Primary CNS Lymphoma

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  • SusanEmma
    SusanEmma Member Posts: 3
    #42
    Victelio said:

    Excuse my ignorance on acronyms

    WHAT IS NED ?

    PCNSL

    Hello Vic and others!

     

    Just wanted to chime in with another success story concerning PCNSL.

     

    My husband Bob was diagnosed 8/8/08 at the age of 47.

    He was treated at Memorial Sloan Kettering in New York city with high dose chemo and a stem cell transplant. Treatment lasted about eight months start to finish.

    He is  four years in remission and it will be five years since diagnosis in August!

    He still has neuropathy in his hands and feet from the Vincristine, but other than that is healthy. He just had an MRI in March and won't have to go back for another one until next March.

    We are thrilled!

    We had to make the decision whether to wait on the stem cell transplant, or just go for it. We went for it and are so glad we did!

    I do believe this will become the standard of care for this disease soon, if it isn't already now.

    The actual stem cell transplant was anticlimactic, but a few of the high dose chemos were very rough on my husband. He had a lot of bad side effects, set backs and some issues with his heart and liver. They all resolved in time.

  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #43
    SusanEmma said:

    PCNSL

    Hello Vic and others!

     

    Just wanted to chime in with another success story concerning PCNSL.

     

    My husband Bob was diagnosed 8/8/08 at the age of 47.

    He was treated at Memorial Sloan Kettering in New York city with high dose chemo and a stem cell transplant. Treatment lasted about eight months start to finish.

    He is  four years in remission and it will be five years since diagnosis in August!

    He still has neuropathy in his hands and feet from the Vincristine, but other than that is healthy. He just had an MRI in March and won't have to go back for another one until next March.

    We are thrilled!

    We had to make the decision whether to wait on the stem cell transplant, or just go for it. We went for it and are so glad we did!

    I do believe this will become the standard of care for this disease soon, if it isn't already now.

    The actual stem cell transplant was anticlimactic, but a few of the high dose chemos were very rough on my husband. He had a lot of bad side effects, set backs and some issues with his heart and liver. They all resolved in time.

    Great to hear from you

    Hi SusanEmma,

     

    That's awesome news!  Thanks for posting here, it's one thing to hear about statistics of other survivors, but really great to hear from someone "real" and hear that they are doing well, especially at 4 years in remission.  I think I mentioned it earlier, but when I read the standard PCNSL sites at diagnosis, they all seemed very depressing to me, as all I saw was the 48 month prognosis, and no mention of the state of health of patients at that point.

    Interesting to hear about the neuropathy,  I have some of this, and I didn't realize that Vincristine is known as a cause.  It is a small price to pay if the treatment is successful.

     

    Hope your husband continues to do well, and thanks again for posting.

    Dan

  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #44
    SusanEmma said:

    PCNSL

    Hello Vic and others!

     

    Just wanted to chime in with another success story concerning PCNSL.

     

    My husband Bob was diagnosed 8/8/08 at the age of 47.

    He was treated at Memorial Sloan Kettering in New York city with high dose chemo and a stem cell transplant. Treatment lasted about eight months start to finish.

    He is  four years in remission and it will be five years since diagnosis in August!

    He still has neuropathy in his hands and feet from the Vincristine, but other than that is healthy. He just had an MRI in March and won't have to go back for another one until next March.

    We are thrilled!

    We had to make the decision whether to wait on the stem cell transplant, or just go for it. We went for it and are so glad we did!

    I do believe this will become the standard of care for this disease soon, if it isn't already now.

    The actual stem cell transplant was anticlimactic, but a few of the high dose chemos were very rough on my husband. He had a lot of bad side effects, set backs and some issues with his heart and liver. They all resolved in time.

