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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!

subito
Posts: 4
Joined: Dec 2007

Hi, my husband had it, and you're right, it's very rare. If you read about the prognosis on the Internet, you'll drive yourself crazy. Some say it's nearly curable and others have a much less positive prognosis, which may be one reason you're having a hard time getting a straight answer from your doctor. S/he really doesn't know. Everyone responds differently. That said, from what I know, the younger you are the better so you've got that on your side. And the fact that you've responded well to MTX is excellent.

Make sure you go to a hospital where doctors have seen this illness a lot. Teaching hospitals are usually good.

Look for articles written by Lauren Abrey M.D. and Lisa DeAngelis M.D. They're at Sloan Kettering in NYC and know a lot about the illness.

I'm in Boston and found great doctors at MGH who knew the illness well.

All the best,
Ruth

leprechaun2
Posts: 76
Joined: Jul 2011

my husband was diagnosed 6/08, age 52. He had 4 cycles of HD Mtx with procarbazine every other treatment. Problems with lungs stopped with 80% of the tumors gone! While on cytarabene,another tumor grew. Whole brain radiation was next, then rituxan to keep it at bay. 8 months, another tumor! Methotrexate with different chemos worked and now, thanks to an autologous stem cell transplant, he is clean, for 16 months!

He has lost some ability to concentrate, his short term memory is greatly reduced and he has retired on disability but he is still the man I love. Speech therapy has helped rewire his brain, a social worker helps us to navigate the frustrations which come to both of us.

Sloan kettering is the best! Dr. Abrey was his doc but she has moved. Dr. Kaley and Dr. O'Muro are wonderful. Dr. Sauter is the hemotologist who has cared for him throughout the transplant and I could not ask for a better dr.

Good luck. This disease is tough but it can be beaten. I will be happy to answer any questions you have along the way! God bless you and your family and friends!

katiegro
Posts: 3
Joined: Sep 2011

My mom, 67 diagnosed with PCNS on June 24. She is up to her 4th chemo treatment. She too is being treated by Dr. Omura and Dr Sauter is handling the transplant, if she gets that far. Next week she is "harvesting" and we are nervous. What are the next steps? What was the transplant like? Any info from the patient's side would be helpful.

leprechaun2
Posts: 76
Joined: Jul 2011

G had his transplant july 7, last year. His original diagnosis was 6/08. It came back multiple times and last spring, Dr. OMuro told us that if we didn't do the transplant at that time, he might not be able to do it.

Because of all the prior treatments he had, he had a difficult time harvesting but the nurses in the bloodbank were wonderful and he was comfortable throughout.

We went to a program about the process at Sloan and they answered all our questions. Dr. Sauter is the best! G was in the unit for 24 days and the recovery took longer than expected due to his prior treatments but I would do it again in a heartbeat!

I will be happy to answer any and all of your questions...I will check back here regularly. And if you know how I can privately reach you, I will give you my cell and email. Good luck and may God bless you and your mom!

katiegro
Posts: 3
Joined: Sep 2011

my email is katiegro@mac.com

packvic00
Posts: 1
Joined: Aug 2011

It is good to see some updated discussion on PCNS lymphoma.
Although the case is VASTLY different from yours, ziegs22, my 73 year-old mother was diagnosed with it in 2/11 after fighting vertigo, vomiting and unsteadiness for almost 10 months. Many specialists were seen and it took several falls and an ER visit to finally find the tumor. Everything I have read online is very negative in terms of prognosis, part of the reason I am sharing at this stage.
Her primary lesion is in the cerebellum. She is in good health otherwise. After undergoing 5 rounds of methotrexate in-patient, she also had radiation just aimed at the cerebellum in an effort to reduce neuro-cognitive decline associated with WBRT in the elderly.
Again, these stats don't respond to your question due to age difference, but maybe helpful to others who look online seeking some answers. Her oncologist told us the following for long term prognosis:
"Prognosis is variable, but for someone her age and in otherwise good medical condition, would expect about 80% alive in 2 years, 50% alive in 4 years, 30% alive in 6 years. And remember people in the 70s and 80s can die from other things too. Regarding remissions, I would estimate about 60-70% chance of achieving remission and about half of those patient maintain remission long term (3-5 years or more). These figures are all specific to PCNSL. If relapse occurs, there are treatment options but I would reserve that discussion for the setting of a recurrence."
She is doing quite well, has resumed driving and has been officially told she is in remission. Her kidneys did suffer a bit as a result of the chemo, but seem to have stablized. We are optimistic. I spoke with a colleague whose 79 year old mother had the same diagnosis and she barely made it through the chemo before she developed pneumonia and died. It is so variable. I will try to update this as we do expect more developments, but hope she can fight off recurrence.

