Radiation recovery
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Hi Ladies---went to see the RO's nurse, she gave me more saline and gauze,and we talked about the silverene---so she said she would talk to RO and call me. I went then across the way and saw my MO---he ordered my Arimidex but told me to not take it till breast and arm healed up. (he estimated a couple weeks) then he said---after that, you'll probably notice it gets kind of leathery feeling, but that will go away after a while---so just hang tight. He is so nice and so damn smart......
We talked about the AI's and he said this is the one to try, try it for two months, and if it isn't doable because of side effects, we can switch to Femera, and if that one doesn't work, there isn't any point in trying the Aromasin, because we will know its the drug class----then we might try Tamoxifin. But he felt it had greater number of side effects. And he said, if you do it a year, 10% improvement in distant reoccurance you do it 2 years, maybe 20-25--you do it 3 years, 80% and 5 years---GOLDEN. So, I really hope I can be 80% or Golden. Then I came home, and the RO wanted to see my skin, so back I went.
They are ordering me a crème from a compounding pharmacy---entire underarm is opened up now. Clear down to my opening in my U necked t-shirt. Should have it by Thursday But she showed me two small dots of white and said it was new skin cells forming. WoooHOOO
How old are you ladies that say your moving like you 90 years old? I am 57.
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Not to worry about the arimidex, Redhead. I'm 68 and move like a 30 year-old, except when I first stand up after a nice, long car ride. As I see clients all over creation, that (the long drive) happens quite a lot. When I stand, I am 90 for a few seconds, then ratchet back through the years as I take a couple of breaths and a couple of steps. It's fascinating (?), or (!) ,or, more likely (#%!!@#&^#) how quickly the pain disappears and I'm back to normal. I am kind of stiff some mornings, but that passes too. In my case, it's only my hips, mostly the right, where a little arthritis was bothering me before all this wonderful journey began. My onc says the latest research indicates that AI's do not cause any joint damage. What they do is amp up the pain level. Joy. But doable. I'm so happy to read those stats your MO quoted. I'm almost 14 months in, so must be in about the 12% improvement range, and going for the Gold.
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redheaded....I'm 66 and my symptoms are like Brookside. Really, it's only takes maybe 10 seconds or less to get my balance and any stiffness I get in my hands or wherever quickly disappears. It's just a surprise, but I'm happy to put up with it for the benefits of the AI.
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Redhead, I am not quite as lucky as Brookside and Sew. I have had a hard time with the AI that I was prescribed. My MO only prescribes tamoxifen or Aromasin for DCIS. The AI is prescribed off label as it has not been approved although it will be soon cause clinical trials are over now and they are compiling everything (and it may already be done and approved and I don't know it yet cause we discussed this last year) and I can't take tamoxifen due to a family history of blood clots and stroke soooooo, my only option is Aromasin which most claim to be the easiest AI to tolerate and the only one of the three that is chemically different.
Armidex and Femara work the same in the body but Aromasin acts like a steroid (but it isn't one) or some such....anyway, struggling with it a lot. Had a month off and it was HEAVEN. This time around, the side effects while still painful seem to be a tiny bit better or I am just used to them now. I am in a good amount of pain most days and have other side effects too. Dry eyes, more hair in my brush (but still have most of my hair thank goodness, just noticed more in the brush than when I don't take it) and the joint pain is really pretty intense.
BUT, it really is one of the best things available to prevent recurrence so despite all of that, I am still taking it until I can't anymore. I will take a yearly month vacation to regroup and then back to it! My MO said despite her thinking it is not as effective, she would give me Femara if I insisted I wanted to try another one, but I am sticking with aromasin since it is the "devil you know" kind of thing. Not everyone has bad side effects. Many people have none to speak of so worth trying!
So very worried about Kate!!
