Primary CNS Lymphoma

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  • leprechaun2
    leprechaun2 Member Posts: 79
    #22
    Dan_in_Canada said:

    Some other symptoms after transplant
    I'm now almost four months out from the hi-dose chemo and stem cell transplant. I feel almost 100%, but have had a couple of unexpected side effects pop up. Most noticeably a week or so ago I started getting a tingling sensation in my legs. I eventually correlated this to times when I've done some type of physical activity and then bend my neck forward to look down. When I bend my neck forward, I get what feels like an electric shock mostly in my legs, but sometimes down my neck & back. Turns out this is called L'Hermitte's sign and does happen post some types of hi-dose chemo, though I wasn't aware that this could be a side effect of any of the drugs I took (busulphan, thiotepa, ritixumab, cyterabine, methotrexate, vincristine, procarbazine). I was originally freaking out because L'hermitte's can also be a sign of MS, which both my mother and an aunt developed in later life. However, I've read and been told that this should clear up in a couple of months, so here's hoping.
    Secondly, my blood counts originally skyrocketed after chemo was finished, but have been drifting down ever since, and are now below "normal" range. Again, I've been told this is normal after chemo, and counts should gradually recover in the next couple of months.

    Wondering if anybody else has experienced L'Hermitte's or has any comments about blood count recovery?

    Blood counts went up and down
    Hi Dan
    Although I am not familiar with the syndrome you are experiencing, I can relate to the changing blood counts.
    Hubs took over a year to stay in the normal range. The doc said it was due to all his prior treatments.
    I can tell you that the majority of his side-effects lasted less than a year.
    He is still sensitive to meds which can affect his WBC and his platelets so we do watch when be takes a new med.
    He slso still tires easily and is weakened by the heat. Thankfully these we can deal with.
    I pray yours pass quickly as most of hid did.
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #23
    leprechaun2 said:

    Blood counts went up and down
    Hi Dan
    Although I am not familiar with the syndrome you are experiencing, I can relate to the changing blood counts.
    Hubs took over a year to stay in the normal range. The doc said it was due to all his prior treatments.
    I can tell you that the majority of his side-effects lasted less than a year.
    He is still sensitive to meds which can affect his WBC and his platelets so we do watch when be takes a new med.
    He slso still tires easily and is weakened by the heat. Thankfully these we can deal with.
    I pray yours pass quickly as most of hid did.

    Thanks again
    Thanks again for the info on the blood counts, and good to hear your husband isn't having any serious lasting side effects.
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #24
    oilernick said:

    Dear Dan:
    Thanks for writing
    Dear Dan:

    Thanks for writing back to me. It is indeed interesting to see how someone in (y)our situation is responding post-ASCT.

    At the present time, I am scheduled to begin my ASCT on October 8. Oddly enough, I am anxious to get it started. A couple of weeks ago I suffered a bit of a set back when a blood clot formed in my neck. I didn't know what was going on and my head felt like it was going to explode from the pressure. Suffice it to say, I was quite worried. Fortuantely, it appears to have been caused by my port and a few injections of blood thinner have made the problem largely disappear. At the moment, I feel absolutely normal (although I do feel out of shape and/or stressed).

    As for your posting, I can't tell you how much I too want to be around to walk my (14-year old) daughter down the aisle one day and/or to hold my grandchild(ren). To be able to coach a grandchild's Little League game and/or take them to Cub Scout camp someday would be more than I could ever even pray for. While this experience has been a real bummer overall, I must admit that it hasn't been a wholly negative experience. I really feel bad for all of the Dads out there who, unlike us, never get a chance to tell their kids just how much they love them.

    Best wishes on your continued recovery and I'll touch base with you again during my extended vacation at the Mayo Clinic.

    Regards,
    OilerNick

    p.s. We still haven't explained to our kids the details about Dad's upcoming ASCT. From their perspective, I appear just fine although they do know that I have cancer. If you have any hints about how to share this information with them, I would greatly appreciate it.

    Kids & post ASCT
    Hi OilerNick,

    We didn't elaborate very much to our kids about the the stem cell transplant portion of my treatment, other than letting them know that I was going to be in the hospital for a longer period than the previous MXT treatments, and it would take longer for me to recover. I didn't lose any hair with the MXT treatments, but we talked about the fact my hair was more likely fall out but regrow this time; my youngest daughter was very intrigued by the possibility that my hair might come back a different colour or texture (ie curly) , but other than that we didn't talk much more about the ACST treatment beforehand.

    A social worker at the hospital gave me a good tip / observation about helping kids with their parent's treatment; if you can give them something to do to help you during your treatment, even if it's just a small thing, they feel more in control of the situation and like they are taking steps to "make things right". I saw a bit of this with our younger daughter when I was released from the hospital, she was very insistent that she should carry my bags for me. My daughters also made get well cards, etc. However, I don't know if this tip is as effective for a 14 year old.

