Bottle o Tamoxifen
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My eyes have been alittle dry lately. My eye doctor told me to use over the counter dry eye drops.
My left eye has started twitching over the past couple of days. It is driving me crazy. Anyone else ever experience this? I wonder if it could be tammi SE? I've never seen it listed anywhere.
Jo.."The view back there sucks"......I'm still smiling at that one.
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1openheart - Even though I have not personally experienced eye problems with Tammi, there are others who have and hopefully they will come along and answer your question. I try to look at the positive in all this and I can come up with a funny one every now and then. If someone gets a smile or laugh out of it then we are all better off.
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I'm new here gals. I start the Tammi tomorrow. I was also worried about the blood clotting issue. My MO said the chance is the same as when you're on the pill. I figured, I risked it years ago and not for anything as important, so why not? Already having the hot flashes, that started with chemo. MO said to look forward to many more. What a prince! Not looking forward to more insomnia...at this rate, I'll never wanna give up the xannies. Looking forward to getting to know you all.
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Lori - LOL at xannies! All this stuff we have to go through, that our friends don't, make the xannies a necessity sometimes. Like scans, ugh!
1openheart - yes, even better! Be in the present moment
Jo - the view back there sucks - I love it! Another good attitude adjustment statement I need to keep repeating! I didn't know you were having recon - when? Is it very complicated? I remember asking my BS if a PS could just put something shaped like the tumor in it's place. He said I've always wished they could, but they can't. Seems to me that is something they should have perfected by now - are they doing that with you?
Sandee - the emotional roller coaster is really something, isn't it? It has been hard to take without support. I just have two brothers and I don't think my friends can cope with it, or me...
Paula - I still have more down days than up days, but you are a good role model. Maybe I can catch up in the not-too-distant future. I like my new morning action plan, too! I will talk myself into it until I believe it! What's that saying - fake it until you make it! There ya go, that's my plan!
Deborah - I hope the different manufacturer will make all the difference for you. I've been using the Mylan from the start, and so far so good.
Linda - you sound like you are doing great! I would love a little more energy and a better attitude. I wish you could mail it to me!
To the new ladies - I remember when I started Tamoxifen about a year ago, so many of us on this board were having the hardest time making ourselves take that first little white pill! It was so intimidating! I like what your onc said, Lori. I took the birth control pill, why not this? The SEs have certainly been manageable. It's just really hard to take that first step. I hope y'all find it to be tolerable.
Well, tomorrow is a new day and the 2nd day of my attitude adjustment lessons! I will see y'all then...
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So I had a really good, restful sleep last night after taking just one Melatonin capsule! It was the best sleep I've had in awhile!
I usually take the Tammi at bedtime, but didn't take it last night, instead took it this morning. I'm wondering how this will shake things up.
Thanks for the support!
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Well today I go for my PS checkup. Its been 6 months since I've had the new girls. I am hoping he gives me the all clear so I can finally get the tats that I have been wanting for months now. I got hook up on fb months ago with an amazing artist. I wrote her wanting to now if I could buy a design from her and told her what I wanted to do. Well long story short. She designed sometime just for me. So not only do I own a one of a kind pic, I will hopeful be the owner a pair of one of a kinda set of girls. Just wont be posting those tats on fb for sure, lol. I do share alot on my fb but thats a set I wont be sharing, lol. My sissy who has had BC always says she wants to get the fingers of rock put on her scars, lol.
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heartnsoul - I just made the decision in the last month to have recon done. No one told me I had the option of any type of recon after a lumpectomy. My BS sent me to this wonderful PS and I have met with him twice to discuss this. Now I am waiting to get a surgical clearance from my family doctor and my MO was nice enough to move my mammo up from June to March. I am hoping to have this done in late April. The PS wants the mammo before the surgery for 2 reasons - to make sure it is clear and to have a baseline. I am having a latissimus dorsi flap done. It is not complicated but is considered major surgery and I will be in the hospital for 2 days.
