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06/05/17

Permalink 07:00:35 pm, Categories: Treatments, 268 words   English (US)

May/June 2017 Update - All Is Well

May/June 2017 Update - All is well!

I started this post by copy/pasting the prior post, so that's a good thing!

My appointment with Dr Goy was in May, but procrastination and life got in the way of this post!

Chris and I went to see Dr. Goy, and all went well.

No scans prior to the visit; and as noted, I'm fine with that, as less 'stuff' going through me is probably good, and no need to incur the expense if there's no 'need'.

So, the visit with Dr Goy is a fairly quick laying of hands, check lymph notes, heart/lungs/etc, and he inquires about health, etc. It's also good for us to hear from him what he's been up to, how many MCL patients he's seen, etc.

Dr Goy recently put 2 patients in touch with me, and it's so 'good' to speak with them. They often haven't really heard much about MCL, aside from maybe reading some bad stuff on the internet. I'm 'happy' to tell them about my experience with Dr Goy, the HUMed/JTCC, and about being here 10+ years out (remission
since Jan 2006).

Thanks for all the support, thoughts, and prayers; they're clearly working! Thanks to those who have checked in on me to see how I was doing - your concern and friendship is truly appreciated.

Update on several friends fighting MCL right now:
- Jim is doing well. He is seeing Dr Goy in June, and we pray for his continued good health.
- Rich is doing awesome.

Thoughts and prayers to other friends/family fighting various forms of cancer.

Many thanks,
John

Comments:

Comment from: Jimbo [Visitor]
Hey John. Checking in again to thank you for keeping this blog active and posting updates. Wishing you and your family the best.
Permalink 06/07/17 @ 02:44
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Permalink 06/19/17 @ 10:55
Comment from: XRumerTest [Visitor]
Hello. And Bye.
Permalink 06/20/17 @ 09:15

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06/12/16

Permalink 09:46:39 am, Categories: Treatments, 307 words   English (US)

May/June 2016 Update - All is well!

May/June, 2016 Update - ALL IS WELL

My appointment with Dr Goy was in May, but procrastination and life got in the way of this post!

Chris and I went to see Dr. Goy, and all went well.

This was the first visit without scans prior (CT, PETs were dropped a while ago), and I'm fine with that, as less 'stuff' going through me is probably good, and no need to incur the expense if there's no 'need'.

So, the visit with Dr Goy is a fairly quick laying of hands, check lymph notes, heart/lungs/etc, and he inquires about health, etc. It's also good for us to hear from him what he's been up to, how many MCL patients he's seen, etc.

We did note that I'd been having colds more frequently, especially in the winter. How much is related to lots of antibiotics during chemo, or having my immune system beaten down during chemo, or the fact that this was a cancer that affects the lymphatic system, etc I'm not sure. They tested my IGG, which can be a marker, but levels were fine. I may ask for a test going into fall next year to see if I need something to boost the system during that time.

Thanks for all the support, thoughts, and prayers; they're clearly working!

Update on several friends fighting MCL right now:
- Jim in in remission!! This is awesome news, and not for lack of effort.
- Rich is doing very well, post a SCT. Again, not for lack of effort, but he's settled out. As he posted recently "Other than that all has been quiet on the health front… and I must confess that living a quiet, boring, normal life is a very good thing."

Thoughts and prayers to other friends/family fighting various forms of cancer.

Many thanks,
John

Comments:

Comment from: Jim [Visitor]
Awesome. Glad to hear you're doing great. Been following since my aunt was diagnosed with MCL about five years ago. She went through pretty much the same treatment as you, although I don't know the exact technical details of it. She also had bone marrow and stem cell transplant afterwards. She's been fine since then.

Jim - thanks for the positive comments, and awesome on your aunt - re success. SCT is certainly a tougher route, but has great promise. Best to you and your aunt, and there's some very positive stats coming out of our community. thanks...
Permalink 06/16/16 @ 05:41

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05/21/15

Permalink 02:30:18 pm, Categories: Treatments, 206 words   English (US)

May, 2015 Update - ALL IS WELL

Chris and I went to see Dr. Goy today - all went well.

I had my scans last week, and I had possession of them prior to the visit, so I got to see 'unremarkable' and 'unchanged' - the words I love to see on those scans!

It's still great to see Dr. Goy, and he's untiring in his pursuit of a cure, of helping, of building out the work he's doing, etc.

Thanks for all the support, thoughts, and prayers; they're clearly working!

