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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!

oilernick
Posts: 8
Joined: Aug 2012

Seth:

I HIGHLY RECOMMEND that you do the stem cell transplant.

In my case, the high dose chemo was administered over three days in Octotober 2012 at the Mayo Clinic in Phoenix.  On those days, chemo was administered to me for several hours and it wasn't a whole lot different than what you already went through.  Was it pleasant?  No it was not.  Was it as bad as I envisioned it might be?  NOT AT ALL.  The three days came and went and with the exception of some nausia and a complete lack of appetite for a few weeks, it really wasn't that bad.  (Being holed-up in a hospital room for three weeks really stinks, however.)  I was just about your age when I did it and I think I bounced back from it all quite well.  I tried to stay active while in the hospital and I spent alot of time riding on the stationary bike.  I HIGHLY RECOMMEND that anyone going down this path do the same; it's as good for your attitude as it is your health.

It wasn't long after getting out of the hospital - a few days - that I started taking long walks, then - a few weeks later - little jogs.  I went back to work about a week after getting out of the hospital (but for a few weeks I went at night and on the weekends when noone was around).  My hair fell out after I returned home from the hospital but that's not a big deal for us guys.  I had a crewcut before I went into the hospital so that family and friends weren't stunned by my appearance.  My hair grew back in due course.

I am now about 15 months post ASCT and I feel great (but I'm overweight).  I ran 7 miles today and I plan to do it again tommorrow, before I watch football.  A few weeks ago I had a brain scan and it came back totally clear.  To be honest, I wasn't suprised.  I knew what I felt like when I was first diagnosed and, in particular, I remember my fingers tremoring and my blurred vision.  That feeling is completely gone at this point as is 99% of the tremoring.  Had my scans come back positive for a relapse I would have been greatly surprised.

As far as being worried about the high dose chemo, my doctor warned me (during his CYA conversation) that the ASCT could kill me but that 95% of the patients who go through the procedure live through it.  While a 1 in 20 chance of kicking the bucket is a far bigger risk than I cared to take, I asked my doctor whether it was worth the risk and he said it absolutely was.  In my opinion, he was absolutely correct.  No doubt about it.  Don't let your concern over the chemo and the whole ASCT process take your eye off the ball; getting rid of the cancer or, at a minimum, kicking the can down the road vis-a-vis a relapse.  I've got two kids, the younger one is now in 7th grade.  If I can live long enough to get him out of the house and on with his life, I will be complely satisfied with the outcome of my ASCT irrepective of what happens to me afterward.  After all, Seth, we are all on borrowed time.

Best of luck to you, Seth.  I look forward to hearing from you in the weeks, months and years to come.  In the meantime, you will be in my prayers this evening before I go to sleep.

Regards,

OilerNick

leprechaun2
Posts: 76
Joined: Jul 2011

Beautiful hearing from you Nick.  Well spoke.  Good to know you are doing so well!

Mary N.
Posts: 87
Joined: Jun 2013

I am celebrating a bit early.  Tomorrow it will be four years since I was diagnosed with Primary CNS Non-Hodgkin's Lynphoma -- and I am still here!! In the four years the treatments I have gotten are high dose MTX and Rituxan.  I have become more and more allergic to the Rituxan so now I am only getting High dose MTX every four months and I feel like I am doing really well.  Of course I have my next MRI in thee months and will begin to worry then, but for now, I seem to have no symptoms.  I was told that at 74 I am not a candidate for and stem cell things but for now I am doing so well.  I must say that I am blessed and certainly appreciate life  differently than I did before this snarky disease.  I hope that all of you have a wonderful Happy and Healthy New Year.

 

 

Sten's picture
Sten
Posts: 67
Joined: Apr 2013

And my best wishes for the future! Posts like yours can give hope to the readers.

Sten

 

SethfromMaryland
Posts: 3
Joined: Dec 2013

OilerNick,

I know it's been a long time since you sent me informaiton about the ACST. I really appreciate your recommendation. At the time, I was just in the middle of my 1 year of methotrexate and rituxam therapy and was searching for the next steps. I met with the Stem Cell transplant expert at Johns Hopkins and he recommended that I do not go in for ACST at this time. So far, things have been going well for me. I'm over 1 year out from diagnosis and almost 1 year out from the official notificaiton of being in remission. I'm still going in for bi-monthly ritxam infusions and MRI. Hopefully, the next scan will continue to show No Evidence of Disease. I also recently completed the Ride to Conquer Cancer (143 miles in Maryland) which, hopefully, is a good sign. 