The decision to have this surgery is for me to once again feel really good about myself. This is for me another step to keep looking forward and to not have that daily reminder to look at. The entire botton side of my left breast is gone. What I have left is a huge dimple and I was able to keep my nipple. He is going to straighten that out - it points down and to the left.
I will post the surgery date when I have one. Tink is going to pack a bag and stay with me for a couple of days. I think there will be a big pocket party.
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HELP !!!!!!
On the last page, 606, I asked if anyone could share with me what they take for aching knees (or joints) from the Big T. I've taken Glucosamine-Chondroitin with good results until the last few months.
My hair has fuzzies
from your help suggesting Biotin 5000 .... so I'm hope hope hoping someone will suggest a med that might work. I do take Omega 3 too.Thanks for any suggestions.
Bonnie (CatbirdC)
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Saw my MO yesterday - all good. I've been on Tammi for 5 months now - my side effects were minimal (small vaginal discharge, memory problems, night sweats). For all you new girls, I didn't want to take it either. Once I started taking it, everything out of the ordinary became a Tammi symptom. I was particularly bothered by acute memory loss. But so many of the Tammi symptoms are menopause and aging symptoms, that I didn't know if it was Tammi or not. Now, 5 months later, all my "side effects" have leveled off, and my biggest problem is remembering to take the pill! (It's the only pill I take). I also have gained weight, so have begun trying to lose some weight and become much more active. I noticed that this has helped me tremendously with how I am feeling physically, but also with my mental outlook.
Pat
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Welcome newbies. I had two pages to read and then had to answer the phone and wait on someone so now I forgot what I read. oh well maybe that goes with the memory loss, haha. I was scared to take tammi at first but I was more scared that I did not do chemo and I had nothing else for protection at the time so I just jumped in and took it. Had alot of SE's but most have leveled off. Still have hot flashes but they seem to come and go but have been here more lately. Insomnia comes and goes with my hot flashes. So I either take melatonin or Lunesta depending on what is going on. Tammi seems to have flared up arthritis for me that I never had before. Have had to take Medral pacs when it gets too bad. First it was my hip then my neck now my shoulder. Getting relief from yoga, chiropractor and acupuncture. I've become high maintence.
Paula for the most part I have really turned a corner myself in feeling better and am hopeful about the future. I guess we all have to do it our own way. Today my pitty party is my shirt is lopsided due to my lopsided breast from 3 lumpectomies and rads. DH was trying to make me feel better about it, but I then I realized I am having my BMX in a month so I'm sure my PS will make me some new fab boobs. Oh and the nipple tats. There is a lady here in town that got flowers instead of nipples. You may have to at least share the drawing with us.0 -
Haven't been on this thread in a few weeks, but frustrated today! Called MO's office today to ask questions about SEs I am having. Worse flahes, night sweats, dryness and discharge I can deal with, but my eyes are wonky and I am not sleeping well or rather much at all (maybe 3-4 hrs a night). Was told to go see my eye dr. (my wallet is crying again) and that insomnia is not a side of Tamoxifen on their list. WTF since I had my treatment plan in place I have been sleeping like a baby only started having trouble staying asleep since I started on this crap - kicked in about week 6 (during my last week of rads when I should have been sleeping from fatigue). Told me if I am having trouble sleeping I shouldn't nap (haven't), drink caffeine (don't), exercise (I do even though still painful), go to sleep and get up at same time, (we do - hubby often works 7 days a week). Well if that is true and I can't sleep should see my own dr. If I have issues because it is not the Tamox. (implied crazy) Not sure how this is going to work for the next 58 months!
Thanks for listening to my whine, maybe I really am crazy! And if I am, who wouldn't be!!!
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Hi Ladies;
I haven't posted for awhile but follow the thread. I started Tammi January 9th. Side affects seem to be HOT FLASHES, fatigue, and joint pain. Oh, and yes eye problems. Not sure if the eye problems are just the Tammi or from the Herceptin. I walk around all day looking loaded as they are always red dry and swollen. But I think I can live with the side affects so far.
