Primary CNS Lymphoma

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?

oilernick said:

Dear Dan:
Thanks for writing
Dear Dan:

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

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

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

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

Regards,
OilerNick

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

oilernick said:

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

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

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

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

OilerNick

Dan_in_Canada said:

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

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

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

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

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

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

oilernick said:

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

Thanks for the prayers and warm sentiments.

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

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

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

Regards,
OilerNick

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

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

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

leprechaun2 said:

Hi Dan,
sorry to hear about

Hi Dan,

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

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

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

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

Let me know.

 

Hi to All

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

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

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

Victelio said:

Newly Diagnosed

Hi to All

 

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

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

 

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

 

 

Vic,

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

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

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

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

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

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

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

You, and your family, are in my prayers.

leprechaun2 said:

Wish we had done it first!

Vic,

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

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

 

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

 

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

 

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

 

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

 

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

 

You, and your family, are in my prayers.

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

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

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

Vic

Victelio said:

Hi Dan 
I was looking forward

Hi Dan 

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

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

God Bless and stay healthy

Vic

WHAT IS NED ?