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Old 10-03-2014, 02:21 PM   #1
Lucy
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Questions about Anastrozole and Neuropathy (as separate issues)

To give a little background on me, I was diagnosed with Stage 1A HER2 positive breast cancer back in January of this year. I opted to have a double mastectomy and was told chemo and herceptin would be part of my treatment plan. I finished chemo on September 3rd (yay!) and have 8 more months of herceptin. I was told that I was considered cancer free after the surgery and that the chemo / herceptin was a proactive measure to improve my odds that I wouldn't have a recurrence.

During my first visit post chemo my doctor prescribed anastrozole for me based on a new recommendation that anyone producing any hormones receive hormone suppressing drugs. A year or so ago I wouldn't have been prescribed this drug so I had a discussion with my doctor regarding the benefits of me taking it now. My understanding - from my doctor - is that there are no proven benefits to someone in my situation taking this drug, yet she still recommends I take it. I'm reluctant to take it - and in fact I haven't taken any yet. I read the possible side effects given to me by my doctor and from the pharmacist where I had it filled and am even more reluctant to take it. My question is has anyone taken this drug? If so, what can you tell me about the side effects, if any? Would it be worth me taking?

As for the neuropathy, I've had the numbness in my hands and feet (predominantly on my right side - don't know if there's anything significant in that or not?) but I also have had some significant weakness in my legs and some weakness in my arms. My doctor says she's never seen this be permanent but I was wondering if anyone else had experienced the muscle weakness. And if so, how long before you got your strength back? I've been off chemo for a month and while it seems to be getting a little better (some days are better than others though), I was hoping I would be doing a lot better by now. I started physical therapy yesterday and am hopeful it will jump start improvement. I don't know if it makes a difference but the numbness started around 3 weeks into the Taxol and the muscle weakness started around 7 weeks (my doctor asked me if I needed to discontinue chemo at that point but I only had 4 more treatments left and I decided to push through them so that I got all the treatments).

Any insights into these matters would be greatly appreciated. Thanks.
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Old 10-03-2014, 03:11 PM   #2
eva9310
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

I don't know anything about the weakness but my neuropathy is more predominant on my right side and I will say I've heard of several people with permanent damage. If you take a break or stop treatment it can be reversible, sometimes it can be permanent if it's taken too long.

I posted yesterday about stopping. There is nothing to prove, my docs know what's best and if they say stop I need to listen to them.

I was worried I would be forced to do radiation if I had anything less than a complete pathological response but I can't make decisions based on that. I would be very unhappy if my symptoms never went away, they are miserable to me!!

As for the other drug, I don't know what that is. I am ER/PR negative so if it's a hormone drug, that wouldn't be offered to me.

I too am having a double mastectomy with impacts because I don't have enough tissue to do DIEP, maybe when I replace these implants I can do it then.

Hope this was helpful to some degree.

Eva
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Eva

Age 41: IDC Stage 2B - Left Breast Only
Two tumors 4.5 CM & 2 CM, 2 Nodes Positive
ER/PR Negative, Her2 Positive, Ki-67-80%
DX - Early May 2014, MD Anderson
A/C X4 Chemo Started May 28, 2014 - Done!
Ultrasound after A/C shows small tumor gone, Nodes Clear!
Taxol x 12 Weeks - Halfway Done!
Herceptin & Perjeta X 4 With Taxol - Halfway Done!
Herceptin X 9 months every 3 weeks after surgery
Double Mastectomy w/ Tissue Exp 11/15/14
Will wait for pathology report to determine rads! Hopefully not!
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Old 11-26-2014, 07:02 PM   #3
Lucy
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

I wanted to bring this back to the top in hopes that someone will comment on it. I have an appointment with my doctor next Wednesday and will be discussing it with her. I still haven't taken any of the anastrozole and was hoping someone may have taken or been prescribed it and could give me some insight into it before I meet with my doctor next week. Any insights would be greatly appreciated. Thanks.

As for the muscle weakness, it's tons better but still not 100%. I've found that yoga helped significantly more than the physical therapy did.
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Old 11-29-2014, 09:47 AM   #4
Carol Ann
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

Hi Lucy, yes i have been on it (Arimidex/Anastrozole) since April. I had 2 Stage 1A tumors (one in each breast, see my signature) and they were both Estrogen positive. I have had some joint pain and a few hot flashes each day but that is it.

With tumors in each breast I want to up my odds of nonrecurrence/nonmetastasis as much as possible, so I can handle a little joint pain and hot flashes.

I am doing my best to walk every day (Leslie Sansone walking dvd) I do also have some lingering neuropathy in my feet, but the indoor walking really helps alot with the joint aches.

Why not try it and see how it makes you feel? You can always stop taking it or switch to another Aromatase Inhibitor. HER2 is a sneaky beast. I also take Fosamax once a week for my bones and haven't had any side efeects from that at all that I can tell.

