Arimidex - Coping with the SE's

purple32

kjiliberty

You have the right attitude ...just holding your son. Time/life is so precious and because of our DX , we all know this in a way that was not so " up front' and personal before. Tears are okay at weddings.  In fact, they are mandatory for mother of the bride or groom so bring your tissues .

  IMHO, I would let your son choose the song.  It will be HIS memory, and I believe it will be all the more meaningful for him.

CONGRATS to you !

Moonflwr912

My son chose the song for mother son dance, and I don't remember what it was! I do remember him telling me he loved me and was grateful he had me as a mom and we both cried. what a lovely memory. BTW, he does remember the song, so it meant something to him. Just a perfectly lovely moment. That's what counts. Much love.

purple32

"I do remember him telling me he loved me and was grateful he had me as a mom and we both cried. what a lovely memory"

Yep, thats the ticket, not the music , but what the music evokes,

patty9999

I've been reading for weeks now and trying to get ideas on how to curb some of the side effects.  Mostly for me it's the joint pain and stiffness after being still for a while.  I do have night sweats sometimes.  Trying to determine if it's something I eat during the day that triggers it only on certain nights.

Anyway, a few questions.  I read that some of you have had success with sage tea.  So, went to my health food store yesterday and bought some.  The salesgirl is also going through treatments and having se's from tamoxifen.  She recommended New Chapter's Zyflamend Breast.   Said she's been feeling better since she started it.  I went ahead and bought some.  I did some searches here and some recommended if you are ER+ not to take this.  Does anyone know why?  It doesn't have black cohosh or anything else I remember I shouldn't take.

I may just use the sage tea and then ask my onc when I see her in January.  Although, if I could get the benefits now it would be great.

I'm curious on the foot pain issues, too.  I've never had plantar fascitis (sp??) until after radiation finished.  Had started Arimedex in Nov 2010, finished rads Feb 2011.  I finally got it cleared up after going to a podiatrist and getting treatment from him.  But, now it's back again.  Is it the Arimedex that causes it?

And, just curious about another thing.  When I get up in the morning, it's not so much the stiff joints as my feet just don't want to work.  Swollen??  Achy???  Numb???  I can't describe it.  Just don't work until I've gotten to the bathroom and then I'm pretty much okay getting back to bed.  What is that all about?  Is it that the meds pool in the ends of our limbs?  I have that problem with Levaquin I was given years ago.  It was probably 10 years ago and had finally gotten so as long as I didn't eat salty foods, I wasn't having the issue.  But, it seems to be back now.  Swollen, numb toes at times.  And, waking up with swollen hands.  I have to remove my ring before going to bed or it won't come off in the morning.

Sorry to be rambling.  Just what I've been thinking about as I've been reading the posts that past few weeks.

Patty

ananda8

My achey feet turned out to be mild dehydration.

schatzi14

patty...is it possible that you have LE in your arm/hand? It is possible I guess as I can see that you had one node removed. As for the morning aches, I had that even before starting Arimidex. Do you take Claritin? Even tho my MO doesn't recommend it, I was taking it for weeks with no pain. I eventually tapered off and my aches and pains are bad today so tomorrow I will start it again.

As for the numb toes, did you take Taxol with chemo? I know that can cause neuropathy in fingers and toes. I have a slight case in both feet but it isn't bad at all....just ever present! Some people get really sore hands and feet with it, so I am very grateful.

nancym712

I misspoke the Evening Primrose Oil is to get more Omega 3s (or is it 9s, whatever Fish Oil is'nt).

Sage tea is for night sweats. Both can be purchased at a good health food store.  I got my Evening Primrose Oil from the naturopath but my compunding pharmacy also carries it.

nancym712

My beautiful daughter picked a song for me that we danced to at her wedding reception.  I was very teary eyed. Such a beautiful day.  I watch her wedding slide show at least once a week and get teary every time.

Our children need these memories.

Anonymous

Do many of you suffer from insomnia with arimidex? What do you do for it? I already take 5mg of melatonin. I'm starting it this week and I want to be prepared. Going to Walmart for Claritin tomorrow.



Ruthbru~I love dried prunes, but know that too many can work against you. How many are too many? I'm sure everyone's system is different, but I just want a general idea.



I've been reading this thread, but I'm sure I've missed some things.



All advice will be appreciated.



Blessings

Paula

nancym712

I didn't fully answer a question.  I answered wherer I get the Evening Primrose Oil but not how I use it.

The EPO is just a pill that looks like a vitamin E pill, just lighter in color.  I take one, three times a day.  The sage tea is just a tea bag and I make a cup of 6oz of tea and drink it before bed. 