gdpawel's picture
gdpawel
Posts: 549
Joined: May 2001

What I found out from the knowledgeable physicians at Penn State Hershey Medical Center was that the worse form of this disease is from lung and breast cancer (a high morbidity rate). The best prognosis of it is from lymphoma cancer. As far as from being from ovarian cancer, because at one time it was rare, no one really knew whether the results in treating it would be similar to lung/breast cancer or lymphoma cancer. My wife had it from ovarian cancer and a relative had it from lung cancer. The best data I ever could get was that the lymphoma type had at least a 75% chance of remission.

shmuel
Posts: 1
Joined: Oct 2011

The information i have read is that the younger you are the better the prognosis. I am twice your age and have just been diagnosed with month with the same, approx mass 1/4 the size of the brain.

here is some information:
Long-term survival in primary CNS lymphoma

LE Abrey, LM DeAngelis and J Yahalom
Department of Neurology, Memorial Sloan-Kettering Cancer Center, New York, NY 10021, USA.

PURPOSE: We have previously reported on 31 patients with primary CNS lymphoma (PCNSL) treated between 1986 and 1992 with methotrexate (MTX), cranial radiotherapy (RT), and high-dose cytarabine who remained free of disease longer than historical controls. PATIENTS AND METHODS: We performed a follow-up analysis of our original cohort and now report their long-term survival and late treatment-related toxicity. RESULTS: The median cause-specific survival was 42 months, with a five-year survival of 22.3% compared with 3% to 4% in historical controls treated with RT alone. Age less than 50 years at diagnosis was a significant prognostic factor for survival (P = .01). Median disease-free survival was 40.3 months; 15 patients relapsed, all but one in the CNS. Late treatment-related toxicity was observed in nearly one third of patients and those more than 60 years of age were at substantially higher risk (P < .0001). CONCLUSION: Combined modality therapy for PCNSL has improved survival, but relapse is common and late neurologic toxicity is a significant complication. Although this approach is highly effective for younger patients, efficacious but less neurotoxic regimens need to be developed for older patients. From the follow ing link there is a 12-36 month after treatment; but some have survived much longer. you may want to google Primary CNS Lymphoma survivors for other links and sites that tell us what the doctors refrain to say. However, in presenting this information of my oncologist they confirm the prognosis. I don't think they want to cloud the issue of treatments with a short term prognosis. I wish you the best success in your life. My thoughts that are days are numbered like a star, and the antidote for our days are within us. Scientifically the days appear to be shortened due to this cancer; however, the final chapter of each of us is yet to be written.

I found this overview of interest. http://www.medscape.com/viewarticle/550516_6
It seems to support the usual cases of CNS. I plan on beating the odds as I am asserting my Life Force to rise in me to be the antidote. I believe that I am of Light, and that the Light of Yæhh is the Source of Life in me and in all things.
Shmuel

