CSN Login
Members Online: 16

Primary CNS Lymphoma

ziegs22
Posts: 2
Joined: Jun 2011

I am a healthy 32 year old male recently diagnosed with Primary CNS Lymphoma. I have been through 3 cycles of high-dose methotrexate with doses of procarbazine every other treatment and so far my progress has been great. I am writing because - from what I know about CNS Lymphoma of the brain - I am a very unique case. Because of the uniqueness of my situation I am curious if (1) there is anyone else out there that has a similar case; and (2) if anyone knows what long-term prognosis looks like ... I'm sure others of you have been equally frustrated getting a straight answer from your Doctor(s). Thank you for your responses and god bless!

leprechaun2
Posts: 76
Joined: Jul 2011

Marina,

My husband was diagnosed when he was 53. The best news is he is now 58!  CNS lymphoma is very treatable. After he had a stem cell transplant, he has been cancer-free for three years. 

I will answer any question you would like.  I do recommend finding a doc who specializes in its treatment.  We are still under the care of Sloan Kettering Cancer Center in NYC.

Your family is in my prayers.

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Marina,

I echo Sten and Leprechaun's comments in that you should not give up hope.  At my diagnosis, my first doctor also gave me a very poor prognosis, but here I am one year later feeling well.

I also like it that I am hearing of many more longer term survivors out there.

Dan

Mary N.
Posts: 89
Joined: Jun 2013

Marina - There is HOPE.  I was diagnosed with CNS lynthoma  (in my brain ) and have been treated with high dose MTX and Rutixen.  It has been 3 1/2 years and they gave me six months because of my age 70.  My doc sreally doesn't specialize in this kind of stuff, his specialist is breast cancer but he is in constant contact with Stanford and I am living much longer than anyone expects.  Best wishes to you both.  Blessings.

Mary

MarinaL
Posts: 2
Joined: Jul 2013

My husband was just diagnosed with CNS lymphoma 7/26/13.

He was initially diagnosed with large b cell NHL in January 2013. Went through 6 rounds of RCHOP and after PET in June was 'lymphoma free'.

Well. He started getting really weak in June and I ended up bringing him into the hospital last week and they did a lumbar puncture and found lymphoma

in the spinal fluid. Based on MRI they said it's in the spine for sure, but also checking if it has reached the brain. We should know more by tomorrow. In

the meantime they started the chemotherapy via lumbar puncture I think it's called intrathecal chemo. 

While I think that our oncologists are great, I am sure there are some oncologists out there that specialize in this type of cancer. Any suggestions?

Also, I don't think the prognosis is good. Our oncologist said it's not very good - given that it's a rare type of cancer. He did not want to give us a number or years

but said to not despair (which is hard) and to fight it as much as we can.

I need advice and support right now, anything helps.

My husband is 55 years old, we have a 8month old and a almost 3 year old. I'm the worried wife.

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

Marina,

I am sorry for your husband and for you. The best thing you can do is to keep up your spirits and go on fighting. While CNS lymphoma is a serious disease, it can be cured and many people survive it. I have been free from it for almost one year now, and I am getting stronger. 

splatz
Posts: 2
Joined: Apr 2013

Hi Marina, sorry to hear about diagnosis, my wife had primary cns lymphoma which we were also told was rare and was difficult to get any survival stats from anyone.  I believe they dont want you to dwell on the stats and concentrate on treatment and health.  We had great docs in Mass at MGH, was recommended to go there from docs at Stanford.  They have had very good results treating PCNSL and the care was the best, good luck, and try to stay positive. God Bless..

dat1000
Posts: 7
Joined: May 2013

My father is 71 years old and has had whole brain radiation (chemotherapy had to be stopped due to heart failure). His dexamethasone was just recently decreased and he has now gone into severe depression. He is no longer eating.  They have increased his dexamethasone but this does not seem to have helped at this point. He seems to be losing his will to continue. There are no signs of the tumor returning yet. He is having confusion and incontinence from the radiation therapy.  He is no longer able to drive and feels his independence is gone. It seems like the fight is leaving him. Does anyone have any information that may help?

 

Thanks.

leprechaun2
Posts: 76
Joined: Jul 2011

Hi dat, I am sorry to hear your father is having such a hard time.