    I hope you are not too stressed about going through the ACST; while I can't say I enjoyed it, if I have any kind of relapse I wouldn't hesitate to do it again. Since you are a similar age and seem in good health, I hope you will be pleasantly surprised that it isn't as bad as you expected. I don't know if any moms will think this is a great analogy, but I kind of think of it as similar to what a woman must go though during pregnancy, what with having periods of sickness & knowing that you are going to go through pain, but in the end knowing the benefits outweigh it all. Similarly, knowing about pregnancy doesn't seem to stop women from having more than 1 child!

    I posted a status a few days ago, as I noted I almost feel 100% again after 4 months, but still have a few weird side effects like Lhermitte's sign (which aren't bothering me too much). I am feeling out of shape but am starting to jog short distances again ... feels like hard work and I can only jog for <5 min at a time, but I am making some progress.

    Hoping your remaining chemo and transplant goes well,

    Regards,
    Dan
  • oilernick
    oilernick Member Posts: 9
    #25
    Dan_in_Canada said:

    Kids & post ASCT
    Hi OilerNick,

    We didn't elaborate very much to our kids about the the stem cell transplant portion of my treatment, other than letting them know that I was going to be in the hospital for a longer period than the previous MXT treatments, and it would take longer for me to recover. I didn't lose any hair with the MXT treatments, but we talked about the fact my hair was more likely fall out but regrow this time; my youngest daughter was very intrigued by the possibility that my hair might come back a different colour or texture (ie curly) , but other than that we didn't talk much more about the ACST treatment beforehand.

    A social worker at the hospital gave me a good tip / observation about helping kids with their parent's treatment; if you can give them something to do to help you during your treatment, even if it's just a small thing, they feel more in control of the situation and like they are taking steps to "make things right". I saw a bit of this with our younger daughter when I was released from the hospital, she was very insistent that she should carry my bags for me. My daughters also made get well cards, etc. However, I don't know if this tip is as effective for a 14 year old.

    I hope you are not too stressed about going through the ACST; while I can't say I enjoyed it, if I have any kind of relapse I wouldn't hesitate to do it again. Since you are a similar age and seem in good health, I hope you will be pleasantly surprised that it isn't as bad as you expected. I don't know if any moms will think this is a great analogy, but I kind of think of it as similar to what a woman must go though during pregnancy, what with having periods of sickness & knowing that you are going to go through pain, but in the end knowing the benefits outweigh it all. Similarly, knowing about pregnancy doesn't seem to stop women from having more than 1 child!

    I posted a status a few days ago, as I noted I almost feel 100% again after 4 months, but still have a few weird side effects like Lhermitte's sign (which aren't bothering me too much). I am feeling out of shape but am starting to jog short distances again ... feels like hard work and I can only jog for <5 min at a time, but I am making some progress.

    Hoping your remaining chemo and transplant goes well,

    Regards,
    Dan</p>

    Update on ACST
    Dear Dan (and all other similarly situated folks):

    I am happy to report that I have completed my high dose chemotherapy and this afternoon my stem cells were infused back into me. Aside from being stir crazy sitting in this hospital room and missing my family terribily, I actually feel remarkably well. Anyone who is pondering whether or not to go down this road, I must say that it isn't as dramatic or horrible as I was led to believe at the front end. The science behind this sort of procedure seems pretty darn solid - see http://www.ncbi.nlm.nih.gov/pubmed/22473593 - and my doctors at the Mayo Clinic are hopeful that I can be "cured" (their words, not mine).

    Whatever the case may be, thank God its 2012 and, what is more important, thank God in general.

    Best wishes to you, Dan, on your continued recovery...

    OilerNick
  • leprechaun2
    leprechaun2 Member Posts: 79
    #26
    oilernick said:

    Update on ACST
    Dear Dan (and all other similarly situated folks):

    I am happy to report that I have completed my high dose chemotherapy and this afternoon my stem cells were infused back into me. Aside from being stir crazy sitting in this hospital room and missing my family terribily, I actually feel remarkably well. Anyone who is pondering whether or not to go down this road, I must say that it isn't as dramatic or horrible as I was led to believe at the front end. The science behind this sort of procedure seems pretty darn solid - see http://www.ncbi.nlm.nih.gov/pubmed/22473593 - and my doctors at the Mayo Clinic are hopeful that I can be "cured" (their words, not mine).

    Whatever the case may be, thank God its 2012 and, what is more important, thank God in general.

    Best wishes to you, Dan, on your continued recovery...

    OilerNick

    Congratulations on your new Rebirthday!
    I am happy to hear that the ACST has gone so well for you - I also thought the process was not as terrifying as it was described to us. Hub had some up and downs to deal with after his but none as awful as the tumors which kept returning after other types of treatments!

    He is now 27 months free of cancer! His next MRI is Nov 20 at Sloan Kettering and we are looking forward to again hearing good news.

    I agree entirely, thank God medicine has come so far in treating this horror.
    May your recovery be smooth and speedy! I hope you will be hugging those kids of yours soon.