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi ziegs22

I was very interested in your post from last year, as my current situation is very similar to what you wrote. I am a healthy 44 year old male recently diagnosed with primary CNS lymphoma. I have had 4 high dose methotrexate doses with alternating procarbazine & 1 dose of vincristine, currently getting ritixumab and cytarabine in preparation for a autologous stem cell transplant. My diagnosis started with a seizure, then removal of a tumour from my front temporal lobe. Like you, I seemed to respond well to methotrexate and haven't had the cancer spread anywhere else, and am feeling fairly normal. At the very start of my treatment, my oncologist had an initial prognosis of 40% long term cure rate, but I've seen more recent articles that indicate about 70% cure with HD-MXT followed by busulfan, thiopeta and the stem cell recovery. Also, I observed from past studies that if you are healthy after 1 year post treatment, and especially 3 years after treatment, you are likely fully cured. One thing I've seen is that it's best if you can avoid whole brain radiation as there are significant long term neuro effects.
Curious to know how your treatment went and hopefully you are doing well. Thanks!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

I wanted to share some of the information I have found on PCNS Lymphoma, as well as give my perspective on my treatment

Prognosis

As someone commented in a post above, there is a lot of different PCNSL prognosis information on the internet. However, I notice that there has been significant progress in the treatment of PCNSL in the last 10 years, so I found I could get much more positive prognosis information if I limited my search to articles written in the past 2 years or so. It looks like the most promising treatment that clinics are working with is to use an “induction” phase of HD-MTX, then proceed into an autologous stem cell transplant protocol. I am not a doctor, but this makes some layman’s sense to me, as HD-MTX (or radiation) attacks any cancer that is residing in the CNS, but the stem cell transplant restarts the bone marrow, so that there is less chance of producing any more malignant “B” cells (ultimately the source of the lymphoma). Speaking of radiation, trials have shown there is limited benefit to WBRT in increasing cure rates above the chemo protocol with ACST, but with significant risk of neuro problems later on, so it would seem WBRT is falling out of the preferred treatment protocol

I was treated in Calgary, Alberta, Canada where they have been active proponents of the ACST protocol. The Alberta Health services has published their PCNSL protocol with other information on the internet, here is the link:

http://www.albertahealthservices.ca/hp/if-hp-cancer-guide-lyhe002-lymphoma.pdf (see pages 18 and 19 for info on PCNSL)

Other sites with more promising prognosis information

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

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

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

Overall 5 year survival rates have increased from <20% in late 1990’s to 60-80% now. Factors such as age and health performance are obviously factors in the survival rate. The ACST is very hard on the body (I can tell from experience), so it may be difficult to tolerate in older or less healthy patients, but I think there are some protocols that are a little less severe.

My Treatment

I think on any cancer site/brochure it will tell you that everyone responds differently to chemotherapy, but for reference, I can share how my treatment went, since I had some questions on how it would go at the beginning myself.

My first HD-MTX treatment went by with limited side effects, so I was wondering, am I going to be lucky and have it easy the whole way or is it going to get harder? Well, my own personal experience was that each subsequent HD-MTX (with or without procarbazine or vincristine) was more difficult, with more nausea and other side effects.

I was warned ahead of time that the busulfan/thiotepa treatment after collecting my stem cells was going to be rough, and this definitely proved to be the case. A large percentage of patients (about 85%) develop mucositis with these drugs, and I fit in with the majority. The throat pain I developed with the mucositis was the worst pain I have ever had in my life, and none of the usual sore throat remedies (eg, ice, popsicles, gargling) were effective at reducing the pain. I couldn’t eat or drink for several days and overall have lost about 25 lbs since I started the treatment.
I have since been released from the hospital and am eating and drinking again, but have no appetite or taste buds, so eating seems like a real chore. That said, about 1 week out of the hospital, I am getting slowly better and recovering some of my energy. What also keeps me going is knowing that I am in remission, and that eventually this will pass and I can get on with a normal life.

If you google “primary cns lymphoma” survivors, you can also find stories of other survivors who have been through WBRT and/or HD-MXT, but I didn’t find many references to survivors who have been through ACST.

