7th rituxin today

JoanieP
JoanieP Member Posts: 573
edited April 2011 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Just wondering if anyone else that is taking rituxin wakes up feeling like a truck ran over you in the night. I get up , take a hot shower and I mean hot and I am good to go. It is so good to know people understand you and don't just think you are a complainer. Sometimes I wonder is it because I am 63 and old:) or the rituxin.
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Comments

  • miss maggie
    miss maggie Member Posts: 929
    #2
    Rituxan
    I had my treatment of Rituxan in Dec 2009. I don't remember having any side effects. But, everyone is different. At least the hot shower helps you and you are ready to go.

    I have such a tired feeling when I get up in the morning now. But, I know it's because I have trouble with my right hip from the bone marrow biopsy, and my right knee. I try and walk lots each day. I suppose that is why I am tired in the morning.

    i hope your mornings are better for the future. Love Maggie
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    Rituxan...
    Hi Joanie,
    Monday I will get my 2nd R-maint infusion...my first one was given on Feb 14th. I have been dealing with non-stop headaches since my first infusion, but the last 2 weeks have been extra bad. Yesterday I thought I was going to have to break down and go to the E.R, and ask for a shot to get some relief, but ended up not going, instead I just toughed it out. Today it's not as bad, but it's still here. When I bend over or exert myself I feel dizzy and off balance and the pounding gets intense until I sit down and put my head back with a cool wash cloth over my eyes...then it "sort of" calms down. I went to the mail box earlier and the bright sun set it off again and now the pounding is back. I've taken 2 anacin already and in another hour I'll need to take some more, but all that does is dull the pounding..the pressure still hangs on. I called the clinic and the chemo nurse seems to think it's more related to the windy spring weather, but I told her I'm not outside at all except to get the mail. She said to just tell my doctor on Monday and see what he says..."what"??? no relief until Monday..I asked her. Finally she said if it gets too intense to just go to the E.R. I kind of feel like she blew me off, but didn't want to argue with her. Have you knowticed you have more headaches while on the Rituxan? Also...do your joints feel achey and locked up? My joints really ache...so much so that I haven't been doing my daily walks. Well...I have a list of things to tell my onc on Monday, but thats still 4 days away....hope in the meantime I won't have to go to the E.R.
    Love...Sue (FNHL-2-3A-6/10)
  • Michele23
    Michele23 Member Posts: 168
    #4
    allmost60 said:

    Rituxan...
    Hi Joanie,
    Monday I will get my 2nd R-maint infusion...my first one was given on Feb 14th. I have been dealing with non-stop headaches since my first infusion, but the last 2 weeks have been extra bad. Yesterday I thought I was going to have to break down and go to the E.R, and ask for a shot to get some relief, but ended up not going, instead I just toughed it out. Today it's not as bad, but it's still here. When I bend over or exert myself I feel dizzy and off balance and the pounding gets intense until I sit down and put my head back with a cool wash cloth over my eyes...then it "sort of" calms down. I went to the mail box earlier and the bright sun set it off again and now the pounding is back. I've taken 2 anacin already and in another hour I'll need to take some more, but all that does is dull the pounding..the pressure still hangs on. I called the clinic and the chemo nurse seems to think it's more related to the windy spring weather, but I told her I'm not outside at all except to get the mail. She said to just tell my doctor on Monday and see what he says..."what"??? no relief until Monday..I asked her. Finally she said if it gets too intense to just go to the E.R. I kind of feel like she blew me off, but didn't want to argue with her. Have you knowticed you have more headaches while on the Rituxan? Also...do your joints feel achey and locked up? My joints really ache...so much so that I haven't been doing my daily walks. Well...I have a list of things to tell my onc on Monday, but thats still 4 days away....hope in the meantime I won't have to go to the E.R.
    Love...Sue (FNHL-2-3A-6/10)

    Headache
    Hi Sue,I did plenty of maint. rituxan over the years.Don't recall a headache,I did get a major 7 day severe headache with Treanda/Rituxan.Truly feel it was the Treanda for me.Do they give you IV Benadryl and tylenol before treatment?Don't think anacin is strong enough,have you tried extra strength tylenol or mortrin?If can tolerate the tylenol that should help.Can't believe they blew you off,my oncs nurse always calls something in for me.They know me well after 16 yrs.Your headache sounds like the headache from hell I had.Also if you have any of those rice,popcorn or bean microwave bags putting one at the back of your neck and resting helps relax the muscles.I'm so sorry you are feeling so poorly.Only was sluggish and slow for a couple days after doing Rituxan.I wish you well and hope you feel better otherwise call them even if it is over the weekend.Michele {dx95FNHL3}
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    Michele23 said:

