My first post

krzyworv
krzyworv Member Posts: 4
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Hi there,

obviously I'm new to this but I thought I could use all the support I could get!  I'm 37 years and was diagnosed with follicular lymphoma back in the fall.  I just had my first of 6 treatments last week.  The Rotuxin Bendamustine combo.  And boy was I sick!!  I'm to have one treatment every month for 6 months.  I'm wondering if anyone else got as sick as me and will it be better next time, because I'm pretty scared about next time.  My doctors and nurses kept assuring me that chemo isn't like it used to be and i won't be home vomitting and nauseous but I was.  I had treatment last Tues and Wed and today is the first day I've felt remotely better and I'm still really quesy.  They even gave me ondanceatron, and it didn't help.  I have a history of nausea, three beautiful kids that each came with brutal morning sickness but this was unreal.  I'd love to hear other's experiences.

Comments

  • Rosalia58
    Rosalia58 Member Posts: 1
    #2
    So Scary

    Hi all

     

    I have also been diagnosed with follicular lymphoma and I will be comencing my Chemo treatment tomorrow.

    I started having pains on my right side just over a year ago and I was supposed to have had a scan in April last year which I cancelled as I was overseas then for some reason or other I did not have my scan until last November and I was told I had lymphoma first week of December. I felt my whole world caving in on me. It was the last thing that I expected. 

    I will be having 6 treatments, 1 every 3 weeks. I am going to be receiving CHOP - R and from what I hear it is quite strong and that I am going to feel quite sick.

    Its so very scary. Anyone have some good advise to give.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #3
    Rosalia58 said:

    So Scary

    Hi all

     

    I have also been diagnosed with follicular lymphoma and I will be comencing my Chemo treatment tomorrow.

    I started having pains on my right side just over a year ago and I was supposed to have had a scan in April last year which I cancelled as I was overseas then for some reason or other I did not have my scan until last November and I was told I had lymphoma first week of December. I felt my whole world caving in on me. It was the last thing that I expected. 

    I will be having 6 treatments, 1 every 3 weeks. I am going to be receiving CHOP - R and from what I hear it is quite strong and that I am going to feel quite sick.

    Its so very scary. Anyone have some good advise to give.

    Welcome

    Welcome, Rosalia. I have an aunt with your name, my mom's sister.

    Note that you are getting different drugs from the ones K is being treated with (exept that you both get Rituxan). There are undoubtedly clinical reasons or specifics in your biopsies that made the doctors decide on which drugs to use. 

    I did not receive CHOP, but it is the most common of all non-Hodgkin's lymphoma combinations.  But I did receive three (three) of the drugs in R-CHOP.  Many folks here will hopefully will share their R-CHOP experiences. 

    People's experiences on chemo vary dramatically, from very mild, to very unpleasant. You did niot state your age or general heallth, but generally this varies with the age of the patient and the number of infusions given.  You are receiving a relatively full, large dose programme.  But, some older folks have few problems, and some younger ones do. It is essentially impossible to guess beforehand who will have a rough time and who won't.

    The most common side-effect of chemo (virtually universal) is extreme weakness/fatigue.  (Symptoms frequently do not start until after one or two infusions, although I was in the hospital a day after my first infusion, due to a fever brought on by my white blood cell count plunging.)  I would recommend planning to reduce your daily activities a lot, although this may be more necessary later on than it is initially. I could drive throughout my entire six month treatment, although I had a lot of very dibilitating side-effects.

    Numerous CHOP treatments willl normally cause hair loss, which will regrow after treatment ends.  Cramps and flu-like pain are fairly common with Rituxan and one or two of the other drugs you will receive. Nausea is rarely a problem with chemo any more, due to new anti-nausea meds that you will be given.

    This link explains R-CHOP and each of the five drugs that are in it: 

    http://chemocare.com/chemotherapy/acronyms/chop-r.aspx#.VMAPXu85C70

     

    We are wishing you well,

    max

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #4
    Welcome

    Welcome, k !

    Several of the regulars here are on, or have used, your drug combo, and hopefully they will write soon. Your type of lymphoma is pretty common also. I had a different cancer and different drugs, and can't really say much of value regarding your particulars.

    By "sick," I assume you mean nausea. That is rare today, and completely unnecessary. Ask your doc if you are getting EMEND with your treatments to prevent nausea. If you are not, ask him if it is appropriate in your case.

    max

    http://chemocare.com/chemotherapy/drug-info/bendamustine.aspx#.VMAeVO85C70

    http://chemocare.com/chemotherapy/drug-info/Rituxan.aspx#.VMAer-85C70

    http://www.drugs.com/emend.html

  • givingrace
    givingrace Member Posts: 161
    #5
    Hi I was diagnosed with

    Hi 

    I was diagnosed with non-hodgkin's follicular lymphoma in 2010 I received two years of Rituxan. The cancer was gone for two years then came back.I am 5 treatments in of 6 . Bendamustine, Neulasta, and Rituxan. It's not as intense as other meds out there. The cancer is gone as of a few weeks ago. I will finish the 6th treatment and then proceed to do rituxen as a maintenance once every two months.