I plan to periodically check this site and provide updates on my own situation, so if anyone would like to ask a question about my treatment , please post a comment and I will eventually respond

leprechaun2
Posts: 76
Joined: Jul 2011

Hi.
you are correct, the Hi-Dose chemo was tough. Hub had lost his tastebuds from the WBRT (he grew a new tumor while on the cytarabene) and he lost them again with the Stem Cell Transplant. I was able to slow some of his weight loss with shakes made from coffee HagenDaz ice cream, wheat germ, carnation instant breakfast and a banana. Thank God, the coffee-chocolate flavors came through somewhat. After about 6 months, flavors have returned. I should also let you know that his favorite beer, a dark German, was the first thing he could taste well!

He is coming up on 2 yrs this July 7. His scans have been clean! I would recommend this treatment to anyone.

That said, the effects of the WBRT are all present, difficulty with bathroom, memory, concentration and walking. These are daily challenges for the both of us. I wish we could have avoided the high doses of radiation he needed. He had 25 days of 40 Gly (?) in March 09, followed by Rituxan treatments monthly. It took 8 months for the lymphoma to return. Only to high dose chemo followed by the autologous stem cell transplant has kept him cancer-free and in May we went to Italy with our family.

It was a beautiful trip and a way to build memories with the kids that were not connected to treatment. The many pics help hub remember it.

I am grateful for the time this treament has given us and I hope it brings you good news as well.

BTW, hub was diagnosed at 53 and is now 57.

If I can help with any info or support, please don't hesitate to ask!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Thanks for posting a reply, it's good to hear about a survivor who has gone through a similar treatment, and I am glad to hear that he is continuing to stay in remission.

You're right, chocolate already comes through for taste, yesterday I tried my first beer since my diagnosis and it tasted good! I was slightly worried I would be an extremely cheap drunk after treatment, but one beer didn't knock me over.

I realize I am still fairly early after my treatment (1.5 months after stem cell transplant), but I feel a bit impatient when I have days where I don't have much energy or appetite... how long did it take before your husband felt completely "normal" after the stem cell transplant?

I was also curious about relapse and where tumours can reoccur ... I've heard it would be rare for the cancer to spread outside the CNS, but did the tumour reoccur in about the same location as the original diagnosis? Were there any symptoms that a new tumour had grown, or was it picked up on a scan?

Thanks again,
D

leprechaun2
Posts: 76
Joined: Jul 2011

Hi Dan,
It took about 6 months for Hub to feel like his old self. But in that time he was never sick - just tired or weak. Also, the heat hit him like it never did before, he would get light-headed and need to sit when it was above 85. We ended up getting a walker with a seat to make things easier.

He has been getting his vaccinations now for over a year and we are coming down the home stretch. He has been having some symptoms since last fall, like confusion and difficulty walking, as well as some incontinence which the docs had warned us would happen from the whole brain radiation he had. Things were getting bad and finally, on July 5, they gave him a shunt from his brain to abdomen, all internal, and all his symtoms have improved!

He is his old charming self. I am so happy he is back! I hope you do not have to deal with this in the future but it is good to know there is a treatment.

As far as the tumors, his were all in the brain, in diferent parts of it. He had 2 at diagnosis and the 3rd was detected by MRI during treatment. The 4th had some of the confusion of the first set but it was minimal. It was found at his regularly scheduled bi-monthly MRI.

He has just reached his Second Anniversary, July 7, and is still tumor free!!!!!!! I hope the same for you Dan.

Keep in touch,
ann

Dan_in_Canada
Posts: 22
Joined: Apr 2012

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?

leprechaun2
Posts: 76
Joined: Jul 2011

Hi Dan
Although I am not familiar with the syndrome you are experiencing, I can relate to the changing blood counts.
Hubs took over a year to stay in the normal range. The doc said it was due to all his prior treatments.
I can tell you that the majority of his side-effects lasted less than a year.
He is still sensitive to meds which can affect his WBC and his platelets so we do watch when be takes a new med.
He slso still tires easily and is weakened by the heat. Thankfully these we can deal with.
I pray yours pass quickly as most of hid did.

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Thanks again for the info on the blood counts, and good to hear your husband isn't having any serious lasting side effects.

Sten's picture
Sten
Posts: 74
Joined: Apr 2013

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).

