New to lymphoma but not cancer

Jeen
Jeen Member Posts: 24
in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hello everyone,

I was DX with stage IV lymphoma via bone marrow biopsy with 3% involvement. My PET scan and blood were negative. My doc believes it is fnhl so she is recommending watching and worrying...she says I should not be upset as it is highly treatable but the websites I ahve cruised give me a 10 year expiration date.

Any personal experience with this same stage disease would be very reassuring thanks.

Jeen
«1

Comments

  • Unknown
    Unknown
    #2
    No Expiration Date
    Hi Jeen

    I was DX with Stage IV fnhl in October 2011. However all signs indicate I have had it for several years before being diagnosed. At first I wondered how much of my 10 years remained. Now I know that we are all different and also that the 10 years is the median survival time. At least 1/2 the people do better and my oncologist says he knows a few who have gone 25 years or even longer. I have bone marrow involvement at 26% and scar tissue from previous undiagnosed and untreated bouts. Sounds like you are "non-bulky", meaning no large tumors, making you a good candidate for Rituxan monotherapy. Its a tough decision you have. Many Drs. will say that chemo and/or Rituxan improve quality of life but seem to give no increase in overall survival. That being the case one has to ask why would you do Rituxan or chemo if you are comfortable and no organs are threatened.I am living proof that you can have this for several years and do OK even without treatment. Tough decision but I think you will make the right one.

    All my best
    Garry
  • Jeen
    Jeen Member Posts: 24
    #3
    unknown said:

    No Expiration Date
    Hi Jeen

    I was DX with Stage IV fnhl in October 2011. However all signs indicate I have had it for several years before being diagnosed. At first I wondered how much of my 10 years remained. Now I know that we are all different and also that the 10 years is the median survival time. At least 1/2 the people do better and my oncologist says he knows a few who have gone 25 years or even longer. I have bone marrow involvement at 26% and scar tissue from previous undiagnosed and untreated bouts. Sounds like you are "non-bulky", meaning no large tumors, making you a good candidate for Rituxan monotherapy. Its a tough decision you have. Many Drs. will say that chemo and/or Rituxan improve quality of life but seem to give no increase in overall survival. That being the case one has to ask why would you do Rituxan or chemo if you are comfortable and no organs are threatened.I am living proof that you can have this for several years and do OK even without treatment. Tough decision but I think you will make the right one.

    All my best
    Garry

    expiration date
    I have had a very long fight with cancer. First breast in 2007, then in February 2012 sarcoma which was treated with excision, the conjunctival melanoma in situ, which I am on chemo for until November, and last week this lymphoma.

    I am shocked with all the oncologists I have seen, no one considered this !

    Thank you for your input, I am getting a 2nd opinion, and then will decide.

    Jeen
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #4
    Jeen said:

    expiration date
    I have had a very long fight with cancer. First breast in 2007, then in February 2012 sarcoma which was treated with excision, the conjunctival melanoma in situ, which I am on chemo for until November, and last week this lymphoma.

    I am shocked with all the oncologists I have seen, no one considered this !

    Thank you for your input, I am getting a 2nd opinion, and then will decide.

    Jeen

    WEB SITES
    Jeen,
    Be careful with those websites. We all fell into that catagory at first. They are outdated and will scare you to death. I also was diagnosed with stage 4,but now in remission since late 2010. I had the chemo R-CVP. I believe Drs. try to play God a lot of times,but remember we are individuals and react differently to everything in life including cancer. The Dr. was right about the very treatable part it seems. You will see a lot of people on here that can back that up. We have had so many members in the past that have sort of desserted us and got along with their normal lives.I can't say I blame them. Afterall they have their lives to live as they did before diagnosis. Just making the point that people go on to live a near normal life again. John
  • Jeen
    Jeen Member Posts: 24
    #5
    COBRA666 said:

    WEB SITES
    Jeen,
    Be careful with those websites. We all fell into that catagory at first. They are outdated and will scare you to death. I also was diagnosed with stage 4,but now in remission since late 2010. I had the chemo R-CVP. I believe Drs. try to play God a lot of times,but remember we are individuals and react differently to everything in life including cancer. The Dr. was right about the very treatable part it seems. You will see a lot of people on here that can back that up. We have had so many members in the past that have sort of desserted us and got along with their normal lives.I can't say I blame them. Afterall they have their lives to live as they did before diagnosis. Just making the point that people go on to live a near normal life again. John

    Thank you
    That is good to know. Some of those websites were sources that are suppose to be reliable!

    Are there other people with wait and worry standing with stage iv? It is hard to believe that with a stage iv diagnosis ....I should do nothing....it is counter intuitive to me.

