Arimidex - Coping with the SE's
Comments
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LOL on the greying schatzi, my thoughts too. When it comes it comes and too bad. At the end of the matter we do what we gotta do to beat this monster and sometimes that includes getting a bit ranty lol. When I've finshed my lil moans and groans I really am grateful to still be alive and to cherish each day with my beloved other 1/2. Oh yeah core biopsies awwww not fun.
Just about as bad as some irresponsible incompetent doctor trying to find a vein in your foot and stabbing and poking and turning etc etc . Can't say I'm very nice to know after that experience.0 -
ROFL...yeah guess we've all been there. I am just happy that so far I don't get depressed...maybe a tad PO'd but what the heck...
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schatz I see you are PR- like me. Someone said the other day (somewhere on here) that theres not many of us in this category. Did you have it explained to you anything about the PR status?
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musical...not a word and I never thought to ask...I am only 1.5% ER+ and he STILL wants me to take the Al for 5 years anyways...seems overkill to me!
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Schatzi this % age thing has and still baffles me. My med team said to me it doesn't matter how much % age you are it makes no difference, yet others frequently say or intimate on this board that the more % age you are the more beneficial....so it's still something I don't "get". Apparently I'm 30%. ER+.
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musical...I don't get it either except if it's like being "a little bit pregnant"!
The more I hear, the less I understand. BTW...are you in the USA?
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No, Im in New Zealand
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DUH...of course you are...see what I mean about my memory? We already HAD this discussion! I tell ya I am losing it!
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LOL LOL schatzi you make me feel a whole lot better... I thought I was the only one who did that
. It's so neat to know we are not the only ones. Anywayz yo've got more of an excuse than me. Youve got around a decade on me. 0 -
Well it's a handy excuse for sure LOL
I need to check my path report to see if I am stage lla or llb...my MO never mentioned it. He wasn't really forthcoming about most of my results. He actually had me take a dose dense of AC and I got a pulmonary embolism and was in a wheelchair until he finally admitted perhaps "WE are being a little too ambitious"!!
WE??? WE?? pfffffffffft He stopped that after the 3rd dose and put me on weekly taxol instead of the dose dense! That was 12 weeks.
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Sorry ladies if I hijacked this thread....if it's ok with you Musical I will PM you!
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Mine didn't mention the "finer points of BC life" either. The stages that is. I put the b in from some excellent info I found on this board somewhere. It was all about the staging and how they do it and what it entails. From memory it had different types of BC staged differently too, like whether you were her2 pos etc. Very complex but comprehensive enough that you could get it if only you could retain it all.
Gosh Schatz Im sorry about the wheelchair drama. Thats awful. So did you have AC chemo? Thats really rough that stuff, and I was told the FEC which I had was not quite as hard on you, what ever that means. I got neutropenic after the 1st round and spent 5 days in hospital. Thats when that doc drilled my foot. So its great just great, I was told they give you just enough to not quite kill you so they kill the cancer. Lovely eh?
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sorry schatz didnt see your last post. No probs. Sure you can PM me.
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Musical...LOL gotta love it! Yeah I had 3 out of 4 doses of AC...he said 3 was better than none
He was too worried to give me the 4 DD taxols...so he changed it to 12 smaller doses. I had to give myself blood thinner shots for 6 months because the hematologist said the clots were cause by the chemo. That was the reason for the wheelchair...I couldn't stand to even brush my teeth I was so out of breath.The reason I asked to PM you was I thought maybe we were hogging the thread. We can wait until someone complains. Maybe they have had the same experiences, altho this isn't really about Arimidex. Are you taking it too?
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Susan I'm complaining.......lol.......JUST joking.
I've never know you to post so much, it's good.
BTW...Happy New Year0 -
Christine...HAPPY NEW YEAR to you too. ya ya ya...complain away!
Hey we are looking to build a house in Brighton...that's where my DD is and she thinks as we are getting aged and will someday not be able to drive, we should move closer to her so she can take me shopping and to Dr's appts. Ya think she's rushing it a tad?
We have been looking there for a few years now cause this house is waaaay too big and I want a house all on one floor. We found a model we like so we will go down for the "Parade of Homes" in June.
Paul has delayed his retirement by a few weeks again *yawn*. It is very close to outdamnedspot's restaurant. She has a beautiful view of Lake Ontario and a great menu. Can't wait to eat there.
Yeah I am a real chatterbox this week aren't I? Probably cause I have nothing else to do. Dentist tomorrow tho'.
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I'm glad you are hacking.....it's a good sign.....pardon my ignorance, where is Brighton?
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hmmm it is about 90 minutes east of Oakville. It is just south of the #401...20 minutes from Belleville (Lassie) and my hometown.
My only worry is leaving my doctors and dentist...the rest is no big deal. Houses are so much less there than here. We could walk to the shore of Lake Ontario and would be just 10 minutes from Wendy and our GD is fairly close too.
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Oh Susan, sorry , just saw my post hacking!!!!!!! I meant yacking ...LOL....thanks for the geography lesson 😋
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Yeah I am getting to know you...I totally understood...now THAT'S scary! You are so welcome...anytime!