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Agree April. I don't like Tamoxifen but am afraid NOT to take if. Started with Arimidex but it contributed to my osteoporosis so ONC switched me. Numbers are up on BD test so it's doing its job. Still have joint pain, weight gain, lack of concentration and sleeplessness but these are all manageable side effects. Others aren't so lucky. My Oncotype score of 11 predicted my recurrence rate of 8% but included 5 years of Tamoxifen. I just don't want to look back years down the road and say why didn't I? We all know BC is not one size, fits all so everyone has to make their own call whether to take the meds or not. One lady had horrific problems with Tamox and was in danger of losing her job because she couldn't sleep, pain, etc. and prescribing more meds to offset those SEs is counter productive to me. When does it stop then? More meds none of us need. I am really worried about Kate. Wish someone knew how to contact her or her dr friend she talks about. It's been 2 weeks since she posted last. Praying everything is k.
Diane
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everyone is worried about Kate! I even pm'd her..alas no response. Has anyone tried nowheregirl & her central address book ? And for anyone who wants, register on the address book, that way we can get updates when you go missing.
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Hi Y'all
Busy thread...playing catchup...luv the pics y'all posted:) congrats to all the grads! And great check ups! And meet ups!
Kate - sending good thoughts and prayers...
Redhead - AI has been ok, but I exercise faithfully and am very active...my 1st BD will be in July to see if any impact...but I'm pounding my bones. Think most of us don't want to take HT, but then MO gives the stats on recurrence risk and we all say gulp and open wide..,the devil we know and the devil we never want to meet.
Age...ha ha I'm younger than my DS, but passport say 60! And I celebrate and embrace life! It's only a number..mental age maybe 39...ok 45...ha ha:) next week begins the long Bday month for me with my 1st party 6/2...friends are traveling so celebrating early with a few gosh 16 to 61 where does it go!
Because I don't want to be reminded or think about BC, I declined to report in every 3 months and opted for every 6 months visiting my team of Drs,,.mammo than MRI...June will be 1st post rad MRI and I'm counting on area of question to be nada! False negatives lurking in dense breasts ...not a good thing...so every 6 months it is with BD too...if only Josie could do them all for us!l
Hump Day! Line dance today was a review of 10 dances...ugh a few miss steps and I sat down for one that I absolutely do not like...but Bama Slam fun...Gotta get my kayak and gear ready for fly fishing trip this weekend...my 1st time on lake since BC ...not camping...hotel girl:))) oh, painting is not done hubby took over...which means it will be sometime this year or next
(((Hugs)))
Cindy
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70charger, what central address book? Sounds like a good idea.
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Considering all Kate's challenges, it sure seems to me that two weeks of her not posting, logging on, or replying to Charger's PM is quite long enough. None of us seem to have her contact info, and I'm guessing she's probably not listed in the central address book. So what about PM'ing the mods? Is there a process?
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Hi Brookside, I went to the 'help' section but didn't find any place to contact mods. I know we can report a post to get their attention but unsure if there is a better way. Not sure how to PM the mods. Even if Kate was in the hospital I would think she would have her laptop/tablet and be posting. I too am worried.
70charger, I had no idea this existed, what a great idea. Did you register previously or did anyone else here and could see if Kate did?
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Hi Ladies:
I have been away for a bit, no time to even go back and catch up with everything! Too many posts! I am sad not to see Kate posting something for us as well. I think about you every day, sweet Kate, I hope you are recovering and getting stronger.
I am having the darnedest equilibrium problem that no one can seem to diagnose - yet. Been through MRI's and went to see an ENT, he is giving me a diuretic to see if maybe this is an inner ear problem. If not, then I will have to have some cardiac tests run. My neuro said at first he thought he would find a tumor in my spine as I had been falling. Boy, am I glad he did not tell me that up front! But good news, is the spine is fine and the brain as well, although he wants to take a look at a spot on my forehead that he says is probably nothing. So that means a brain CT to have another look at the area. But that would have nothing to do with balance issues. Sigh, it is always something, isn't it?
Saw my surgeon too, yesterday. He is so cute and fun. I thought he would recommend a mammo for me but he says he thinks I can hold out until October -- which would be 9 months from the time I had surgery. I will double check this with my MO when I see him in June.