When my husband was finished his radiation, he was exhausted. He didn't have the energy to eat, to do anything orther than sleep 20 hrs a day, literally.  Provigil helped cut his sleep down to 14 hrs, giving him 10 hrs of wakefulness where he was present to me and to the family.  I do not know if this drug or something like it may help but it might be worth tallking about.  It focuses the mind so confusion may be less too.

I am praying for you all.

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

Hi dat1000,

I had primary CNS lymphoma starting March 2012, and I have now been free from it for almost one year. When I was ill I thought a lot about what is important in life. I found that my family is what matters to me. The thing I could to regarding my disease was to keep my spirits up and do my best to endure the treatments, and I hoped that this would keep my family relatively happy. 

I am sorry that your father seems to be losing his will to continue. What you can do is to show your love for him. Hopefully this can make him realize that his problem concerns the whole family and that he should do his best for your sake.

Mary N.
Posts: 89
Joined: Jun 2013

I am so sorry that your father is having such difficulty.  I really can't say anthing really helpful but wanted you to know that I was thinking about you and your father.

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

Hi Seth,

I am 69 and I was diagnosed with primary CNS lymphoma in March 2012. I was treated first with cortisone and then with Methotrexate, antibodies, and other chemo three times four days with about one month's intermission between treatments. Then my stem cells were collected, and I was given the BEAM high dose chemo for about one week, and at the end of that week I got a transplant of my own stem cells to restore my bone marrow which was destroyed by the high dose chemo.

After the high dose chemo I had the following experience:

- After about three weeks I could take very short walks outdoors

- After about 2 - 3 months my stomach was fairly in order again

- After six months I felt OK but not quite as strong as before

- After one year I was in reasonably good shape and could walk with my wife in the Norwegian Mountains and go to other countries like Spain and Greenland

Stem cell transplant is the best treatment for primary CNS lymphoma, and it gives a good chance of long term survival, which you can see from links in this thread. For your comfort, I repeat these links here below: 

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

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

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

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

http://www.ncbi.nlm.nih.gov/pubmed/22473593

 

If I had a choice now between stem cell transplant or not, I would certainly choose stem cell transplant. The high dose chemo takes long to recover from, but I think that is is definitely worth taking.

I will put this reply both near your post and at the end of this thread, so it will be easy to find.

Good luck!

Sten

 

SethfromMaryland
Posts: 4
Joined: Dec 2013

Sten,

Thanks for the response and the informational links. I am newly in remission and am trying to understand the next steps moving forward. So, the more information on therapies that may work, the better. As it is, I'm headed in for my 9th round of chemo this weekend.

Seth

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi Sten, Mary N. Leprechaun 2, Oiler Nick, Victello, and all other PCNSL survivors.

I haven't checked in for quite a while, but like Oiler Nick,  I have put my treatment somewhat out of my mind and have moved on to the business of carrying on with my life.

I am still 100% no evidence of disease, close to my 2nd 'rebirthday' post stem cell transplant, and not experiencing any real long term deficit due to my treatment.  I am still taking Dilantin to prevent any possible seizures.  I did forget to take it a couple of times, and notice it does have some withdrawal effects ... tingling in the extremities, sensitivity to light and a feeling of general 'spaciness' / anxiety.  I'm hoping after talking to my doctors later this year that I can wean myself off of Dilantin.  I will also be ending my vacinations soon, and will stop taking anti-shingles medication (Valacyclovir) 

I'm very very thankful for the development of an effective protocol for PCNSL, and still highly encourage anyone considering a stem cell transplant to go with this option.

Hope you are all still continuing to do well and want to thank you for your support & contributions to this forum

 

Take care,

Dan

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

 

Hi Dan,

 

How nice to hear from you again! You have really contributed a lot to this forum. I am glad to see that you are OK and that you may even wean yourself off medicine. 

I am fine, too. I have no signs of disease, and the only deficit left is that my feet are partly a little numb, but that causes me no trouble at all.

I still take Temodar four days each month to prevent a relapse, and I will do that for a total of of two years with nine months left now.

I am almost as strong as before my disease. Soon my wife and I will travel to Namibia, Botswana, and Zimbabwe (she likes travelling).

I enjoy life, my family with grandchildren, photography, walks, yoga, and playing classical guitar and alto guitar.