I do ask for prayers for a few friends who are fighting MCL right now (Jim and Rich specifically), and for a friend who lost the fight about a month ago (Greg). All have/are fighting valiantly, and all have tremendous faith and support, but could always use some help. For Greg, he leaves behind a wife, a daughter entering college next year, and a son going into junior year of high school. His passing shocked the heck out of me, as he cruised through R-HyperCVAD, but his Auto SCT hit him hard. For anyone doing chemo treatment, don't fight/'tough out' the fevers, the sick, etc - get to the hospital if you hit the marks your onc tells you about.

Many thanks,
John

Comments:

Comment from: Jimbo [Visitor]
Thank you for the update. Glad to hear you're 100%. My aunt was diagnosed with MCL back in 2009 and went through more or less the same treatment as you. I've been following your blog since then. All the best.
Permalink 05/27/15 @ 05:52
Comment from: Jim [Visitor]
God Bless you John and all the O'Briens.
Thanks for the constant support!
Jim Roth
Permalink 05/27/15 @ 09:57
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07/14/14

Permalink 09:28:38 pm, Categories: Treatments, 463 words   English (US)

May, 2014 Update - delayed entry! - ALL IS WELL

Apologies to those following the blog for my delayed entry. I met with Dr. Goy in May, and all was well! Back again in a year. Many thanks for checking in!

I really hope that anyone that has MCL, and that looks to this blog, can find hope and a positive outlook for fighting this. I'm now 8+ years out, and that's from Stage 4B diagnosis! I did 8 rounds of R-Hyper CVAD, had multiple transfusions, took a number of trips to the Emergency room for fevers, etc. but I did it - with the help of friends and family, and nurses and doctors. And i still say that it really wasn't that bad!

I also know there are many that have had a harder time at it, and that have relapsed and are working very hard to beat this; and for those friends, I pray for your remission. Jim - this is particularly for you - keep at it, you are an inspiration to many.

Finally, there are some that have succumbed to MCL, or MM, or some other cancer, and for those friends, and their family, our deepest condolences, thoughts, and prayers. Tina (RIP), Andy and family, this is for you, and we're blessed to have gotten to know Tina as much as we did.

From Tina's (and Adam's) service:

Do you live your DASH?

I read of a man who stood to speak
At the funeral of a friend
He referred to the dates on her tombstone
From the beginning...to the end.

He noted that first came her date of birth
And spoke the following date with tears,
But he said what mattered most of all
Was the dash between those years. (1934 -1998)

For that dash represents all the time
That she spent alive on earth...
And now only those who loved her
Know what that little line is worth.

For it matters not, how much we own;
The cars...the house...the cash,
What matters is how we live and love
And how we spend our dash.

So think about this long and hard...
Are there things you'd like to change?
For you never know how much time is left,
That can still be rearranged.

If we could just slow down enough
To consider what's true and real,
And always try to understand
The way other people feel.

And be less quick to anger,
And show appreciation more
And love the people in our lives
Like we've never loved before.

If we treat each other with respect,
And more often wear a smile..
Remembering that this special dash
Might only last a little while.

So, when your eulogy's being read
With your life's actions to rehash...
Would you be proud of the things they say
About how you spent your dash?

Author Linda Ellis

Permalink

05/23/13

Permalink 09:58:33 pm, Categories: Treatments, 91 words   English (US)

MCL Info

I've put this in Background, and in Treatments, as it's a great link.

LLS created this excellent reference item on MCL, with a great note on treatment - "There has been noteworthy progress in the treatment of
MCL over the last decades":

http://www.lls.org/content/nationalcontent/resourcecenter/freeeducationmaterials/lymphoma/pdf/mantlecelllymphoma.pdf

Thanks to all of the doctors and nurses researching and trying, for all of the patients undergoing clinical trials, for the caregivers that keep us going, and for the support, thoughts, hopes and prayers of friends and family.

Permalink
Permalink 09:35:53 pm, Categories: Treatments, 173 words   English (US)

Hackensack University Seminar on Cell Therapy and Interventional Immunology

My oncologist, Dr Goy, is hosting a seminar at Hackensack University Medical Center, on Cell Therapy and Interventional Immunology.

The summary from the site is:
Join us for this exciting program with the nation’s top cancer experts for a review of the latest developments and implications of cell therapy and interventional immunology in the oncology setting for solid and liquid tumors.

There is a need to bring clinicians and scientists together to collaboratively discuss innovative translational research programs and controversial management and treatments to improve efficacies in hematological/solid malignancies. This conference is designed for hematologists, oncologists, physicians, scientists, and medical professionals involved in cancer research, diagnosis and treatment.

While this is clearly not a layman's seminar, I encourage anyone that's reading this, that has an oncologist, or knows of a research scientist, etc working in this space, to attend, as these are the targeted treatments that we need to treat, and cure cancers.