This thread has been a ton of help. And I am am glad you all are here.
I am going to start reconstructive surgery in April. I had a TE put in when I had surgery last March. Then had a infection and had it removed. So will start over.
bgirl; Not sleeping also seems to be a SE from Tammi. I am now starting to sleep for up to 3 hours at a time. Plan for more though (lol)
Theresa
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bgirl and theresa, a lot of us find that melatonin helps the sleep problem. It is an over the counter, natural product that you can get at any pharmacy. I use a 1.5 mg disolve in the mouth tab with no aftereffects. You can double the dose if need be or take it in the middle of the night. I've see other brands in 3 and 5 mg tabs or caps as well.
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Sherry Im so sorry you had a bad one. Hugs for ya girl! I figured I would still have a day or two that is gonna that are gonna be upsetting. I'm just so dang greatful that I have rounded a corner and its not every dang day. It was about to drive me insane. Good gravy I was just so dang upset all the time and it was driving me nuts. I just felt that the BC was holding me hostage and I was letting it. I think thats what bothered me the most. I have been sober for almost 9 yrs and drinking held me hostage as well. I got over that hurdle and thats what bothered me the most. Being held hostage in my mind. I let BC have more control over me that it needs to have.
Catbird Im so sorry your having such issues. I dont take anything on a day basis to keep it in check. I just go with the flow of it. On the days that I cant, I take ibuprofen for the pain. There are days that doesnt help so I have to take something stronger.
bgirl why is it that the MO cant get together on the SE. The insomnia and eye issue I was warned about from my MO. Even my eyedoctor told me that while I'm on the Tammo that a yearly eye exam is a must. Not to skip it.
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Jo - isn't it terrible how we have to find out our options for ourselves? That's another way this board is a HUGE help. It sounds like you have a good plan and you are so right. We need to take whatever steps we feel we need to to put this crap behind us. I'm still trying to figure out what that may be for me.
Catbird - I have had knee pain for years and I've been looking that long for relief. A couple of hundred dollars later, I think you are taking the 2 best supplements you can for knee pain - gluc/chon & fish oil. You may want to go to an orthopedic surgeon who can give you a shot of coritsone or something to the knee - that has been known to last some people as long as 6-9 months and then they just go back for another shot when their knee starts acting up again.
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Theresa - 3 of the women in my newly diagnosed group are on herceptin. They were complaining about the red eye thing yesterday. One was wearing sunglasses. So could be that.
I like my MO, but when you call you get nurse who is working with him on his clinic day.
Thanks for the feedback, I think I will make an apt to see my eye dr., may be worth the money to have a baseline. Also called and made an apt with my own Dr. for Thursday (at husband's insistence - he doesn't think I am crazy and doesn't want me to get that way from not sleeping). Even if only indirect effect of tami - I need some sleep. Perhaps hormonal, the one SE I am not minding is not having my period every 3 weeks!!, but I guess it shows that I have been pushed towards menopause.
Thanks again for letting me vent!!
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heartnsoul - It took me some time to figure out what I needed to do. I try to keep a positive attitude about this all the time and yes, it is hard sometimes. You will find what you need to get past this crap. Just take it one day at a time. (((HUGS)))
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bgirl, fire your MO if he/she doesn't acknowledge your problems are related to treatment! My MO willingly prescribes ANY medication that will help keep me comfortable, including a sleeping pill. She believes sleep and rest are VERY important for healing! I also have an excellent PCP who works with the MO, the neurologist, toxicologist (she is great - really understands how chemo is a poison to the body, and helps find solutions to reducing the neuropathy symptoms), as well as the cardiologist, orthopod, and eye doctor. If my MO didn't try to address the SEs, I would not keep her on the team. OK, I realize this is easier said than done, but you deserve to be heard, acknowledged, and cared for appropriately.