    We will be praying for continued good news,

    Leprechaun!
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #27
    oilernick said:

    Update on ACST
    Dear Dan (and all other similarly situated folks):

    I am happy to report that I have completed my high dose chemotherapy and this afternoon my stem cells were infused back into me. Aside from being stir crazy sitting in this hospital room and missing my family terribily, I actually feel remarkably well. Anyone who is pondering whether or not to go down this road, I must say that it isn't as dramatic or horrible as I was led to believe at the front end. The science behind this sort of procedure seems pretty darn solid - see http://www.ncbi.nlm.nih.gov/pubmed/22473593 - and my doctors at the Mayo Clinic are hopeful that I can be "cured" (their words, not mine).

    Whatever the case may be, thank God its 2012 and, what is more important, thank God in general.

    Best wishes to you, Dan, on your continued recovery...

    OilerNick

    Great News
    Hey Nick, great news and congrats on getting your stem cells back ok! Best wishes to you on your recovery as well.

    Thanks also for the link on the updated longer term stats; these numbers are consistent with some of the other studies and are sure a lot more promising than what I heard when I was first diagnosed.

    As an aside for any others wondering about PCNSL, I was wrong on some of my earlier postings re: radiation. There are still some clinical trials ongoing which use lower WBRT doses. This is an excerpt from an abstract at the 2012 ASCO (American Society of Clinical Oncology) meeting

    Low-Dose Radiation Beneficial With CNS Lymphoma
    The Particulars: For many years, whole-brain radiation has been used to treat central nervous system (CNS) lymphoma, but this treatment has been associated with relatively poor outcomes. Additionally, surgery is usually not an option. Studies have suggested that combining radiation and chemotherapy can improve outcomes but increase neurotoxicity. Whole-brain radiation at about half the standard dose after chemotherapy to treat CNS lymphoma may be effective while limiting toxicity.
    Data Breakdown: Researchers treated 52 patients with newly diagnosed CNS lymphoma with a chemotherapy regimen followed by either wholebrain radiation at 23.4 Gy or 45.0 Gy. The average progression-free survival (PFS) for those who received the reduced dose of radiation was nearly 7.7 years. The 2-year PFS was 78%. In the intentto- treat group, median PFS was 3.3 years and the median overall survival was 6.6 years. Cognitive testing after chemotherapy demonstrated significant improvements in executive function and verbal memory that were stable over the follow-up.
    Take Home Pearl: For patients with CNS lymphoma, whole-brain radiation at about half the standard dose following chemotherapy appears to be safe and effective.

    This being said, as Nick says, the intensive chemo with ASCT has very good longer term curative stats and it seems if you are relatively young and in good health, it is tolerable and would still be my first choice for treatment.

    I did have a personal scare in the past couple of weeks, I developed some numbness & tingling in my left foot & hand (along with my Lhermitte's sign, which affects both legs), and started getting some mild headaches. I immediately was thinking "Relapse!" and was quite stressed about it. But fortunately Dr had my MRI moved up and it turned up clear. I'm guessing until a few years have passed, I will still be somewhat nervous every time a new unexplained symptom comes up...
  • oilernick
    oilernick Member Posts: 9
    #28
    Dan_in_Canada said:

    Great News
    Hey Nick, great news and congrats on getting your stem cells back ok! Best wishes to you on your recovery as well.

    Thanks also for the link on the updated longer term stats; these numbers are consistent with some of the other studies and are sure a lot more promising than what I heard when I was first diagnosed.

    As an aside for any others wondering about PCNSL, I was wrong on some of my earlier postings re: radiation. There are still some clinical trials ongoing which use lower WBRT doses. This is an excerpt from an abstract at the 2012 ASCO (American Society of Clinical Oncology) meeting

    Low-Dose Radiation Beneficial With CNS Lymphoma
    The Particulars: For many years, whole-brain radiation has been used to treat central nervous system (CNS) lymphoma, but this treatment has been associated with relatively poor outcomes. Additionally, surgery is usually not an option. Studies have suggested that combining radiation and chemotherapy can improve outcomes but increase neurotoxicity. Whole-brain radiation at about half the standard dose after chemotherapy to treat CNS lymphoma may be effective while limiting toxicity.
    Data Breakdown: Researchers treated 52 patients with newly diagnosed CNS lymphoma with a chemotherapy regimen followed by either wholebrain radiation at 23.4 Gy or 45.0 Gy. The average progression-free survival (PFS) for those who received the reduced dose of radiation was nearly 7.7 years. The 2-year PFS was 78%. In the intentto- treat group, median PFS was 3.3 years and the median overall survival was 6.6 years. Cognitive testing after chemotherapy demonstrated significant improvements in executive function and verbal memory that were stable over the follow-up.
    Take Home Pearl: For patients with CNS lymphoma, whole-brain radiation at about half the standard dose following chemotherapy appears to be safe and effective.

    This being said, as Nick says, the intensive chemo with ASCT has very good longer term curative stats and it seems if you are relatively young and in good health, it is tolerable and would still be my first choice for treatment.