 

Best wishes to you,

Sten

 

Victelio
Posts: 22
Joined: Feb 2013

After a succesful Induction and Consolidation phase  I was NED until March 27th of this year. They found a lession on a routinary follow up scan just a couple of weeks ago so my remission lasted about 11 months and some days. I received my last consolidation chemo in August of 13 but my lessions dissapeared by April of 2013.

Needless to say it hit me hard and as Dan mentioned on his post early I just stop posting to try to go on with my life even when I monitored the board anonimously. I received my first Salvage Chemo last week they used Ritoximab, Metrotexate,epotiside, carmustine and Prednisone , next week we go for Ritoximab /MTX 2 weeks later repeat the 1st cycle and then last week of May Ritoximab / MTX once more and MRI. MRI june 9th and if I respond by either CR or PR then we will go for the ACST and or WBRT. I'm almost 100% I will do the ACST not so sure about WBRT...

Is great to see postings from Dan, Oiler nick, lephrecaum and so many others...The pity face was left behind and right now back to fighting mood...take care and God Bless. 

vic

Victelio
Posts: 22
Joined: Feb 2013

I will be seeing Dr Lisa De Angelis on May 20th @ Sloan Kettering to get a 2nd opinion at the insistence of my DR they worked together and will be good to see if there's any new treatment approach for relapse disease because as we all know we are extremely "exclusive" patients.

Victelio
Posts: 22
Joined: Feb 2013

Very happy with your progress and appreciatte your posts  as well. Im curious?, Why your Dr decided on using Beam pre transplant instead of Carmustine /Thiotepa..?

leprechaun2
Posts: 76
Joined: Jul 2011

Hey Vic, you have me catching up here.

 

The WBRT is nasty stuff.  It will kill what might be there but the deficits are incredible.  When my husband had it, it was 25 rounds of 40 Gly/round.

We were warned about the side effects and he is living with every one of them.  since then, the dose has been halved.  I don't know how that affects is success but I think the side effects must be less.  Dr DeAngelis will give you the best info.  Good luck, I will keep you in my prayers.

 

 

 

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

I am new here and admire you all formposting and helping others. I am trying tomfind the best treatments available for my husband. What is WBRT? No one here has mentioned anything other than the standard he gets the mabthera and then a few days after MTX. Since its not in english I'm frustrated and really want to fly him back to Florida and soon as he gets the ok.

Victelio
Posts: 22
Joined: Feb 2013

Younique 

WBRT means whole brain radiation treatment for years it was the primary treatment for CNS Lymphoma but over the years is been use as a last resort. There are some clinical trials going with the use of half the dose of radiation as an alternative for treatment but is not the standard. The standard induction treatment use is the combination of Ritoximab, High Dose Metrotexate either at 3.5 or 8 mc/gms combined with procarbizine and vincristine.After evaluating the response through MRI's more and more Dr's treating this condition are following up with Autolugus Stem Cell transplant that is a transplant of your own bone marrow and some Centers are doing also a reduced dose Radiation. Some oncologists add another drug call Temodar to their protocol. What has been proven so far is the effectiveness of HD/ Metrotexate.

You mention that your husband can receive treatment in Florida I don't know what part of the the state you live but i live in Orlando and I was treated at Moffitt Camcer Center in Tampa Florida and I'm extremely satisfied with the experience. Moffitt is the only Hosp Comprehensive Cancer Center in Florida a distinction given to a llimited number of facilities by the National Cancer Institutes, is ranked #17 on the US News and World Report 100 best Cancer Center in the US. In north Florida in Gainesville the University of Florida Shands Center I understand is an excellent facility and in the Orlando Area Orlando Health just ended a parnership they had with MD Anderson and started one with UF/Shands. I'm not familiar with facilities in South Florida but I will not hesitate to go to either Moffitt or UF.

if you have questions feel free to send me a private  message through this website.

 

Vic

Victelio
Posts: 22
Joined: Feb 2013

Please excuse the multiple typos on my reply, I posted on a rush

 

Vic

 

 

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

Vic your information is welcomed and apprecitaed. Today we were told he can not fly for 12 hours back to Miami, he has to finish treatment here. They also took him off the kepra...well actually reduced it to 250mg 1x a day for 3 days then stop. Over all dr seems pleased with his progress. Hoping for the mri within 2 weeks to confirm more.

so we continue the chemo treatment on Sunday or Monday and hoping for less than a 7 day stay this time. He's been very sleepy since his last chemo. Praying it goes well.