There is a GREAT article in the March 1 New England Journal of Medicine on "Goal-oriented patient care" and another on "Shared decision making" - I can't figure out how to get a link posted for public viewing - I get access at work. But they are really emphasizing taking patient values into consideration when recommending treatments, not just aiming the treatment at the DISEASE or the lab NUMBERS, but realizing that sometimes SEs are just not worth it to some people, and the docs should work together with the patient to come to an agreement about the plan.
Sandee, Paula, Sherry, Tink, Jo, Chabba, Heartsnsoul7, joy, stheresa, 1openheart, Bonnie, stjude, pat, and anyone I missed - Sending lots of loving thoughts your way tonigh. Thank you all for being here together.
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HeartnSoul....Paula......
Thanks for the words about the knee pain. I've been on the Big T since September of '09 and been thru many many many different se's that came and went, but it looks like this one is staying for a long visit. So if the G &C and Omega3 are about it for otc help, then I'll deal with that.
At least I have some hair back. LOL Someone mentioned Biotin being in their vitamin but I doubt that would be strong enough for her hair problem... ???.... think you all mentioned I'd need the 5,000 mcg.
Jo~ one day at a time and positive thinking are both tools we need to get past our bc se crap for sure.
)Bonnie
CatbirdC
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Thanks for the loving thoughts, Linda. Right back at you!
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1openheart, I had to drop my bio identical hormones which kept me in good shape so now cold turkey I get hot flash occasionally and dry eyes. I had gone to eye dr b4 and he said take fish oil!!! He must be a nature nut. I took all kinds,fish oil,flax oil,astaxthin and nothing helped. I finally got Baush & Lomb Advanced eye drops for dry eye in a little white bottle with dark blue labelling. It works for me. Going to the oncolo 2moro and I have negative nodes and clear margins & a bmx but have a strong fam hx of bc and ovar cancers so suspect he will give me Tamox. Dunno ....was hoping for something to lose weight. My TE must weigh 20 lbs cuz I sure gained a lot eating small portions. Nothing the whole day of surg,3 squares the next day. At home I have a whey shake and a boiled egg. For lunch some soup and sandwich. For snack a fiber bar and tea with no sweetners and no sugar, I walk and walk the dog and do all the housework,darn! I just keep gaining weight. could I still be retaining fluid or something from surg? Anyone else have this problem? Also anyone else have any ideas on making the TE more comfy? I tried Whippetmoms link to the Anita bra but couldnt find it once I got on the site. found one similiar in black. How are we supposed to look nice in lingerie with no boobies? BC sucks big time!
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So far, I have not gained weight on Tamoxefin. I lost about 8 lbs after I went off BHRT. I think most of that was muscle. I feel bigger, flabbier since starting the Tammy. But, weight wise it is about the same. I just had eye check up. He gave me some dry eye stuff too. We're watching mild cataracts already caused by being on steroids for asthma. So far no change. I started taking my T on July 1st.
I did not have a TE. I had a direct to implant recon. so I can not comment on how to make them more comfortable. Wish I had some advice to make you more comfortable.
Yes, BC does suck big time! Sending low calorie hugs your way.
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Hey all! I filled my prescription today. I am so relieved to know that I am not the only one who is scared to take that first one. It is so hard for me to do for some reason. I couldn't decide whether to take it at night or in the morning. I do believe I will just take it tonight and get it over with
. After the lumpectomy, chemo, and radiation you would think this would be no big deal! I finished chemo the end of October 2011 and am waiting for my period to return-I am 34. Never prayed for my period before and never been so scared of side effects of a pill . I know if I put the positive energy out there, it all will continue to be positive. Thanks all for listening!0 -
Another restless night - even though I took a Melatonin. And it felt like I had restless leg syndrome - just couldn't get comfortable. Between the snoring dog and my thrashing around - DH didn't get much sleep either.
Does anybody else have restless legs at night?0 -
I have been on it for awhile. It made my legs really sore. I started to take tumeric in pill form. It has helped. I take vit E for the hot flashes, hardly has helped at all.
Has anyone had problems losing weight? I still have two rounds of herceptin. Can I blame that too?
