The Leukemia & Lymphoma Society Community : Discussion List - Let's Just Talk

Oklahoma

tex_silver@yahoo.com — Tue, 21 May 2013 16:47:31 GMT

I don't know what to say, really. I guess we all know about the tornadoes by now and have our own thoughts and feelings about it all.

I just want to say I was there when the "Oklahoma Standard" was noted in the people's response to the Murrah Bombing and again in '99 when the nearest thing to a F6 ever recorded swept through the state, I know they're strong people. I also know the entire state has felt the impact of this and the place is eery this morning.

We have disasters all over this world but they seem to keep coming back to Oklahoma to kick it in the stomach time and again. Please think of these good folks and keep them in your prayers or good thoughts.

My favorite creatures

communityreply@lls.org — Sun, 22 Apr 2012 06:19:06 GMT

I figure there have to be some animal lovers out there among us LLS people. I have 7 dogs, a Russian Tortoise, and a fish named Killer, who has assassinated every living thing in the fish tank he used to live with. I have lots of photos, so be prepared to be dazzled by how cute they are, or bored to tears because some people do not enjoy critters. Please meet Gypsy, you will see her often, she is shy, as viewed here, but have lots of please take my photo shots for the future. Oh, I Boy Scout swear each photo is not posed, they just end up doing lots of fun things and I always have a camera close by.

Finally!

communityreply@lls.org — Fri, 17 May 2013 12:31:14 GMT

After several weeks of being blocked by browser access and/or update hiccups, I have returned! Not sure if that is a positive or negative

Pam

Very Cool

tex_silver@yahoo.com — Tue, 14 May 2013 18:41:21 GMT

Chris Hadfield from Canada who's been commanding the International Space Station for the past few months did this video rendition of "Space Oddity." I don't know why I thought it's so cool but it is.

Here's the link

Limbaugh Raises Another $3 Million For LLS

communityreply@lls.org — Sat, 04 May 2013 15:58:07 GMT

As a contributor, I always look for the results of this annual Cure-a-thon event - You'll never hear them on his show - most people don't even know that it goes on every year, or that it has raised a total of $37 million.

"RUSH LIMBAUGH's annual Cure-a-thon on APRIL 12th is being projected to have raised over $3 million for the LEUKEMIA & LYMPHOMA SOCIETY. The organization says that over the past 23 years, the syndicated talk host has donated $5.7 million of his own money and has raised over $37 million to support the charity, and has raised awareness on the air with LLS estimating that he has devoted over a million dollars' worth of airtime to its mission.

'LLS is appreciative of Mr. LIMBAUGH's commitment to helping fund cures and saving lives and we look forward to continuing this important relationship,' the organization said in a press release."

http://www.allaccess.com/net-news/archive/story/117719/rush-limbaugh-raises-another-3-million-for-leukemi

Will you help me understand weird cbc results?

communityreply@lls.org — Wed, 17 Apr 2013 01:14:14 GMT

I've had lots of years of experience understanding my cbc lab results, but I have a copy of today's labs with the following, which I've never seen on my reports before and which I don't understand. (By the way, I was originally diagnosed with polycythemia vera, and progressed to myelofibrosis a couple of years ago.) Can anyone help me understand the meaning of the following:

H/H rule -1.0

Abn Lymph flag 30

Atyp Lymph flag 10

Blast flag 20

Fragment flag 110 R

Hgb Defect flag 80

Imm Gran flag 10

Iron def flag 80

NRBC? flag 210 R

Plt clumps flag 40

RBC Agglut flag 60

RBC Lyse flag 20

Turbid flag 80

I'm sure that if the numbers mean anything serious, my hem/onc will call me. However, I would like to know for myself. I'm funny that way.

Thanks for your help!

Pegetha

Love that dirty water

communityreply@lls.org — Tue, 16 Apr 2013 19:22:38 GMT

For those who know me from the BMT board on here, you know that my husband is treated at MGH in Boston. Boston is my city; I grew up on hour north of Boston and Boston is sort of an icon in the northeast. We all love Boston. We love our Red Sox and Celtics and Bruins and Pats.

Yesterday Boston was attacked by an unknown group or person. I can't even describe the fear I felt, knowing that I have family and friends who were running in the marathon, watching the marathon, and working/living in Boston. I am relieved to know that my friends and family were not among those who were hurt. Scary to know, though, that my mom was standing exactly where the second bomb went off 2 years ago, watching my cousin run the marathon with her Aunt. Very scary.

