Hodgkin's treatment options

kricket47
kricket47 Member Posts: 4
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
I was diagnosed with Hodgkin's Lymphoma last month, and I've had two different opinions on treatment from two different oncologists. The first oncologist recommended 4 cycles of ABVD and then radiation to my chest. The second oncologist recommended 6 cycles of ABVD, and he told me to avoid radiation. If the chemo doesn't get rid of everything, he would recommend a stem-cell transplant. I'm going to be getting a third opinion tomorrow. I know each case is different, but I was wondering what kinds of treatments other people have gone through. Thanks!

Comments

  • JynxPhD
    JynxPhD Member Posts: 11
    #2
    Treatment Options
    I am sure you will get a lot of input here but I wanted to give you mine. My husband was diagnosed in Aug 2009 with a 20cm x 20cm mediastinal mass. He has had 6 cycles of ABVD. His PET after 4 cycles was still positive but the onco thinks it is just inflammation. After he finishes his 6 cycles tomorrow then he will have a follow up PET in 3-4 weeks. If it is still positive then he will have 1-2 cycles of etoposide and cisplatin but no mention of stem cell transplant. If the PET is negative he will have 2 months of radiation to the tumor area to kill any remaining cancer cells.

    I think treatments depend on stage and location of tumors. What stage are you? If you want to see my husband's story, I have blogged about it at thebarragerfoundation.com. I can tell you he has handled the chemos well. No real vomiting just some tiredness and he continues to work full time in between treatments. Good luck to you!
    Melody
  • missC
    missC Member Posts: 6
    #3
    options
    Hey,
    I'm currently on cycle 5 of 6 ABVD. I had a bulky stage IIB tumor which was mostly gone based on PET after cycle 2.
    I had a rather lengthy consultation with the radiation oncologist today on what my options were after chemo, and for my specific case radiation was recommended.
    Of course there are always a lot of factors that go into the decision of chemo vs. radiation vs. both, but the approach taken by my doc is the "25 years from now" approach. According to her, there are less long term side effects in a regimen combining ABVD and low-dose narrow field radiation than in a regimen of ABVD+stronger chemo.
    The area they have to radiate is relatively small and only includes a small part of my heart and lung, which decreases the risk of having major long-term side effects to those organs. I will probably have a crapped-out thyroid though. And since I'm a woman I'm more at risk for breast cancer afterwards.
    I asked her for her opinion on not doing radiation, and she said that if the hodge comes back I would have to get stronger chemo, for which the long-term side effects are probably going to be worse than low-dose radiation, and I might have to recieve radiation afterwards anyway.

    That's just my case, and every patient is different. I'm only 20, so long-term thinking is a big factor for me. If you were diagnosed later in life, its possible that some of the long-term effects of chemo or radiation would not show up before you would be sufficiently old anyway, so that might factor into your decision too.

    It's scary, especially if you just got diagnosed, but once you start figuring things out I found it got easier to deal with things. And since both of your doctors have recommended ABVD, you at least don't have the make the decision about radiation immediately. :)

    -MissC
  • sassemink
    sassemink Member Posts: 9
    #4
    i underwent 6 abvd and 25
    i underwent 6 abvd and 25 radiation treatments. didn't appear to be an option not to do it (radiation). i harvested stem cells for a transplant because my mass was 19 cm wide. i was stage 4 nodular sclorosing hodgkins. still have 5.8 cm of mass left which will always be there. of course there are long term effects that i will have to worry about down the road, but my intent was (and still is) to see my children grown. so i was/am willing to do whatever it takes to get that done. i was diagnosed 4 years ago (march 11) and my family was told i had a 20 percent chance of survival. the doctor said not to worry about staging, we were looking at a cure. so i went with it, believed it, and here i am. won't say i don't have my "moments"...especially at check up time...

    regarding stem cells, we (my onc, specifically) after consulting with his collegues at mayo there in fl and in minn along with leuk and lym society...opted to freeze stem cells in case of a recurrence b/c PET came back clear after chemo...but not doing radiation wasn't option. my mass actually shrank almost 3 more cm after radiation.