 

Sten's picture
Sten
Posts: 74
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.

Donnaann314
Posts: 3
Joined: May 2013

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

 

 

Sten's picture
Sten
Posts: 74
Joined: Apr 2013

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

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

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.

Smile7
Posts: 2
Joined: Jul 2012

Hi Dan. I hope you are doing well. I just started reading your posts. My father in law was diagnosed with Primary CNS Lymphoma in November 2008(age 62). He was officially told that he was clean about June 2009. He has since taken 11 montly consolidation rounds of MTX. And continued with maintenance rounds of MTX every 3 months. We were just told that the maintenance rounds would stop as they have no positive date on it. He was given an option of ASCT or do nothing with MRI done every 3 months. We have gotten advice recommending both of these options and are at a dilemma in choosing one. I was wondering if in doing your research you came up with anything that can shed some light on our situation. You did mention that you had seen studies or posts that mentioned 3 years clean would be considered a "cure". I'd be interested if you can somehow direct me to the source of that. Any information you can give us would be much helpful. Wishing you the best along with all that are reading this posting. Thanks.

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi,

For full disclosure, since I am not a doctor, I should preface my comments by saying that the 3 year “cure” was my interpretation of information presented in the paper below, and I have not seen any research which formally declares this statement.

A link is included below to an abstract presented at a 2010 American Hematology conference. My understanding is that two centers in Alberta treated PCNSL differently for about 10 years; the one in Calgary started using TBC (thiotepa, busulfan and cyclophosphamide)+ACST, while the other continued with the traditional treatment of MXT (with or without radiation). This provided a good opportunity to directly compare the two treatments. A chart at the bottom of the abstract shows a chart with overall survival over time comparing the two treatments.

https://ash.confex.com/ash/2010/webprogram/Paper33500.html

My interpretation was that for patients treated with TBC/ASCT was that survival flattens out at about 36 months, so if a patient makes it past this point after TBC/ASCT it would seem to me this is likely a complete cure. Now that I look at this chart again, I realize that this is not true for non-TBC/ASCT, with the chart does not flatten until about 84 months

I completely understand your dilemma; since your father in law has been in remission for about 3 years, it would seem that his prognosis could be reasonable, and as you have probably been told, there is some risk of treatment mortality associated with TBC/ASCT. The only other fact I know is that TBC/ASCT can be used for “salvage” therapy for patients who have relapsed with just MXT or radiation treatment (example being Leprechaun2 per posts above), so a decision against ACST now does not necessarily have to be final. I assume if a relapse is detected early (i.e. MRI) this can improve the treatment odds. Thanks for your best wishes and I return the same to your family as well, good luck with your difficult decision.

Smile7
Posts: 2
Joined: Jul 2012

Hi. I wanted to thank you for taking time out to write a thorough response with the link to the study.For someone who is not a doctor your posts are thorough, well thought out and make a lot of sense. We will wait for one more appointment before the decision is made. I hope to keep you posted. Best wishes again. Thank you.

oilernick
Posts: 9
Joined: Aug 2012

Dear “Dan in Canada”:

Like you, I am a man in my early 40’s who was recently diagnosed with Primary CNS Lymphoma. I will soon be finishing six months of MTX treatments. I have also been taking Rituximab and Temodar. To date, my treatments have gone really well and I feel virtually normal. My scans are “clear” and I appear to be in some sort of remission. I continue to work, exercise and coach my son’s baseball team. I even go camping and hiking with his Boy Scout Troop.

Aside from the huge inconvenience of it all, I must admit that the treatments to date have been far easier than I could have imagined at the front end. (My business is in shambles at the moment, however, but I digress.)

Assuming I pass all of the prefatory tests, I am slated to undergo a stem cell transplant in mid-October. My doctors (at the Mayo Clinic in Phoenix) are world class and they appear to have been as aggressive as possible in treating my condition. I feel truly blessed to have so many highly skilled experts overseeing my situation.