     Max is right everyone is going to react to there chemotherapy different then others, somethings could be the same. The main thing is to communicate with your Dr.and nursing staff.  They will be a huge help. If you are on one nausea med there could be another you could alternate in closer intervals then now.

    This forum is a blessing too. I'm greatful to come here and find I am not alone.

    Wishing both of you the best threw this journey. 

    ((HUGS))

  • littlemac
    littlemac Member Posts: 22
    #6
    I just finished the same treatment

    Hi.  

    I am 47 and I also have been diagnosed with stage IV follicular lymphoma in September.  I started Rituximab /Bendamustine infusions in October.  My doctor included a "cocktail mix" of drugs before I was infused and gave me a few prescriptions that helped me afterwards. I also took Onodansetron, I think this was very helpful.  Ask your doctor if any other presciptins can help you. I will think good thoughts for you that this eases for you.

    I was zapped, tired for the week after, but bounced back quickly.  You need to rest when your body tells you and try to eat & drink your water.  Eating smaller portions more frequently helped me. 

    Hang in there, it is worth it.  I was shocked that my PET scan showed that I am in complete resolution after only 3 treatments.  I just had the 4th the last couple of days for good measure.  Then I will be on a maintenence therapy for the next two years of ritaximab.  My doctor believes this will help extend the remission period.

    During treatments I had a few rough days, but really felt like this treatment sounded less brutal than some other ones friends of mine had to undergo. And it is working.  I have not had another bone marrow biopsy to check if my bone marrow is still involved. My doctor may not do this at this time, but just continue with the Rituximb.

    I wish you the best of luck!  I am open to answering any questions you have.  Maybe my experiences can help you.  Keep a positive attitude!

     

     

     

  • krzyworv
    krzyworv Member Posts: 4
    #7
    littlemac said:

    I just finished the same treatment

    Hi.  

    I am 47 and I also have been diagnosed with stage IV follicular lymphoma in September.  I started Rituximab /Bendamustine infusions in October.  My doctor included a "cocktail mix" of drugs before I was infused and gave me a few prescriptions that helped me afterwards. I also took Onodansetron, I think this was very helpful.  Ask your doctor if any other presciptins can help you. I will think good thoughts for you that this eases for you.

    I was zapped, tired for the week after, but bounced back quickly.  You need to rest when your body tells you and try to eat & drink your water.  Eating smaller portions more frequently helped me. 

    Hang in there, it is worth it.  I was shocked that my PET scan showed that I am in complete resolution after only 3 treatments.  I just had the 4th the last couple of days for good measure.  Then I will be on a maintenence therapy for the next two years of ritaximab.  My doctor believes this will help extend the remission period.

    During treatments I had a few rough days, but really felt like this treatment sounded less brutal than some other ones friends of mine had to undergo. And it is working.  I have not had another bone marrow biopsy to check if my bone marrow is still involved. My doctor may not do this at this time, but just continue with the Rituximb.

    I wish you the best of luck!  I am open to answering any questions you have.  Maybe my experiences can help you.  Keep a positive attitude!

     

     

     

    Hi everyone,
    Thank you for

    Hi everyone,

    Thank you for your comments and best of luck to you still being treated.  I just had my second treatment today and my doc did prescribe EMEND so hopefully things are better this time.  I also have a few other things in my back pocket to help.

     

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,812 Member
    #8
    krzyworv said:

    Hi everyone,
    Thank you for

    Hi everyone,

    Thank you for your comments and best of luck to you still being treated.  I just had my second treatment today and my doc did prescribe EMEND so hopefully things are better this time.  I also have a few other things in my back pocket to help.

     

    Glad

    Glad to hear back from you krzyworv.  You will likely get into something of a routine as the treatments advance, and it may become a little easier for you, even if side-effects become worse.  Please remain in touch, since most likely any chemo-related problem you encounter someone here will have experiences with.

    max

  • JoaniePP
    JoaniePP Member Posts: 10
    #9
    Rosalia58 said:

    So Scary

    Hi all

     

    I have also been diagnosed with follicular lymphoma and I will be comencing my Chemo treatment tomorrow.

    I started having pains on my right side just over a year ago and I was supposed to have had a scan in April last year which I cancelled as I was overseas then for some reason or other I did not have my scan until last November and I was told I had lymphoma first week of December. I felt my whole world caving in on me. It was the last thing that I expected. 

    I will be having 6 treatments, 1 every 3 weeks. I am going to be receiving CHOP - R and from what I hear it is quite strong and that I am going to feel quite sick.

    Its so very scary. Anyone have some good advise to give.

    Hope this helps

    Hi  I was diagnosed in Jan. 2009 with follicular NHL.  I took CHOP starting on Mar 9, 2009 and was in remission on June 2, 2009. I am still in remission and feeling great.  My CHOP was every three weeks also and had 6 rounds.  I stayed positive , prayed a lot and was wonderfully cared for by my husband.  I felt a little weak by the fifth and sixth chemo.  My hair grew back and went back to teaching in Sept of 2009. I started a support group in my church called HOPE.  My Dr introduced me to someone  that had the same diagnosis.  She will be celebrating her 10th year in remission.  I am a Stephen Miinister in the Methodist Church here in Tampa Bay area in FLorida if you need someone to listen and walk through this with you.  Just let me know and I will give you my contact information.    

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