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Thread: Primary CNS Lymphoma, Diffuse Large Cell Lymphoma - B-Cell Type. Am I alone?

  1. #1
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    Primary CNS Lymphoma, Diffuse Large Cell Lymphoma - B-Cell Type. Am I alone?

    Is there anyone else out there with this type of cancer? The amount of information on the net is hopelessly small. I have been to all the confusing study oriented sights (the ones that spout deep medical language that I can't understand). Prognosis does not seem very promising. All the studies and statistics I've seen shows a median survival rate of only about 4 years after MTX chemo and radiation treatments, and that's if you have no underlying health issues (diabetes, liver problems, etc). My assumption is that the cancer is so rare and so aggressive that few survive to join this forum.

    I'm one of the "lucky" ones. 54 years old with a strong immune system, no underlying illnesses, and responding very well to treatment. Side effects from Rituximab, Methotrexate, Vincristine, Procarbazine, and Cytarabine (with Whole-Brain Radiotherapy to start next month) are not too severe and are controllable with meds. I was diagnosed by biopsy in May after a bad seizure and 4 days in a coma (the first indication that I was sick)!

    I would desperately like to communicate with anyone that has ANY exposure to this type of cancer.

    Hoping to hear from anyone that shares my situation.
    Last edited by Boats36; 09-21-2012 at 11:32 AM. Reason: deleted link references

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    Hi and welcome to the forum. just remember stats are just stats. I have GBM with a medium survival of 13.6 months . Im almost at 16 months and I feel great and physically Im doing pretty dang good. Wish I could help with your type of cancer

    josh

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    Welcome Boats!
    I am the wife of a PCNS Lymphoma, diffuse large B-Cell patient! And you are right, there aren't too many of us out there. I follow along here with everybody but mainly brain tumors because their symptom sometimes are closer to what we see than Lymphoma. Right now, they think he is in remission, no change but there si something still there that they think is swelling or edema.... so you watch and wait. The end of April completed his HD MTX treatments, 8 every two weeks then 11 every four weeks. Took a little hit to the kidneys which made them reduce the amount of MTX to the minimum that would get through the BBB. In the same boat with age, will be 54 soon. Would also like to hear from you about their choice to do radiation at this point, it has been one of my BIG concerns.Would be happy to chat with you by PM or on here. Glad to hear you are doing well so far!
    Spouse/Caregiver of 54 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!

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    As far as radiation is concerned, I'm part of a clinical study that will be using low dose radiation. The previous study used a total of 45 Gy and had all kinds of toxicity issues. The plan for me not to exceed a total of 25 Gy. It seems like I'm being used as a lab rat. The low dose should lower the toxicity issues, but may not be strong enough to effect the tumor. We'll have to wait and see. I'll let you know how it works out.

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    Hi there, I'm fairly new here but I would love to communicate with you anytime. I do not have PCNSL, I actually have secondary CNSL, relapsed from primary DLBCL. There are very few with PCNSL, fewer with my diagnosis. So I know exactly how you feel. The prognosis is sh!t for sure, but I like to think of myself as the 1%. I am the one that will survive. I am the one that will beat the odds. I am not going to let this beat me. I know no other way to attack this. You are welcome to read more about my journey on the thread I started here:

    http://www.cancerforums.net/threads/...DLBCL-now-CNSL

    Please feel free to PM me and we can exchange email addresses or what not. And stay positive! You will beat this.
    11/11 Diagnosed DLBCL Stage 4
    12/11 R-CHOP + intrathecal Methotrexate x 6
    3/12 Chemo done
    5/12 PET scan shows all clear!
    8/12 Relapse to CNSL
    10/12 Finished Hyper CVAD-B x3
    Restaged - stable disease (turned out not so stable)
    11/12 Mobilization: Etopiside + ARA-C + Rituxan + IT MTX
    12/12 Sepsis, heart failure, and an ex-lap on Christmas
    1/13 Autologous Stem Cell Transplant
    5/13 Day 100 check up - bone marrow and CSF all clear!