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schatzi yea I'm doing arim. I was supposed to have 6 FEC but I was about played out by the 4th. Veins sooo hard to get it was rah-diculous. As it was had to go in my LE arm to do 4th chemo and I think they had to put off my 3rd one cuz my neutrophils (sp?) wouldn't bouce back in time.
Haha since everything is so dovetailed with BC I reckon its no big deal to digress a bit so no complaints here....except what Im complaining about anyway... LOL
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calm welcome to the boards. When you say "early" did you mean your side effects (joint pain) has now gone? We are all encouraged I'm sure when we hear of these accounts. Being on the A team can sure make some of us feel a zillion years older.
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HI ladies: I haven't been on here much, but have been catching up on the posts.
Musical: I had an SNB with only 4 nodes removed. I may be flying later this month. I need opinions. SHould I get an LE sleeve? If so, who do I call? My BS?
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Hi Kj... each jurisdiction does things differently, but in general, any person who has had any lymph nodes out at all needs to be aware of the dangers of LE. Most won't get it and thats GREAT... but all need to be informed that they are at risk for the rest of their lives. The wisest person is the one who will act preventatively. Theres preventative measures we all need to take from now on. Theres great advice in my view on one of the most important forums on these boards. The LE forum.
So, when flying, the general consensus is you need to wear compression. If you have ill fitting sleeves you can do more harm than good. Therefore, it is wise to be fitted properly. Also while youre at it get baseline measurements of BOTH arms. This is very valuable down the track for many reasons, should you ever get LE. Not having it for years, people have developed LE after flying and having no compression garments. Depending on how you do things in your area, you could be referred by a Doctor or your ONC team. FOr me in NZ I was referred on to PT early as I developed it after RT which is said to help cause it. Since I was "still in the system" it was easy.
On the LE forum Binney (who has LE on BOTH sides from only 1 node out) often has links for people in the states to contact quality LE professionals. I hope this helps. That said, some people have just gone to outlets and brought sleeves "off the shelf" and have managed OK. I guess if youre a "popular size" thats doable, but I would seek a more professional approach if it was me.
Let us know how you go.
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The jury is out on whether or not a person without LE should wear compression when flying. As musical says, if worn wrong you may do more harm than good. A sleeve should never be worn without a gauntlet and I would say if you are going to wear them, you should not get them off the shelf but have them professionally fitted. And you should put them on several hours before taking off and leave them on for several hours after landing. That being said, I do not have LE, and do not wear compression when flying (I did at first but found it extremely cumbersome for something that might or might not be helpful and might actually make things worse). I hydrate, hydrate, hydrate, move my arm around a lot, make fists, get up and walk around the cabin, I wear loose clothes for traveling and don't wear rings on that hand while flying or for a couple hours after I land. So far, so good.
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I generally wear an underarmour compression t-shirt either short or long sleeve for the flight and keep it on for two or three hours after landing. So far no problems. I have made four flights this way and plan on doing it again in two weeks.
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thx for chiming in on this most important of subjects ladies...ha, the one none of us really want to know about until we get it.... in the case of LE ignorance is defintiely not bliss. Much can be done to prevent it and even if it's caught early, to help considerably improve it, but it has the potential to turn your life upside down COMPLETELY, with things such as wrapping, and cellulitis, neither of which is a walk in the park. This is getting pretty much off topic so I would urge anyone, as usual, who've had lymph nodes out to head over to LE Forum. It's a great resource with great advice from those who have been there done that.
Hats off to you ruthbru that youre able to do spendidly with your exercise. This helps both with Arim being hard on your bones, and keeping weight off helping lessen the risk of LE. However, all our bodies and circumstances are different. Not all of us can keep the weight off that easily for one reason or another....metabolism being just one. When I get down the road to exercise, very rarely is it without pain, but I persevere. I would fully understand if someone threw the towel in under my circumstances. Some of us are able to be strong in certain areas and show lots of determination, and in others we might fail miserably. We're all different but hopefully we all do our best.
Big Hugs everyone here.
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ruth...I wear a sleeve (altho lately I am doing just fine without it) and I don't wear a gauntlet. My PT said it would be OK as long as I am vigilant about watching for any swelling past my wrist. My LE never progressed (so far) past my forearm. For months now I have not worn my sleeve and seldom do my massages but it could change. If I were to fly, I would DEFINITELY wear my sleeve. Mine was off the shelf measured by my PT.
My MO said not to baby my arm and to use it as I always had. I am sure many with LE would disagree but just as anything else we are all different! I am still very careful about cuts. hangnails and gardening etc. Just another opinion on the topic!
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musical...like you, I find weight bearing exercises extremely painful due to herniated discs in my neck but my PCP gave me exercises to do while laying down. They are repetitions of 60 each time and there are 3. If you are interested, I will explain. He assures me they are weight bearing...I didn't quite agree but I wasn't gonna argue with him.
P.S. You aren't complaining but EXPLAINING
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Good morning you two....lol
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