In the end, YOU have to comfortable with whatever you decide ... hope my experience helps!

Carol Ann
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July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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Old 11-30-2014, 09:37 AM   #5
Debbie L.
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

Good questions, Lucy.

I don't remember the particulars of your cancer's ERPR status, but am assuming from what you say that it was low, but not totally negative? Where was the testing done? If there is ANY doubt about the reliability of the results (if it was done at a community hospital), I'd recommend sending it for a second opinion at a reputable (for example, Comprehensive Cancer Center) lab. I'll put my signature below with details, but I was browbeaten into taking Arimidex/anastrazole for 2 years for the low levels of ERPR that were reported by my community hospital. Like you, I had the filled prescription in my possession for quite awhile before I actually took the darn pill. My onc at the time said "it might give you a small edge, and you need every edge you can get". Then, eventually, I sent my slides/tumor block to Baylor where it tested totally negative (so I'd taken the Arimidex and experienced the side effects all for nothing). It's easy to get another opinion -- you can ask your surgeon or onc to do it for you, or you can do it yourself (contact the facility, get your samples from the lab, and send them yourself -- that's what I did).

As for the neuropathy, as others have said -- that varies so much that it's impossible to predict how it will play out for you individually. Many experience some neuropathy during treatment, and for some it resolves completely while for others it persists. There are drugs to help with it if it is an ongoing problem (neurontin and others in that class). Most of them seem to have the side effect of some sedation at first, but most people report that as their body adjusts, the sedation problem resolves.

The muscle weakness is a separate issue, I believe. Back in 2001 when I complained about it, I got blank looks. But I've seen a few bits of research since then -- when they look hard, they can see that there are changes in the muscles due to some chemos. For me, this problem slowly resolved, once I was done with chemo. I hope it's the same for you. I remember it being so bad that I felt like I could never really get any aerobic exercise -- because the muscles, especially thigh muscles, were so weak at times that I couldn't walk/hike fast enough to get my heart rate up.

I agree with you about the benefit of yoga. It helps on many fronts, but especially (for me), it helped with the aches from the AI.

Debbie Laxague
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 11-30-2014, 10:11 AM   #6
Lucy
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

Thanks ladies for the good information.

Yes Debbie, my levels were low (7%). I was told that up to a year ago the drug was given to those with 10% or greater. Less than that it was considered unnecessary. I asked my doctor about this when she prescribed it and she said that it was true but that new guidelines indicated that anyone with any hormone levels should take it, so she was recommending it to me.

I don't want to miss any opportunity offered to keep a recurrence or spread of the cancer away but I also don't want to experience long term side effects if I can avoid it. My tests were initially done at my local hospital but then transferred to MD Anderson in Houston. I do know that they did their own independent tests to confirm HER2+ but I have no idea if they confirmed the hormone levels. Guess that's another question for Wednesday.

As for the muscle weakness, I never in a million years thought it was chemo related but I told the nurse about is so that they would know everything going on with my body. She was like "yeah, that's the chemo". When I asked her why this wasn't in the possible side effects she said they waited to see if the patients mentioned them. I really went off on her because I had had eye surgery a week before I started chemo (with all my doctor's knowledge and consent) and no one had thought it was important to mention that the chemo can mess with your vision . . . I'd thought the surgery had gone wrong, until they told me it was chemo related. Normally I would feel bad about going off on someone like I did but this was the same nurse who told me she didn't feel my vomiting was chemo related . . . it was probably just stress. (picture me rolling my eyes here)
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Old 11-30-2014, 12:52 PM   #7
Becky
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

One thing to consider if your cancer was slightly hormone positive is to at least take it while you are still on the Herceptin. Here is my logic for saying so...

7% of the cancer cells in your tumor were hormone positive and the Arimidex will shutdown those while the Herceptin will shutdown those that are Her2+ (and possibly also hormone positive - what I mean by this is that some of the cells may be both Her2+ and ER+). If Arimidex doesn't affect you (it doesn't affect me as in joint pain), then you can decide if you want to continue on it after your final 8 months of Herceptin is over. At least you are shutting down everything at once and not giving the ER+ cells a chance to grow if anything is even left in your body (its the one thing you don't know - everything is probably dead and gone but it is the mystery on if everything is gone).

It is the one thing to think about - shutting down both receptors since, theoretically, they both existed.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 11-30-2014, 12:54 PM   #8
Becky
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Re: Questions about Anastrozole and Neuropathy (as separate issues)

Also, the neuropathy - this happens from the Taxotere in the chemo part of your treatment. It can take over a year for this to go away and it probably will. It just takes time. My feet bothered me for almost 2 years but they are perfectly fine now.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 16 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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