    Headache
    Hi Sue,I did plenty of maint. rituxan over the years.Don't recall a headache,I did get a major 7 day severe headache with Treanda/Rituxan.Truly feel it was the Treanda for me.Do they give you IV Benadryl and tylenol before treatment?Don't think anacin is strong enough,have you tried extra strength tylenol or mortrin?If can tolerate the tylenol that should help.Can't believe they blew you off,my oncs nurse always calls something in for me.They know me well after 16 yrs.Your headache sounds like the headache from hell I had.Also if you have any of those rice,popcorn or bean microwave bags putting one at the back of your neck and resting helps relax the muscles.I'm so sorry you are feeling so poorly.Only was sluggish and slow for a couple days after doing Rituxan.I wish you well and hope you feel better otherwise call them even if it is over the weekend.Michele {dx95FNHL3}

    Hubby brought home some sinus benedryl...took 2 tabs and I'm starting to feel the pressure sub-side. If it works, then I can pretty well bet the headaches are more sinus/allergy related rather than the Rituxan. Hope so...2 years of headaches would be a b@#*h to endure...ha! Thanks for the response comments guys...your the best!
    Love, Sue (FNHL-2-3A-6/10)
  • forme
    forme Member Posts: 1,161 Member
    #6
    allmost60 said:

    Hubby brought home some sinus benedryl...took 2 tabs and I'm starting to feel the pressure sub-side. If it works, then I can pretty well bet the headaches are more sinus/allergy related rather than the Rituxan. Hope so...2 years of headaches would be a b@#*h to endure...ha! Thanks for the response comments guys...your the best!
    Love, Sue (FNHL-2-3A-6/10)

    allergy
    Hi Sue,
    I usually get a headache with the season, but so far only sneezing, itchy eyes and runny nose. The winds here have been so bad the last few days. Hopefully your pain will be seasonal and you'll feel better soon.
    Try to picture this...
    Lola and her long thick fur laying out on the patio covered with soft green pollen blossoms! Sticks to her like glue. When I try to brush it off, it goes deeper in her fur. She is a walking allergy transport system. Oh well...
    Lisha
  • scuttlebug
    scuttlebug Member Posts: 59
    #7
    rituxin
    joiani rituxin only botherd me because of the benadrill it knocked me out what really toke a toll on me was thr chop i hate it dx 2005 follicular grade2 type b stage4. denise
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #8
    forme said:

    allergy
    Hi Sue,
    I usually get a headache with the season, but so far only sneezing, itchy eyes and runny nose. The winds here have been so bad the last few days. Hopefully your pain will be seasonal and you'll feel better soon.
    Try to picture this...
    Lola and her long thick fur laying out on the patio covered with soft green pollen blossoms! Sticks to her like glue. When I try to brush it off, it goes deeper in her fur. She is a walking allergy transport system. Oh well...
    Lisha

    Yikes!
    I can picture Lola...you might try a hand vac and suck the pollen off..that is if the noise from the vac didn't freak her out. My sons lab just loves to be vacumed and also loves the blow dryer used on him. I'm feeling better since taking 2 tabs of sinus benedryl...headache isn't completely gone, but totally do-able. No E.R.trip for me. I love this picture of you sitting in the sun...makes me want to join you with a cup of coffee my dear libra friend! Love...Sue (FNHL-2-3A-6/100
  • JoanieP
    JoanieP Member Posts: 573
    #9
    Michele23 said:

    Headache
    Hi Sue,I did plenty of maint. rituxan over the years.Don't recall a headache,I did get a major 7 day severe headache with Treanda/Rituxan.Truly feel it was the Treanda for me.Do they give you IV Benadryl and tylenol before treatment?Don't think anacin is strong enough,have you tried extra strength tylenol or mortrin?If can tolerate the tylenol that should help.Can't believe they blew you off,my oncs nurse always calls something in for me.They know me well after 16 yrs.Your headache sounds like the headache from hell I had.Also if you have any of those rice,popcorn or bean microwave bags putting one at the back of your neck and resting helps relax the muscles.I'm so sorry you are feeling so poorly.Only was sluggish and slow for a couple days after doing Rituxan.I wish you well and hope you feel better otherwise call them even if it is over the weekend.Michele {dx95FNHL3}

    Glad the medicine is working
    Hi Sue , Glad the medicine is working. I have never heard of headache as a side effect of rituxin. The Benadryl really made my restless leg kick in today so I just walked around rolling the infusion pole. Back to work tomorrow but I feel blessed everyday I feel well enough to go. Tomorrow's Friday. Hope all have a peaceful, painfree weekend.
  • JoanieP
    JoanieP Member Posts: 573
    #10
    miss maggie said:

    Rituxan
    I had my treatment of Rituxan in Dec 2009. I don't remember having any side effects. But, everyone is different. At least the hot shower helps you and you are ready to go.