    I did have a personal scare in the past couple of weeks, I developed some numbness & tingling in my left foot & hand (along with my Lhermitte's sign, which affects both legs), and started getting some mild headaches. I immediately was thinking "Relapse!" and was quite stressed about it. But fortunately Dr had my MRI moved up and it turned up clear. I'm guessing until a few years have passed, I will still be somewhat nervous every time a new unexplained symptom comes up...

    day +14 from ASCT
    Dear Dan, Leprechaun2, et al.:

    Thanks for the prayers and warm sentiments.

    I am now at day +14 from my ASCT and I largely feel fine. I haven’t had any fevers, hair loss or significant nausea. My blood counts are returning to normal and I was released from the hospital at day +11. (MANY hugs have been exchanged between my kids and me since then.) To be honest, things have gone so smoothly for me that I really wonder whether the dosages of HCT were suboptimal as I’m thinking I should feel a whole lot sicker than I do. I know that may sound silly but I really wonder whether that’s the case.

    While I guess time will tell whether the HCT-ASCT was successful, I do have to say that my brain feels like its been blown dry by a hair dryer. It’s not a bad feeling, nor does it hurt, but it is noticeable and somewhat reassuring inasmuch as something has clearly taken place up there. I don’t know how else to describe the feeling. Actually, I can think of another way to describe the feeling, to wit, it’s like how you feel after you pour hydrogen peroxide over an infected wound for a while. It just feels like the wound has been fixed and cleared out. That’s how my brain feels at the moment.

    Best of luck to all of us and, God willing, I look forward to hearing from all of you in the months and years to come.

    Regards,
    OilerNick
  • leprechaun2
    leprechaun2 Member Posts: 79
    #29
    oilernick said:

    day +14 from ASCT
    Dear Dan, Leprechaun2, et al.:

    Thanks for the prayers and warm sentiments.

    I am now at day +14 from my ASCT and I largely feel fine. I haven’t had any fevers, hair loss or significant nausea. My blood counts are returning to normal and I was released from the hospital at day +11. (MANY hugs have been exchanged between my kids and me since then.) To be honest, things have gone so smoothly for me that I really wonder whether the dosages of HCT were suboptimal as I’m thinking I should feel a whole lot sicker than I do. I know that may sound silly but I really wonder whether that’s the case.

    While I guess time will tell whether the HCT-ASCT was successful, I do have to say that my brain feels like its been blown dry by a hair dryer. It’s not a bad feeling, nor does it hurt, but it is noticeable and somewhat reassuring inasmuch as something has clearly taken place up there. I don’t know how else to describe the feeling. Actually, I can think of another way to describe the feeling, to wit, it’s like how you feel after you pour hydrogen peroxide over an infected wound for a while. It just feels like the wound has been fixed and cleared out. That’s how my brain feels at the moment.

    Best of luck to all of us and, God willing, I look forward to hearing from all of you in the months and years to come.

    Regards,
    OilerNick

    +14 days!
    I am so happy for you!

    I am sure the kids enjoyed the hugs as much as you do!

    Hub is doing well and I pray that you continue to feel good and then better! We are at 2yrs, 4 months and still clear, next MRI, Nov 20th.

    Thanks for posting, and, yes, we look forward to hearing from you too!
  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #30
    oilernick said:

    day +14 from ASCT
    Dear Dan, Leprechaun2, et al.:

    Thanks for the prayers and warm sentiments.

    I am now at day +14 from my ASCT and I largely feel fine. I haven’t had any fevers, hair loss or significant nausea. My blood counts are returning to normal and I was released from the hospital at day +11. (MANY hugs have been exchanged between my kids and me since then.) To be honest, things have gone so smoothly for me that I really wonder whether the dosages of HCT were suboptimal as I’m thinking I should feel a whole lot sicker than I do. I know that may sound silly but I really wonder whether that’s the case.

    While I guess time will tell whether the HCT-ASCT was successful, I do have to say that my brain feels like its been blown dry by a hair dryer. It’s not a bad feeling, nor does it hurt, but it is noticeable and somewhat reassuring inasmuch as something has clearly taken place up there. I don’t know how else to describe the feeling. Actually, I can think of another way to describe the feeling, to wit, it’s like how you feel after you pour hydrogen peroxide over an infected wound for a while. It just feels like the wound has been fixed and cleared out. That’s how my brain feels at the moment.

    Best of luck to all of us and, God willing, I look forward to hearing from all of you in the months and years to come.

    Regards,
    OilerNick

    Seizure + Medication

    I had a bit of a setback in mid-December when I had an unexpected seizure.  This was just before we were going on a planned trip to Australia, so needless to say I was very stressed about it.  I only had time to have a CT scan before the trip. The scan and a physical neuro exam turned out clear, so in the end I decided to still go.  The trip ended up being great, so I am glad that it worked out.  The doctors suspect the seizure is a result of some remaining scar tissue in my brain due to my surgery to remove the initial tumour.  Other than the seizure, I've been feeling normal and am back full time at work, no issues.