Thank you for your responses :)

Victelio
Posts: 22
Joined: Feb 2013

I sent you 2 e-mails Today with the information you asked for. If they are following protocol you may want to finish at least the Induction phase (1st cycles of chemo) there, on the mean time you may want to contact the Institutions where you may pursue treatment later and explain your situation.You may want to authorize release of Medical Records to them. You are in Israel where they have excellent profesionals and Hospitals, but after that if you are planning Stem Cell Transplant or Radiation or both I will look at options closer to home and you couldn't go wrong with any of the 3 Institutions you are considering. BTW I'm on the waiting room right now for my stem cell transplant consultation

 

keep the fight

vic

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

Vic how did your appointment go? Very interested in learning more about stem cells and who is a candidate for it..

Victelio
Posts: 22
Joined: Feb 2013

The consult went great I saw the Director of the Bone Marrow Transplant unit and the Head Nurse and we went over my case, past treatment, response, actual treatment and what the transplant consits of , procedures, mobilization,collection etc... even when I have read about it I had some questions they answered all of them and both expend a good ammount of time going  over the process. They gave me a step by step book so I can read further. Results so far in clinical trials are encouraging and I believe like a good number of people that post in this board this potentially can become standard of treatment. Conclusive evidence has not come sooner because of the limited ammounts of patients. Only 1,900 patients are diagnosed with PCNSL in the US each year. Fortunately there are Dr's like De Angelis, Abrey , Ferreri in Italy and a lot of others that have researched this condition extensively even with the small percentage of patients like us. Coincidentally the past month a clinical study was published at the ten year mark by Dr Ferreri with some interesting and promising results. Even when the Induction Chemo used then was not the "De Angelis Protocol" because it was not standard of care at that time and a good number of patients received WBRT at full dose apparently neuro cognitive damages were not as severe as expected. Again this is a little speculative and data is limited so we need to find the best care available and find the right professional to trust him with our treatment. Hopefully you will be out of the Hospital soon here I am waiting for my MTX level to go down from .20 to .09 to be released either this afternoon or tomorrow morning 

God bless

Vic

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

I didnt know you were in the hospital now. Glad your doing well. How many MTX have you had? Danny goes formhis 3rd MTX this Sundaynor Monday. Here they don't release you from hospital until the levels are .00 so its usally between 5-7 days.

how aremyour side effects from MTX? Curious what to,expect from round 3.

hope you are released and feel better quickly, 

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

Its the fouth day since MTX and Procarbazine treatment. Still in hospital count today .14 so not being released. Praying for tomorrowS release but its a slim chance! Only slight nausea this time but no desire to eat! That's understandable!

hope everyone reading the thread is home and feeling great!

Victelio
Posts: 22
Joined: Feb 2013

The more treatments I received the longer it took to clear...You mentioned that in your Hospital they will not release until is .00 in my case it was .09 or lower. The longest I've ever stayed was 5 days. Hang in there my thoughts and prayers are with you & your husband.

Vic

Victelio
Posts: 22
Joined: Feb 2013

Beside the waiting game, Metrotexate can be hard on the kidneys, that's why they keep you in fluids, give you recovery pills after (lecouvorin) and check the urine PH regulary. So far I have recieved 10 doses and I have 2 more to go, I haven't felt major side effects. The lost of apetite and sensitivity to the light I don't know to what drug pinnned it on. Regarding apetite, last week I lose 9 pounds in my admission for metrotrotexate, I was out Sunday. By Thursday I've regained every bit of it. Hospital cooks, God Bless them, but they remind me of the Food Network Series "Worst Cooks in America".I believe that Hospital Admimistrators need to address the QUALITY OF FOOD, COME ON THIS IS A MULTI BILLION DOLLAR INDUSTRY.I will reccommend to put every member of the board of every Hospital around the nation on a 2 week patient's diet.That will take care of it.Laughing

Younique's picture
Younique
Posts: 13
Joined: Apr 2014

It's so nice to see you keep a sense of humor through this. Here is the food is so awfull my husband wont even allow mem to open the try!! He hates the smell.  If not for my daughter bring us food we would starve...lol. Actually the hospital doesnt bring the wife anything!!! There is a coffee shop I get a few things from. Cofee is most important!!!