    Great to hear from you

    duplicate

  • leprechaun2
    leprechaun2 Member Posts: 79
    #45
    Dan_in_Canada said:

    Great to hear from you

    Hi SusanEmma,

     

    That's awesome news!  Thanks for posting here, it's one thing to hear about statistics of other survivors, but really great to hear from someone "real" and hear that they are doing well, especially at 4 years in remission.  I think I mentioned it earlier, but when I read the standard PCNSL sites at diagnosis, they all seemed very depressing to me, as all I saw was the 48 month prognosis, and no mention of the state of health of patients at that point.

    Interesting to hear about the neuropathy,  I have some of this, and I didn't realize that Vincristine is known as a cause.  It is a small price to pay if the treatment is successful.

     

    Hope your husband continues to do well, and thanks again for posting.

    Dan

    Hi Dan!
     
    Good to see you

    Hi Dan!

     

    Good to see you here!  How are you?

    Hub has his next MRI on April 19th.  He is still going strong, we await further good news.  2 yrs, 9 months and counting!

    Keep on fighting!

     

  • Victelio
    Victelio Member Posts: 22
    #46
    SusanEmma said:

    PCNSL

    Hello Vic and others!

     

    Just wanted to chime in with another success story concerning PCNSL.

     

    My husband Bob was diagnosed 8/8/08 at the age of 47.

    He was treated at Memorial Sloan Kettering in New York city with high dose chemo and a stem cell transplant. Treatment lasted about eight months start to finish.

    He is  four years in remission and it will be five years since diagnosis in August!

    He still has neuropathy in his hands and feet from the Vincristine, but other than that is healthy. He just had an MRI in March and won't have to go back for another one until next March.

    We are thrilled!

    We had to make the decision whether to wait on the stem cell transplant, or just go for it. We went for it and are so glad we did!

    I do believe this will become the standard of care for this disease soon, if it isn't already now.

    The actual stem cell transplant was anticlimactic, but a few of the high dose chemos were very rough on my husband. He had a lot of bad side effects, set backs and some issues with his heart and liver. They all resolved in time.

    Good news

    After spending almost 10 days in the Hospital between my 2nd cycle and a fainting episode they finally determined that is orthostatic hypitension, where your BP drop more than 30 points between a sitting and standing position. My  Dr believes it maybe caused by the Vincristene that will not be used on my 3rd and 4th cycles. Vincristene also gave me some Neuropathy symptoms but what I've read most of them will dissapear after stopping it.

    Anyhow they did an MRI to follow up after the 2nd cycle and it was good to hear that all 3 tumors dissapeared. On Monday I start my 3rd cycle with Metrotexate and Procarbicine no Vincristine this time.

     

  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #47
    Victelio said:

    Good news

    After spending almost 10 days in the Hospital between my 2nd cycle and a fainting episode they finally determined that is orthostatic hypitension, where your BP drop more than 30 points between a sitting and standing position. My  Dr believes it maybe caused by the Vincristene that will not be used on my 3rd and 4th cycles. Vincristene also gave me some Neuropathy symptoms but what I've read most of them will dissapear after stopping it.

    Anyhow they did an MRI to follow up after the 2nd cycle and it was good to hear that all 3 tumors dissapeared. On Monday I start my 3rd cycle with Metrotexate and Procarbicine no Vincristine this time.

     

    Good News

    Hi Vic - good to hear your tumours have disappeared, a very good sign

     

    Hi Anne,  nice to hear from you and that remission continues, of course include you and your husband in the "real" survivors I like to hear from.