    I had stopped taking anti-seizure meds (Dilantin) at about +3 months post ASCT, but am now back on Dilantin. Doctors say I will probably stay on anti-seizure meds for the foreseeable future.  I haven't had any problems with Dilantin, but later this month my doctor would like to switch to a different med (to be determined), one that is apparantely is better tolerated for longer term use.  

    Anybody have any experience (good/bad) with other anti-seizure meds?  

  • leprechaun2
    leprechaun2 Member Posts: 79
    #31
    Dan_in_Canada said:

    Seizure + Medication

    I had a bit of a setback in mid-December when I had an unexpected seizure.  This was just before we were going on a planned trip to Australia, so needless to say I was very stressed about it.  I only had time to have a CT scan before the trip. The scan and a physical neuro exam turned out clear, so in the end I decided to still go.  The trip ended up being great, so I am glad that it worked out.  The doctors suspect the seizure is a result of some remaining scar tissue in my brain due to my surgery to remove the initial tumour.  Other than the seizure, I've been feeling normal and am back full time at work, no issues.

    I had stopped taking anti-seizure meds (Dilantin) at about +3 months post ASCT, but am now back on Dilantin. Doctors say I will probably stay on anti-seizure meds for the foreseeable future.  I haven't had any problems with Dilantin, but later this month my doctor would like to switch to a different med (to be determined), one that is apparantely is better tolerated for longer term use.  

    Anybody have any experience (good/bad) with other anti-seizure meds?  

    Hi Dan,
    sorry to hear about

    Hi Dan,

    sorry to hear about the seizure but I am glad you made your trip. 

    Hub only had one seizure, when they started his treatment for the 2 brain tumors.  the docs started Keppra immediately and he has never had another one.  At first he was on 3000mg/day, over a year taht was tapered to 1000mg/day.

    I have heard problems others have had but he has not have side effects that I can ascribe to the keppra. He has been on it since Aug, 08.

    I hope you have success with the decision and the meds.

    Let me know.

     

  • Victelio
    Victelio Member Posts: 22
    #32
    leprechaun2 said:

    Hi Dan,
    sorry to hear about

    Hi Dan,

    sorry to hear about the seizure but I am glad you made your trip. 

    Hub only had one seizure, when they started his treatment for the 2 brain tumors.  the docs started Keppra immediately and he has never had another one.  At first he was on 3000mg/day, over a year taht was tapered to 1000mg/day.

    I have heard problems others have had but he has not have side effects that I can ascribe to the keppra. He has been on it since Aug, 08.

    I hope you have success with the decision and the meds.

    Let me know.

     

    Newly Diagnosed

    Hi to All

     

    My name is Vic Martinez I live in Orlando, Florida and just a 2 weeks and a half ago I was diagnosed with B cell Primary CNS Lymphoma...I went through my first chemo 2 weeks ago with Metrotexate, Viscristine and Procarbin and I'm schedule for my second round On March 4th...This one will be preceded by an infussion of Ritoxiban (hopefully spelling is correct). My process started with vertigo, double vision and dizzines and after my ENT ordered and MRI they found a tumor on my posterior fossa that three neurosurgeons recomended to remove and biopsy instead of just doing a biopsy. I"m currently 56 years of age in good general health, my testicles US came back negative, bone marrow and CSF as well and LDH within normal levels.On April 17th they removed the original tumor but because the surgeon kept me on steroids until the surgery three biopsies came back inconclusive.

    As the symptoms returned I had another MRI done at Moffitt Cancer Center in Tampa that confirmed three other tumors 2 of them at the ventricle one of which was biopsy with the above mentioned result.

     

    My DR is recommending The DeAngelis CHEMO  PROTOCOL regular MRI's and the possibility of an ASCT afterwards. My question is this the best approach as a 1st line attack ? or will you reserve the ASCT to see results of the 1st treatment?. I feel that I should go all in to attack it full blast the experience of all of you will help me with the best course of action. Thanks and if you want to e-mail me my personal; e-mail is victelio@hotmail.com

     

     

  • Dan_in_Canada
    Dan_in_Canada Member Posts: 24
    #33
    Victelio said:

    Newly Diagnosed

    Hi to All

     

    My name is Vic Martinez I live in Orlando, Florida and just a 2 weeks and a half ago I was diagnosed with B cell Primary CNS Lymphoma...I went through my first chemo 2 weeks ago with Metrotexate, Viscristine and Procarbin and I'm schedule for my second round On March 4th...This one will be preceded by an infussion of Ritoxiban (hopefully spelling is correct). My process started with vertigo, double vision and dizzines and after my ENT ordered and MRI they found a tumor on my posterior fossa that three neurosurgeons recomended to remove and biopsy instead of just doing a biopsy. I"m currently 56 years of age in good general health, my testicles US came back negative, bone marrow and CSF as well and LDH within normal levels.On April 17th they removed the original tumor but because the surgeon kept me on steroids until the surgery three biopsies came back inconclusive.

