BEACOPP

allisonf
allisonf Member Posts: 4
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hey guys-

I was just wondering if anybody here was treated with BEACOPP. I had my last treatment 4 years ago, and I'm still wondering if anyone has had any of the long term side effects that they mentioned (infertillity, early menopause, leukemia). It was so new and so unknown when they gave it to me, and they only use it in extreme cases (like my 4B with bone marrow infection). In 4 years I've yet to find another person who's had it, and I'm hoping to get lucky.

-Allison

Comments

  • Gpar57
    Gpar57 Member Posts: 1
    #2
    Hi. I am stage IIB Poor-prognosis bulky Hodgkin's. I had induction failure as determined by PET Scan after 3 cycles of ABVD. They switched me to Hi-dose BEACOPP and it seems to be working already in less than a week's time. Anyway, I'm also real worried about Leukemia, NHL, and other malignancies down the road. This bone marrow transplant thing is kind of freaking me out too. Theyare already talking like it's a certainty. Anyway, if you find out anything from any BEACOPP survivor's, I'd like to know! Keep the faith!

    Gary
  • allisonf
    allisonf Member Posts: 4
    #3
    Gpar57 said:

    Hi. I am stage IIB Poor-prognosis bulky Hodgkin's. I had induction failure as determined by PET Scan after 3 cycles of ABVD. They switched me to Hi-dose BEACOPP and it seems to be working already in less than a week's time. Anyway, I'm also real worried about Leukemia, NHL, and other malignancies down the road. This bone marrow transplant thing is kind of freaking me out too. Theyare already talking like it's a certainty. Anyway, if you find out anything from any BEACOPP survivor's, I'd like to know! Keep the faith!

    Gary

    Hey Gary-

    I was stage IVB, and my cancer was GONE by round 6 (they gave me the planned 8 anyway to be on the safe side). In fact, after my first round they had to give me an unplanned chest x-ray because my port was blocked, and found a 30% reduction in tumor size. They intially said that there was a high likelyhood of a bone-marrow transplant, but turns out the BEACOPP kicked the crap out of the cancer on its own, including the stuff in my bone marrow.

    And what is this NHL? They never told me about NHL. What have you heard?
  • cupac
    cupac Member Posts: 4
    #4
    Hi
    I also had BEACOPP treatment 4 1/2 years ago. My periods are a bit funny and irregular although I do get them so I am not menopausal just yet. The chance of getting leukemia and other cancers is very small my specialist informed me. I have not tried having children yet, but am about to start. However, my friend who had accelerated BEACOPP treatment at the same time I did, now has a beautiful 2 year old baby (the pregnancy was quite a nice suprise for her because doctors told her that she couldn't have kids). She was a stage 4B also with bone marrow infection and is still going strong as yourself. Be glad that BEACOPP was around because the cure rate with this cocktail of drugs for your staging and mine (3B) is 90%.
  • Jackiepie
    Jackiepie Member Posts: 4
    #5
    Hi Allison,
    I did a search on BEACOPP and your post came up. I am nearly 1 1/2 years post treatment for BEACOPP. I was diagnosed in April of 2005 with advanced stage 4 Hodgkins. I tolerated the treatment fairly well. I was hospitalized twice with fevers after day 8. I am 38 and before my diagnosis (at age 36) had gone through infertility treatment and was told that I could not conceive. I am post menopausal now, but more than likely my age and situation also affected that.
    I feel pretty well. The only trouble that I have is joint pain. I try not to worry about leukemia.
    I read your story and I think it is great. I too took up new hobbies to pass the time. I learned to crochet. But pastry chef is so cool!
    I see you are from NY. Where were you treated. I am from NJ and I was treated at Sloan Kettering. I would love to hear from you and compare notes-you're right it is hard to find other BEACOPP patients.
    Jackie
  • JaspaJami
    JaspaJami Member Posts: 1
    #6
    BEACOPP
    This is allready old topic. I dont know how much it has changed in USA, but in Europe BEACOPP has been quite a normal treatment for a years allready.

    I live in Finland and i was diagnosed Hodgkin lymphoma (4B) spring 2008. I did get 6 months of BEACOPP and i did get clean papers after that (fall 2008). So now i have been without drugs for about 1½ years.

    Drugs were easier that i thought. I was able to work almost all the time and i was working also those days from hospital when i did have to be there (working was one of the things for me to survive mentally). I was only 23years old so that was helping me also.

    Only long term side effect that i have is that i suffer of coldnes. I dont have to be long time outside wihtout cloves and my fingers are totally white. One finger is suffering more than the others. Doctor said that this is quite common problem. Its not so big problem in warmer countrys but currently its -20 celcius outside in Finland :) But thats something that happened after treatment that i suffer more of the cold weather, but thats a really small thing.

    Have to say that quite a powerfull medicines and im happy that they use those in Finland.

