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Lynch people: Are you taking aspirin? how much? and any kind of monitoring?

mollymuch
Posts: 18
Joined: Jul 2011

I'm curious what other Lynch patients have decided to do re: taking aspirin and if their drs have recommended any kind of monitoring along with it. Following in the wake of CAPP2 I'm taking 2 325 mg aspirin a day after taking to my oncologist about it, but she seemed a little unsure of what to recommend - she more or less left it up to me, which is fine, and mentioned monitoring, but didn't mention anything specific. It hasn't been that long, though.

What's your experience been?

p.s. I kinda wish there was a board here for hereditary cancer so I didn't have to cross list.

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I cannot take aspirin now, but I will start when I am off of blood thinners. My dr. Is all for it...

I, too, wish we had a spot for hereditary cancers. There seem to be more people on the colon thread.

Are you all finished with treatment? Just wondering about my lynch comrades.

Take care.

mollymuch
Posts: 18
Joined: Jul 2011

I finished my chemo (after radiation, etc.) in December 2010 and got my Lynch diagnosis November 2011. I was also on blood thinners for a blood clot, and after I went off them in December 2011 I started on aspirin a couple months later. My doctor is supportive, but sort of vague on the details - understandably so, since the research doesn't seem definitive enough to point to particular dosing - hence the need for the CAPP3 study, I guess. I'm going for a consult up in Seattle in a couple of months specifically to talk about Lynch Syndrome and I'm really looking forward to that.

In re: a forum for hereditary cancer, I sent a couple messages to the "contact CSN" asking if we could get a hereditary cancer forum going, but haven't heard anything back at all - I'm not sure if there is anyone who even reads the messages.

I've also been trying to get some support for a regular local meet up here in Portland, Oregon - we had a meet up a couple of weeks ago and although only three of us showed up, it was just amazing to meet someone else with Lynch for the first time, and we were able to share a lot of information and support with each other. So we're hoping to do it quarterly or something. I keep hearing from drs that there are more and more of us.

Thanks for writing back - every time I feel less alone with Lynch, I feel better. :)

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

Hi Molly,
I was diagnosed with UPSC on 2009. I went thru a debulking hysterectomy, 6 cycles of carboplatin/taxol and 5 brachy therapies. So far, I am still clear.

I did ask to be tested for hereditary problems - and was found to have a mismatch in MSH6. My internalist prescribes 2 325 mg. of aspirin a day. I take the coated aspirin. There are studies out there saying that it definitely benefits those with Lynch. On Tues, I have my yearly colonoscopy. I'm hoping for good results. Ya just never know.

I,too, wish there was just a "Hereditary" forum. I certainly would be interested. Please keep us posted.

Becky

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Becky, that's a large dose of aspirin. Should we all be screened for Lynch Syndrome? I was thinking that as long as I screen for colon cancer that I will be able to detect something early. What is the value of the genetic testing if I am already being screened? Am I missing something here?

Thanks for input. Mary Ann

Becky444's picture
Becky444
Posts: 29
Joined: Jul 2010

My internalist prescribed the 2 325 mg. aspirin to help prevent colon cancer. It is two of regular stength aspirins. I am hoping that the coating on these protects my stomach but who knows. I certainly wouldn't do this w/o being followed by a doctor. At first I bruised easier but I don't notice anything now.

If there is cancer in your family background, you might consider getting tested. It is expensive. My insurance did cover it. Lynch makes us at risk for many more types of cancer and they develop faster. I know the one they are most concerned about for me is colon...but there is a whole list of possibilities. It changes the timing of your tests as well. I get a colonoscopy yearly now because of Lynch.

Hopes the info helps.

mollymuch
Posts: 18
Joined: Jul 2011

Mary Ann - just to add on to Becky's good points - I'd look at your family history of cancer and discuss your situation with your oncologist and/or a genetic counselor. The advantage to knowing if you have Lynch is you can be screened for additional cancers, e.g. skin cancer, you can discuss with your dr and make the decision about whether or not to take any aspirin, and if you have family members who share the risk you can let them know so they can think about their options. But yes, getting a colonoscopy is the first big thing - so good for you if you are doing that!

mollymuch
Posts: 18
Joined: Jul 2011

We just had an awareness day at work for cancer screening - I got to share my favorite tips for a bowel prep: Desitin and lots of it, water wiping (like in some other countries) and lots of magazines you won't let yourself buy ordinarily! You probably have your own "best practices" by now. :)

Thanks for sharing on the aspirin - it's nice to know you're taking the same amount as I am. Do they ever check your blood levels like they do when someone is on Warfarin, I wonder?

And most importantly: good luck on the results of your colonoscopy!

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