    As the symptoms returned I had another MRI done at Moffitt Cancer Center in Tampa that confirmed three other tumors 2 of them at the ventricle one of which was biopsy with the above mentioned result.

     

    My DR is recommending The DeAngelis CHEMO  PROTOCOL regular MRI's and the possibility of an ASCT afterwards. My question is this the best approach as a 1st line attack ? or will you reserve the ASCT to see results of the 1st treatment?. I feel that I should go all in to attack it full blast the experience of all of you will help me with the best course of action. Thanks and if you want to e-mail me my personal; e-mail is victelio@hotmail.com

     

     

    Sorry to hear about your diagnosis

    Hi Vic,

     

    Sorry to hear about your diagnosis, hope you are still feeling ok.  It wasn't clear from your comments, did you have 4 separate tumours, of which 3 were benign and one is PCNSL?

    I'm not sure what the DeAngelis Chemo protocol entails, but I think it is standard to get at least 3 - 4 rounds of methotrexate (with combinations of other drugs such as vincristine, procarbazine, and rituximab) before an ASCT.  I think it has been shown that the methotrexate treatments are successful most of the time in treating the cancer, at least in the medium term, and this step is necessary so you don't have any cancerous stem cells when they are collected.  I believe the medical term for the first phase is called "induction". The further hi-dose chemo + ASCT ("consolidation" treatment) then helps reduce the chance of relapse. 

    You probably saw in the posts above that I am a believer in the ASCT; I've seen several longer term studies that have had positive results, so if you are healthy enough I would definitely suggest trying for it.  For most, it is not pleasant to go through (though in the posts above OilerNick seemed to have had a very quick recovery, hope he is doing ok), but I personally like the better odds it gives you

    Best of luck with your treatments,

    Dan

    PS. I didn't reply to my most recent post, but I am staying on dilantin to prevent seizures.  No real side effects & seems to work. 

  • leprechaun2
    leprechaun2 Member Posts: 79
    #34
    Victelio said:

    Newly Diagnosed

    Hi to All

     

    My name is Vic Martinez I live in Orlando, Florida and just a 2 weeks and a half ago I was diagnosed with B cell Primary CNS Lymphoma...I went through my first chemo 2 weeks ago with Metrotexate, Viscristine and Procarbin and I'm schedule for my second round On March 4th...This one will be preceded by an infussion of Ritoxiban (hopefully spelling is correct). My process started with vertigo, double vision and dizzines and after my ENT ordered and MRI they found a tumor on my posterior fossa that three neurosurgeons recomended to remove and biopsy instead of just doing a biopsy. I"m currently 56 years of age in good general health, my testicles US came back negative, bone marrow and CSF as well and LDH within normal levels.On April 17th they removed the original tumor but because the surgeon kept me on steroids until the surgery three biopsies came back inconclusive.

    As the symptoms returned I had another MRI done at Moffitt Cancer Center in Tampa that confirmed three other tumors 2 of them at the ventricle one of which was biopsy with the above mentioned result.

     

    My DR is recommending The DeAngelis CHEMO  PROTOCOL regular MRI's and the possibility of an ASCT afterwards. My question is this the best approach as a 1st line attack ? or will you reserve the ASCT to see results of the 1st treatment?. I feel that I should go all in to attack it full blast the experience of all of you will help me with the best course of action. Thanks and if you want to e-mail me my personal; e-mail is victelio@hotmail.com

     

     

    Wish we had done it first!

    Vic,

    I am sorry you are dealing with this.  Read my posts and you will get all my hubs history.  Short version, 6/08 he was diagnosed, 7/08 he started the same treatments as you but we rejected the rituxan in favor of waiting to see if the 3 chemos  by themselves would cure him.  We were at Sloan Kettering where Dr DeAngelis worked. 

    Dr Abrey warned that first out of the gate was the best chance for a lasting remission but we were to fearful to go for it.

     

    He lasted thruough 4 rounds of the methotrexate, stopped the vincristine due to tingling in fingertips after the first dose, and had the procarbazine with every other round of the methotrexate. His lungs were damaged so they had to stop after four rounds and his tumors had shrunk 80% but while on the cytarabene, a new tumor grew in a new part of his brain.  He needed whole brain radiation and can no longer drive or work.

     

    Then we started the rituxan and in 8 months, a new tumor grew.  this time they combined 2 new chemos with the methotrexate, etopiside and BCNU.  then , when he was clear, he had the ASCT in July of '10.

     

    He has been clear since but we are watching him closely and his next mri is due next week.

     

    In the middle of all this, a friend was diagnosed and we told him our story.  He went for the tthree chemos and the rituxan, followed by half the whole brain radiation that my hub had. He has been clear since, more than 3 years.

     

    If you have any questions, ask. please, and I will help as much as I can. 

     

    You, and your family, are in my prayers.

