Arimidex and LE

gobucks

Does anyone think that Arimidex may be causing their LE, or at least causing it to be out of control?

I have LE. I developed it after I started my chemo and dealt with it mostly during rads.

I was able to finally get it under control. I have it a little. I know I need to wear a sleeve and glove during activities and I was doing great. If I started to see a little fluid I would do all the things I knew and it went away or 90% away.

I've been in an awful flare for months. My therapists are stumped. I'm doing everything right. And it's getting worse. They even sent me to another therapist for more help

I started thinking back to when I started to flare again and it's when I started Arimidex. And I haven't been able to get it under control since then and it's been months. And right now, I'm just trying to do normal things, like cook dinner, do laundry, take care of children. I've even modified those routines to make things work.

My research shows that it causes swelling. I know it's rare, but I've always been one to be a rare one.

Please help.

Krista

kira66715

Krista, I see that no one has replied. Arimidex can definitely cause swelling, but I have a sense that it's "multifactoral": the latest evidence shows that lymphedema is a systemic disease of inflammation and that the lymphatic pump can gradually tire out, even in the good side.

Also, if you had any radiation, radiation fibrosis is progressive and comes on after rads.

One of our posters had good luck with trental and vitamin E--the studies haven't been great, but when it's impacting your life, the medications are safe and it's worth a try. They're used for radiation fibrosis.

Unfortunately, sometimes LE progresses, and it's horribly, horribly frustrating.

Keep working with your therapists, and as the arimidex is something you'll be taking, consider it a "given" and as your recurrence was in your axilla, I have the sense that rads might be contributing to the whole issue.

Good luck and let us know how you're doing.

Personally, I'm on tamoxifen--and I'm sure it adds to my swelling. I used to work in rad onc and saw a lot of women on AI's and they had a lot of muscle and tendon issues, and inflammation contributes to swelling, as LE is an inflammatory condition.

Kira

gobucks

Thank you so much for posting. So your saying my LE is systemic, like diabetes? Interesting. And you also mentioned radiation fibrosis. I don't know what that is quite yet, but I will find out. I'm not saying they didn't tell me, but there has been so much told to me over the last year (yesterday, feb 9th was my first day of chemo so yay for being over this year).

But I did have rads. They were very aggressive. Btw, my cancer was a shock to everyone when it came back. They flipped. I had a lot more invasive cancer the 2nd time around so they were hitting me with a lot.



Right now, I'll admit LE is kicking my ass!

And I even feel like my body is not even healthy. I see both my one and therapist tomorrow. Any advice would be great.

I'll look into trental and vitamin E. Also heard great things about fish oil. Trying to get healthy and boost that immune system

kira66715

Here is a reference: http://jco.ascopubs.org/content/23/34/8551.full

Radiation fibrosis is when the tissues get "tough" and fibrotic due to radiation, and trental and vitamin E have had mixed results in studies to prevent it or treat it, but at least two women on these boards have used them and found them helpful and looking at old threads, they were put on the medications by doctors at Mayo and Sloan Kettering.

Here's a current study of it:

http://www.cancer.gov/clinicaltrials/search/view?cdrid=584492&version=HealthProfessional&protocolsearchid=11174785

Radiation fibrosis occurs in approximately 25% of those women treated with radiation for breast cancer. Of these, approximately 3 to 5% will develop into an acute, painful form of fibrosis. Mild fibrosis can present as a thicker or more dense breast where the acute form can cause pain in the breast, significant hardening, and inflammation.

Treatments for fibrosis are lacking, with the primary treatment being hyperbaric oxygen therapy. The combination of Trental & Vitamin E has been used with success in Europe and at the University of Iowa.

The focus of this study is to prevent fibrosis through intervention with Trental & Vitamin E. The study has two arms, a control arm and an intervention arm. The study is not blinded. Measurements are taken at standard follow-up visits to measure breast density and lymphedema.

I checked and the trial is closed, but they just published the data and it looks promising:

http://www.ncbi.nlm.nih.gov/pubmed?term=22846413

No one can make a diagnosis over the internet, but anything that blocks lymph flow could make LE worse, and chemo can make LE worse.

Makes sense that you're feeling unhealthy right now, in the midst of all this treatment. It sure does beat you up. There was a recent article in the NCI bulletin that chemo works through the mitochondria, and that could explain a lot of the side effects:

http://www.cancer.gov/ncicancerbulletin/010813/page6

LE can sure make you feel lousy, and it has been linked to inflammation, and just recently, Stanley Rockson of Stanford found that blood biomarkers of inflammation and fat deposition can predict and diagnose LE:

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0052021

Lots of information, it may not all be pertinent for you, but just some ideas.

I used to work for a radiation oncology group and saw a lot of LE, especially in people who got rads to the axilla and supraclavicular nodes, and it would tend to be worse at first.

Binney always says "treat the cancer first, and deal with the LE later" and it sounds like you're doing both.

Kira

gobucks

Well I did fight LE while going through treatment.

I understand what Binney said, however I feel like I should be done my fight. You know what I mean? I want to be healthy. I'm active, I do everything correct, and I'm in a bad flare (more than any young girl that I know and talk to...I mentor and support). Seriously, if they told me to stand on my head for 5 hours a day I would. When they told me during my first flare that I could be bandaged 23 of 24 hours, I did it.

Just rough. I want to stop fighting and start living

kira66715

Gobucks, it's SO frustrating. Especially when you're compliant--extremely compliant--and your LE doesn't respond.

One of the posters on this thread, also amazingly compliant--she had a very rough time for a while, but excellent therapists, and a great rehab doctor helped get her to the point where she didn't have to wrap 24/7--and she did it for many months.

LE sucks.

Sometimes a LE doctor can help, there are very few of them, but it may be worth a try. I don't know of any in Maryland, but perhaps other people do.

KS1

Dear gobucks ... I am so sorry to hear how you have been struggling with LE and a recurrence.  LE is no good horrible rotten stuff, and a bad stubborn flare can really take over your life and make it seem small and bleak.  

Extended periods of bandaging is not fun, but maybe there are ways to make it better.  Think about what you dislike most about the act of wrapping and of being bandaged.  Are there any things you could do that would make it less bad?  (e.g., I realized that one of the things I found most aversive about wrapping was folding and rolling the finger wraps while bandaged, so I convinced my husband to do that.) 

I had a terrible flare about a year ago and many times I thought I would never get back into day garments.   It took a good 3 or 4 months of 23+/7 wrapping before there was any sign of improvement, and it was 9 months before I got back into day garments.

My hand was particularly stubborn, reswelling as soon as I removed the bandages.  At Kira's suggestion, I started doing MLD with my fingers gauze wrapped, which meant that my hand was compressed all but 15 minutes a day.  My intuition is that that was one of the turning points.

I also found using 3 rolls of gauze on my hands but wrapping less tightly worked better than the standard 2 rolls. I also noticed that my hand did better when I used brand new gauze, so I started using new gauze every day. (It works out to $1.50/day for gauze.) 

Lastly, I made the transition from wrapping to day garments slowly, starting with 22 hours wrapped, 2 hours in garments slowly building up. Now, I can wear garments 8-10 hours most days.