    Dan

  • Sten
    Sten Member Posts: 162 Member
    #48
    Dan_in_Canada said:

    Updated Information/my treatment
    I wanted to share some of the information I have found on PCNS Lymphoma, as well as give my perspective on my treatment

    Prognosis

    As someone commented in a post above, there is a lot of different PCNSL prognosis information on the internet. However, I notice that there has been significant progress in the treatment of PCNSL in the last 10 years, so I found I could get much more positive prognosis information if I limited my search to articles written in the past 2 years or so. It looks like the most promising treatment that clinics are working with is to use an “induction” phase of HD-MTX, then proceed into an autologous stem cell transplant protocol. I am not a doctor, but this makes some layman’s sense to me, as HD-MTX (or radiation) attacks any cancer that is residing in the CNS, but the stem cell transplant restarts the bone marrow, so that there is less chance of producing any more malignant “B” cells (ultimately the source of the lymphoma). Speaking of radiation, trials have shown there is limited benefit to WBRT in increasing cure rates above the chemo protocol with ACST, but with significant risk of neuro problems later on, so it would seem WBRT is falling out of the preferred treatment protocol

    I was treated in Calgary, Alberta, Canada where they have been active proponents of the ACST protocol. The Alberta Health services has published their PCNSL protocol with other information on the internet, here is the link:

    http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-lyhe002-lymphoma.pdf (see pages 18 and 19 for info on PCNSL)

    Other sites with more promising prognosis information

    http://www.ncbi.nlm.nih.gov/pubmed/21749848

    http://annonc.oxfordjournals.org/content/early/2012/04/03/annonc.mds059.abstract

    http://www.ncbi.nlm.nih.gov/pubmed/22023529

    Overall 5 year survival rates have increased from <20% in late 1990’s to 60-80% now. Factors such as age and health performance are obviously factors in the survival rate. The ACST is very hard on the body (I can tell from experience), so it may be difficult to tolerate in older or less healthy patients, but I think there are some protocols that are a little less severe.

    My Treatment

    I think on any cancer site/brochure it will tell you that everyone responds differently to chemotherapy, but for reference, I can share how my treatment went, since I had some questions on how it would go at the beginning myself.

    My first HD-MTX treatment went by with limited side effects, so I was wondering, am I going to be lucky and have it easy the whole way or is it going to get harder? Well, my own personal experience was that each subsequent HD-MTX (with or without procarbazine or vincristine) was more difficult, with more nausea and other side effects.

    I was warned ahead of time that the busulfan/thiotepa treatment after collecting my stem cells was going to be rough, and this definitely proved to be the case. A large percentage of patients (about 85%) develop mucositis with these drugs, and I fit in with the majority. The throat pain I developed with the mucositis was the worst pain I have ever had in my life, and none of the usual sore throat remedies (eg, ice, popsicles, gargling) were effective at reducing the pain. I couldn’t eat or drink for several days and overall have lost about 25 lbs since I started the treatment.
    I have since been released from the hospital and am eating and drinking again, but have no appetite or taste buds, so eating seems like a real chore. That said, about 1 week out of the hospital, I am getting slowly better and recovering some of my energy. What also keeps me going is knowing that I am in remission, and that eventually this will pass and I can get on with a normal life.

    If you google “primary cns lymphoma” survivors, you can also find stories of other survivors who have been through WBRT and/or HD-MXT, but I didn’t find many references to survivors who have been through ACST.

    I plan to periodically check this site and provide updates on my own situation, so if anyone would like to ask a question about my treatment , please post a comment and I will eventually respond</p>

    New prognosis information?

    I have gratefully read Dan_in_Canada's post of June 23, 2012 - 11:42 pm and the three sources of prognosis information that he mentions there.

    Now I wonder if there are still more and perhaps still newer sources of information about prognosis, especially concerning ASCT and then prophylactic temozolomide (temodar) for 4 days every month.

  • Victelio
    Victelio Member Posts: 22
    #49
    Dan_in_Canada said:

    Good News

    Hi Vic - good to hear your tumours have disappeared, a very good sign

     

    Hi Anne,  nice to hear from you and that remission continues, of course include you and your husband in the "real" survivors I like to hear from.

    Dan

    Hello

    Wink

    Hi Dan and Susan Emma

    Even when my journey is just beggining I'll take good news anytime, Dan from what I read and my Dr confirmed that Vincristine is well known for the neuropathy side effect but as you say is a matter of balance...good thing is that the majority of the symptoms will disappear eventually after stopping it...