Hope you and everyone else are doing well.

Thanks,

Seth

Mary N.
Posts: 87
Joined: Jun 2013

Hi Sethfrom Maryland - I just read you post.  It has now been almost five years since I was diagnosed with primary central nervous system non-hodgkins and the only treatment that I've gotten is the high dose MTX and Rituxan.  My doc thinks we will no longer give the MTX and the last time I had any chemo was in May of 2014.  So far all MRI's have not changed and I seem to be doing fine.  I was just posting because it seems that most of us end up with a stem cell transplant and I won't be able to have one if it reoccures so I'm always interested in those who also haven't had one.  So glad you are doing well!

Mary

Victelio
Posts: 22
Joined: Feb 2013

WHAT IS NED ?

leprechaun2
Posts: 76
Joined: Jul 2011

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

Sorry for throwing you,

 

SusanEmma
Posts: 3
Joined: Apr 2013

Hello Vic and others!

 

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

 

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

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

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

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

We are thrilled!

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

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

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

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi SusanEmma,

 

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

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

 

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

Dan

leprechaun2
Posts: 76
Joined: Jul 2011

Hi Dan!

 

Good to see you here!  How are you?

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

Keep on fighting!

 

Victelio
Posts: 22
Joined: Feb 2013

Hi Leprechaun

 

You and your husband will be on my thoughts Friday

 

Vic

leprechaun2
Posts: 76
Joined: Jul 2011

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

Still praying for your transplant!

Mary N.
Posts: 87
Joined: Jun 2013

hi Dan, I was originally diagnosed with PCNS NHL in Jan of 2013 and was 70 at the time.  It came as a complete surprise as the only thing noticed was my right eye blinking white/black.  I had an eye exam nothing.  about two weeks later I was going to the hairdresser when the blinking became frantic and i became very weak, walked in an asked for her to call an ambulance and was rushed to Fresno where I had a seizure in the emergency room.

 They found two tumors deep in the left side of my brain.l  Since then, I have only been treated with high dose MTX and rituxan.  At first I had it every 6 weeks and after the first time my tumors shrunk by half. One tumor was gone in about 4 months and the other was larger and more dense and it was gone leaving a bit of brain damage.  Nothing has become active since about 3 years ago.

 I have monthly Rituxan and every four months have MTX and a MRI.  I was allowed to drive after 6 months and went back to work as a counselor at school in 9 months.  I decided I would again retire this June because work included about a 2 1/2 hour commute round trip.  i am delighted to hear of other successful treatments and individuals who are still surviving.  I have been told that the stats are not good for someone my age.

 Is there a age barrier about the stem cell transplants?  My doc has never mentioned it as a way to treat this and it may be that he thinks I physically couldn't handle it.  I don't know but will talk with him this month when I go in for the Rituxan.  Thanks for this thread.

 

Mary

leprechaun2
Posts: 76
Joined: Jul 2011

Good luck Mary!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Mary,  I have only just read your message ( as a side note, I find this forum somewhat annoying when it doesn't present posts in chronological order)

Sorry to hear of your diagnosis. It sounds like you are currently continuing to do well in that the tumours are responding to the MTX and rituxan - a very good sign, assuming you are handing the treatment so far.  

I have seen some study info that said the patient age was limited to 65 yrs,  though I thought there were some other stem cell protocols that can be used on older patients, as they are not as severe.

Interested to hear what your doctor thinks

Dan

 

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

Hi Mary,

i was reading your post and happy tomhear how well you did and hope continuing good health. Its interesting tomhear the different protocols for the same disease. My husband started with rituxan following week MTX and he is now getting his 3rd round of MTX. Round 2 he had a half day of nausea and vomiting then felt better. I see you get MTX monthly only. Imwould think this is easier on the body. We are being treated in Israel where my husband had a seizure while on business. he is unable to fly so we must remain here. Doctors have not mentioned any further treatment for stem cells. He will have an MRI and I pray his tumor is gone!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

duplicate

Victelio
Posts: 22
Joined: Feb 2013

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

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

 

Dan_in_Canada
Posts: 22
Joined: Apr 2012

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

 

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

Dan

Victelio
Posts: 22
Joined: Feb 2013

Wink

Hi Dan and Susan Emma

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

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

Vic

splatz
Posts: 2
Joined: Apr 2013

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

leprechaun2
Posts: 76
Joined: Jul 2011

Wonderful news!