My wife and I – independently – stumbled upon your postings and given the closeness of your situation to mine, I kinda felt obligated to send you a “hi” and “thanks” for keeping us updated on your progress. God willing, I will do the same on my end.

I couldn’t tell from your posting what your situation is but I am a father of two fairly young kids. To be honest, I’m not all that concerned with the notions of “cure”, “CRR”, “PFS” and the like. I just pray every day, several times a day, that God will allow me to hang around long enough to see my youngest child leave the house in several years. At the moment, that’s my number one priority in life and it appears achievable. Unfortunately, I’m not sure what my number two priority in life actually is (assuming I even have one).

I look forward to writing to you in the months and years to come.

Regards,
OilerNick

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Dear OilerNick,

Thanks very much for sharing your similar situation, I find it really helpful and consoling to compare notes and know that we are not alone in what we are going through.

I have two daughters aged 9 and 12, and like you, my greatest wish is to be around with my wife to see them graduate from school, and later on maybe walk them down the aisle and hold a grandchild in my arms.

I also feel blessed and lucky that there have been some developments in CNS lymphoma treatment in the past few years that have improved the chances of survival. The doctors and staff at my hospital have been excellent and I feel I’ve gotten world class care. Because my illness came on very suddenly and unpredictably (seizure), it felt like I could have easily passed away that day, so I feel very fortunate that I’m still around, having a second chance at life and I look at every new day as a blessing.

I’m about 3 months now out from my hi-dose chemo and stem cell transplant and now feel pretty normal. Taste buds and appetite came back around 4 – 6 weeks after and about that time I started regain more energy. My facial hair is just starting to come back now, for a while there I only needed to shave a bit of fuzz every 2 weeks or so. Not having to shave every day was actually pretty nice. I’m also starting to regrow some hair back on my head … though the parts that were missing hair before aren’t miraculously growing in again (darn!). I have been out hiking and doing jobs around the house this summer and feel pretty normal. The only remaining effects I still have from the chemo are my digestion isn’t completely back to normal, and I have periods of low blood pressure meaning I can feel light headed if I get up too quickly. These symptoms aren’t really a problem and I will be going back to work in the next few weeks.

Hope the rest of your treatment including the stem cell transplant goes as well, and again I appreciate hearing about your progress

Regards,
Dan

oilernick
Posts: 9
Joined: Aug 2012

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.

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi OilerNick,

We didn't elaborate very much to our kids about the the stem cell transplant portion of my treatment, other than letting them know that I was going to be in the hospital for a longer period than the previous MXT treatments, and it would take longer for me to recover. I didn't lose any hair with the MXT treatments, but we talked about the fact my hair was more likely fall out but regrow this time; my youngest daughter was very intrigued by the possibility that my hair might come back a different colour or texture (ie curly) , but other than that we didn't talk much more about the ACST treatment beforehand.

A social worker at the hospital gave me a good tip / observation about helping kids with their parent's treatment; if you can give them something to do to help you during your treatment, even if it's just a small thing, they feel more in control of the situation and like they are taking steps to "make things right". I saw a bit of this with our younger daughter when I was released from the hospital, she was very insistent that she should carry my bags for me. My daughters also made get well cards, etc. However, I don't know if this tip is as effective for a 14 year old.

I hope you are not too stressed about going through the ACST; while I can't say I enjoyed it, if I have any kind of relapse I wouldn't hesitate to do it again. Since you are a similar age and seem in good health, I hope you will be pleasantly surprised that it isn't as bad as you expected. I don't know if any moms will think this is a great analogy, but I kind of think of it as similar to what a woman must go though during pregnancy, what with having periods of sickness & knowing that you are going to go through pain, but in the end knowing the benefits outweigh it all. Similarly, knowing about pregnancy doesn't seem to stop women from having more than 1 child!

I posted a status a few days ago, as I noted I almost feel 100% again after 4 months, but still have a few weird side effects like Lhermitte's sign (which aren't bothering me too much). I am feeling out of shape but am starting to jog short distances again ... feels like hard work and I can only jog for <5 min at a time, but I am making some progress.

