Lill

Hi Audio,

Loved your comments.  I think you're right...the doctor's don't know how intense the pain is!  It was literally crippling my hands, not just some little ache.  Physical therapy wouldn't have helped.  I actually had a knot that came up on the inside of my right wrist...really bony, pointed and hard.  My surgeon was surprised.  I had one radiation oncologist who thought I should go see a  rheumatologist.  Great. Once I was off the Arimidex for a month, it finally went away.  Now I'm waiting for the pain in my left to quit, and then I will start the Aromasin.

Was the pain with the Arimidex worse?  How does the Aromasin compare?  I am curious to know...thanks. 

Nancy 

Hi Adele,

I started Arimidex in mid November. At first, no issues.  Then within a few weeks, I was getting a lot of numbness in my hands, which I attributed to the Taxol. I did have stiffness upon getting up, but that worked itself out.  I did have some pains in my upper arms.

Now, in February, my wrists became excruciatingly painful.  I've had a knee replacement, so I'm no stranger to pain, but this was something else! It grew into weakness, with swelling. It seemed to center around the bony process on the inner surface, and between the wrist and hand.  I could barely put dishes away, carry a plate with food on it, do laundry, anything. Then it started to migrate up into my hands.  My radiation Onc took me off of it on 3/7 to see if it made a difference.

I still have wrist pain that varies, pain in the back of my hands, and pain using my thumbs.  It also seems to be migrating up my arms slightly.

It was basically crippling my hands.  My passion is gardening, and this cannot be.  I will lose my mind....I am hoping to try another AI to see if I tolerate it better, but now I see why some women (from what I've read) go off of their meds.  Hot flashes are totally tolerable compared to this!

Thanks for taking the survey.  Let us know what happens.

Nancy 

Hi One2beamup,

I am jumping on board, too.  I had neo-adjuvant chemo, and am very happy that I did.  My tumor was large (>5 cm), was IDC, and I showed signs of IBC.

I had an MRI prior to chemo.  After chemo (4 AC, 4 Taxol), the MRI couldn't find the tumor.  Pretty amazing, and a very responsive result.  The cells were still there, but didn't show up.  After surgery, they only found a small core still remaining, and micro cells in 4 lymphs.  If I didn't have neo-adjuvant, I would not be able to have reconstruction.  My surgeon specializes in breast cancer surgery, and stated that they are doing this more frequently, as they can see if there is a good response to chemo or not. I'm glad you're getting a second opinion.  Knowledge is power.  I wish you the best!  Live long and prosper....

Nancy 

(Grade 2-3, and IBC, too) 

Jackie, Sue Ellen & Candy,

I had my expander overfilled (I think it's 650 or 700cc +/-) by my PS, because he told me that the radiation would "shrink wrap"  the skin, and that this needed to be done for a good result with the surgery.  However, when I saw the radiation onc prior to completing my fills, it sounded like she wanted him to stop right after the drain came out.  I'm confused. Does having a fully filled expander affect the benefits of the radiation treatments?  I had my CT scan and tatoos 2 1/2 weeks ago and am waiting to start my first treatment. I hope that it is this week, as I now have been diagnosed with IBC.  Please let me know about the possibility of "deflating" the expander.  I absolutely don't want to go through stretching again.  I haven't stopped hurting...I was getting 100 cc once a week so we could get started with radiation ASAP...Thanks......Nancy

Hi Mel,

The journey has been interesting, but I have faith in my team of doctors.  I wish you could find some good ones!  The second MRI was done to see how the tumor in the left reacted to the chemo, and to make sure that my right breast was clear after lumpectomy.  The tumor in the left was large, over 5 cm, and when I had the second MRI, the machine didn't see it. It confused me, because you could still see it on ultrasound. The cells were technically dead from chemo, and that's why they didn't show on MRI.  That meant that I had a really good chemo response! The chemo was done first because of the skin and the size of the tumor.  My skin looked flushed, and when I looked at it up close, I believe it was from capillaries too.  My tumor (IDC) was close to the skin, and maybe that's why it became inflammatory?  I don't know.  I haven't done any reading on it yet, but plan on checking out the IBC site some more.  I wish you could find someone who is familiar with it, and will believe you.  Did you call the American Cancer Society in your area to see if they know?  Have they done ultrasound?

Hugs to you, and don't give up!!  Be a stubbornhead!

Nancy 

Hi Ladies,

I have the same question as Lizyeh.  Can you have your teeth cleaned or a pap during radiation?  Also, what are the actual benefits from the Curcurmin? I know some other ladies who are interested in it.

I had my CT scan for measurements yesterday, with three little tattoos.  Not bad at all.  Will start actual treatment within 2 weeks for 6 weeks.

Does anyone think that aloe is better than Aquaphor, or the other way around?  I have an expander in, and my PS told me to start using something ASAP, even prior to the rads.  Thanks in advance for your answers.

Hey Donna, I'm a garden girl too!    Nancy 

Hi Sunneedazee.....the expander is OK right now; it was just installed on 11/5. I expect the filling to start in a week or two.  It is pretty uncomfortable, but some of that might be from the lymph node dissection.  We will see once they begin to "pump me up"!

Hope you had a nice holiday....... 

Hi Mary Anne,

Thank you for your welcome note.  It's good to hear from another like me.

I meant to say mammaplasty (minimization) on my right, not mastopexy.

They removed about 2/3 of my right. According to my bone scan, I have arthritis in my shoulders and my sternum!  That's obviously from carrying the weight around all these years....Now the right can match the left once the implant has been finished.  You know, my tumor was approximately 4 cm x 6 cm x 5.5 cm, and no one felt it: not my primary, not my gyno, not me, not my surgeon, right up until the moment he removed the breast.  Pretty scary.  You try to do everything right, and it can still sneak up on you!  Anyways, you sound so positive and like you are doing well.  I'm looking forward to future communications!  Happy Thanksgiving!! 

Alaina, thanks for your info.  I appreciate it...enjoy your holiday!

Hi Ladies,

I'm new to this group, and would like to be added to your list.  It's very comforting to read all your comments, and I wish you all the best with your surgeries.  I had mastectomy on the left and mastopexy on the right on 11/5, with an expander on the left.  I still have one drain in.  They dissected 14 nodes; 4 positive. Nuclear Grade 2-3... I had chemo first, as the tumor was big, and very glad that they did that in that order. 4 AC and 4 Taxol, chemo every two weeks with Neulasta injections on Day 3.  Just started Arimidex 4 days ago.  Had my ovaries out on 4/20 prior to my breast CA diagnosis on 5/21....turned out to be a good thing(ER/PR+)!!

I will need radiation, but apparently need to go through expansion (over-expansion?) prior to it.  Does anyone have experience with radiation and implants?

Thanks, and looking forward to your comments!

Gardengirl5