The link is:
http://www.jtcancercenter.org/site/event-view-page/cell_therapy_and_interventional_immunology_current_developments_and_implica

Permalink

05/20/13

Permalink 08:40:27 pm, Categories: Treatments, 234 words   English (US)

5/20/13 Update - All is well (7+ year remission)

We (Chris and I) visited Dr. Goy today, and all is well!

We had the reports from my recent CT scan, so we questioned sites that remained unchanged/unremarkable, making sure we understood what everything meant. I also had a colonoscopy and endoscopy recently, as MCL tends to invade the gut, and i hadn't had a scan since 2007 - those were clear, and Dr. Goy was happy, sending me on my way for another year. But not before we talked about current treatment protocols, and the challenges for patients, as there still isn't one standard treatment. The protocol I received was R HyperCVAD, and has been proven to be quite effective, especially in aggressive forms of the cancer.

I have friends that I've met through this journey that have been treated, and have relapsed, and are seeking new treatment options, including Stem Cell Transplants, which, while very challenging, have amazing results. Several of these friends have already taken clinical trial drugs, and for that, I'm ever so thankful and in awe. It's the drugs that are currently in clinical trials that we hope will bring a cure to many of these diseases.

Many thanks for all the thoughts, prayers and support from friends and family. Please keep it up, it's surely working; and please keep in your thoughts and prayers those who have passed, and those who continue to fight.

Have a great summer!
John

Permalink

02/24/13

Permalink 06:40:46 am, Categories: Treatments, 1323 words   English (US)

MCL Article by Dr Goy

A Conversation About Mantle Cell Lymphoma with Dr. Andre Goy
Chairman and Director of the John Theurer Cancer Center at Hackensack University Medical Center

http://www.focusonmcl.org/content/conversation-about-mantle-cell-lymphoma-dr-andre-goy

Would you describe mantle cell lymphoma?

Mantle cell lymphoma (MCL), which was only officially designated as a separate entity in 1994, is not a common subtype of non-Hodgkin lymphoma (NHL); it represents only about six percent of NHL. MCL often has characteristics of both indolent and aggressive forms of NHL. MCL can have a rather indolent course during which most patients have limited symptoms; however, most patients relapse and become chemoresistant over time. Such challenges have led to a lot a great deal of innovation over the last twenty years resulting in significant improvement in outcomes.

Patients with MCL typically present with lymph node enlargement, an enlarged spleen, elevated white blood cell counts, and almost all patients have gastrointestinal and bone marrow involvement. However, only one-third of the patients at diagnosis have lymphoma-related symptoms (i.e., fevers and night sweats, weight loss). The diagnosis of MCL is made through pathology testing which shows characteristic morphology, immunophenotype (i.e., cells expressing B-cell mature markers CD19, CD20, and co-expressing a T-cell marker CD5 while MCL cells are found to be CD10 and CD23-negative) and typically requires evidence of overexpression of cyclin D1 or t(11;14) gene translocation.

How is MCL typically treated?

The treatment of MCL has evolved dramatically over the last two decades. Therapy is selected based on whether patients are eligible for intensive therapy based on their clinical presentation and age, given that the median age of diagnosis is the mid to late sixties.

Patients who are eligible for intensive strategies can receive either classic Hyper-CVAD (cyclophosphamide, vincristine, doxorubicin, and dexamethasone) + rituximab (Rituxan) alternating with cytarabine and methotrexate or induction therapy followed by autologous stem cell transplants as consolidation therapy. This approach has led to a dramatic improvement of median progression-free survival (PFS) in excess of five years versus 18 to 24 months with standard R-CHOP (rituximab, cyclophosphamide, doxorubicin, vincristine and prednisolone).

For patients who are older or have other conditions that would prevent dose-intensive strategies, there is a far more effective therapy than R-CHOP alone. Recent data looking at maintenance rituximab post-induction with R-CHOP show a clear improvement over R-CHOP alone, setting a new standard. In addition bendamustine (Treando) + rituximab which was compared to R-CHOP as frontline treatment as part of the Study Group Indolent Lymphomas (StiL) trial has shown significant improvement in PFS, although there was no difference in overall survival. The reported toxicity profile also makes it an appealing option in MCL. The difference in PFS was not observed in patients with follicular lymphoma in the same trial.

There are also a number of novel therapies being developed in the relapsed/refractory setting. These agents are currently being investigated for integration in frontline treatment regimens, in combination with chemotherapy, or as maintenance.

What are the main areas of research in MCL?

Though the results for frontline have clearly improved in MCL, most patients still relapse and become chemoresistant over time. There are two main topics for MCL research: (1) a number of new biological agents are rapidly changing the horizon for MCL treatment, especially with this disease which patients typically respond poorly with chemotherapy, and (2) a better understanding of the biology of MCL, especially a growing awareness of the impressive heterogeneity among patients, which might help stratify patients better for treatment in the future.