Hoping your remaining chemo and transplant goes well,

Regards,
Dan

oilernick
Posts: 9
Joined: Aug 2012

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

leprechaun2
Posts: 76
Joined: Jul 2011

I am happy to hear that the ACST has gone so well for you - I also thought the process was not as terrifying as it was described to us. Hub had some up and downs to deal with after his but none as awful as the tumors which kept returning after other types of treatments!

He is now 27 months free of cancer! His next MRI is Nov 20 at Sloan Kettering and we are looking forward to again hearing good news.

I agree entirely, thank God medicine has come so far in treating this horror.
May your recovery be smooth and speedy! I hope you will be hugging those kids of yours soon.

We will be praying for continued good news,

Leprechaun!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

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
Posts: 9
Joined: Aug 2012

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

leprechaun2
Posts: 76
Joined: Jul 2011

I am so happy for you!

I am sure the kids enjoyed the hugs as much as you do!

Hub is doing well and I pray that you continue to feel good and then better! We are at 2yrs, 4 months and still clear, next MRI, Nov 20th.

Thanks for posting, and, yes, we look forward to hearing from you too!

Dan_in_Canada
Posts: 22
Joined: Apr 2012

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
Posts: 76
Joined: Jul 2011

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.

 

Victelio
Posts: 22
Joined: Feb 2013

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

 

 

Dan_in_Canada
Posts: 22
Joined: Apr 2012

Hi Vic,

 

Sorry to hear about your diagnosis, hope you are still feeling ok.  It wasn't clear from your comments, did you have 4 separate tumours, of which 3 were benign and one is PCNSL?

I'm not sure what the DeAngelis Chemo protocol entails, but I think it is standard to get at least 3 - 4 rounds of methotrexate (with combinations of other drugs such as vincristine, procarbazine, and rituximab) before an ASCT.  I think it has been shown that the methotrexate treatments are successful most of the time in treating the cancer, at least in the medium term, and this step is necessary so you don't have any cancerous stem cells when they are collected.  I believe the medical term for the first phase is called "induction". The further hi-dose chemo + ASCT ("consolidation" treatment) then helps reduce the chance of relapse. 

You probably saw in the posts above that I am a believer in the ASCT; I've seen several longer term studies that have had positive results, so if you are healthy enough I would definitely suggest trying for it.  For most, it is not pleasant to go through (though in the posts above OilerNick seemed to have had a very quick recovery, hope he is doing ok), but I personally like the better odds it gives you

Best of luck with your treatments,

Dan

PS. I didn't reply to my most recent post, but I am staying on dilantin to prevent seizures.  No real side effects & seems to work. 

Victelio
Posts: 22
Joined: Feb 2013

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.

Victelio
Posts: 22
Joined: Feb 2013

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

leprechaun2
Posts: 76
Joined: Jul 2011

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
Posts: 76
Joined: Jul 2011

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.

Victelio
Posts: 22
Joined: Feb 2013

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

leprechaun2
Posts: 76
Joined: Jul 2011

Hi Vic,

BiCNU is Carmustine, one of the chemos he had with MTX. He also had to stay in the hospital after his MTX until it cleared, usually he went home on the 3rd day after.  He drank water and had no acidic foods, although he did have a small coffee each day, his only cheat furing the process.

After he was NED, it was about 2 months for his transplant.  During that time, his cells were harvested and we attended a talk given by people who had been through it.  He went in for his ASCT June 27 and was out of the hospital on July 20.  some of this was really rough but well worth it! His recovery was long due to the number of treatments he had before undergoing the transplant, it took over a year for his blood counts to be anywhere near normal.  He has not been sick one day since the transplant, although I have been sick with a few colds in that time!

He still takes Acyclovir to prevent Shingles.  He has been on Keppra since July  08 when he had his only seizure.

After his transplant he had a few more meds to take to keep him safe from other things but he is done them now. 