Melatonin:  up to 18 mg at bedtime for sleep and breast health.  I asked how to determine dosage and the naturopath said to increase by 3 mg until I'm groggy in the AM then decrease the dose by 3 mg.  I'm sleeping so much better since the sage tea and melatonin. The acupuncture will definitely help too as I've had acupuncture for sleep before.

nancym712

I bet the foot ache is from Arimidex.  I didn't have any foot pain during my first 4 months of Arimidex, just some increase in the achiness I already had around the hip area.  Went on a nine week vacation (med vacation too) where I rode my motorcycle for almost 9000 miles.  The finger I dislocated playing softball 35 years ago started to ache so I know the constant riding was taking it's toll on my body.  When I came home I went back on Arimidex.  All my fingers ache and the previously dislocated one is not getting better.  Also I started with the foot aches. I feel like Herman Munster when I first stand up and try to walk but by the time I get to the bathroom I'm walking normally though my feet still ache.  I'm thinking I stressed my feet out on vacation (feet on footpegs for 9000 miles).  I don't think this is coincidence.  Claritin seems to help a little and the acupuncture definitely helped. I hate AI

And thanks to the person who directed me to the Scream Cream thread.  Will be looking into that asap. 

Purple32, I will change oncologists and if I can find an oncologist who is willing to work with me on traditional as well as complementary methods, I'll drive to Boston.  Besides, most of my motorcycle riding friends live in the Boston area so I already have lots of excuses to go there.  I'm not adverse to combining a trip to the oncologist with visiting with friends. :-)  

purple32

I'm not adverse to combining a trip to the oncologist with visiting with friends. :-)  

Sounds good, Nancy!  :>)

ruthbru

I eat a serving of dried prunes a day, which is 5 or 6 of them.

Are you taking Arimidex at night? If so, and you are having insomina, you might want to switch it to the morning and see if it makes a difference.

purple32

PATTY

RE" I did some searches here and some recommended if you are ER+ not to take this.  Does anyone know why?  It doesn't have black cohosh or anything else I remember I shouldn't take.I may just use the sage tea and then ask my onc when I see her in January."

May I suggest that you cut copy paste your post on the alternative TX  thread? The ladies there have been researching for weeks months and even years and many have seen lots of naturopaths etc .. Before you take anything that *might* make things worse, it may be worth posting.

~Just a suggestion.

208sandy

Or, just another suggestion - call your Dr.!

patty9999

Thanks for the replies.  I doubt it's dehydration.  I drink a ton of water every day.  And, I wouldn't think it's lymphedema.  Only because once I'm up and moving about it goes away.  I had been taking loratadine for allergies.  But, switched to Claritin (non-generic loratadine) on my allergists recommendation two weeks ago.  Haven't really noticed a difference. 

I didn't take Taxol.  I know that I've been borderline prediabetic for a few years now.  Maybe that's it for the numbness.  My PCP will be testing again in a few months.  I know that exercising should help with the joint aches.  But, it seems the more I do, the more I ache from the PF.  The podiatrist had recommended keeping off my feet when the PF was there.  I could go to the gym and ride the bike or do weights.  Just can't get motivated to go.

I will share my post in the alternative TX thread about the Zyflamend.  And, that's true.  I could call my doc and not wait.

Patty

p.s.  I've been taking Evening Primrose Oil for years on the recommendation of my local onc.  That was for cysts that I'm very prone to.  Whenever I quit taking it, I'd end up with one getting large and needing to be drained.

Anonymous

Ruthbru~thank you! I'm not starting arimidex until Tuesday. It should be delivered tomorrow(Monday). I'm just trying to get my ducks in a row.



Did you have insomnia?



Blessings

Paula

ruthbru

Oh Geez, I have ALWAYS had insomnia!!!! No better, no worse on Arimidex.

Wren44

Arimidex made me so sleepy I couldn't keep my eyes open. I had to take it at night so I could function during the day. I've always had a little mild insomnia and it was not made worse by the AI.

Chris13

Okay, this is not really an SE issue...I've taken aromatase 2 months before surgery and about 6 weeks so far after recuperation and Oncotyping...and don't have anything severe so far. *hopeful sighs*

But I will meeting my MO tomorrow (saw her briefly after surgery then after the 1st oncoscore came in) and expect to have much more to talk about tomorrow. Both oncotypes are low so no chemo. (She recommended it after the first one of 8! Went to tumor board, 2nd tumor tested 16.)