Regarding novel therapies, bortezomib (Velcade) became the first U.S. Food and Drug Administration-approved drug ever in relapsed/refractory MCL and is currently being tested as part of induction strategies with chemoimmunotherapy regimens. In the European Union (EU), temsirolimus (Torisel) is the only drug approved in relapsed/refractory MCL. Recently, a number of very exciting compounds have emerged in MCL, such as lenalidomide (Revlimid) and ibrutinib. In a study of patients who were previously treated (median of four prior therapies, range two-ten), treatment with lenalidomide resulted in a response rate of 29 percent with durable benefit shown by a median duration of response in excess of sixteen months, which is really impressive in that setting.

Ibrutinib, a BTK inhibitor that targets the B-cell receptor signaling pathway, has shown response rates of 60 percent to 70 percent in patients with MCL, with a complete response rate of 20 percent, a rate that appears to increase over time. Lenalidomide and ibrutinib, both oral compounds, have very easy toxicity profiles and are good candidates for integration in frontline treatment regimens.

Regarding the progress made in understanding the biology of MCL, our goal is to identify better predictive markers of MCL. There are a number of prognostic factors that have been reported in MCL that can help physicians to some extent predict the outcome among patients. Yet, none of these factors help physicians make a decision for an individual patient. Mounting evidence suggests a great heterogeneity among MCL patients (with similar clinical features) as illustrated by gene expression profiling studies (proliferation signature) and a number of other technological approaches. Practically, there are 5 percent to 10 percent of patients with MCL who have a very low-grade indolent course; they have high white blood cell counts, an enlarged spleen, and few or no enlarged lymph nodes. These patients are much more clinically and genetically stable (ie, they have much fewer secondary abnormalities) than patients with more aggressive disease. Patients with low-grade indolent disease are generally monitored and treated differently than patients with more aggressive MCL and are likely not enrolled in standard clinical trials. Patients with aggressive, or “classic MCL” are usually treated as intensively as possible to achieve a deep response, which translates into a better outcome. Achieving a complete remission (CR), and even better, a molecular CR appears to be critical, and this endpoint is being investigated in upcoming EU trials.

Please discuss the importance of clinical trials, and if are there any specific trials you wish to address?

The great improvement of outcomes in MCL over the past twenty years is a great example of the impact of clinical trials. Because MCL is such a challenging disease to treat, both physicians and the medical community at large, as well as patients, have been more willing to try novel options, which is why we have made so much progress in MCL. With the number of exciting options and novel therapies, it is becoming even more critical for physicians to encourage patients to participate in clinical trials. Current trials are investigating the use of novel agents either in combination or as maintenance post-conventional therapies to reduce the risk of relapse and for continued improvement our patients’ outcomes.

What advice would you give to a newly diagnosed patient?

Most newly diagnosed patients do not have a lot of symptoms, so it is really challenging for a patient to accept the idea that they need very intensive therapy. It is important for patients to look at all the treatment options including intense strategies that clearly lead to deeper responses which will likely translate into longer benefit. We are also developing non-chemotherapy approaches in older patients with more indolent MCL.

How are you involved with the Lymphoma Research Foundation and why would you recommend a patient become involved with the organization?

I am part of the Lymphoma Research Foundation’s Scientific Advisory Board and Mantle Cell Lymphoma Research Consortium. We have annual meetings where we discuss ongoing research and developing projects. This usually leads to a synopsis of the state-of-the art research and management for MCL that is published to give more information to patients. MCL is a disease for which there is a clear lack of consensus on treatment, and because it is such a heterogeneous and uncommon disease, it is hard for patients to really navigate their way once they are diagnosed. It is important for patients to have an objective synopsis of the changing landscape of MCL and how much progress has been made with regard to treatment.

Updated February 20, 2013

Comments:

Comment from: Impalafarmer [Visitor]
REAL nice. Let me be the first to post a comment that actually has to do with the subject. I was diagnosed with MCL in September of 2012 and found this blog in my research. I check in on it from time to time to see if the young man that's had a 6+ year remission as of last May has checked in again yet. I see Dr. Goy has given us an informative post so I read it through, then checked the comments to see nothing but annoying spam. Is anyone mediating this, at least checking in to weed this garbage out? I look to this blog for information, hope & inspiration. When I see this stupidity in the comments, not ONE single comment about the groundbreaking treatments Dr. Goy is talking about but just a big load of spam, it makes me want to give up treatment & die.
Permalink 03/11/13 @ 01:48
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05/18/12

Permalink 10:56:25 pm, Categories: Treatments, 242 words   English (US)

5/18/12 - Update - All is well (6+ year remission)

It's awesome to post that... and to look and see the last post was over a year ago.