    good luck. you'll find the answer you need. when the right doctor is in front of you, you'll know. i was blessed to have my oncologist...still am. he was a great support to me.
  • MyMister
    MyMister Member Posts: 3 Member
    #5
    sassemink said:

    i underwent 6 abvd and 25
    i underwent 6 abvd and 25 radiation treatments. didn't appear to be an option not to do it (radiation). i harvested stem cells for a transplant because my mass was 19 cm wide. i was stage 4 nodular sclorosing hodgkins. still have 5.8 cm of mass left which will always be there. of course there are long term effects that i will have to worry about down the road, but my intent was (and still is) to see my children grown. so i was/am willing to do whatever it takes to get that done. i was diagnosed 4 years ago (march 11) and my family was told i had a 20 percent chance of survival. the doctor said not to worry about staging, we were looking at a cure. so i went with it, believed it, and here i am. won't say i don't have my "moments"...especially at check up time...

    regarding stem cells, we (my onc, specifically) after consulting with his collegues at mayo there in fl and in minn along with leuk and lym society...opted to freeze stem cells in case of a recurrence b/c PET came back clear after chemo...but not doing radiation wasn't option. my mass actually shrank almost 3 more cm after radiation.

    good luck. you'll find the answer you need. when the right doctor is in front of you, you'll know. i was blessed to have my oncologist...still am. he was a great support to me.

    Wow, why 20 percent chance
    Wow, why 20 percent chance of survival? So different than what we've been told and also dealing with NS Hodgkins. Glad you showed them!!
  • sassemink
    sassemink Member Posts: 9
    #6
    MyMister said:

    Wow, why 20 percent chance
    Wow, why 20 percent chance of survival? So different than what we've been told and also dealing with NS Hodgkins. Glad you showed them!!

    i suppose because i was
    i suppose because i was soooo terribly sick by the time i was diagnosed...i had symptoms looking back for close to 2 years that i ignored...was told i had winter itch by a local dermatologist when all the sores showed up on my legs...progressed to the scalp. i had lost about 30 pounds, the mass had compressed the left ventricle to 37% function and the right had doubled in size to try to compensate. my left lung was almost completely closed off. i couldn't swallow much food at a time because that whole area had been shifted by the mass. my bp wouldn't break 100. i underwent 2 liquid iron transfusions before i was diagnosed because i was absolutely anemic. when i got to the mayo, i had to have a tamponade (sp?) inserted in my chest because there was over a quart of fluid surrounding my heart. i had let myself get really in bad shape, but i wanted to get through christmas for my children. so i put off going back to the doctor till january. i went the previous august (when i went back to work...i'm a teacher), then went again in october and received a z-pack each time...i suppose not knowing my chance of survival was so low also was a positive...only my husband knew and didn't tell me til it was "over". i took the doctor's word for what it was, and just went with the flow...treatments, tests, etc...
  • kricket47
    kricket47 Member Posts: 4
    #7
    JynxPhD said:

    Treatment Options
    I am sure you will get a lot of input here but I wanted to give you mine. My husband was diagnosed in Aug 2009 with a 20cm x 20cm mediastinal mass. He has had 6 cycles of ABVD. His PET after 4 cycles was still positive but the onco thinks it is just inflammation. After he finishes his 6 cycles tomorrow then he will have a follow up PET in 3-4 weeks. If it is still positive then he will have 1-2 cycles of etoposide and cisplatin but no mention of stem cell transplant. If the PET is negative he will have 2 months of radiation to the tumor area to kill any remaining cancer cells.

    I think treatments depend on stage and location of tumors. What stage are you? If you want to see my husband's story, I have blogged about it at thebarragerfoundation.com. I can tell you he has handled the chemos well. No real vomiting just some tiredness and he continues to work full time in between treatments. Good luck to you!
    Melody

    thanks
    Thanks for your comments - I will definitely check out your blog. I was diagnosed as stage IIA, although I have been getting more severe symptoms over the past few weeks, so I'm thinking it might be a 'B' by now. My largest mass was 12cm by 6cm - not quite as big as your husbands, but I guess still big enough to warrant getting the radiation. I received a third opinion since I posted, and I was told that I should definitely get the radiation. I had been hoping that the chemo would be enough for me, but so far two doctors say I should definitely have the radiation because of the size of my mass.

    I'm looking forward to reading your blog. Best wishes to you and your husband as you go through this.