I have detailed notes from our stay during his transplant and his recovery afterwards.  Ask whatever you like...

God bless you too!

 

 

Donnaann314
Posts: 3
Joined: May 2013

OilerNick

 

We are currently undergoing treatment at St. Josephs and thinking we should probably be at Mayo for PCNS?  Also, did you have radiation?  My partner is 65 and worried about that.  He just completed 5 rounds of HDM and appears it shunk in half.

 

any feedback is appreciated.

 

Donna

Mary N.
Posts: 89
Joined: Jun 2013

Hi Donnann314.

 I was diagnosed in 2010 and the only treatments I have gotten, in consultation with Stanford, has been high dose MTX and Rituxan.  I had both every 6 weeks and my tumors were gone in 8 months.  I have now gone to having monthly Rituxan and every 4 months the high dose MTX.  I have not been offered a stem cell transplant and going to ask my doc about it.   I am 73 and I've read some things that have a cut off age wise.  However, as it is now I really am able to treat it like a chronic disease and aside from a bit of fatigue for a couple of days have very few side effects. I have worked (after 9 months and part time) until this June when I decided I didn't like the 2 hours in my car.  I seem to get stronger each year.  My biggest joy at this point is that my daughter's identical twins will be 3 next month, and I wasn't supposed to live to see them born.  So much for predictions.  

Hope all has been going well for your partner.  Blessings. Mary

 

oilernick
Posts: 9
Joined: Aug 2012

Donna:

First of all, I apologize for taking so long to respond to your post.  I just saw your question yesterday while waiting for a flight.  To be honest, I don't visit this site too much anymore because I feel terrific and reading these posts causes me some anxiety.  That being said, I've been down the entire road of chemo and ASCT so I do have pretty good insight for those who are yet to go down this path.  I'll put my anxiety aside and start visiting this site again so that I can help answer questions like yours.

As for your question, I was originally diagnosed at St. Joe's and I underwent my first chemo treatment there.  While I feel like the care was excellent, my wife didn't think they communicated enough with us and, as such, I quickly moved over to Mayo Clinic.  I have never once regretted that decision.  Dr. Craig Reeder is my oncologist and Dr. Sylvia Porter is my neurologist.  I can't tell you how terrific and impressive these folks have been.  I seriously doubt that one can get better care anyway on Earth; I ain't kidding.  One thing, however: the food at St. Joe's is really tasty and the food at Mayo is, at best, completely gross.  While that shouldn't way too heavily on your mind it weighs heavily on my mind.

As for radiation, I didn't have it nor was it recommended for me.  For the reasons you probably already know, my doctors told me that they were deferring radiation for someday down the road. God willing, that day will never come.

As of this date, I am about 10 months post ASCT.  While I'm (still) overweight, I'm exercising a lot.  In fact, I'm training for my 6th marathon - 1st post-ASCT - this coming January.  I am also coaching my son's 13U baseball team and going on scout outings with him.  I never stopped working throughout the whole process including while I was in the hospital for 3 weeks last October.  (Work makes the days go by faster.)  For anyone out there reading this post and wondering whether or not they ought to do the ASCT I can tell you that I would do it again; no doubt about it.

If you have any other questions, please feel free to pose them to me.

Regards,

OilerNick

leprechaun2
Posts: 76
Joined: Jul 2011

Yeah Nick!

 

SethfromMaryland
Posts: 4
Joined: Dec 2013

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

Sten's picture
Sten
Posts: 74
Joined: Apr 2013

Hi Seth,

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

After the high dose chemo I had the following experience:

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

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

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

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

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

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

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

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

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

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

 

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

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

Good luck!

Sten

 

leprechaun2
Posts: 76
Joined: Jul 2011

Hi Seth,

If you check out my posts, you will have lots of info about stem cell transplant.  Hub's was in July of 10.  He is now almost 3 and a half yrs with No Evidence of Disease.

I check back in here at least once a week and if there is anything I can do, please let me know.  His transplant was at Sloan Kettering in NYC.  I am sure it saved his life!

 

 

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