We saw Dr. Goy today - and Chris got to see the new cancer center for HUMED - the John Theurer Cancer Center - it's really amazing. We also got to see Coleen, Mary, and Maureen, and it was so good to see them and catch up. Again, they were all such an important part of my/our cancer journey, so helpful, that it's tremendous to see them.

We're looking forward to the Life and Liberty Celebration that HUMED/JTCC conduct each September, and this year we should have both kids with us (barring conflicting schedules that have prevented them both from coming in the past).

One of the most amazing things to hear is Dr. Goy's dictation into the recorder. The man speaks faster than anyone I know, and with a fairly heavy French accent, all the while moving his feet. However, it's also where i heard him say 2 years until the next exam - at which time he looked over at me and winked. We discussed, and i said i'd miss seeing everyone for 2 years, so lets keep it at 1!

Thanks for visiting, and thoughts and prayers to all who are either battling cancer, or the caregivers, families, and friends - you've all been amazing supportive, and we can't thank you enough.

Best,
John

PS - just read my reports - so nice to see 'unremarkable' and 'unchanged' throughout!

Permalink

05/13/11

Permalink 11:12:36 pm, Categories: Treatments, 590 words   English (US)

5/13/11 - Update - All is well

It's been a while since posting, and for those that monitor - thanks for looking, and for those that have found this site looking for info, please contact me if you have any questions on the site/contents, I'd be very happy to offer any insight/thoughts I have.

All is well!

I'm happy to say so for me, and do so realizing that not all is well for everyone (thoughts and prayers to all affected). My scans were good, I had a great meeting with Dr. Goy and his staff, during Nurses Appreciation Week no less. To give testament to the kind of Doctor Dr. Goy is, as I arrived at the hospital, there was a delivery of at least 100 beautiful hanging baskets of flowers, that Dr. Goy had ordered for the nurses. I ran into him as I entered the new hospital, as he was looking over the flowers to make sure they were good. One of the nurses I met had commented that he was one of the only doctors to acknowledge Nurses Week in such a manner. (If you've read my blog at all, you know that the nurses make ALL the difference during treatment).

The visit was good, brief but good. "Your scans are clear" was the statement early on; then there's the basic questions, laying of hands to check for lymph nodes, and then the dialog about what's happening in the space of MCL, with other patients, etc. Goy's so very personable, invested, etc. He's recently been named Chairman and Director of the Cancer Center at HUMC, which is awesome. More hats to wear for him, but so long as he can do it, great for me and many others.

Amazing ironic story, one of our best family friends, has an uncle, that's a tailor in town, that has the exact same cancer that I did. It was at a social function that she told me that her uncle was being treated in Hackensack, by a French doctor named Gu..... (phonetically), and I said "Goy?!", sure enough... Jerry (cancer patient) and I talked at some point on the phone, and it was amazing - same disease, same protocol, but he's about twice my age going through it - and he's taking it like a champ. I had the pleasure of seeing him at our friend's daughter's communion recently, and he looked awesome. He's going into round 6 of R-Hyper CVAD, and surely that will kick him a bit, but he's done well, and I'm sure he'll come out with flying colors. He too has an amazing support system - which is HUGE. What's really neat is some of the nurses are still there, and he has one of them somewhat regularly.

Also, we (my immediate family, and my Mother) walked at the Mercer County Park Lymphomathon, organized by the Lymphoma Research Foundation. It was a great sight, they provided yellow shirts to survivors, and white ones to all other walkers. Great attendance, a beautiful day, and an overall excellent event. Many thanks to those that donated - it's wonderful to have such good friends.

I've rambled on, but the short of it is, healthy, over 5 years out, and incredibly grateful. Thanks, and thoughts and prayers to all.

Best,
John

PS - I heard Jim and Steve cell-mates from HUMC are doing well, Cory (cell-mate from Chicago) seems to be doing quite well, Nurses Gabby and Mary from HUMC are now engaged (awesome - both are amazing people); so happy to see Coleen, Alex, Hillary, and Jesse during my visit to Dr. Goy.

