CDC Symptom Diary Card

Wednesday, May 04, 2011

New York Times on Chemo Brain Lasting up to 5 years

MAY 4, 2011, 1:18 PM

Chemo Brain May Last 5 Years or More

“Chemo brain,” the foggy thinking and forgetfulness that cancer patients often complain about after treatment, may last for five years or more for a sizable percentage of patients, new research shows.
The findings, based on a study of 92 cancer patients at Fred Hutchinson Cancer Research Center in Seattle, suggest that the cognitive losses that seem to follow many cancer treatments are far more pronounced and longer-lasting than commonly believed.
The study, published in The Journal of Clinical Oncology, is a vindication of sorts for many cancer patients, whose complaints about thinking and memory problems are often dismissed by doctors who lay blame for the symptoms on normal aging or the fatigue of illness.
“It’s clearly established now that chemo brain does exist and can continue long-term,” said Karen L. Syrjala, co-director of the Survivorship Program at Fred Hutchinson and the study’s lead author. “The real issue here is that recovery from cancer treatment is not a one-year process but a two- to five-year process. People need to understand the extent to which the cells in their bodies have really been compromised by not only the cancer, but also the treatment.”
The 92 patients in the study had all undergone chemotherapy as part of bone marrow or stem cell transplants to treat blood cancers. Although the range of effects of different cancers and treatments probably varies, researchers said the finding that cognitive recovery can take five years or more is likely to apply to breast cancer patients and patients who have undergone chemotherapy for other types of cancer.
The patients in the study were compared with a case-matched control, like a friend or sibling of the same age and gender who had never undergone cancer treatment. Both groups were given a battery of tests to assess memory and motor skills. The tests included a number of memory and word tests, like trying to recall a list of words or coming up with as many words as possible that all start with the same letter. Tests to match numbers and symbols and timed dexterity tests, in which thin pegs were to be placed into holes, were also included.
Comparing the test results of the cancer patients with those of the matched controls, the researchers found that among cancer survivors, most of the cognitive problems are largely temporary but may persist for five years or longer. Patient recovery generally followed a bell curve, with some showing improvement after a year, while others took two, three or more years to recover.
Dr. Syrjala said the good news is that information processing, multitasking and executive function skills all seemed to recover within five years.
“One of the things people complain a lot about during treatment is word finding, where you know the word, it’s a tip-of-the-tongue experience, but they can’t come up with it,” said Dr. Syrjala. “We hear that so frequently during treatment. The happy news in this data is that that piece of cognitive function does recover, but it usually takes longer than a year.”
However, verbal memory and motor skill problems continued after five years among a large group of patients. Although some neurocognitive deficits are expected to occur with natural aging, the percentage of cancer patients who still had cognitive and dexterity problems at five years was 41.5 percent, twice as high as the 19.7 percent reported in the control group.
Although the news of long-term cognitive problems may be disheartening to patients, it’s important for families and patients to know that recovery can take a while. More important, patient treatment plans should include the teaching of coping skills to compensate for potential cognitive losses.
“The first step is to set realistic expectations for people,” said Dr. Syrjala. “It’s not just patients, but their families and employers who need to realize that their brains aren’t processing as rapidly.”
Many of the cognitive deficits were relatively mild and easily addressed with coping skills like note taking or strategies to improve focus.
“We all lose memory with time and learn to compensate,” Dr. Syrjala said. “These patients just have to recognize that their brains are perhaps not as finely tuned as they were before they were diagnosed with their cancers, but they can compensate very effectively.”

Tuesday, May 03, 2011

Dear Sarah, Rest in Peace

Sweet Sarah has passed away today.  I just learned of her passing and although I knew she had chosen to let go, I did not believe she would pass so quickly.

I just did not believe it, it's too much.  Please visit her website http://carcinista.com/

Sarah appeared to me as a cornerstone in the community of women with ovarian cancer. She will be desperately missed by all.

I feel selfish for having written about myself earlier. I am in shock.

Will miss you Sarah.  My deepest sympathies to her loving husband, children and family. May you rest in peace dear sister.

Love,
Denise

Body Image, dating and freaking out

"J" and I had such a great phone conversation on Monday.  We talked for almost an hour, everything from the Bin Laden situation to religion to kids' soccer.  It's been a really long time since I had a guy show any interest in me and it felt pretty good.  I am relieved to say that yes, he believes in God, and has some Catholic in him.  Yay.  The most important thing was a belief in God.  He doesn't regularly go to church, but that's fine, no judging here, he has kids and stuff.  So anyway, with all that's going on in the world, I am a bit consumed with this new individual floating around my little world here.

He invited me out tonight for a light dinner and drive, because I am new here in Seattle, that would be super.  I of course said, "sure".  Well, as today progressed my panic grew.  I'm not ready to date, just not, no way.  I never knew I wasn't ready to date, how could I know until now.

Oh geeeze, my stomach got all upset and I said to mom, I have to cancel.  She said "why".  I said "Because I'm not ready, I just can't date".  Mom and I talked a little and I sort of gave her the short version of all my issues, but she understood.

See, I can tell "J" and I have good chemistry.  He makes me laugh and he's very good looking, and we seem to be able to have good conversation.  I know in my heart there will come that moment when we could kiss or something and I just can't start that.  I have too many issues related to having gone through all the debulking surgery.  Some issues are body image, not feeling pretty or sexy or whatever.  Some issues are that I literally have all this pain and cramping.  I just don't want anyone else to actually have to deal with that.

I'm not in the same shape I was.  Even though I'm not overweight, I have a lot less muscle tone.  I'm exercising every day but trust me when I say, it ain't what it used to be.  Haven't a clue if I'll ever
get my tone back.

I don't want to be the one to disappoint in the end so I sent him a text saying that I was a bit of a mess and needed to cancel but could we talk.  So he called me and we talked for a bit.

I expected him to totally say that this was too much information, too many problems and good luck.  Instead he became empathetic and caring.  He just said that if "friends" was all I could do right now, that was cool.  He didn't want to have pressure on dating necessarily, but it was up to me.  I was so relieved.

So we are supposed to have a coffee or something on Thursday evening.  I just want to have fun with him for now while I work out my issues.  PLUS, I don't want to get attached to some guy and then have him drop me because I have all these issues.  It's better that we just be friends and get to know one another, and see what happens.

This roller coaster of emotions prompted me to call Gilda's Club.  I have an appointment later this week with a social worker to see if going to a support group would work for me.  I have been in denial that I needed a support group.

I feel safe in my little room, being with mom and just doing the minimum in terms of treatment for now.  I just haven't really gotten on board full scale to heal my heart.  My heart is a mess, and I have no self confidence.

I am close to becoming a nun, no joke.  I have often thought that I should spend the remainder of my life in prayer, that works for me.  I never in a million years thought I'd even have one  more date.  I realize I sound like a teenager here, but it's true.  I mean, I didn't expect to survive, let alone meet a cool guy.

I owe everything to God, and am resolute to doing my best to honor in God in every way.  

There is a plan, and I have no clue what it is.  All I know is that the more I listen to the little voices in my heart, the inklings, the feelings, the better I do.  If I would not have said anything, gone out on a date, knowing that I have no intentions of intimacy for a really long time, that would have been wrong.

So the friends thing is good for now.  I do like him.  

I still need to have my mastectomy.  I mean, there's just too much left unsaid right now.

Well, thanks for listening.  I hope this makes sense to somebody.

I just need to address some emotional issues on a more personal scale, and really handle them.

Love you and Peace