  • leprechaun2
    leprechaun2 Member Posts: 79
    #35
    Victelio said:

    Newly Diagnosed

    Hi to All

     

    My name is Vic Martinez I live in Orlando, Florida and just a 2 weeks and a half ago I was diagnosed with B cell Primary CNS Lymphoma...I went through my first chemo 2 weeks ago with Metrotexate, Viscristine and Procarbin and I'm schedule for my second round On March 4th...This one will be preceded by an infussion of Ritoxiban (hopefully spelling is correct). My process started with vertigo, double vision and dizzines and after my ENT ordered and MRI they found a tumor on my posterior fossa that three neurosurgeons recomended to remove and biopsy instead of just doing a biopsy. I"m currently 56 years of age in good general health, my testicles US came back negative, bone marrow and CSF as well and LDH within normal levels.On April 17th they removed the original tumor but because the surgeon kept me on steroids until the surgery three biopsies came back inconclusive.

    As the symptoms returned I had another MRI done at Moffitt Cancer Center in Tampa that confirmed three other tumors 2 of them at the ventricle one of which was biopsy with the above mentioned result.

     

    My DR is recommending The DeAngelis CHEMO  PROTOCOL regular MRI's and the possibility of an ASCT afterwards. My question is this the best approach as a 1st line attack ? or will you reserve the ASCT to see results of the 1st treatment?. I feel that I should go all in to attack it full blast the experience of all of you will help me with the best course of action. Thanks and if you want to e-mail me my personal; e-mail is victelio@hotmail.com

     

     

    Wish we had done it first!

    Vic,

    I am sorry you are dealing with this.  Read my posts and you will get all my hubs history.  Short version, 6/08 he was diagnosed, 7/08 he started the same treatments as you but we rejected the rituxan in favor of waiting to see if the 3 chemos  by themselves would cure him.  We were at Sloan Kettering where Dr DeAngelis worked. 

    Dr Abrey warned that first out of the gate was the best chance for a lasting remission but we were to fearful to go for it.

     

    He lasted thruough 4 rounds of the methotrexate, stopped the vincristine due to tingling in fingertips after the first dose, and had the procarbazine with every other round of the methotrexate. His lungs were damaged so they had to stop after four rounds and his tumors had shrunk 80% but while on the cytarabene, a new tumor grew in a new part of his brain.  He needed whole brain radiation and can no longer drive or work.

     

    Then we started the rituxan and in 8 months, a new tumor grew.  this time they combined 2 new chemos with the methotrexate, etopiside and BCNU.  then , when he was clear, he had the ASCT in July of '10.

     

    He has been clear since but we are watching him closely and his next mri is due next week.

     

    In the middle of all this, a friend was diagnosed and we told him our story.  He went for the tthree chemos and the rituxan, followed by half the whole brain radiation that my hub had. He has been clear since, more than 3 years.

     

    If you have any questions, ask. please, and I will help as much as I can. 

     

    You, and your family, are in my prayers.

  • Victelio
    Victelio Member Posts: 22
    #36
    leprechaun2 said:

    Wish we had done it first!

    Vic,

    I am sorry you are dealing with this.  Read my posts and you will get all my hubs history.  Short version, 6/08 he was diagnosed, 7/08 he started the same treatments as you but we rejected the rituxan in favor of waiting to see if the 3 chemos  by themselves would cure him.  We were at Sloan Kettering where Dr DeAngelis worked. 

    Dr Abrey warned that first out of the gate was the best chance for a lasting remission but we were to fearful to go for it.

     

    He lasted thruough 4 rounds of the methotrexate, stopped the vincristine due to tingling in fingertips after the first dose, and had the procarbazine with every other round of the methotrexate. His lungs were damaged so they had to stop after four rounds and his tumors had shrunk 80% but while on the cytarabene, a new tumor grew in a new part of his brain.  He needed whole brain radiation and can no longer drive or work.

     

    Then we started the rituxan and in 8 months, a new tumor grew.  this time they combined 2 new chemos with the methotrexate, etopiside and BCNU.  then , when he was clear, he had the ASCT in July of '10.

     

    He has been clear since but we are watching him closely and his next mri is due next week.

     

    In the middle of all this, a friend was diagnosed and we told him our story.  He went for the tthree chemos and the rituxan, followed by half the whole brain radiation that my hub had. He has been clear since, more than 3 years.

     

    If you have any questions, ask. please, and I will help as much as I can. 

     

    You, and your family, are in my prayers.

    Thanks for your response this

    Thanks for your response this website has been very helpful with all the experiences of actual patients. I'm glad your hubby is in remision. BTW, What is BCNU?....ON MY CASE I will go through 8 rounds of MTX first 3 months every 2 weeks and after that once a month. I will receive the visicristine after the  MTX and rituxiban on the infusion center one day prior to the inpatient chemo. They will keep me on the Hospital until the MTX levels go down ususlly 72 hours. I will also be in procarbizine orally for 5 days every other chemo.

    I'm almost 100% convinced that I will do the ASCT afterwards....Do you know How long I have to wait for the transplant after the chemo?