    Susan my thoughts and prayers are with you and your hubby for a clean MRI we expect to follow up on your hubby's footsteps as survivors of this rare disease, when they told me the odds of getting it my only regret was not having the "lucky odds" for the Loto 

    Vic

  • Victelio
    Victelio Member Posts: 22
    #50
    leprechaun2 said:

    Hi Dan!
     
    Good to see you

    Hi Dan!

     

    Good to see you here!  How are you?

    Hub has his next MRI on April 19th.  He is still going strong, we await further good news.  2 yrs, 9 months and counting!

    Keep on fighting!

     

    We are declaring another clean MRI

    Hi Leprechaun

     

    You and your husband will be on my thoughts Friday

     

    Vic

  • Sten
    Sten Member Posts: 162 Member
    #51
    New prognosis information?

    I have gratefully read Dan_in_Canada's post of June 23, 2012 - 11:42 pm and the three sources of prognosis information that he mentions there.

    Now I wonder if there are still more and perhaps still newer sources of information about prognosis, especially concerning ASCT and then prophylactic temozolomide (temodar) for 4 days every month.

  • leprechaun2
    leprechaun2 Member Posts: 79
    #52
    Victelio said:

    We are declaring another clean MRI

    Hi Leprechaun

     

    You and your husband will be on my thoughts Friday

     

    Vic

    Thanks Vic, we can always use

    Thanks Vic, we can always use more positivity!  today he swam 20 laps!

    Still praying for your transplant!

  • splatz
    splatz Member Posts: 2
    #53
    Victelio said:

    Hello

    Wink

    Hi Dan and Susan Emma

    Even when my journey is just beggining I'll take good news anytime, Dan from what I read and my Dr confirmed that Vincristine is well known for the neuropathy side effect but as you say is a matter of balance...good thing is that the majority of the symptoms will disappear eventually after stopping it...

    Susan my thoughts and prayers are with you and your hubby for a clean MRI we expect to follow up on your hubby's footsteps as survivors of this rare disease, when they told me the odds of getting it my only regret was not having the "lucky odds" for the Loto 

    Vic

    New poster

    Hello all, my wife was diagnosed in 10-11 at age 46.  Went through 4 months of high dose methotrexate, cytarabine and one other cant recall right now..after this treatment MRI couldn't find any trace of tumors so looked into possibility of ASCT.  Determine that she was a good canidate for ASCT, went to Boston, MGH, for stem cell collection, then a round of thiotepa-busalfan chemo to prepare for ASCT.  Transplant was a success, about 6 weeks then back home to recover, that was in June, doing pretty good now.  Still getting strength back and some issues with neuropothy in hands, but no sign of cancer.  Go later this week for follow up MRI and check up.  From what we have read and the people we have talked to we would recommend the stem cell transplant if you are a canidate for one.  Good luck and God Bless.

  • leprechaun2
    leprechaun2 Member Posts: 79
    #54
    splatz said:

    New poster

    Hello all, my wife was diagnosed in 10-11 at age 46.  Went through 4 months of high dose methotrexate, cytarabine and one other cant recall right now..after this treatment MRI couldn't find any trace of tumors so looked into possibility of ASCT.  Determine that she was a good canidate for ASCT, went to Boston, MGH, for stem cell collection, then a round of thiotepa-busalfan chemo to prepare for ASCT.  Transplant was a success, about 6 weeks then back home to recover, that was in June, doing pretty good now.  Still getting strength back and some issues with neuropothy in hands, but no sign of cancer.  Go later this week for follow up MRI and check up.  From what we have read and the people we have talked to we would recommend the stem cell transplant if you are a canidate for one.  Good luck and God Bless.

    Wonderful news!
    Your wife and

    Wonderful news!