Am I missing anything:

listing my supplements (thanks to everyone here for the great ideas on those)

how often DEXA, mammos, blood work (need D3 tested, others?)

 Thanks for any ideas!

schatzi14

Hi Chris...I am a little confused but then that is nothing new for me. I was under the impression that chemo was necessary when there was ANY node involvement. How do they know that it hasn't spread if one node was involved?

I can see perhaps at LEAST rads! As far as mammos, I think most MOs recommend it at least once a year and bone density every so often. I know where I live it is not yearly for osteopenia, perhaps so for osteoporosis. I have always had yearly blood tests so they are no biggie for me altho I did have him check my Vit D.

If I am mistaken about any of this, someone (or two LOL) will correct me or add something to the mix.

Chris13

Hi, They don't do rads when there is a mast. Nothing to radiate, I guess. And it is a judgement call when a node is involved...in my case they were very surprised since they knew I had supposedly slow-growing lobular cancer. But oncotyping is to help decide if chemo would help. In my case, despite the node, the 8 score showed (with an antihormonal, they actually used tamoxifen for the studies) a 5% risk of recurrence. Chemo would have reduced it to ????. The 2nd tumor would have approx. 10% risk of recurrence. Women in general have a 1 in 10% chance of BC, excluding additional risks such as the BRACA gene, which I don't  have.

 That's a good question about the nodes, however. They removed 4 SNs. I wonder if I had others, I just assumed that was all. The cancer was also just a tad over what they call "micromets" in the node, so borderline there as well. Only found in pathology, since the MRI didn't show it.

schatzi14

Hi again...I didn't have a MRI but my one node was a small amount as well. In fact the RO thought rads would be enough but the MO disagreed. I figured I would take everything and anything available to cut my chances of recurrence. I just had a lumpectomy, chemo and rads.

So far, so good...my first mammo was clear on both sides...well "normal" the MO said. As you can see by my profile, I had 1/4 nodes involved. I often wonder if they checked enough nodes. it's a crap shoot for sure.

Chris13

I think the grades of the tumor (how aggressive) also make a difference. Hope I'm not passing on inaccurate info here, so correct me ladies, if necessary!

prayrv

Chris,

There are cases where if you have a mast, one does get rads.  I'm one of those.  There is always some breast tissue left as they cannot scrape all the cells out and my margins were not great, so I had rads after my mast with te's in place.  My plastic surgeon wasn't pleased, but better safer than sorry.  I did not have chemo and oncotype was a 12. 

Trish

Rocket

I had a mastectomy (bi-lateral) and required rads because I had a clean, but close margin of 2mm. I also had a low Oncotype score, but with three tumors, they recommended chemo. Everyone is different and so are the various recommended treatments.

Anonymous

The arimidex landed in my mailbox in this mornings mail. I guess I'll start tomorrow so I can take it in the am. Im hoping to avoid insomnia by taking it earlier. On my way to Walmart now to get Claritin, prunes, & anti-diarrhea meds. I may not need any of these, but DH told me to be a girl scout. ( be prepared )



DH gets very very uncomfortable when I even mention BC. His way of dealing with this kind of thing is to ignore it til it goes away. I'm hoping he comes around once I have surgery. He is very caring & helpful when I'm sick. Thing is I never get sick enough to lie around. I keep on going even on that rare occasion that I do get sick, but if he has a sniffle, he has to o to bed and be babied. I think that's the way with most men. Go figure!



Blessings

Paula

Gayle56

I started Arimidex a week ago and am not having a sleeping issue but have noticed since starting it I am dreaming a lot more.  Has anyone had this happen?

Gayle

Chris13

I guess I can ask my BS about margins when I have a followup next month (and will ask the MO.) My understanding is that's it's rare for cancer to reoccur in mast site with good margins, but it happens. MY BS was emphatic no rads, so I guess she was pretty sure she got it all. Of course cells can remain. Hopefully the AI will keep them at bay.

 Yikes, more to worry about. (And ILC is "sneaky.")

schatzi14

Chris....now you can understand the phrase "a little knowledge is dangerous"....it gets you wondering and maybe that is not always a good thing. Even the "experts" can't agree...just have to go with your gut!

Gayle....now that you mention it....the other night I was dreaming I was sharing a bed with my Sister-in-Law (and we are not very close) and a skunk walked on top of me and stuck his nose in my face...I woke up wondering how to get the heck out of bed without him letting loose! The funny thing is I had been thinking about the skunks digging grubs out of my lawn. Every morning I have to replace the divots!

I seem to be having a lot of really strange dreams lately!