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1openheart- are you happy with your implant without doing the TE? Have you had any issues? The 1st ps I saw told me she wouldn't do it directly because I wouldn't be happy, but yet she said I was a perfect canidate for an implant.
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Diana....well, I'm not sure how to answer your question. Everyone who sees my reconstructed breast says it looks wonderful. These are people who see a lot of foobs....onc, tattoo lady, PT etc. And I have seen photos on web sites, and mine looks really good. But I do have persistent pain. I have pain that seems to originate at the site of my stereotactic biopsy. The pain seems to be on two levels. One is skin sensitivity. That area is ultra sensitive to touch. The other is deeper, almost muscular. It happens when I move my arm or flex my pecs. The interesting thing is both pains went away after I had a revision done in Nov. Then a couple of weeks ago, I woke up one morning and it was back exactly like before. PS says it could be nerves or adhesion's. Wish I knew.
Initially, there was alot of tightness across the pecs. Lots of stretching going on. I took Soma, a muscle relaxer for a couple of months. I am by nature, very "gumby", hyper flexible. And I practice yoga, so I had a lot of range going into my surgery. I had almost full range of motion on that side the day after surgery.
I have seen quite a bit of discussion around the boards about Alloderm. I have Alloderm across the bottom of my pocket. I have not noticed any discomfort in that area, and I had no problems with infection.
I was drawn to having 1 surgery with the direct to implant. I was not expecting to have another surgery except to make the nipple and do the lift on my natural breast in Nov. But I was not happy with the placement of the implant and they way it raced toward my armpit when I flexed my arm or chest muscles. So, PS agreed that was not optimal, so he removed the implant and placed some internal stitches along the outside edge of the pocket. The implant is much more stable now and does not move near as much as before.
I don't know if this answered your question. Since I have not experienced a TE, I really can't compare the two. Good luck with your decision. And remember, we make the best decision we can at any given time with the information we have.
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Hey ladies trying to catch up as I have been MIA for a few pages.
Welcome to al the newbies and take the plunge you wont know till you do and why worry about something that might not happen. I jumped and never looked back. The first few months were kinda stinky, but not overly. Hang in there and know we are all here for you. When and if you develop a side effect we are here to help you through it....
Jo, what kind of reconstruction are you thinking of having? I was told I only had 1 choice to have a Lattisimus Dorsi Flap which I was kinda bummed out about so I never went forward. There are days when I am so tired of putting my fake boob in and making sure that when I bend over no-one else can see it....kinda tricky as I like to wear normal clothing along with normal bras. Kinda wishing I took the plunge and did it.....let me know what your thinking.
Miss you all and happy freakin Wednesday. Expecting snowfall today 6 inches.....YUCK!!!
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June - I am having the LD flap done - no implant needed. The entire bottom side of my breast is gone and what is left is a huge dimple. I do still have my nipple which points down and to the left. he is even going to straighten that out and get it back where it belongs. I asked why he chose the LD flap over the other choices and he said although they are all major surgeries - this one is by far the least invasive and the most reliable. He has great success with this. He will be able to use my lump scar and will have a one more incision on my back. Even with radiation, he said my breast looked really good and there should be no problem. He did some measurements and the BC boob is 2 cm smaller than the good one.
My vote would be to just go for it. I am kinda excited about this whole thing. I want to be able to wear everything in my closet and just done do that now cuz you can see the difference with certain tops on. See more than on PS if you have to. You want someone you are comfortable with and will answer all your questions. I am in a area that has 2 plastic surgeons. One does not take my insurance but the one I am using comes highly recommended by several doctors and i have done some research on him. Could not find a negative comment about him.
Let me know what you are thinking now.
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The hot flashes are killing me. I don't know why they have decided to come and stay. I finally broke down this morning and bought a fan for my desk at work. I don't want to freeze the other people in my office.
June if you are that conscience about your foob I say take the plunge and get it fixed. I am like Jo I am looking forward to getting this next surgery done and over with. Not that I wanted any of this to happen in the first place but it has just drug out way to long and I'm ready to get it over with.
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