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    [QUOTE=Boats36;146377

    I would also like to recommend another forum to those looking for more information.
    .[/QUOTE]

    link deleted
    Last edited by jpearson; 09-20-2012 at 09:02 AM. Reason: link deleted per policy

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    Quote Originally Posted by GracieJane View Post
    Welcome Boats!
    The end of April completed his HD MTX treatments, 8 every two weeks then 11 every four weeks. !
    My God! That sounds like a lot of MTX! My treatment consists of 1 Retruxan infusion at the doctors office (then I return home) once every 2 weeks followed by an inpatient infusion of MTX the following day. I stay inpatient while being monitored for MTX levels at 24, 48 and 72 hours. MTX levels at 24 hrs have averaged 1.4 mols/mml and it is suggested to be below .01 before discharge, but my Onc will release me once the levels get below .08 or so. I have never had to stay past the 48 hr. levels check. I have had 6 of 8 cycles so far.

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    Quick side-effect treatment tips - Mouth sores, bloating and constipation have been my major complaints (with lesser effects from finger tip and foot narcropothy although only resulting in difficulty doing detailed work with my hands and fingers, tying my shoes and removing the seals on individual pills is a struggle, but the numbness in my feet is limited to the pad just behind my toes and extending to the arch. No "foot drop" yet. I also suffer from severe fatigue and horribly irritating eye and nose watering and a slight challenge to my balance when walking). I have been taking Folic Acid (at recommended dose levels) for treatment of mouth sores. It seems to have a positive effect. Also, dill pickle slices reduce the metallic taste from foods and make them taste significantly better for a short time after eating them. For bloating I cannot more highly recommend "Complete Spectrum Plant Based Enzymes" Ultra Plan is the brand I use and is available at High Health stores (but like products are available just about anywhere). It is one of the less expensive enzymes available - just read the labels and get the cheapest one that breaks down protein, fats, carbohydrates, fiber and milk sugars, anything else is just marketing hype. I take 2 before each meal or every 8 hours if I'm not eating. It is a true Godsend! For constipation I take 1 daily dose of Miralax. It's a white powder that dissolves in 6-8 oz of juice or water and has no taste (excellent for downing other medications). Walgreen's has a brand called "Smoothlax" which is the same thing only 1/2 the cost. It is an Osmotic laxative and stool softener that's gentle enough for everyday use.

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    Sounds like they are giving you radiation instead of the eleven maintenance MTX treatments. Lucky you to get out in 48 hours, I spose because of the creatinine rise indicating kidney issues, he would go in on Thursday and get to come home on Tuesday. Grateful the stuff is working but SO sick of staying in the hospital. I have heard that using plastic silverware will help with the metallic taste also. Have they got you on any kind of blood thinner, clots are very common with PCNS also with the chemo, kind of a double whammy. Still dealing with the fatigue here and dry eyes drive him crazy which adds to the feeling of fatigue. PM me with the other website you have been referring to. Glad to hear you are nearing the end of your MTX treatment, it's a booger!
    Spouse/Caregiver of 54 yr old male
    Diagnosed Primary CNS Lymphoma 2/2011
    HDMTX Chemo- 8 cycles
    HDMTX Maintenance Chemo- 11 cycles
    Complications: clots, kidney issues, slow clearance of
    chemo, dermatitis
    11/2013 Recurring clots in lungs/legs
    Scan 12-27-13 all clear
    Scan 3-13 all clear
    Next scan in October, done and all clear!

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    I'm still on primary treatment (standard treatment) of high dose MTX (3.5 gm/M2). I'm not on a maintenance schedule (yet). And don't get me wrong, I receive many more drugs than what I have listed here. They include... Kepra (anti-seizure), dexamethazone (anti-inflammatory steroid) and pepsid (anti-nausea) daily. Leucovorin (kidney rescue medication to protect from the effects of MTX), Procarbozine (slows or stops the growth of cancer cells in your body), Filgrastim (also known as Neupogen which stimulates bone marrow to increase production of white blood cells), benadryl (rescue medication for Ritruxen), lorazepan (anti-anxiety), and acetaminophen (taken during Ritruxen infusion). After the standard treatment is completed, I begin consolidation chemo using Cytarabine (damages DNA of rapidly dividing cells used mainly in the treatment of non-Hodgkin lymphoma), and Neulasta (white blood cell booster, similar effects to Neupogen). At that time I will also be evaluated for possible radiation therapy (which isn't a done deal yet).
    Last edited by Boats36; 09-20-2012 at 11:27 AM.

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    Hi Boats!

