MCL Sites:

ACOR  –  Association
of Cancer Online
Resources
   acor.org
   acor listserv

List Server at UCSD.edu -
  listserv@ucsd.edu

MCLaid -
   MCL Aid

Misc -
   CancerBACUP
   Lymphoma Info

Category: Links

09/13/15

Permalink 11:58:07 pm, Categories: Links, 304 words   English (US)

HUMed/JTCC Life and Liberty Celebration

I attended the Hackensack University Medical Center/John Theurer Cancer Center, Life and Liberty Celebration on Sat, 9/12/15. Chris and John attended with me, and Em's at school.

We met up with Jim and Mary, as well as Luther and Nancy. Jim and Luther are friends that have gone through treatment as well, and we all have our stories. Always so good to see these wonderful people! it's a great event that gets us together to enjoy each other's company, and provide (and receive) support from each other. It's also a great celebration for all the wonderful caregivers!!

I met a recently diagnosed/treated patient of Dr Goy, Richard, who walked over to me and asked if I was, well, me, and after acknowledging, we had a wonderful conversation. Richard is a fellow cyclist, and did a great job with RHyperCVAD and is in remission. Congratulations!!! Please keep in touch (assuming you see this), and I look forward to hearing of your continued successes.

One thing that Richard noted about my blog that he found helpful, was about going to the ER if you get feverish/sick during treatment. I can't stress this enough, as I had one friend go into sepsis during his treatment (a cycle or two ahead of me) - though he came out of it, but not after a lot or ICU time. Don't fight it - it can beat you - get to the ER. If you want to be tough, get on a bike and/or train during chemo to keep yourself fit, but let the docs/nurses/meds get rid of the infections.

Thanks for checking in, and so good to see everyone at the event. And Rich, we missed you there, but look forward to seeing you and your wonderful family next year. Keep up the good fight.

best,
john

05/23/13

Permalink 09:58:23 pm, Categories: Links, 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 09:35:44 pm, Categories: Links, 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

02/07/06

Permalink 05:28:56 pm, Categories: Links, 99 words   English (US)

Blood counts getting better!

Got my blood results back today (Coleen was great and called home with them).

Whites were up to 4 and change, HGB's are at 11.1 - doing a slow but nice climb, and the Platelets are at 234 - back to normal for me, so I'm clotting quite well now, thank you....

Just need to drop the weight that I put on over the past 2 months, and then I'll be able to see the benefit of the higher HGB's! - Right now I think they're offset by the weight factor! Training on the bike with the cool heart monitor should allow me to assess that.

01/20/06

Permalink 08:13:20 pm, Categories: Links, 214 words   English (US)

Day 179 (Fri) - 15th Day Post 4th 'B' Cycle, 8th Cycle total

Spent the day at the Cancer Center at Robert Wood Johnson in Hamilton, getting 2 units of blood and 1 of Platelets. It's a very nice facility where the outer perimeter infusion chairs face out to a garden, and the inner ones face each other, but it's a very bright airy setting. I took a chair off on the side where I could be on the phone and not bother anyone (hopefully). It wasn't too crowded (only a few of us), so that was good.

I got my blood and felt better. You really don't feel better immediately - only because you really don't feed like there's anything wrong - until you run up a couple flights of stairs, or do something requiring energy! Then you notice the boost when you've got more blood.... I was 6.8 when tested this am, so I needed some HGB.

Also got a big 'ol bag of platelets. Those are funny. Blood comes in pints, platelets come in units. Some bags are small, some large, it's the luck of the draw. I've been at 5.something, and got a small bag, followed by a normal size one. Today I got lucky and got a big one (my platelets were 37, up from 17 on Wed, but still lacking).

Headed home after and onto a normal weekend!

Permalink

11/25/05

Permalink 09:13:06 am, Categories: Links, 271 words   English (US)

Day 123 (Fri) - 10th Day Post 3rd 'B' Cycle, 6th Cycle total

Did not sleep well last night. Woke up around 2:30am, and tossed and turned for the rest of the night. They stop giving out ambiens at 2am, so that was out of the question. Temp was 102 when they took my vitals at 5am. Not sure where that came from, my temp had been good (under 101, and really in the 99's) before that. Maybe it just broke....

Dr. Goy stopped in this am, and he wants me to stay one more day due to the 102. The cultures were still positive, so he still hopes the vanko can kill them in the hickman, but if not, the hickman will have to come out. If I get more fevers, he wants cultures drawn. He also wants me to come to his office on Monday to get blood drawn for counts and cultures. So close, but yet......

My WBC's are 3.7 - so they made a huge jump up. All the Nuepogen helped, along with the fact that it's now day 10 post chemo, and that's when you're supposed to start back upward. I started to get some bone pain yesterday - in the knees and hips - normal stuff towards the end of the Neupogen cycle for me.

I feel fine, decent energy, etc - great looking day out - blue sky, etc. Chris said it's in the 20's though, and there was a really strong wind yesterday that blew some of our stuff around! Chris is stil under the weather, and will hopefully be turning the corner on hers (and not prove positive for mono!). Tonight's the local town Christmas parade, and the kids should get to go see that.

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