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

Donnaann314
Posts: 3
Joined: May 2013

Such wonderful news!!

 

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

 

thanks so much for your feeback

Mary N.
Posts: 87
Joined: Jun 2013

ned means no evidence of disease.  Boy, we have to learn alot of acronyms when we are here.  I asked the same thing!

Sten's picture
Sten
Posts: 67
Joined: Apr 2013

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

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

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Sten,

 

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

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

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

Dan

Sten's picture
Sten
Posts: 67
Joined: Apr 2013

Dan,

Your contributions are most valuable!

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

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

 

Best regards,

Sten

 

 

dat1000
Posts: 7
Joined: May 2013

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

 

dat1000
Posts: 7
Joined: May 2013

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

 

dat1000
Posts: 7
Joined: May 2013

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

 

leprechaun2
Posts: 76
Joined: Jul 2011

Hi dat.  My husband's chemo was also stopped due to damage to his lungs casued by methotrexate after 4 rounds.  His tumors at that point were 80% diminished.  the docs would not concider giving him a fifth round. 

They switched to cytarabene but a new tumor grew in a different part of his brain during it so they immediately began radiation.  It worked but did a lot of damage.  Get as many calories into him while you can. It toook away his taste buds and he was really too tired to eat.  I made protein shakes with whole milk, bananas, wheat germ and haagen daz ice cream, chocolate mocha chip.  He still lost 50 lbs!   

I have a few other ideas if you are interested.  I haven't heard anything about saffron red flower, sorry. 

You can get through this and although it is rough, cns lymphpma can be beaten.  Good luck.

dat1000
Posts: 7
Joined: May 2013

Hi,

 

Thanks for your reply.  We are having a difficult time right now since my dad has gone into severe depression and seems to have lost his will. He has gone through so much and to now give up is so disheartening.  I will keep post again.

Mary N.
Posts: 87
Joined: Jun 2013

I was diagnosed with CNS lymphoma 3 1/2 years ago at age 70.  The first time they gave me the high dose MTX and Rituxan,I almost died and my kidneys shut down  Fortunately they started working again and by the time 6 weeks passed the tumors had shrunk by 50 percent so the doc and I decided to try again.  He had told me that we would try something else but I figured why not try again if they had shrunk so much. This time and every time since then my phi has to be at 8.5 before they start the chemo and they maintain it at that phi until I leave the hospital.  This has made a big difference for me.  I don't have any idea about the heart problem as I did not develop any.  I have not tried saffron red flower but in my diet I use many spices.  I have been following a diet that includes many greens and keep my use of protein under control as proteins are very acidic.  Between treatments I eat more protein but for about two weeks before the high dose MYX I limit protein and make myself as alcoholine as possible before I go into the hospital.  I have monthly Rituxan and am not as careful until the 4 month MTX.  

I encourage you to remain positive - this thing can be beaten!  I think diet is important and would add spices and other things that may be of some benefit just nutritionally.  I also believe that we must remain as active physically as we can .  This may be difficult because we end up feeling exhausted.

They also thought that I had had a stroke until the MRI with contrast.

Not sure about your beliefs but I personally feel that prayer is important and I feel that much of my good health is because of the many prayers were offered up for me.  I will keep you and your father in my prayers and hope that the doctors find and appropriate course of treatment for your dad.  Many hugs!! Don't give up.

dat1000
Posts: 7
Joined: May 2013

Thanks Mary for the reply.  We have been staying positive but it seems like he is starting to lose his will.  He has stopped eating and is back in the hospital. The CT scan is showing no new signs of the tumor returning.  He has been through so much and seems to have just come to the point where he is "done". He has had incontinence since having the radiation therapy, His dexamethasone was decreased 50% and three days later his loss of appetite and severe depression started. His dexamethasone has been increased and it's been about a week. He still has minimal appetite. He has been now started on a antidepressant. The dexamethasone withdrawl was horrible. He has lost interest in all his daily activites. Grandkids can't even put a sparkle in his day. It is so difficult to see.  Will continue to update.