    -Christine
  • kricket47
    kricket47 Member Posts: 4
    #8
    missC said:

    options
    Hey,
    I'm currently on cycle 5 of 6 ABVD. I had a bulky stage IIB tumor which was mostly gone based on PET after cycle 2.
    I had a rather lengthy consultation with the radiation oncologist today on what my options were after chemo, and for my specific case radiation was recommended.
    Of course there are always a lot of factors that go into the decision of chemo vs. radiation vs. both, but the approach taken by my doc is the "25 years from now" approach. According to her, there are less long term side effects in a regimen combining ABVD and low-dose narrow field radiation than in a regimen of ABVD+stronger chemo.
    The area they have to radiate is relatively small and only includes a small part of my heart and lung, which decreases the risk of having major long-term side effects to those organs. I will probably have a crapped-out thyroid though. And since I'm a woman I'm more at risk for breast cancer afterwards.
    I asked her for her opinion on not doing radiation, and she said that if the hodge comes back I would have to get stronger chemo, for which the long-term side effects are probably going to be worse than low-dose radiation, and I might have to recieve radiation afterwards anyway.

    That's just my case, and every patient is different. I'm only 20, so long-term thinking is a big factor for me. If you were diagnosed later in life, its possible that some of the long-term effects of chemo or radiation would not show up before you would be sufficiently old anyway, so that might factor into your decision too.

    It's scary, especially if you just got diagnosed, but once you start figuring things out I found it got easier to deal with things. And since both of your doctors have recommended ABVD, you at least don't have the make the decision about radiation immediately. :)

    -MissC

    thank you
    Thanks for sharing your treatment. I am concerned about the possibility of breast cancer, as well, but I have to weigh all of the risks and benefits of treatment. From the third opinion I received, it sounds as if adding the radiation is going to significantly decrease the chance that it will return. You're right, though - I don't have to make the decision immediately. I appreciate your comments, and I wish you the best of luck during your treatment!

    -Christine
  • kricket47
    kricket47 Member Posts: 4
    #9
    sassemink said:

    i underwent 6 abvd and 25
    i underwent 6 abvd and 25 radiation treatments. didn't appear to be an option not to do it (radiation). i harvested stem cells for a transplant because my mass was 19 cm wide. i was stage 4 nodular sclorosing hodgkins. still have 5.8 cm of mass left which will always be there. of course there are long term effects that i will have to worry about down the road, but my intent was (and still is) to see my children grown. so i was/am willing to do whatever it takes to get that done. i was diagnosed 4 years ago (march 11) and my family was told i had a 20 percent chance of survival. the doctor said not to worry about staging, we were looking at a cure. so i went with it, believed it, and here i am. won't say i don't have my "moments"...especially at check up time...

    regarding stem cells, we (my onc, specifically) after consulting with his collegues at mayo there in fl and in minn along with leuk and lym society...opted to freeze stem cells in case of a recurrence b/c PET came back clear after chemo...but not doing radiation wasn't option. my mass actually shrank almost 3 more cm after radiation.

    good luck. you'll find the answer you need. when the right doctor is in front of you, you'll know. i was blessed to have my oncologist...still am. he was a great support to me.

    thanks
    Thanks for your reply - I really appreciate the information. It sounds as though radiation is recommended for a lot of patients. I'm so glad to hear your story of success - it gives me a lot of hope.

    -Christine
  • sandybe
    sandybe Member Posts: 40
    #10
    kricket47 said:

    thanks
    Thanks for your reply - I really appreciate the information. It sounds as though radiation is recommended for a lot of patients. I'm so glad to hear your story of success - it gives me a lot of hope.

    -Christine

    Kricket
    It's not fair to have to make this decision is it?!
    In 2007 I underwent 6 rounds of ABVD for stage 2B Hodgkins with a mediastinal tumour, bulky tumour. I went into remission after the second treatment. It made the next 10 treatments just a little easier to tolerate. Because of the early remission and location of the tumour, even though it was bulky, the hematologist debated several times on radiation, and in the end decided to play the odds against it.
    Needless to say, the odds were against me! In 2008, eight months following the end of chemo, it was back. I ended up having radiation treatments anyways. Looking back at those times, if I had to do it over again, I honestly don't know if I would have done rads immediately following chemo or if I would have done it the same way I did and took the chance. Chemo was tough, but I found rads tougher. Most find it the opposite and breeze through rads.
    I really hope you live a long and happy life, and breeze through treatment! Good luck in your treatment.

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