I just have not felt well, some days are worse than others, so hopefully maybe this new medication can help. I cannot miss much more work, I have taken most of my days for the year and then they will start docking me. Just seems like it all hits at once.
Hope you are all doing well. Will try to catch up with reading this weekend.
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BigD-sorry you aren't feeling well. Totally get the sick days/dock issues. I had that problem when my youngest child was little and most recently when I was DX. My problem was concentration or lack of in my case and my job demanded attention to a lot of detail. I tried but kept making mistakes. I slowed down and still made them. It was so frustrating. I had to take a respite r lose my job. My bosses were sympathetic but business is business. You said you have been falling; could your meds be the cause?
What about Kate's friend who is a doctor?
Diane
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I remember Kate said her actual name is Joyce. Could be helpful. We thought we found Kate's doctor friend before, remember? Somebody posted a link, and maybe took it down but perhaps could find it again?
When you click on Private Messages, you get the option to write privately to the moderators.
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runfree is correct.
I have not registered as I too have just found out about the central address book. I think I will pm nowhere girl, if someone else wants to they can pm mods.
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Big D sorry your not feeling well.Hope it improves soon.
Ok I just went through all the old posts to try and get a clue to Kate's real name or Facebook name.I remember way back when I first joined and we were discussing names and Kate explained that wasn't her real name.Without a last name we couldn't find her on Facebook.I even went through Google searching for plastic surgeons in Malibu CA with a first name Tracy.I hate to be that nosey but I'm worried about her.
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I had Kate/Joyces email address and I emailed her a few days ago I didn't get an answer. It is not like her not to pop in at least a little, no matter what she is going through I also found the website for her doctor friend the other day. I have a link if anyone wants to contact her. I think this is her:
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Does anyone remember Kate's?Joyce's real last name? I remember she lives in Santa Monica and she is Jewish. Her kids live in Chicago.
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I sent Kate an email recently. No response yet. I will send you a PM with that name.
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Hold tight, I have Kate's email. Will try right now and let you know if I hear anything.
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Big D, I also have the vertigo challenge, as does Bunkie, from whom, by the way, we have not heard since May 12. Yoo hoo, where are you Bunkie?
Anyway, what I find most helpful is limiting head movement. In a group, I always try to sit where I can see everyone without tennismatching my head back and forth. And, when it flares up, as it did a couple of weeks ago in welcome of the spring pollen, I also limit the times I nod agreement with others in conversation. That said, I sure hope they figure out, very quickly, that it's a minor and shortlived inner ear thing and you zoom right back to normal.
I think contacting Kate's PS might be our best option. As she can be approached as Kate's friend, not her surgeon, she might be able to give info.
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I know last time we backed off of contacting Kate's friend tracy, but what have we got to lose? I think we should try it.
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Kate is not registered in the central address book. sigh
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Well, I couldn't stand it any longer. I PM'd the mods, asking what their options are for contacting missing persons. I think this is something we'll all be happy to understand, so will let you know when they respond.
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I tried Pm'ing her a few days ago, begging her to just post if she was ok---no reply.0 -
Good idea Brookside. I'm going to register in the central address book; we should all do that. I think our best bet is her friend Tracy. Not getting a response when several of you emailed her is really worrisome.
Diane
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Big D--- is dizziness a side effect of Femera? I t can be of Arimidex. Have you had any other changes in your meds?
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Well, I heard from the mods. They do not have Kate's contact info. Funny. I thought we needed to give that info when we signed up. I guess not.0 -
Actually, I just received this email from the mods:
Actually, our apologies. We kind of got our wires crossed here. We actually just sent an email to her asking her how she is, and that if she is able, to please get on the boards to provide her friends an update.
Sorry for the mis-communication, and we'll keep you posted!!
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Thanks Brookside, that's good to know. Still, I wonder if they have the same email that SAB and Joan do. I wish someone had a phone number. I think trying her PS friend is a good move.
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