    I agree,certainly not a lot to read on the web about PCNSL. My fathers is being treated for it without confirmed diagnosis. PCNSL in the cerebellum is what they believe. I recognize a lot the drugs/medicines you have listed there.All of the family are really sad and down because of this.But the thing thats the hardest isnt the disease right now , its the mental state of my dad. Its like he has parkinson, forgets things, imagines stuff, says really weird stuff. Dont even know any longer if he is aware of the situatuin he is in and much much more.....

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    Hi Boats,

    I was trolling the internet for any new info on PCNSL and came across your posting. I'm a 45 year old relatively healthy male, diagnosed with PCNSL earlier in March this year. My diagnosis started with a seizure as well. I've been treated with 4 sessions of MTX, then underwent a hi dose chemo with busulfan and thiotepa, with an autologous stem cell transplant to assist with recovery. I'm in remission, now about 4 months out from the stem cell transplant and am feeling almost back to normal.

    You're not the only one out there with this, I started posting with a forum on the American Cancer Society's Cancer Survivor network; you'll find some more survivors and info there too. I'd post a link here to that forum but I am too new to this forum to do so. If you google "primary cns lymphoma survivors" it's close to the top.

    Don't be too discouraged by the stats, I think if you check some more recent info on the internet you'll see there have been some more promising developments with treatment, and depending on treatment, more recent 5 year survival stats are more like 60 - 80%, rather than the 4 year median survival ( I originally saw these numbers and was discouraged too). There are a number of treatment options to consider; if your doctor(s) haven't already mentioned it, I'd ask about whether you should consider an aggressive chemo with a stem cell transplant type treatment.

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    Hi Igor,

    I'm sorry to hear about your father's condition and based on what you've told me, I would guess his condition is rather advanced. Having PCNSL in the cerebellum is rare even for PCNSL. I would like to refer you to a man named Ian (ialsgaard@aol.com). He is an 11 year survivor with PCNSL that is also located in his cerebellum. He may turn out to be a valuable resource for you and your family. Good Luck and my God Bless.

    Mike

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    Duplicate Entry
    Last edited by Boats36; 10-08-2012 at 03:17 PM. Reason: Duplicate Entry

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    Hi Danno,

    Thanks for the encouraging news about median survival rates. It's good to know their making progress. On Thursday I complete my standard treatment of high dose MTX (8 cycles) and then go into 2 consolidation treatments, then I'm done. The stem cell option has not yet been offered to me. I am accepting treatment well and my Dr. says my condition is improving beyond expectations. I am confident in my outcome.

    Thanks for the ACS link!

    Mike

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    You're not alone. I'm a 41 y.o. female diagnosed with PCNSL in June 2012. I spent the month of May dealing with headaches and eventually had an MRI which showed swelling on my brain. A biopsy confirmed the PCNSL. I was very healthy before my diagnosis and other than this disease remain feeling good!
    I made the decision to not read about the surivival rates of PCNSL. I think every situation is unique and depending on one's age, overall health, and response to treatment will be the underlying factor to one's survival. Don't spend too much time on statistics.
    As far as my treatment, I began high dose chemotherapy in June. This was a combination of Methotrexate and Cytarabine. I received my treatment in-patient in the hospital. I spent four days in the hospital receiving the meds. Then I'd have two weeks at home and repeated the cycle four times.
    In late September, a PET scan showed the tumor was inactive. I began a pre-medical evaluation for a stem cell transplant. However, before the stem cell transplant could begin, an MRI showed the tumor had grown significantly after having being inactive just weeks before.
    A setback for sure, but the decision was made to go back to the chemo regimen used before, but this time at an even higher dose. I tolerated it quite well. I did two more rounds (same as before in the hospital). An MRI after the first round showed a significant decrease in size. (This was just completed in November 2012).
    I am once again scheduled for the stem cell transplant. If all goes accordingly, the transplant will begin in the next week. It isn't a guaranteed curative treatment, but it may be, or at the least add significantly to my life.
    We can only take one day at the time! Feel free to contact me.

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    Red face hope for Primary CNS lymphoma

    Quote Originally Posted by Boats36 View Post
    Is there anyone else out there with this type of cancer? The amount of information on the net is hopelessly small. I have been to all the confusing study oriented sights (the ones that spout deep medical language that I can't understand). Prognosis does not seem very promising. All the studies and statistics I've seen shows a median survival rate of only about 4 years after MTX chemo and radiation treatments, and that's if you have no underlying health issues (diabetes, liver problems, etc). My assumption is that the cancer is so rare and so aggressive that few survive to join this forum.