Hoping to hear of complete recovery for all!.

 

janie

Victelio
Posts: 22
Joined: Feb 2013

Here is the same they have some items for sale at the cafeteria and they have some decent options specially in Sandwiches and salads. We order from multiple nearby restaurants both for my wife and me and they allow it. I only know of a hospital in Orlando that sold discounted food trays for caregivers. Tell your husband that I fully understand how he feels, by the end of my treatment last year sometimes I didn't order at all or if they delivered it I asked them to take it away because I couldn't stand the smell...I developed a delivery cart phobia as soon as I heard the sound of the cart wheels my stomach turned, all will pass is going to get better. 

Vic 

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

Victelio,

 

You asked me why I got the BEAM treatment. Well, it seems to be the standard high dose chemo treatment here in Sweden.

It must be succeeded by autologous stem cell transplant, because it destroys the bone marrow.

 

Best wishes,

Sten

 

Victelio
Posts: 22
Joined: Feb 2013

Hi Sten 

 

Thanks for the info apparently recently they are using Thiotepa, Busulfan and Carmustine for PCNS Pre ACST Trasplant because some Dr's believe those drugs have a better penetration of the Brain Blood Barrier I know that Beam is the more commonly use so far. I have a consult on Sloan Ketering in NY and will ask the question .

 

HAPPY TO HEAR ABOUT YOUR CONTINIUNG REMISSION

 

Viv

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi Victelio,

 

Really sorry to hear about your relapse, though glad to hear you are keeping your spirits up, and you're at least lucky the relapse was detected relatively early.  I still constantly worry about relapse myself, and often perform neuro-motor tests like fingertip coordination tapping, toe moving etc, just to get some reassurance.

While I appreciated the care, I felt the same way about having to stay in the hospital and eat the meals.  I was allowed to be discharged once my MTX reading was below 0.08.  Being a geeky engineer,  I used a spreadsheet to keep track of my results, and successfully argued one time against staying another overnight based on a predicted trend indicating I would be < 0.08 within the next 8 hours of my last test. 

Hope your consult goes ok

Dan

Victelio
Posts: 22
Joined: Feb 2013

Hey Dan

Just got discharged cleared within 60 hours great idea with the spreadsheet, I argued succesfully for a half time report so once I get to 1.2 or lower they will re test 12 hours later instead of 24. Well we understand our new normal and we need to keep the faith and stay on course. The consult was great and so far the salvage chemo has been pretty uneventful no side effects beside some extra hairs on the sink and pillow. Small price to pay for our health. June 9th is the MRI and if I respond like i know I will then start the process for ASCT.

Stay healthy

Vic

PS What conditioning chemo they use prior to your ASCT?

Victelio
Posts: 22
Joined: Feb 2013

Dan

I found about pre treatment chemo on your previous  post. So it was Busulfan/Thiotepa no Carmustine ?

 Vic

oilernick
Posts: 9
Joined: Aug 2012

Dear Everyone:

I just wanted to let you know that last week I had my latest brain scan and it remains perfectly clear. At this point - roughly 18 months post-ASCT - I feel perfectly fine. I am working full-time (making good money once again), coaching baseball and I’m jogging and doing Orange Theory Fitness (a/k/a circuit training) several times a week. What is most important, my daughter is finishing up her sophomore year in high school and my son is finishing up his seventh grade. If I can live long enough to see one or both of them get out of the house, then I will be extremely happy.

The reason that I share this information with you is two-fold: First, there is, in my mind, no doubting the fact that ASCT is the way to go for folks, like me, who have this disease. Second, if you find yourself with this disease do not allow yourself to get overwhelmed with fear. I can assure you that there is a light at the end of the tunnel and the resumption of a normal life is a very real possibility.

And, on that note, I got to get back to work...

OilerNick

Sten's picture
Sten
Posts: 79
Joined: Apr 2013

Nick,

Thank you very much for your encouraging good news!

I am glad that you are so well now.

Sten

 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network