    Although as my doc says I have no tumors, my PET is clear, and so are my bloods...but 3% of my bone marrow is positive.

    Thanks
  • Jeen
    Jeen Member Posts: 24
    #6
    COBRA666 said:

    WEB SITES
    Jeen,
    Be careful with those websites. We all fell into that catagory at first. They are outdated and will scare you to death. I also was diagnosed with stage 4,but now in remission since late 2010. I had the chemo R-CVP. I believe Drs. try to play God a lot of times,but remember we are individuals and react differently to everything in life including cancer. The Dr. was right about the very treatable part it seems. You will see a lot of people on here that can back that up. We have had so many members in the past that have sort of desserted us and got along with their normal lives.I can't say I blame them. Afterall they have their lives to live as they did before diagnosis. Just making the point that people go on to live a near normal life again. John

    Thank you
    That is good to know. Some of those websites were sources that are suppose to be reliable!

    Are there other people with wait and worry standing with stage iv? It is hard to believe that with a stage iv diagnosis ....I should do nothing....it is counter intuitive to me.

    Although as my doc says I have no tumors, my PET is clear, and so are my bloods...but 3% of my bone marrow is positive.

    Thanks
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #7
    Jeen said:

    Thank you
    That is good to know. Some of those websites were sources that are suppose to be reliable!

    Are there other people with wait and worry standing with stage iv? It is hard to believe that with a stage iv diagnosis ....I should do nothing....it is counter intuitive to me.

    Although as my doc says I have no tumors, my PET is clear, and so are my bloods...but 3% of my bone marrow is positive.

    Thanks

    Watch and wait
    Jeen,
    It seems a lot of the Drs. want to wait to see if and how fast it is progressing before they do anything. If its stable they figure why do anything now. If it starts to progress then they take the action. I know how you feel about doing nothing. I would feel the same way as you. I would want this stuff out of me right away. Make sure you question them about it and why they want to watch and wait. 2nd opinions are good.John
    I heard recently what we have was not even consider cancer a few years ago. It was just refered to as Hodgkins Disease. When they discovered that some cancer meds had an effect on it was reclassified as Hodgkins Lymphoma.Watch out Arthritis sufferers because they are finding that some cancer meds help them as well.
  • COBRA666
    COBRA666 Member Posts: 2,401 Member
    #8
    unknown said:

    No Expiration Date
    Hi Jeen

    I was DX with Stage IV fnhl in October 2011. However all signs indicate I have had it for several years before being diagnosed. At first I wondered how much of my 10 years remained. Now I know that we are all different and also that the 10 years is the median survival time. At least 1/2 the people do better and my oncologist says he knows a few who have gone 25 years or even longer. I have bone marrow involvement at 26% and scar tissue from previous undiagnosed and untreated bouts. Sounds like you are "non-bulky", meaning no large tumors, making you a good candidate for Rituxan monotherapy. Its a tough decision you have. Many Drs. will say that chemo and/or Rituxan improve quality of life but seem to give no increase in overall survival. That being the case one has to ask why would you do Rituxan or chemo if you are comfortable and no organs are threatened.I am living proof that you can have this for several years and do OK even without treatment. Tough decision but I think you will make the right one.

    All my best
    Garry

    Expiration Date
    Garry,
    I believe most of us had this for quite a while before it was discovered. It takes a while for any deep set tumors to show. Especially in the abdominal area. Mine was found accidently on a routine ct scan ordered by my Urologist to check the urinary tract. It was not even suspected. John
  • miss maggie
    miss maggie Member Posts: 929
    #9
    Upsetting
    Dear Jeen,

    As everyone has said, stay off some websites.

    I have to admit, when I read your words "expiration date", it really upset me. I can just
    imagine how you must of felt.

    Please stay positve. Whenever you feel down and scared, please share your feelings with Us.

    Blessings and positive energy. Love Maggie
  • Jeen
    Jeen Member Posts: 24
    #10
    miss maggie said:

    Upsetting
    Dear Jeen,

    As everyone has said, stay off some websites.

    I have to admit, when I read your words "expiration date", it really upset me. I can just
    imagine how you must of felt.

    Please stay positve. Whenever you feel down and scared, please share your feelings with Us.

    Blessings and positive energy. Love Maggie

    Thank you
    Thank you for giving me an opportunity to say what I could never say elsewhere...

    I am forever greatful.

    Jeen
  • Jeen
    Jeen Member Posts: 24
    #11
    miss maggie said:

    Upsetting
    Dear Jeen,

    As everyone has said, stay off some websites.

    I have to admit, when I read your words "expiration date", it really upset me. I can just
    imagine how you must of felt.