    I'm one of the "lucky" ones. 54 years old with a strong immune system, no underlying illnesses, and responding very well to treatment. Side effects from Rituximab, Methotrexate, Vincristine, Procarbazine, and Cytarabine (with Whole-Brain Radiotherapy to start next month) are not too severe and are controllable with meds. I was diagnosed by biopsy in May after a bad seizure and 4 days in a coma (the first indication that I was sick)!

    I would desperately like to communicate with anyone that has ANY exposure to this type of cancer.

    Hoping to hear from anyone that shares my situation.
    First of all be happy you have lymphoma rather than GMB! lymphoma is chemo sensitive! do not pay attention to statistics because they are based on people with all sorts of problems including HIV whose immune systems are bad anyway.

    my husband was finally diagnosed after several months of wondering what his 4 cm tumor was because the dexamethazone altered the cells so much, they weren't sure what it was until he had a craniotomy.

    Methotrexate failed and nearly killed him causing the tumor to grow. But with no choice the doctor gave him several times the normal dose of HyperCVAD-R and the tumor was finally killed off with 2 treatments. However, that nearly killed him due to blood poisoning- septic shock with multiple organ failure. He got through that with everyone calling him the miracle man.

    when he left the hospital after many months, he was basically paralyzed. But i brought him home and slowly he got better. today he walks with a walker (trionic veloped), and has small cognitive deficits. he is basically the same person, but while his memory is fine, his recall is not always good. he remembers he did something, but not sure when. His fatique after a year is still there, and his left foot is painful. but he is alive and doing well. his latest MRI show the tumor is gone.

    basically, don't ever give up hope, stay strong, don't give in. stay healthy, drink tons of water, keep exercising so you don't get blood clots (which my husband did), keep moving so you don't lose physical strenth. you will live! and make sure you have someone looking out for you and has alot of patience. people with brain tumors develop have some sort of brain injury. join a support group. be with people who are positive and not negative.

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    hi kimmieh
    it feels great to see someone coping so courageously.although i m not
    my ma was diagnosed with pcnsl after the biopsy of the tumour which was removed on 3rd jan.
    since 20 dec 2012 she had headache we thought it was due to constipation and gas.but on 30th a ct showed a mass lesion the neuro-medicine dr. suggested surgery after seeing her MRI on 31s.on 30 and 31st ma didnt eat much and what little she ate she vommited out.on 31st she lost consciousness and was hospitalized.surgery on 3rd jan at apollo hospital.biopsy report on 7jan showed pcnsl. the oncologist said she will require chemotherapy and suggested we go to TATA memorial center for cancer in india.
    she just completed her 1st hdmtx chemo from 30jan -2feb inpatient. couldnt eat much and threw up what she managed to eat.she finds everything tasteless even now.
    after bringing her home she doesnt eat much at lunch or dinner,she mainly drinks alot of coconut water and eats fruits bread eggs.
    what i m really worried about
    1- is that her head still hurts a lot but goes away after taking paracetamol
    2-this past 2 days right b4 sleeping or inbetween sleep she wakes up and becomes a bit disoriented and confused about her whereabouts.she often thinks she is back home in dhaka instead of mumbai india
    is this normal please help me.the doctors here are not very approachable.and i need quick information desperately.
    Tahia

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    Hi Tahia,
    I was diagnosed with PCNSL in April 2011 and I have been in remission since August 2011. All the symptoms you describe are familiar to me. I lost my appetite and had nausea for a few weeks before my diagnosis. I had headaches and disorientation and confusion after my treatments began. As my tumors shrank, these symptoms lessened. It will take some time for the drugs to be effective, and each patient will respond differently, but in most cases the tumors will respond to methotrexate. Stay strong.

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    tahia -
    The side effects she is suffering from seem normal. The hd-mtx chemo can be hard on the body. It can make you sick to your stomach and cause vomiting or loss of appetite. Make sure she drinks lots of fluids. Confusion can occur too because of the high dose. As far as the headache, if those continue, I would talk to doctor. She will likely have more rounds of chemo after this. I found each round of chemo to be different, some seemed easy and other times there were side effects.

 
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