Comments:

Comment from: Tom [Visitor]
You just made my day.
Permalink 05/14/11 @ 07:08
Comment from: Mom [Visitor]
John - so good of course that you are in perfect health - it must be such a bonus to those going thru it that can reach out to you - as you say - support system is everything. You didn't go on too much - and congrats to the nurses' engagements (your friends) and to Dr Goy for him as a doctor and supporting the nurses as he did with the flowers.
Permalink 05/22/11 @ 14:55
Comment from: Kristine McGrath [Visitor]
JOB,
Just stubbled on your site after all this time. So happy to hear that things are well with you.. All my best thoughts are with you and the family. Maybe we can get the old crew together over the summer. I will attempt to connect with all to celebrate all the good things in life. Like health. God bless and hugs!
Permalink 06/01/11 @ 09:15
Comment from: Jim [Visitor]
5 years! Awesome news. So very glad to hear it!
Permalink 06/19/11 @ 08:48
Comment from: Lois Mogia [Visitor]
God bless you, my 44 year old son has this same cancer, however it has not caused a problem yet. As a mother I find this HARD to live with (waiting for the phone call) . Reading your story has made me feel much better. God be with you.
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02/27/10

Permalink 01:55:15 pm, Categories: Treatments, 467 words   English (US)

2/22/10 - Semi-Annual Update - All is well

February 2010 Semi-Annual Update - Unremarkable....

All is well - scans were unremarkable/unchanged/etc... The doc was pleased (as were we).

I had a CT scan on Friday (2/19/10), but no PET scan this time. I figured insurance would start to question/push-back on the PET scan, as they're quite expensive, and as I'm 4 years out from treatment, there's a point where they'd want to have something evidence itself in a dr visit, or the CT scan. Really can't argue with that... So, CT scans they were, with contrast, and had pre-med of 3x50mg Prednisone, and took 3x25mg benadryl. The scans went uneventful - quite a bit faster than having the CT and PET to do.

The doctor visit involved the usual wait (north of an hour), but I got to see Mary and Alex (both nurses that used to be on the Chemo floor, and are now in Dr. Goy's staff). Coleen and Dr. Goy are doing well, and it was great to catch up. Goy's been busy, but still does 2 days a week seeing patient appointments, and of course makes rounds, etc. He's Deputy Director of the Cancer Center, and Chief of Lymphoma, and a big advocate of administrative resources still maintaining a hand's on approach.

I'm still going for 6 month checkups - which is good, and I'll go back in September, after all of the fun of summer!

I talked to Jim (cell-mate), and he's doing well - another clean visit, and we're of course thrilled to hear. Steven's doing well, and I need to sync-up with him.

My firm has an annual appeal where you can donate funds to various charities (comes out of your paycheck, and some matching of funds takes place), and the Hackensack University Medical Center is one of the choices, so I picked that, specifying the Cancer Center. I sent a note to some colleagues at work, nothing that if they didn't have any charity choices of their own, that they consider this one when making their election. I know most everyone has their own issues/challenges to work with, but in the event they were looking for something to contribute to (outside of the generic firm's choice - a good charity of course), they consider this one. I raise this issue on the blog, as I'd (1) encourage readers of this to do the same if they don't have any specific choices in mind, or (2) you may want to encourage others to donate to whatever facility you attended. (Seems it's when you were first starting to work that you didn't have as many issues, or compare as many pains with friends/colleagues, that you simply chose the generic charity - years later, there seems to be an abundance of worthwhile choices that have a personal attachment!)

Many thanks for looking, best wishes to all!
John

Comments:

Comment from: Alex [Visitor]
Great stuff. Keep it up.
Permalink 03/16/10 @ 13:43
Comment from: Caio [Visitor]
Hey John,

I~m a fellow MCL patient from Brazil and I would like to say that since I found out about my condition I started following your blog (aug/2008 that was).
Since that, I did all the chemo like you did (exactly the same protocol)and also a bone marrow transplant. I just did my 1 year check and everything is perfect. I would like to exchange some experiences with you (if you feel like that, of course) because there are always things to talk about that are interesting, like new treatments, nutrition and so forth. Also, would like to say that your blog always served to reasure myself that it was possible to get cured and live a normal life again! Thanks!
Caio


From John (8/20/10):
Caio,
Great news on your treatment and success! The bone marrow transplant must have been challenging - but certainly has some excellent results. I'll contact you offline, but am certainly open to discussion, as I think there's real benefit in that. I've not been as active on the various MCL forums - just need some time away from it I suppose - a bit of normalcy, but I agree there's benefit to keeping aware. And many thanks on the kind words; as you can imagine, that's incredibly humbling to hear, and extremely rewarding.

Best,
John
Permalink 07/19/10 @ 18:02
Comment from: Jim [Visitor]
John,
Great to hear, thanks for keeping us posted, and Please keep up the good work!
Jim
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08/25/09

Permalink 09:33:06 pm, Categories: Treatments, 427 words   English (US)

August 2009 Semi-Annual Update - Unremarkable

Again - 'unremarkable' is one of the best things to see on a pet/ct report - and i had a bunch of them ('unremarkable's).