 

Thanks

Mary N.
Posts: 87
Joined: Jun 2013

Hi dat1000,

How is your dad doing now?  I hope that the antidepressant helps but most have at least several weeks before they build up in the blood stream.  It must be hard to see his disinterest even in grand children.  I can understand the feeling of being done.  We do go through a lot with the side effects of everything they do.  Best wishes for you, your family and your dad.  Blessings.

dat1000
Posts: 7
Joined: May 2013

Hi Mary,

My dad was put on anti-depressants that have stimulated his appetite. They piggy backed the anti-depressasnts in order to increase the effect. It was a struggle to have them keep him in the hospital as the general feeling seems to be that you have a lousy diagnosis so why bother. We pushed to extend his hospital stay so that he could see a geriatric psych. The doctor was great. My dad is home now but he is very weak. He didn't eat for almost three weeks so that is to be expected. The doctors here don't know much about this tumor and they acknowledge that. They think the radiation therapy may have possibly affected the area of the brain that is responsible for motivation. This is why he lost his motivation to eat etc. The antidepressants have helped with his depression. We currently have home care coming in to help with getting him his meals and getting him to the bathroom. It's a tough diagnosis but the good news is so far no signs of return of the tumor on his CT scan. Take Care.

Mary N.
Posts: 87
Joined: Jun 2013

Hi dat.   I am now 73 years old and have been taking high dose MTX and Rituxan since tumors in brain were discovered in Jan 2010.  The first time I had a lot of trouble with kidneys etd.  We were not going to use it again but in 6 weeks the tumors had shrunk by half.  So my doc changed the dprotocal for the high dose MTX and didn't even start it until I had a ph of 8.5 which is very alcoholin and he continued it through the leucavorian and when I was back home.  I continue to take sodium bi-carb for about 2 weeks before hospitalization and they don't give me the high dose stuff until I have a ph over 8.  It seems to have made a huge difference.  I am still taking the chemo for over three years.  I hope other doc look to find a way to make it easier for those of us who are older.  I personally have rulled out radiation but that is just me and I wouldn't advise for or against for anyone else.  I hope that your dad is doing well and you continue to try to find the best treatment for him.  Blessings     Mary

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi,  just checking in after my 1 year anniversary from ASCT.  I am doing well with very little symptoms left from the ordeal.

My Lhermittes syndrome went away after about 9 months, but I still occasionally get some numbness in my left hand and foot,  particularly when my immune system is fighting something.   No seizures since December, so am back full time at work and driving. 1 yr MRI was clear.

I spoke to my oncologist,  he confirmed they haven't seen any late year relapses with the same protocol ( some patients 15 yrs out), so that was encouraging.

 Hope everyone else is faring well as well,  as noted PCNSL can be beaten!

 

Sten's picture
Sten
Posts: 67
Joined: Apr 2013

I wish you good health in the future!

It is good to see that this illness can be overcome and won over.

In less than two months I will have my own 1 year ASCT anniversary, and I am feeling OK and getting stronger all the time.

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Thanks Sten,

I just finally saw your earlier posts on the first page of this thread , I didn't realize that you also have had an ASCT.  How did it go?  Did you also have  L'Hermitte's sign and has it also dissapeared?

 

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Thanks Sten,

I just finally saw your earlier posts on the first page of this thread , I didn't realize that you also have had an ASCT.  How did it go?  Did you also have  L'Hermitte's sign and has it also dissapeared?

 

Sten's picture
Sten
Posts: 67
Joined: Apr 2013

Hi Dan,

My ASCT went OK. It took a long time, though, to recover after the hi-dose chemo that preceded the ASCT. I still have a certain numbness in my feet, but this is slowly getting better. I have taken Temodar four days every month for six months now, and the plan is to continue for 1 1/2 more years. Temodar makes me tired and slightly nauseous, but it is a good for reducing the risk of a relapse. In summary, I feel fine and am getting stronger all the time. I was recently in Norway with my wife, and we walked in the mountains there for a week, and I am already a bit stronger and have more stamina than her. Driving to Norway in two days went fine.

leprechaun2
Posts: 76
Joined: Jul 2011

Congratulations Dan, that is great!