    Your wife and you are in our prayers!  We look forward to hearing good news this week and in the future!

  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #55
    Sten said:

    New prognosis information?

    I have gratefully read Dan_in_Canada's post of June 23, 2012 - 11:42 pm and the three sources of prognosis information that he mentions there.

    Now I wonder if there are still more and perhaps still newer sources of information about prognosis, especially concerning ASCT and then prophylactic temozolomide (temodar) for 4 days every month.

    Haven't seen anything really new

    Sten,

     

    I haven't come across any new prognosis information, other than a small but what I thought was a very positive study from a Sioux Falls, SD hospital  This hospital had 12 PCNSL patients from 2001 to 2012 who received ASCT, unfortunately one patient relapsed and passed away but "the remaining 11 patients continue to be in remission. 2 patients have returned to college, 2 are gainfully employed and 3 are functioning retirees"

    https://bmt.confex.com/tandem/2013/webprogram/Paper2711.html

    Sorry, I'm not aware of any information on temodar.

    Dan

  • Sten
    Sten Member Posts: 162 Member
    #56
    Dan_in_Canada said:

    Haven't seen anything really new

    Sten,

     

    I haven't come across any new prognosis information, other than a small but what I thought was a very positive study from a Sioux Falls, SD hospital  This hospital had 12 PCNSL patients from 2001 to 2012 who received ASCT, unfortunately one patient relapsed and passed away but "the remaining 11 patients continue to be in remission. 2 patients have returned to college, 2 are gainfully employed and 3 are functioning retirees"

    https://bmt.confex.com/tandem/2013/webprogram/Paper2711.html

    Sorry, I'm not aware of any information on temodar.

    Dan

    Dan, thank you very much!

    Dan,

    Your contributions are most valuable!

    The information in the new small study is really very good and encouraging.

    Again, thanks a lot! Your information is indeed very welcome and useful!

     

    Best regards,

    Sten

     

     

  • Donnaann314
    Donnaann314 Member Posts: 3
    #57
    Sten said:

    New prognosis information?

    I have gratefully read Dan_in_Canada's post of June 23, 2012 - 11:42 pm and the three sources of prognosis information that he mentions there.

    Now I wonder if there are still more and perhaps still newer sources of information about prognosis, especially concerning ASCT and then prophylactic temozolomide (temodar) for 4 days every month.

    Sten:
     
    Did you go through

    Sten:

     

    Did you go through radiation?  My partner is 65 and has PCNS diagnosd 12/12.   Just had 5 rounds of chemo and appears it shrunk but still there.  I'm against him having th radiation because of his age.  

     

    thanks

     

     

  • Donnaann314
    Donnaann314 Member Posts: 3
    #58
    oilernick said:

    Dear “Dan in
    Dear “Dan in Canada”:

    Like you, I am a man in my early 40’s who was recently diagnosed with Primary CNS Lymphoma. I will soon be finishing six months of MTX treatments. I have also been taking Rituximab and Temodar. To date, my treatments have gone really well and I feel virtually normal. My scans are “clear” and I appear to be in some sort of remission. I continue to work, exercise and coach my son’s baseball team. I even go camping and hiking with his Boy Scout Troop.

    Aside from the huge inconvenience of it all, I must admit that the treatments to date have been far easier than I could have imagined at the front end. (My business is in shambles at the moment, however, but I digress.)

    Assuming I pass all of the prefatory tests, I am slated to undergo a stem cell transplant in mid-October. My doctors (at the Mayo Clinic in Phoenix) are world class and they appear to have been as aggressive as possible in treating my condition. I feel truly blessed to have so many highly skilled experts overseeing my situation.

    My wife and I – independently – stumbled upon your postings and given the closeness of your situation to mine, I kinda felt obligated to send you a “hi” and “thanks” for keeping us updated on your progress. God willing, I will do the same on my end.