I had the scans done on Friday, 8/17/09, and I got a copy faxed to me last week - allowing me to review them before my appointment with Dr. Goy today. Again - this is a key thing to do, as you can question the report when meeting the the doc. On mine, I was happy not to have to question anything. (As an aside, I have to prep w/Prednisone and Benadryl to supress an allergic reaction to the dye that I developed - seems to work well.)

I'm feeling great, still need to lose weight, and my buddy Andy is on me to get cycling again (sage advice). Still, spending time with the family is more fun than being out on the bike for a couple of hours - but then, those that do it say they do it so they can spend more time with the family in the long run...

I got to see Dr. Goy - he looked great, same spirit as ever. His father is apparently as energetic as he is, and at 80 is patenting devices that help with wood splitting for some renewable energy source device he has. Amazing... must be in the genes... Coleen, Mary, Hillary - got to see them all today, and very happy to - great people all of them.

Dr. Goy noted that at 4 years out (i'm 3.5 now), he'd go to an annual checkup. I've discussed this with another buddy of mine, whose wife had a cancer, and his logic is - why would you want to delay identifying something if it came back? The inconvenience of an scan and appointment isn't too much to deal with, versus the other downside. I think I'd prefer to stay at 6 month intervals. We'll see...

Asked about Steven, and he's doing well. Jim's going in shortly I believe, and I'll send a note out to Cory to check in on him. The hospital (Hackensack) is sponsoring an event at Ellis Island on 9/13/09 for Cancer Survivors (Goy said he didn't like that work, and neither do I really), and I think we'll be attending. I'll check with Steve and Jim - would be good to catch up....

Thanks to everyone for checking in, summer has been great - we did vacations to LBI and Boston/Cape Cod, as well as a Sand Castle day at Belmar that was pretty neat. The family is doing great!

Enjoy the rest of summer, Happy Labor Day, and thanks again!
John

Comments:

Comment from: nancy [Visitor]
Your journey sounds alot like mine. My oncologist insisted on scans every 6 months even tho I was going on 5 years of complete remission. I questioned this at the time, thinking positively "Why not yearly?" But followed his insistence. The last scan, August 31st showed abnormal lymph node activity but not consistent with Mantle Cell. So now we are in the process of determining what kind of lymphoma I have now. I would encourage you to have scans at least every 6 months. I was hoping I was "cured" but this disease is relentless. Just passing on my experience.
Nancy (62)



Nancy - thanks for your words of wisdom and experience. I'm obviously sorry to hear that there seems to be some 'activity', but hope that you're able to attack and beat it quickly, and 'effortlessly'. Please do let me know.
Many thanks, and best wishes,
John
Permalink 09/22/09 @ 19:08
Comment from: Mike [Visitor]
John,

Thanks for your site. As a researcher in this area is is invaluable for me to see your experience "first hand". Do you mind if I use your closeup of the triple lumen catheter for a presentation? I have a new diagnostic technique and I need to show people what this looks like.

Thanks
Mike


Mike - as always, happy that any of this can provide help to someone. Please feel free to use the closeup of the pic, and thanks for asking!