    Thanks in advance for any info you can assist me and God Bless

     

    Vic

  • Victelio
    Victelio Member Posts: 22
    #37
    Dan_in_Canada said:

    Sorry to hear about your diagnosis

    Hi Vic,

     

    Sorry to hear about your diagnosis, hope you are still feeling ok.  It wasn't clear from your comments, did you have 4 separate tumours, of which 3 were benign and one is PCNSL?

    I'm not sure what the DeAngelis Chemo protocol entails, but I think it is standard to get at least 3 - 4 rounds of methotrexate (with combinations of other drugs such as vincristine, procarbazine, and rituximab) before an ASCT.  I think it has been shown that the methotrexate treatments are successful most of the time in treating the cancer, at least in the medium term, and this step is necessary so you don't have any cancerous stem cells when they are collected.  I believe the medical term for the first phase is called "induction". The further hi-dose chemo + ASCT ("consolidation" treatment) then helps reduce the chance of relapse. 

    You probably saw in the posts above that I am a believer in the ASCT; I've seen several longer term studies that have had positive results, so if you are healthy enough I would definitely suggest trying for it.  For most, it is not pleasant to go through (though in the posts above OilerNick seemed to have had a very quick recovery, hope he is doing ok), but I personally like the better odds it gives you

    Best of luck with your treatments,

    Dan

    PS. I didn't reply to my most recent post, but I am staying on dilantin to prevent seizures.  No real side effects & seems to work. 

    Hi Dan 
    I was looking forward

    Hi Dan 

    I was looking forward to hear from you bacause your posts are really both objetive and informational. On my case they biopsied only one of the tumors because it was on the best location. The tumor that they removed earlier on April 17 of 2012 biopsy came back as inconclusive I suspect because the Surgeon kept me on steroids until surgery date. The 3 new show up 9 months after the 1st tumor that practically dissapeared with steroids.

  • Victelio
    Victelio Member Posts: 22
    #38
    Victelio said:

    Hi Dan 
    I was looking forward

    Hi Dan 

    I was looking forward to hear from you bacause your posts are really both objetive and informational. On my case they biopsied only one of the tumors because it was on the best location. The tumor that they removed earlier on April 17 of 2012 biopsy came back as inconclusive I suspect because the Surgeon kept me on steroids until surgery date. The 3 new show up 9 months after the 1st tumor that practically dissapeared with steroids.

    Right now I'm under the care

    Right now I'm under the care of Dr Peter Forsyth, he's from Canada specialist in CNS lymphoma and a very caring individual. I'm convinced that I'm in good hands at Moffitt Cancer Center in Tampa. Dr Forsyth is the Head of the Neuro Oncology department. I briefly described the De'Angelis protocdol on my answer to Leprechaum your input will be aprecated.

     

    God Bless and stay healthy

    Vic

  • leprechaun2
    leprechaun2 Member Posts: 79
    #39
    Victelio said:

    Thanks for your response this

    Thanks for your response this website has been very helpful with all the experiences of actual patients. I'm glad your hubby is in remision. BTW, What is BCNU?....ON MY CASE I will go through 8 rounds of MTX first 3 months every 2 weeks and after that once a month. I will receive the visicristine after the  MTX and rituxiban on the infusion center one day prior to the inpatient chemo. They will keep me on the Hospital until the MTX levels go down ususlly 72 hours. I will also be in procarbizine orally for 5 days every other chemo.

    I'm almost 100% convinced that I will do the ASCT afterwards....Do you know How long I have to wait for the transplant after the chemo?

    Thanks in advance for any info you can assist me and God Bless

     

    Vic

    You can do it!

    Hi Vic,

    BiCNU is Carmustine, one of the chemos he had with MTX. He also had to stay in the hospital after his MTX until it cleared, usually he went home on the 3rd day after.  He drank water and had no acidic foods, although he did have a small coffee each day, his only cheat furing the process.

    After he was NED, it was about 2 months for his transplant.  During that time, his cells were harvested and we attended a talk given by people who had been through it.  He went in for his ASCT June 27 and was out of the hospital on July 20.  some of this was really rough but well worth it! His recovery was long due to the number of treatments he had before undergoing the transplant, it took over a year for his blood counts to be anywhere near normal.  He has not been sick one day since the transplant, although I have been sick with a few colds in that time!

    He still takes Acyclovir to prevent Shingles.  He has been on Keppra since July  08 when he had his only seizure.

    After his transplant he had a few more meds to take to keep him safe from other things but he is done them now. 

    I have detailed notes from our stay during his transplant and his recovery afterwards.  Ask whatever you like...

    God bless you too!

     

     

  • Victelio
    Victelio Member Posts: 22
    #40
    Excuse my ignorance on acronyms

    WHAT IS NED ?

  • leprechaun2
    leprechaun2 Member Posts: 79
    #41
    Victelio said:

    Excuse my ignorance on acronyms

    WHAT IS NED ?

    No Evidence of Disease!

    Hope you are there soon, with No Evidence of Disease!

    Sorry for throwing you,

     

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