    I couldn’t tell from your posting what your situation is but I am a father of two fairly young kids. To be honest, I’m not all that concerned with the notions of “cure”, “CRR”, “PFS” and the like. I just pray every day, several times a day, that God will allow me to hang around long enough to see my youngest child leave the house in several years. At the moment, that’s my number one priority in life and it appears achievable. Unfortunately, I’m not sure what my number two priority in life actually is (assuming I even have one).

    I look forward to writing to you in the months and years to come.

    Regards,
    OilerNick

    St. Josephs or Mayo in Phoenix

    OilerNick

     

    We are currently undergoing treatment at St. Josephs and thinking we should probably be at Mayo for PCNS?  Also, did you have radiation?  My partner is 65 and worried about that.  He just completed 5 rounds of HDM and appears it shunk in half.

     

    any feedback is appreciated.

     

    Donna

  • Donnaann314
    Donnaann314 Member Posts: 3
    #59
    SusanEmma said:

    PCNSL

    Hello Vic and others!

     

    Just wanted to chime in with another success story concerning PCNSL.

     

    My husband Bob was diagnosed 8/8/08 at the age of 47.

    He was treated at Memorial Sloan Kettering in New York city with high dose chemo and a stem cell transplant. Treatment lasted about eight months start to finish.

    He is  four years in remission and it will be five years since diagnosis in August!

    He still has neuropathy in his hands and feet from the Vincristine, but other than that is healthy. He just had an MRI in March and won't have to go back for another one until next March.

    We are thrilled!

    We had to make the decision whether to wait on the stem cell transplant, or just go for it. We went for it and are so glad we did!

    I do believe this will become the standard of care for this disease soon, if it isn't already now.

    The actual stem cell transplant was anticlimactic, but a few of the high dose chemos were very rough on my husband. He had a lot of bad side effects, set backs and some issues with his heart and liver. They all resolved in time.

    Such wonderful news!!
     
    How

    Such wonderful news!!

     

    How many chemo treatments and did he have any radiation?  My partner is 65 and just had 5 rounds; still there hoping the next 2 will eliminate it.  They want us to go for a radiation consult; I'm against it.   

     

    thanks so much for your feeback

  • dat1000
    dat1000 Member Posts: 7
    #60
    Father has primary CNS lymphoma

    My father was diagnosed with primary CNS lymphoma last month. He is 69 years old. His symptoms were very similar to a stroke. Initially he was diagnosed with a stroke after the CT scan. The diagnosis changed after they did a contrast dye CT scan. He had his craniotomy done and then started his chemotherapy. It was high dose metha/rituximab. After his first round he ended up with signs of congestive heart failure. They have now halted the chemo treatment and will not continue with the chemo. I wonder if after a certain age they should preventatively have treated for possible cardio complications (too late to do anything about that but I figure if you are an older patient with primary CNS lymphoma then you should inquire about preventative measures). He will now be starting radiation therapy. I am also interested in finding out if anyone has tried Saffron red flower to help with the therapy? I will be trying getting some and figured it can't hurt to try. Will provide updates

     

  • dat1000
    dat1000 Member Posts: 7
    #61
    Father has primary CNS lymphoma

    My father was diagnosed with primary CNS lymphoma last month. He is 69 years old. His symptoms were very similar to a stroke. Initially he was diagnosed with a stroke after the CT scan. The diagnosis changed after they did a contrast dye CT scan. He had his craniotomy done and then started his chemotherapy. It was high dose metha/rituximab. After his first round he ended up with signs of congestive heart failure. They have now halted the chemo treatment and will not continue with the chemo. I wonder if after a certain age they should preventatively have treated for possible cardio complications (too late to do anything about that but I figure if you are an older patient with primary CNS lymphoma then you should inquire about preventative measures). He will now be starting radiation therapy. I am also interested in finding out if anyone has tried Saffron red flower to help with the therapy? I will be trying getting some and figured it can't hurt to try. Will provide updates

     

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