    -Jami-

    EDIT: Forget to mention that there is at least a litte bit of information available in Wikipedia about BEACOPP: http://en.wikipedia.org/wiki/BEACOPP
  • yannabg
    yannabg Member Posts: 1
    #7
    cupac said:

    Hi
    I also had BEACOPP treatment 4 1/2 years ago. My periods are a bit funny and irregular although I do get them so I am not menopausal just yet. The chance of getting leukemia and other cancers is very small my specialist informed me. I have not tried having children yet, but am about to start. However, my friend who had accelerated BEACOPP treatment at the same time I did, now has a beautiful 2 year old baby (the pregnancy was quite a nice suprise for her because doctors told her that she couldn't have kids). She was a stage 4B also with bone marrow infection and is still going strong as yourself. Be glad that BEACOPP was around because the cure rate with this cocktail of drugs for your staging and mine (3B) is 90%.

    beacopp

    Hi Cupac,

    My name is YAnna and i am from bulgaria. i am going through my treatment with beacopp in the moment and completed 4 rounds already i will have  next week scan to check how everything is going. I would like to know how  you feel after your threatment and years passed. do you have children?

    Regards,

    Yanna

  • Hrishikesh
    Hrishikesh Member Posts: 2
    #8
    JaspaJami said:

    BEACOPP
    This is allready old topic. I dont know how much it has changed in USA, but in Europe BEACOPP has been quite a normal treatment for a years allready.

    I live in Finland and i was diagnosed Hodgkin lymphoma (4B) spring 2008. I did get 6 months of BEACOPP and i did get clean papers after that (fall 2008). So now i have been without drugs for about 1½ years.

    Drugs were easier that i thought. I was able to work almost all the time and i was working also those days from hospital when i did have to be there (working was one of the things for me to survive mentally). I was only 23years old so that was helping me also.

    Only long term side effect that i have is that i suffer of coldnes. I dont have to be long time outside wihtout cloves and my fingers are totally white. One finger is suffering more than the others. Doctor said that this is quite common problem. Its not so big problem in warmer countrys but currently its -20 celcius outside in Finland :) But thats something that happened after treatment that i suffer more of the cold weather, but thats a really small thing.

    Have to say that quite a powerfull medicines and im happy that they use those in Finland.

    -Jami-

    EDIT: Forget to mention that there is at least a litte bit of information available in Wikipedia about BEACOPP: http://en.wikipedia.org/wiki/BEACOPP

    Hi Jami.... I am Hrishikesh from India... 28 yrs old....

    Congratulation that u have overcome it suuceesfully.My nly sister 21 yrs old is diagonised with Classical Hodgkin Lymphoma iiiB  four months ago.She was given 6 cycle of ABVD.But after three cycle in PET scan was done and Doctor advised for s BEACOPP. She had her first cycle of BEACOPP but after 15 days of first cycle of BEACOPP she suffered from fever and chill.Daily three times she chills and fever comes back upto 103 F.Sometime it feared us.She was hospitalised But after five days of hospitalisation her fever was not gone .. She was given antibiotic saline again and again.Ceftum oraly...then ofloxen and ceftioxen for two days then Morpenem for three says.. simultaneously the doctors did all the test of blood for any viral and bacterial infection...Even for blood cancer...Dengue.Malaria.Typhoid etc.Nothing was positive.I think this fever called FUO (Fever with unidentified origin).After they given one Oral medicine with Crocine named T. Naprosyn which is used for any inflammation in body.Finally it works and her WBC and ESR count reduce to the level so that they can give her next cycle of BEACOPP.We are financially not very sound.We are a little bit relax that her next cycle starts finally.But shocking thing for us is today doctor told my father that after treatment they have to do Bone marrow transplanation since BEACOPP destroys good cell in blood and make the patient weak to reproduce sufficient WBC . Please tell me is it done  to anyone of u..

    Is it normal... for IIIB cHL patient.please help....

  • Hrishikesh
    Hrishikesh Member Posts: 2
    #9
    cupac said:

    Hi
    I also had BEACOPP treatment 4 1/2 years ago. My periods are a bit funny and irregular although I do get them so I am not menopausal just yet. The chance of getting leukemia and other cancers is very small my specialist informed me. I have not tried having children yet, but am about to start. However, my friend who had accelerated BEACOPP treatment at the same time I did, now has a beautiful 2 year old baby (the pregnancy was quite a nice suprise for her because doctors told her that she couldn't have kids). She was a stage 4B also with bone marrow infection and is still going strong as yourself. Be glad that BEACOPP was around because the cure rate with this cocktail of drugs for your staging and mine (3B) is 90%.

    Hi    if u were in IIIB ....

    Hi    if u were in IIIB .... had ur doctor talks about bone marrow transplanation...is it necessary for all patient because My nly sister 21 yrs old is on hospital taking second cycle of BEACOPP ... three cycle ABVD before BEACOPP.

Discussion Boards