate tons of popsicles too. I liked the Hood brand that had banana and rootbeer flavors.

    You will get through this and after it was over I remember thinking it wasn't nearly as bad as I had thought. I didn't vomit everyday like one of my friends did and I am happy to tell you that I am 3 years out now and still cancer free.

    God bless and the wonderful ladies and gents here all feel your pain and will always be here to help or just to let you vent. Vent away my friend!

    Hugs,
    Wanda