Regards,
John
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A short read that brings attention to the security risk of businesses that don't have information protection policies. The post also provides some great inside tips to implement a solid security policy for any business. businessmom
The Law Of Attraction like all Universal Law is dependably at work and dependably conveys correctly what YOU choose. All things that exist inside our universe are made out of vitality, or vibration. The Law of Attraction keeps it streaming easily and flawlessly. lawcorner
Mystery shopping (sometimes called secret shopping) is an excellent way to make extra money. It is very easy to do, you need no previous experience, no special knowledge and no expensive equipment. Mystery shopping can be performed by anyone who is able to go shopping. shoppingtalk
Online home improvement loan are both secured and unsecured. It is taken for making big and small improvement of the home. Online home improvement loan makes it fast and easier to reach your desired lender. smarthomeimprovement
What are Styles? A style is a collection of formatting instructions that can be applied to text, avoiding the need for manual formatting using the Format menu or Formatting toolbar. fashion101
Occupational health Advisor's (OHA) can contribute by helping managers to manage sickness absence more effectively. The OHA may be involved in helping to train line managers and supervisors in how to best use the occupational health service, in how to refer staff, what type of information will be required and what to expect. 101health
Talk to any business owner or read the business section of any newspaper and you're likely to come across stories of struggles to access sufficient finance to grow or maintain their business. But we are beginning to witness a change in how business owners access finance with many now actively seeking out alternative sources. smallfinance
Buying plus size shapewear is so much easier to do online than it is in stores. Main reason being is that all the larger sizes are actually available online. Going into a store can be confusing, but following the steps of my online buying guide, your shopping basket will filled with the right and best body shapers for a full figured woman. onlinebuy
DIY home improvement projects save you money and give you the satisfaction of doing it your way. Most of us are no experts at do-it-yourself home repair though and will abandon it in no time. These quick home improvement tips will help make your next project a success. homeimprovementideas
If you plan to become a travel agent or want to learn how to start a travel agency from home, you'd be glad to know that there are plenty of agencies that offer certifications, trainings, and the chance to own your very own travel agency. mytravelguide
Summary: There are many types of leadership, but three styles tend to be dominant: autocratic, democratic, and laissez-faire. Each style has merit and potential pitfalls - and must be used at the right times. Which one are you? fashionadvice
This article talks about the increasing costs the U.S. health care system. Many people are unable to afford medical coverage due to insurance issues and the rising costs of medical coverage. The White House has stepped in to offer options for those who are unable to find descent medical coverage. besthealth
The movie 'The Secret' has created an awareness in millions of people on the importance and power of the law of attraction. However, the law of attraction that is known to public is a reduced version that shares only a small part of the whole concept. In actual fact, there is a more complete version of the law of attraction plus the other laws. aboutlaw
When you are looking for a collision repair shop that does excellent work, price is a factor in your decision, but should not be your only concern. Quality is not cheap, and in shopping for a body shop, you want to balance paying the right price with excellent workmanship. proshopper
Deciding on a complete Naperville home improvement may be necessitated by several triggering factors. However, getting your act together is not an easy task. You are required to check on several conditions and preliminaries before you can successfully execute your plans. hosueideas
This article examines the reasons why sound business travel reporting is an essential element in understanding and controlling the travel spend of any business. Without taking heed of travel expenditure, these costs can quickly mount and become a significant financial burden for any company who has employees that regularly travel. mrtravel
Home is one of our priced possessions and we should do our utmost to keep it at its best. Many people fail in their attempt to make a dream home because of financial constraints. In this article we see how easily now we can make our home a dream house. fashionhosue
Population level health management is a new field in healthcare; coupled with predictive analytics it can help drive down the cost of healthcare while improving outcomes. This article focuses on defining population level healthcare and then providing two examples of its correct use. healthiness
The law of God binds all men forever, whether in heaven or hell, Psalm cxi. 7, 8. No human law or self-engagement binds men, but only in this life, in which they remain imperfect, and are encompassed with temptations to seduce them from their duty. In heaven they have no need of such helps to duty, and in hell they cannot be profited by them. insidelaw
When you are bored, want to purchase something, or when you simply want to relax, one of the best destinations you can have is a shopping mall. Nowadays, shopping centers have evolved from a plain shopping destination to a place for shopping, entertainment, and relaxation. shoppingadvice
This year, if you are planning to host the Halloween party in your neighborhood, then be prepared to turn your house into a haunted house. To make the party a memorable one, that would be spoken about long after the party is over and set new standards in the neighborhood, try to turn the house in to the spookiest possible. housedecor
Going to Las Vegas for Valentine's Day (Feb. 14)? Then try a Vegas airplane tour to the Grand Canyon, especially the one that includes a helicopter ride to the bottom and a boat trip down the Colorado River. Learn more. Read this article. luxurytour
It has rightly been said by fashion gurus that year 2010 is and will continue to be an interesting and exciting year for fashion. With the end of the global financial crisis and recession trend, an upheaval in the fashion world was seen in the beginning of the year and this is continuing. fashionicon
What is employee mental health and why do we need to address it as part of your worksite wellness program? In this article, you will learn about the nature of employee mental health and why it needs to become a critical component of every worksite wellness program. healthyday
In this article you will discover the forgotten laws of success that have been hidden from you for whatever reason and intention. If you want to know the hidden secrets of the ages, read this article. It is based on my personal review of a classic by Raymond Holliwell, which I had the pleasure of reading some time ago. lawadvice
With many different types of body shops available, it's important to know what type to choose in order to get the best care for your vehicle. Determine how to choose an auto body shop when your vehicle is in need of auto body repair. shoppingblog
In Bellingham, Washington, the City Council has been debating a tax code change for several months. Their aim is to promote affordable housing development in areas where it's most needed. Several options have been considered, and late last year all the debating and offering of tax provisions finally led to a decision. housedevelopment
In this article I want to discuss organised group tours versus travelling independently or solo around Europe. It may depend on your travel situation, how long you want to travel for, whether you're travelling alone or even your comfort level. So let's go through some the benefits and downfalls of both these methods of travel. grouptour
In many ways the words sustainable and fashion don't really sit together well. I have heard sustainable fashion described as both oxymoronic and a contradiction and perhaps this is true. Is it really possible for the fashion industry to become sustainable? fashionkeeper
It is not enough to know about healthy food or exercise. It is not adequate to focus on your body and forget about other aspects. Health is about the combination of all important factors. tophealth
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