    I have such a tired feeling when I get up in the morning now. But, I know it's because I have trouble with my right hip from the bone marrow biopsy, and my right knee. I try and walk lots each day. I suppose that is why I am tired in the morning.

    i hope your mornings are better for the future. Love Maggie

    Thanks Maggie
    Hi I told the Dr about the achey feeling in the morning and he put me on 1500 of glucomine(sp). I think walking makes you tired but if you walk you feel better. I actually went back to the gym this week to walk and my husband and I walked on the beach several times last week. I don't feel worse in the morning when I walk so I guess I need to keep doing it. Take care
  • JoanieP
    JoanieP Member Posts: 573
    #11
    scuttlebug said:

    rituxin
    joiani rituxin only botherd me because of the benadrill it knocked me out what really toke a toll on me was thr chop i hate it dx 2005 follicular grade2 type b stage4. denise

    Scuttlebug,
    Thanks for responding. The benadryl did wipe me out today and make my restless legs worse. The rituxin seems to be the best they have w/o too many side effects so I'll do it. Have a peaceful weekend.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #12
    JoanieP said:

    Glad the medicine is working
    Hi Sue , Glad the medicine is working. I have never heard of headache as a side effect of rituxin. The Benadryl really made my restless leg kick in today so I just walked around rolling the infusion pole. Back to work tomorrow but I feel blessed everyday I feel well enough to go. Tomorrow's Friday. Hope all have a peaceful, painfree weekend.

    Great picture...
    Hi Joanie,
    I love your new picture! You look wonderful and I love your hair. I wouldn't guess you to be 63 by looking at this picture. I feel like I've aged in looks by 10 years since last June...UGH! Oh well...Yes...my head feels wayyy better tonight..Yeah!
    Love...Sue (FNHL-2-3a-6/10)
  • cookingirl
    cookingirl Member Posts: 183 Member
    #13
    7th Rituxon today
    Joanie - sorry to hear you're having that reaction to your maintenance R. Are you counting the days til school is out and you have the summer to relax? Ours ends May 23 on the East coast so hoping yours is early and it's here before you know it! LOVE the beautiful new picture on your boat - you're looking very glamorous and could pass for 43, certainly not 63! Love, Fran
  • JoanieP
    JoanieP Member Posts: 573
    #14
    cookingirl said:

    7th Rituxon today
    Joanie - sorry to hear you're having that reaction to your maintenance R. Are you counting the days til school is out and you have the summer to relax? Ours ends May 23 on the East coast so hoping yours is early and it's here before you know it! LOVE the beautiful new picture on your boat - you're looking very glamorous and could pass for 43, certainly not 63! Love, Fran

    Thanks Fran
    Thanks so much Fran for the compliment. I laugh because when a friend and I use to walk we were insulted when the garbage men honked at us. Now we welcome it since no one else does:):) The picture was taken right before I was diagnosed . My hair is growing back and is really curley. Kind of like I stuck my finger in an electrical socket:) So I was 61. Glasses hide a lot:) So glad to see you on the discussion board.
  • JoanieP
    JoanieP Member Posts: 573
    #15
    allmost60 said:

    Great picture...
    Hi Joanie,
    I love your new picture! You look wonderful and I love your hair. I wouldn't guess you to be 63 by looking at this picture. I feel like I've aged in looks by 10 years since last June...UGH! Oh well...Yes...my head feels wayyy better tonight..Yeah!
    Love...Sue (FNHL-2-3a-6/10)

    Thanks Sue,
    Thaks Sue. Big glasses hide a lot. I had the picture taken when I was 61. I think everything has sagged, wrinkled and grown celulite since:)
  • JoanieP
    JoanieP Member Posts: 573
    #16
    allmost60 said:

    Great picture...
    Hi Joanie,
    I love your new picture! You look wonderful and I love your hair. I wouldn't guess you to be 63 by looking at this picture. I feel like I've aged in looks by 10 years since last June...UGH! Oh well...Yes...my head feels wayyy better tonight..Yeah!
    Love...Sue (FNHL-2-3a-6/10)

    Thanks Sue,
    Thanks Sue. Big glasses hide a lot. I had the picture taken when I was 61. I think everything has sagged, wrinkled and grown celulite since:)
  • cookingirl
    cookingirl Member Posts: 183 Member
    #17
    JoanieP said:

    Thanks Fran
    Thanks so much Fran for the compliment. I laugh because when a friend and I use to walk we were insulted when the garbage men honked at us. Now we welcome it since no one else does:):) The picture was taken right before I was diagnosed . My hair is growing back and is really curley. Kind of like I stuck my finger in an electrical socket:) So I was 61. Glasses hide a lot:) So glad to see you on the discussion board.