I am so proud of the response of all area hospitals, the police, other first responders, and just the general public. We are showing what we are made of, as Bostonians. We are so lucky to have some of the best hospitals in the world located in Boston, and their reaction to the tragedy has saved many, many lives.

When Nate had has transplant 2 years ago, he had a view of the Charles River. We love that dirty water. Stay strong, Boston.

Suicide rates may be higher in stem cell transplant recipients

communityreply@lls.org — Wed, 10 Apr 2013 12:55:38 GMT

Suicide rates may be higher in stem cell transplant recipients

Tichelli A. Cancer.2013;doi:10.1002/cncr.27987.

April 5, 2013

Europeans who underwent hematopoietic stem cell transplantation were more likely to commit suicide than those in the general population, according to results of a case-control study.

--------------------

Researchers from several sites in Europe suggested that suicides and accidental deaths have not been sufficiently studied in patients who have received hematopoietic stem cell transplantation.

The current case-control study investigated factors linked to suicide or accidental death events for 294,922 patients who underwent autologous or allogeneic transplantation between 1980 and 2009.

The 10-year cumulative incidence rate of suicide among these patients was 101.8 per 100,000 patients, according to the results. The 10-year rate of accidental death was 55.6 per 100,000.

After transplant, the standardized mortality ratio was 2.12 (P<.001), and the absolute excess risk for suicide was 10.91. These rates were higher than in the European general population for 100,000 deaths.

For accidental death after transplant, the standardized mortality ratio was 1.23 (P<.05) and the absolute excess risk was 2.54.

The case-control study results indicated that relapses occurred more frequently in patients who committed suicide after transplantation. Relapses occurred in 37% of patients who underwent autologous transplantation and committed suicide, compared with 18% among those who died from other causes (P<.0001).

Among patients who received allogeneic transplantation, chronic graft-versus-host disease was higher in the suicide group than in those who died from other causes, 64% vs. 37% (P=.001).

“There is an excess of deaths due to suicide and accidents in patients after undergoing [hematopoietic stem cell transplantation] as compared with the European general population,” the researchers concluded.

-------------------------------------

First 1 Year Checkup

communityreply@lls.org — Sun, 03 Feb 2013 17:04:07 GMT

I have been away from the discussions for some time. 2012 was one tough year health wise but no cancer. I was ill for almost the whole year with various problems culminating very nicely with Shingles in by right eye. It was touch and go if I would loose my sight but I my GP acted quickly and I am OK now after 2 months most of which was unbelievable painful.

In the meantime I am just starting by checkup routine after a 1 year layoff from checkups. The previous 5 years were every 6 months. I did get a bit of anxiety around the time that I would normally have a checkup but I did get through it without too much stress. More of a little bit of worry for a couple of weeks. Now I am OK and actually OK with the upcoming checkup also.

I did get some bad news relating to a Daughter-in-law who was diagnosed with CLL around 2003 but has been on W&W until last week. She was supposed to start chemo but came down with Bronchitis and the start has been postponed for a couple of weeks to allow her to get well enough for the chemo. I must admit I do not know very much about CLL as my DX was Lymphoma which I now know more about that I cared to know before the dx. She sees me as a bit of a poster boy for success as I have been in clear for 6 years now. I have a similar situation with a close family friend who has just had 2 mastectomies (each one at a different time due to finding the spread after the initial surgery).

Anyway; I wish the best for those in the throws of this monster and every success for continued good health for those in remission.

Regards

Roy

Issue of Science on Cancer Genomics

communityreply@lls.org — Mon, 01 Apr 2013 13:30:33 GMT

For anyone interested in the latest on the interface of genomics and cancer the March 29 issue of Science discusses this issue.

The issue is fee to the public if you register here is the link

http://www.sciencemag.org/site/special/cancergenomics/

Really?

communityreply@lls.org — Wed, 27 Feb 2013 01:49:36 GMT

Okay, so, my husband Nate is almost 2 years post transplant and recently started back at work. He is doing facility maintenace at a retirement community. I guess they have had an outbreak of the Noro Virus (i.e. the tummy flu), so Nate has been being super careful with hand washing and has thus far escaped the illness.

However, he somehow managed to bring it home and give it to me!!! Really?! Isn't he supposed to be the one who is immunosuppressed and at risk for these things? The guy is like walking on sunshine he feels so well, and here I've been hugging the porceline throne for 2 days with a low grade fever.

I guess I can take this as a good sign that his immune system is running strong. Right...?