arimidex and shortness of breath

maria26

Hi everyone,

Have lurked for a while but this is my first post.  I was diagnosed feb. 2013 with 1cm stage 1 grade 2 idc, snb 4 all clear no vascular invasion, clear margins.

Had lumpectomy and then 15 rads, then arimidex for 5 years.  First 4 months great no side effects then wham digestive problems, nausea abdominal pains, then upper right back pain, now extreme fatigue and shortness of breath.  It feels like a band round my middle as if I cannot get a good breath, funnily joint pain is not a problem yet but I do suffer with arthritis anyway and perhaps dont notice so much as you get used to hurting.

By far the worst is the breathing problem.  I have had so many tests, chest x rays, thoracic spine mri, abdominal  ultrasound transvaginal ultrasound, ecg, numerous blood tests, upper g.i. endoscopy etc.etc.

Oxygsn sats 100, so as you  an imagine the drs think anxiety which I can understand but I know I was not anxious till all this started.  I have made contact thru bc.org with a lovely lady in the states, I live in u.k., who had this breathing prob. On tamox. Which resolved when she stopped it.  I just wondered if anyone else has had this with arimidex.

The oncs. Dont like you having more than 2 weeks break here which I dont think is long enough.  Does anyone know how safe is the longest time to be off the als.  My q.o.l is poor  but I want to keep on arimidex as it is supposedly the best one to take for me anyway.  Cannot keep running round  testing every part of my body worrying its mets everytime a new symptom appears apart from anything else the stress of waiting for results and the  cost as we paid because it takes ages on the n.h.s makes it impractical.

I know I am lucky to get arimidex and not a generic free of charge here and I know they will change the tablet it needed but arent all als much the same.  The breathing problem is not  constant and varies in severity.  Even went to a & e and they did tests and listened to my chest and said no fluid, I have no cough now but had a mucousy one for ages but I am asthmatic though this s.o.b. is different.  I think if the tiredness went I could cops better.  I am 62 by the way but feel 92.

Thanks 

Maria

maria26

Please anyone some advice, I know you ladies are great out there

Maria

SusanAnn

Hi Maria have you had a CT Scan of your chest area?

maria26

Thanks for replying susanann,

No that is the only thing I have not had.  Whole business is so scary.

I am so sorry you had recurrence, do you mind me asking your grade.  Just proves stage 1 does not mean you can be complacent.  This is why I worry.

I wanted a ct scan but onc says they dont do them unnecessarily.  So guess we will have to pay ourselves.

You say you are stage 3 so were your mets in your nodes only

Regards

Maria

MaxineO

Hi maria26

I am on arimidex and have some issues with shortness of breath. It isn't constant, but in the grips of a hot flash, I have extreme shortness of breath, heart palpitations, anxiety, and, of course, HEAT.  

Is your shortness of breath constant? Do you ever have relief from it?  I was on tamoxifen for 2 years and then switched to arimidex; it's hard to differentiate side effects as a result, but I know that arimidex made my joint pain just terrible...and it took a couple of months for that to kick in.  Also, another tamox side effect (leg cramps), did stop pretty much, but it took a couple of months...all of that is to say that it can take several months for side effects to kick in.

I hear you. I feel 30 years older than I am, thanks to the hormone meds. But like you, I am determined to do what I can to keep BC away.  Sending you support and hoping for some relief for you!

SusanAnn

Maria I am now Stage IIIC.  I was having exactly the same issues as you including extreme fatigue and shortness of breath.  I also went through extensive testing thinking I had either a lung problem or a heart problem.  I ended up with a lung specialist who put me through more testing.  Long story short, she asked me to do a CT Scan on my chest area and it showed my left internal mammary nodes, left retrosternal node and a new retrosternal node with progression.I also have a supraclavicular node on the left side of my neck which I can feel. There is also progression on the chest wall where the original tumor was. A biopsy determined that it was a recurrence.  

I do know that many people do have similar side effects on Arimidex, especially fatigue. You might give yourself a little more time to adjust to Arimidex as the side effects can be different for everyone. Can they switch you to something else to see if things improve? Please let me know how you are doing and if I can be of help, don't hesitate to ask. There are many ladies on here that might have a similar experience. Its gets a bit slow over the weekend. If the anxiety becomes too much (believe me I know), perhaps you can push for a CT Scan.

maria26

Hi,

Thanks for replying,

Susanann, yes I am considering changing to another al as I have so many ses and no qol.  Sorry about your recurrence, especially after all you went through with mast. And chemo.

I just had lumpectomy and rads.  Why did you have such extensive treatment with a small stage 1 tumour.  Were you a grade 3 I see you had no nodes involved and were not her2 pos.  

I hope you are doing better now .

Maxine 0,

My levels of shortness breath vary and i am sure it is the arimidex I also get palps.  Hard to tell what is s.e. and what is anxiety.

Its a year since dx for me and every pain I think is a met.

Thank you for your help its good to know I am not alone.

Maria

SusanAnn

Maria, it was multifocal invasive ductal carcinoma, grade 2.  A lumpectomy was not possible.  My oncologist decided that we needed to throw everything at it to prevent a recurrance.  My oncotype recurrance score was very high at 42. I am currently taking part in a research study (Palbociclib and Fulvestrant) which has kept me stable. 

Hope you feel better soon!

Susan