Worried!

amanda_33
amanda_33 Member Posts: 13
in Lymphoma (Hodgkin and Non-Hodgkin) #1
I am so worried. I was diagnoised with diffuse large B cell lymphoma (bulky stage 2)in December 2011. At that time the mass on my lung was 15.5 x 10.5 cm. Since then I have had 5 chemo treatments and I also had a CT scan done last week to see how things are progressing. My doctor told me that he was sure that since I had handled chemo so well and all of my symptoms were gone that the mass was probably gone or atleast very small. Well, when I saw him today he told me that the CT scan shows that the mass on my lung is now 7.7 x 6.1 cm. Which is great, because it is half the size it was when I started. So now the plan is to have three more treatments (which will be a total of 8) and then do a pet scan. He then told me that if there is any cancer left at all after the 8 treatments that I would need to see a specialist which would most likely lead to a stem cell transplant. He said that this would be necessary beacuse lymphoma is so agressive if any of it were left then it would just continue to grow rapidly. After hearing this my brain turned to mush and all of the questions I wanted to ask just didn't make it into words. So, now that I have had time to think about things I was wondering why he did not even metion the idea of radiation to get rid of any remaining cancer. Maybe it's just me, but I think that this seems a little extreme sicne radiation was not even mentioned. So my question is, is this standard procedure or is my doctor being a little extreme? Has this happened to anyone else? Has anyone had this procedure done and if so what was it like? Thanks for listening and thanks for any advice or feedback. Amanda

Comments

  • jimwins
    jimwins Member Posts: 2,107
    #2
    Hi Amanda
    Hi Amanda,

    I know this is scary but the good news is you are responding to treatment.
    I hope the remaining treatments obliterate the cancer and discussion of
    a stem cell transplant won't be an issue. Regarding radiation, don't know
    why that wouldn't be an option unless your tumor is near other tissue/organs
    that make that difficult. I'm not a doctor but I'd ask your oncologist about that.


    Lots of folks on here have had stem cell transplants and hopefully one of them
    will chime in soon.

    Hang in there! Just wanted you to know we're listening.

    Hugs and positive thoughts,

    Jim
    DX: DLBL 4/2011, Chemo completed 10/2011, currently in remission. :)
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  • vinny59
    vinny59 Member Posts: 1,036 Member
    #3
    always ask
    Don't be afraid to go back to your Oncologist, and ask about the radiation treatments. I know myself that it took all 8 chemo regiments to knock out my cancer completely. I still have a spot in my hip bone that they are considering zapping with radiation if it grows anymore. From the beginning my oncologist told me that radiation is not the go to treatment with lymphoma. Take care Amanda and please keep us posted.... Vinny
  • nickydog
    nickydog Member Posts: 76
    #4
    Treatment
    Hi
    I just wanted to respond to your post with what I hope will help make you feel better. My daughter was diagnosed with Hodgkin's back in 2010. She had quite a large mass in her chest 15cm by 10 cm. From August to December it had shrunk to one third of its original size. After completing her chemo, there was some very slight activity which was detected on her PET scan, and of course her doctor advised it be treated. He had her take radiation-20 very low doses to be sure that it was gone. She did not have a stem cell transplant even though he did talk about it if the radiation didn't work or if she should relapse. Just to let you know that she is fine, she has had several check ups since finishing her chemo over a year ago, and radiation back in Aug 2011, all of which have been great. Her doctors are really pleased. In spite of what we all know about radiation/chemo and all its side effects it certainly gave my daughter back her life, and we are very thankful to her doctors and we thank God every day.
  • amanda_33
    amanda_33 Member Posts: 13
    #5
    nickydog said:

    Treatment
    Hi
    I just wanted to respond to your post with what I hope will help make you feel better. My daughter was diagnosed with Hodgkin's back in 2010. She had quite a large mass in her chest 15cm by 10 cm. From August to December it had shrunk to one third of its original size. After completing her chemo, there was some very slight activity which was detected on her PET scan, and of course her doctor advised it be treated. He had her take radiation-20 very low doses to be sure that it was gone. She did not have a stem cell transplant even though he did talk about it if the radiation didn't work or if she should relapse. Just to let you know that she is fine, she has had several check ups since finishing her chemo over a year ago, and radiation back in Aug 2011, all of which have been great. Her doctors are really pleased. In spite of what we all know about radiation/chemo and all its side effects it certainly gave my daughter back her life, and we are very thankful to her doctors and we thank God every day.

    Thanks!
    Hi Everyone,
    Thanks for your responses and you words of wisdom! My family and friends have been wonderful, but it's great to get advice from others who have walked in my shoes and truly understand the journey. I'm going to have to start writing all of my questions down and taking them with me, because usually when he gives me new information my mind becomes a little foggy. My doctor didn't mention radiation yesterday, so I wasn't sure if it's not an option at all or if he is just preparing me for what may come by mentioning the transplant. (Maybe I overreacted a little)I do know that when they did the original CT scan the lung dr was not able to see my heart for the mass on my lung and I believe that it was very close to my heart, so that may be part of the issue. So far I have been very pleased with my doctor, but I have been seriously considering getting a second opinion, especially if the cancer is not gone after the 8th round. I'm not sure if I should go ahead and get one now or wait to see what the pet scan shows at the end. I am soo greatful that my mass has shrunk by half, but I can't lie, when he mentioned the posibility of a transplant I felt a little defeated. Thanks again everyone! Amanda

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