    Please stay positve. Whenever you feel down and scared, please share your feelings with Us.

    Blessings and positive energy. Love Maggie

    Thank you
    Thank you for giving me an opportunity to say what I could never say elsewhere...

    I am forever greatful.

    Jeen
  • Unknown
    Unknown
    #12
    Jeen said:

    Thank you
    That is good to know. Some of those websites were sources that are suppose to be reliable!

    Are there other people with wait and worry standing with stage iv? It is hard to believe that with a stage iv diagnosis ....I should do nothing....it is counter intuitive to me.

    Although as my doc says I have no tumors, my PET is clear, and so are my bloods...but 3% of my bone marrow is positive.

    Thanks

    Fnhl staging
    My guess is you are arbitrarily Stage IV because of bone marrow involvement. But don't let that bother you because research shows that people with bone marrow involvement have the same prognosis as others.
  • Jeen
    Jeen Member Posts: 24
    #13
    Jeen said:

    Thank you
    Thank you for giving me an opportunity to say what I could never say elsewhere...

    I am forever greatful.

    Jeen

    No more debate about watching and worrying...
    I Am confused again...

    Today at my oncologists visit my platelets were down to 70,000. Since August they have been decreasing from 150 to 120, 109, then 70. The last visit they went to 120, but today back to 70.

    My oncologist actually found the lymphoma in a BMB because of this platelet phenomena. cease of this I will be starting Rituxin and prednisone.

    Is this a common symptom?

    thanks for answering all my probably redundant questions, that I don't think to ask .

    Jeen
  • anliperez915
    anliperez915 Member Posts: 770
    #14
    Jeen said:

    expiration date
    I have had a very long fight with cancer. First breast in 2007, then in February 2012 sarcoma which was treated with excision, the conjunctival melanoma in situ, which I am on chemo for until November, and last week this lymphoma.

    I am shocked with all the oncologists I have seen, no one considered this !

    Thank you for your input, I am getting a 2nd opinion, and then will decide.

    Jeen

    Hi Jeen
    Hi Jeen,
    Sorry for the late welcome, but glad that you found this group. I was actually stunned to read about all the cancers you've had, this tells me that you are a strong person and will get through this also! Take care and stay strong.

    Sincerely,
    Liz
  • Unknown
    Unknown
    #15
    Jeen said:

    No more debate about watching and worrying...
    I Am confused again...

    Today at my oncologists visit my platelets were down to 70,000. Since August they have been decreasing from 150 to 120, 109, then 70. The last visit they went to 120, but today back to 70.

    My oncologist actually found the lymphoma in a BMB because of this platelet phenomena. cease of this I will be starting Rituxin and prednisone.

    Is this a common symptom?

    thanks for answering all my probably redundant questions, that I don't think to ask .

    Jeen

    Platelets
    I don't know the answer to your question however I am sure you will do well on Rituxan.
  • Jeen
    Jeen Member Posts: 24
    #16
    anliperez915 said:

    Hi Jeen
    Hi Jeen,
    Sorry for the late welcome, but glad that you found this group. I was actually stunned to read about all the cancers you've had, this tells me that you are a strong person and will get through this also! Take care and stay strong.

    Sincerely,
    Liz

    I am also stunned ..(hehe)
    I am stunned too....and of course I have my moments.
    But I am a fighter....I of course did not volunteer for any of this...but I am a fighter, even though I was drafted, nonetheless
    Besides my own personal journey through too many illnesses...
    I ran an AIDs program back in the 90's to help get patients new clinical trials and support both financial and emotional, while getting though this.
    We were pretty successful... but when my brother died of it, I decided I wanted to work with the inmate population as an inmate advocate in an effort to provide support and knowledge in that area, before it was too late.
    When I remarried again, I though I'd take a break from prisons while I had my second child.
    She was a premie, and had some medical and learning issues, sooooo, I got up to speed on special education issues, went to law school, and opened a practice serving only kids with disabilities. Both my daughter and son have ADHD, but my son is in law school now, and my daughter is a senior looking to go to Georgetown , Brown, or Boston University. Advocacy works!!
    My journey wasn't without difficulty...My 1st round of law school, my Lung collapsed , and I was DX with lung disease.....my second round 20 years later I got breast cancer....
    But ...I keep putting one foot in front of the other and try to find the best tx, best dr.'s and best path for me...that's all any of us can do.
    Thank you all for welcoming me into your group!
  • Jeen
    Jeen Member Posts: 24
    #17
    COBRA666 said:

    Watch and wait
    Jeen,
    It seems a lot of the Drs. want to wait to see if and how fast it is progressing before they do anything. If its stable they figure why do anything now. If it starts to progress then they take the action. I know how you feel about doing nothing. I would feel the same way as you. I would want this stuff out of me right away. Make sure you question them about it and why they want to watch and wait. 2nd opinions are good.John
    I heard recently what we have was not even consider cancer a few years ago. It was just refered to as Hodgkins Disease. When they discovered that some cancer meds had an effect on it was reclassified as Hodgkins Lymphoma.Watch out Arthritis sufferers because they are finding that some cancer meds help them as well.

    no more watch and worry
    because my platelets have been going up and down over the last 2 months, which was the reason for the BMB and the discovery...I am starting Rituxan and prednisone .

    I have been off prednisone for 2 years and I was just getting used to the size of my head.....oh well...
    Jeen
  • Jeen
    Jeen Member Posts: 24
    #18
    unknown said:

    Platelets
    I don't know the answer to your question however I am sure you will do well on Rituxan.

    thanks anyway
    Thanks for responding anyway...sometimes it's comforting to just read a response because you then feel as if someone shares your pain.
    gracias!
  • jimwins
    jimwins Member Posts: 2,107
    #19
    Jeen said:

    I am also stunned ..(hehe)
    I am stunned too....and of course I have my moments.
    But I am a fighter....I of course did not volunteer for any of this...but I am a fighter, even though I was drafted, nonetheless
    Besides my own personal journey through too many illnesses...
    I ran an AIDs program back in the 90's to help get patients new clinical trials and support both financial and emotional, while getting though this.
    We were pretty successful... but when my brother died of it, I decided I wanted to work with the inmate population as an inmate advocate in an effort to provide support and knowledge in that area, before it was too late.
    When I remarried again, I though I'd take a break from prisons while I had my second child.
    She was a premie, and had some medical and learning issues, sooooo, I got up to speed on special education issues, went to law school, and opened a practice serving only kids with disabilities. Both my daughter and son have ADHD, but my son is in law school now, and my daughter is a senior looking to go to Georgetown , Brown, or Boston University. Advocacy works!!
    My journey wasn't without difficulty...My 1st round of law school, my Lung collapsed , and I was DX with lung disease.....my second round 20 years later I got breast cancer....
    But ...I keep putting one foot in front of the other and try to find the best tx, best dr.'s and best path for me...that's all any of us can do.
    Thank you all for welcoming me into your group!

    Hi Jeen and welcome
    Wow, you have certainly had the gamut of challenges haven't you?

    Now, my wicked sense of humor here - do you suppose a centipede ever has that
    thought "just put one foot in front of the other"? It would probably make
    a good "Farside" type cartoon I guess.

    Regarding "expiration dates", I can't tell you how many gallons of milk
    and pints of sour cream I've used past the "expiration date" ;).

    Laughter is good. Welcome, Jeen.

    Hugs and positive wishes,

    Jim
  • forme
    forme Member Posts: 1,161 Member
    #20
    Welcome
    Hi Jeen

    I just want to add my welcome to the most wonderful and supportive group. You can ask anything at all. No question is silly or out of line. Ask away, someone will always get back to you.

    I read that you are now going to start the rutuxin and pred treatments, many folks here have done that or are doing that now. So if you have any concerns or questions about the R treatment, you will likely receive a ton of replys.

    We are all here for you, so keep with us.

    Thinking of you
    Lisha
  • onlytoday
    onlytoday Member Posts: 609 Member
    #21
    Jeen said:

    Thank you
    That is good to know. Some of those websites were sources that are suppose to be reliable!

    Are there other people with wait and worry standing with stage iv? It is hard to believe that with a stage iv diagnosis ....I should do nothing....it is counter intuitive to me.

    Although as my doc says I have no tumors, my PET is clear, and so are my bloods...but 3% of my bone marrow is positive.

    Thanks

    Welcome
    Hi Jeen,

    Sorry you have to be here at all. But welcome.

    Just to give you some perspective, I had over 55% bone marrow involvement with lymph node involvement classifying me as stage iv like you. I just finished 6 months of chemo
    (Bendamustine with Ofatumumab) I will know in a month how successful this treatment plan was!

    This is a very sophisticated disease (my oncologist's words) and is individual. Truly no two cases are the same.

    The idea to treat with Prednisone and Rituxan sounds like a sound plan. I originally had Rituxan in 2010 but had an allergic reaction to it so it proved not very helpful for me. Many here have been successfully treated with Rituxan. Prednisone (although annoying, as you know) does work very well on cancer.

    All the best to you. You aren't alone with this new challenge.

    Hugs,
    Donna

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