We've just had our three-year anniversary!

(No cancer, thank God, just dealing with fluid/shunt issues)

Michbrwn's picture
Michbrwn
Posts: 2
Joined: Jul 2013

I'm the mom of 14 yo teenager diagnosed May 24, 2013 with large B-cell primary CNSlymphoma. After reading this thread, I can better appreciate the what-felt-like-long-time between his May 14th initial admission for a 2nd MRI to the craniotomy 1 week later on May 21st to the pathologist analyzing the tissue, then phone call on May 24th to start high dose steroids, chemo, chest port placement & by the way, we have to go back in 1 wk after the craniotomy to put an Ommaya reservoir into his skull, so he can get chemo directly into his cerebrospinal fluid (rather than a lumbar puncture every 2 days while inpatient for the chemo rounds). I remember the tumor specialist saying that they couldn't just treat it with steroids because they needed to confirm without doubt what was being treated because if it was Germ cell type, that the treatment would be significantly different. I remember Sat, May 11th, the day before Mother's Day, him saying "Mom, this eye twitching is really bothering me" after he returned from playing in an 8 am travel soccer league game. I looked in his eyes & saw the nystagmus, or involuntary eye twitching when he would look to extremes of down & left. I remember the urgent visit later that morning with the pediatrician offering a stat MRI at a local hospital to be scheduled for Monday or to go directly to the ER - of course, my 13 yo would choose the 1st (who would want to wait in the ER for eye twitching?)! It WAS SO bad for him between the craniotomy through the 1st round (so many unknowns on how he would do) until he got to go home on his 14th birthday June 4th, but he's doing SO well tolerating his 2nd round & this 3rd round (we're here admitted right now for 6 days) without nauseau nor vomiting - Praise God! He's gone swimming at local lakes & pools between chemo & leans on The Lord for His strength. I'm still praying that he continues to do well, but I'm appreciating ALL of the wisdom in your posts. 

His blood count numbers have been awesome so he's had a thumbs up on the lakes - pools - Cedar Point Amusement Park! I couldn't believe the Cedar Point one when he proposed that one to them - they said that it was mainly dependent on his platelet count so that he doesn't bruise from the roller coaster belts/things that strap you in & of course, his ANC or neutrophil count to confirm he's not neutropenic.  I've been absolutely amazed at his blood count numbers & the ability of his body to bounce back & all I can do is pray that it keeps going. He missed his 8th grade Chicago trip that he was SOO looking forward to, and with the docs not cutting off his idea of a Cedar Point trip, I guess I will support him if he can. I can't tolerate those rides - we will see. His case is one of 14 cases worldwide we've been told by UM Mott Hospital because of his age & it being large B-cell in the brain only. Do all of you having this same diagnosis have Ommaya Reservoirs, too? Those chemo infusions are the only ones that make him slightly nauseous (despite the Zofran), but he sleeps immediately after it's done, then he's back to eating & moving around normally.

 

Mary N.
Posts: 87
Joined: Jun 2013

hi, I don't have the ressivior but understand that it gets more of the chemo directly into the brain then by IV which is how I get it.  Your son's age is a big factor and should be a lot of help for him.  Best wishes and hope the treatments work well.  Blessings to you both.  Mary

oilernick
Posts: 8
Joined: Aug 2012

Dan:

A belated happy birthday!  Like you, "I am doing well with very little symptoms left from the ordeal."

On a related point, I wanted to let you (and, more importantly others) know that I experienced the same exact tingling sensation post-ASCT that you wrote about.  To be honest, I found it extremely disconcerting at first as I thought the lymphoma must have spread to my spine.  I reluctantly told my wife about my new symptoms and she told me about your posting addressing this same exact issue.  I can't tell you how relieved I was to read how you had experienced exactly what I was feeling.  Nevertheless, I scheduled an appointment with my oncologist and he confirmed that it wasn't cancer.  He wasn't sure whether it was a bulging disk or the Lhermittes syndrome you mention above.  As the last thing that I was going to do was to go under the knife for a bulging disk - right at the beginning of Little League season nonetheless - I figured I would stick it out and see if it went away.  Over a few months it did slowly go away.  Sounds like this is a common discomfort associated with ASTC.

Take care and stay in touch...

OilerNick

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.

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

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