Primary CNS Lymphoma

dat1000

Father has primary CNS lymphoma

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

 

leprechaun2

dat1000 said:

Father has primary CNS lymphoma

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

 

Prayers for you and your dad

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.

Sten

Donnaann314 said:

Sten:
 
Did you go through

Sten:

 

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

 

thanks

 

 

Donnaann314: I did not go through

Donnaann314:

Sorry for my late answer - I saw your question only today.

I did not go through radiation. My doctors regard radiation as the last resort if everything else fails, because of its effect of memory loss and the risk for dementia which increases with age (I am 69 years old).

The best treatment is probably ASCT (autologous stem cell transplant), which I had.

I wish you and your partner the best of luck.

 

Sten

Sten

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?

I have L'Hermitte's sign and low blood count

Hi Dan,

I got my hi-dose BEAM chemo and ASCT in August 2012. 

I got that tingling feeling in my feet a few months ago, and it is still there.

I am on monthly temodar treatment now, and so my blood count goes down a bit, especially for thrombocytes (platelets).

 

Dan_in_Canada

1st Re-birthday

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

Dan_in_Canada said:

1st Re-birthday

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!

 

Congratulations, Dan!

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

Sten said:

Congratulations, Dan!

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.

Thanks Sten

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

Sten said:

Congratulations, Dan!

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.

Thanks Sten

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

Dan_in_Canada said:

Thanks Sten

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?

 

I am fine

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.

Mary N.

Dan_in_Canada said:

Great to hear from you

Hi SusanEmma,

 

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

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

 

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

Dan

My progress

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

Mary N. said:

My progress

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

Good luck Mary!

Good luck Mary!

leprechaun2

Dan_in_Canada said:

1st Re-birthday

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!

 

Congratulations Dan, that is

Congratulations Dan, that is great!

We've just had our three-year anniversary!

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

Michbrwn

leprechaun2 said:

Congratulations Dan, that is

Congratulations Dan, that is great!

We've just had our three-year anniversary!

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

Any Pediatric primary CNS large B- cell lymphoma cases out there

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.

dat1000 said:

Father has primary CNS lymphoma

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

 

Hi dat1000

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.

MarinaL

I need help.

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.

MarinaL

I need help.

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

MarinaL said:

I need help.

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.

Keep up your spirits and go on fighting!

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. 

leprechaun2

MarinaL said:

I need help.

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.

Marina,
My husband was

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

Mary N. said:

My progress

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

Sorry I missed your post

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

 

Dan_in_Canada

MarinaL said:

I need help.

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.

Don't despair

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