    My hair's curly too!
    Hi Joanie - this is the first week I've been able to go without a wig or scarf since late last June. It's finally thick enough though I've never had short hair in my entire life! My friends say it's cute and very different and they think I should keep it short even when it grows longer. The back is so curly and nice, but crown not doing so well - some spots not there yet and so flat. Is the color in your picture your natural shade? Mine grew back in snow white and I've always been a light brown. Oncy. said I could use a non-permament color so I did, but trying to find some organic color. We don't have a Whole Foods but sure they would have it - will check when I get to Orlando next. Afraid I haven't had any whistles in a few years, not even from garbage men, so you're lucky!
    Thank you for saying you pray for me daily - so do I for you - thank you so much. Love, Fran
  • JoanieP
    JoanieP Member Posts: 573
    #18
    cookingirl said:

    My hair's curly too!
    Hi Joanie - this is the first week I've been able to go without a wig or scarf since late last June. It's finally thick enough though I've never had short hair in my entire life! My friends say it's cute and very different and they think I should keep it short even when it grows longer. The back is so curly and nice, but crown not doing so well - some spots not there yet and so flat. Is the color in your picture your natural shade? Mine grew back in snow white and I've always been a light brown. Oncy. said I could use a non-permament color so I did, but trying to find some organic color. We don't have a Whole Foods but sure they would have it - will check when I get to Orlando next. Afraid I haven't had any whistles in a few years, not even from garbage men, so you're lucky!
    Thank you for saying you pray for me daily - so do I for you - thank you so much. Love, Fran

    curley
    Fran give it time and it will grow in. Being curlry makes it easier to grow back longer I think. Everyone told me to keep it short but I want it longer again. I use Redken real contol creme care and when I get out of the shower I put a dime size of it on. Did your Dr. tell you to use organic hair color? I went to Sally's beauty supply and they told me what color to use. Mine came in with too much red in it and some gray.Thank you for praying for me too. Don't know what I would do without my faith and God's strength.
  • JoanieP
    JoanieP Member Posts: 573
    #19
    cookingirl said:

    My hair's curly too!
    Hi Joanie - this is the first week I've been able to go without a wig or scarf since late last June. It's finally thick enough though I've never had short hair in my entire life! My friends say it's cute and very different and they think I should keep it short even when it grows longer. The back is so curly and nice, but crown not doing so well - some spots not there yet and so flat. Is the color in your picture your natural shade? Mine grew back in snow white and I've always been a light brown. Oncy. said I could use a non-permament color so I did, but trying to find some organic color. We don't have a Whole Foods but sure they would have it - will check when I get to Orlando next. Afraid I haven't had any whistles in a few years, not even from garbage men, so you're lucky!
    Thank you for saying you pray for me daily - so do I for you - thank you so much. Love, Fran

    Fran
    Call me if you still have my number if you feel up to it.
  • leon38
    leon38 Member Posts: 3
    #20
    JoanieP said:

    curley
    Fran give it time and it will grow in. Being curlry makes it easier to grow back longer I think. Everyone told me to keep it short but I want it longer again. I use Redken real contol creme care and when I get out of the shower I put a dime size of it on. Did your Dr. tell you to use organic hair color? I went to Sally's beauty supply and they told me what color to use. Mine came in with too much red in it and some gray.Thank you for praying for me too. Don't know what I would do without my faith and God's strength.

    Rituximab
    Hey JoanieP my name is Francesca all of you sound really nice I am glad to get a little info on what to expect on Tuesday when I have my first treatment of Rituximab I am really nervous the side effects sound worse then the cure.
    I am glad to read that its not too bad.
    Thank you.
  • winthefight
    winthefight Member Posts: 162
    #21
    Rituxin
    Hello,

    I have been using Rituxin for 4 years. For the first 16 months, it was combined with chemo. In the beginning my joints ached. I felt very stiff, and my walk was more of a wobble. I discussed these issues to my Oncologist because this is most unusual for a 42 year old. My Oncologist placed me on celebrex (for arthritis pain). It worked so well for me. I was really nervous about taking the celebrex.....but was one of the best decisions I every made. I only took it for a short period of time, but it really did help with all of the pain and stiffness I was experiencing.

    For the past two years I have been on just Rituxin maintenance and am doing extremely well with it. I too get fatigued with the treatment. But I know what to expect and I just rest a few days. In a few days, my body returns to the new norm.

    I want to encourage you and the other survivor. Please do not be afraid. Rituxin is a wonderful drug. Many survivors including myself are living wonderfully while on it. I know survivors who remain to do well on it for many years.

    You may want to jot down your feelings on a calendar. That way you can discuss with your oncology team, just what you are feeling. You can also review your feelings to see if it is associated with the treatment. Say for instance: Fatigued experienced days 1-3 of treatment, day four increased appetite.

    You can review what has happened in the past to determine if there is a pattern. If it is a pattern, you will know this is your new norm.

    But above all else, told to your Oncologist about what you are feeling and experiencing. If he/she doesn't list, seek your hospital's social worker.

    Good luck
    winthefight

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