Primary CNS Lymphoma

Sten said:

Experience from stem cell transplant

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

 

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

SethfromMaryland said:

New to the Group - PCNS Diagnosed - Curious about Stem Cell

OilerNick,

Thanks for the information. I'm 42, was diagnosed in July with B-Cell CNS lymphoma, had the tumor removed, went through 8 rounds of Methotrexate with Rituxam and am now in remission. We are currently trying to figure out if I should also have stem cell transplant. I'm a bit worried about the high dose chemo that's used for the stem cell transplant and how it all works. If you're back on line at all, feel free to share your experience.

thanks,

Seth

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

oilernick said:

Curious about Stem Cell

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

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.

SethfromMaryland said:

Stem Cell Transplant

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

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

Dan_in_Canada said:

Hello!

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

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

Sten said:

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 at whatmpoint was asct offered to you? After all the chemo sessions? Were you also taking Keppra? I see a lot of mood swings in my husband and it worries me! Not sure if its from, chemo, meds or just knowing he has a tumor. Any thoughts are appreciated.

Younique said:

WBRT?

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.

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 said:

Please excuse the multiple

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

 

Vic

 

 

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 said:

I forgot

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.

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..?

Younique said:

Waiting to hear...

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

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