Bottle o Tamoxifen
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Kaara, several of us found that starting at half dose was helpful. I started with full dose, had SEs and discontinued it. With recurrence, it seemed prudent to go ahead with it, so I just used half a dose every other day, worked my way up to full dose over 3 weeks and have had much better time with it. My only problem with it now seems to be pain and hot flashes, but some days these are worse, some days almost non-existant. Best wishes to you!
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BTW ladies, I have had such problems with the Effexor (it may or may not have helped the neuropathy, and I do think I have had fewer hot flashes, but a lot of other problems are just more than I can deal with) so I am going off of it. I was down to the lowest dose, then went to every other day for a week, and the neurologist told me I could stop it. NOT SO!!!!! I am in the middle of pretty miserable withdrawal symptoms (dizzy, nausea, jittery, etc. etc.), called my MO's nurse, she said I was going off it too fast. (Now in my book, I don't know what the word "fast means" as I only have one speed, and apparently it isn't "slow"). Took the capsule, divided the little granules into 2, took one today, will take the other tomorrow. She suggested only 30% reduction in dose per week, and it could take me a few months to actually get off of it. ARRGGHH!! Just one more thing!!!! And last night it seemed like I was soaking sweaty all night long, and am really dreading trading off all the SEs..... I hate medicine.0
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Kaara welcome!! You will find the gals around here are great. There are a few crazys, but they are loveable, lol (yes June you know you are)! They are super helpful and if you have any problems, just post away for someone will try and help you. Good luck with the Tammo. Just as Linda says split the dose in half and try that fro afew weeks. I know the SE are a bit much, but I look at it as one more weapon to use in this fight.
Linda how long did you take the Effexer? My MO says it takes about 3 weeks before you can tell a difference. But as you said there are other issues that you cant stand. Heck I couldnt handle the gaba stuff after one day. Good luck on coming off of it!
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Paula, yes, the gaba stuff was BAD! I have been on Effexor since the end of June, had increased the dose in November thinking it might help with the post-op neuralgia in my ALND arm (which it has not), so decreased it back to low dose. Fingers and teeth have been stable, just hope they don't flare up again when I am off. I was told the neuropathy should improve over 6-12 months, and it has been 12 months since it got really bad, so I am hoping it is better without meds. If not, we will have to revisit. I think the topical cream I am using may also help at least with the fingers, and I am not discontinuing it yet, just one med at a time.
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Hey Paula have I mentioned how much I love ya girl????
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Awe Thanks June, love ya too!
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Kaara welcome this is a great group of ladies with lots of support here, but they do get a little crazy sometimes.
My MRI went fine but the tech had to stick my IV twice. I think she went all the way through my vein the first time so she had to use another vein. She was very nice and felt bad and kept asking if it hurt which it did not. Now just have to wait for the results. Thanks for the pocket party.
I have been off my Tamox for a week now and feel so much better. My neck pain is so much better but I really don't know if it is getting off the tamox, the steroid pac or the acupuncture. I don't really care I just know I feel better. Not all the pain is gone and I have one more week to be off tamox then back on it. We will see how I do.0 -
Sherry: Glad the MRI went OK. Sorry about the IV though. That happened to me when I went for my MRI...ouch!!
Tomorrow is my ultrasound and of course, I am very worried. It's also my birthday, so I'm hoping that I will be able to celebrate it instead of having it dampened with worries of having to deal with yet another health issue. So anyone who'd like to jump into my pocket tomorrow, I could really use you in there
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I'll be in your pocket, Deb!
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Happy Birthday Deb!! I will also be jumping in your pockets!
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Hi, Ladies,
Deb, I had my annual mammogram on my bday, so I know how you feel. All went well and it felt like the best bday present ever. You have my wishes for this to happen to you, too. And of course will be in your pockets. And Happy Birthday!!! It's my son's birthday today, too. Great day.
SherryC, glad you're past the MRI, and wishing you boring, benign results. Glad your neck is feeling better.
Kaara, welcome. You may be pleasantly surprised and have few or very light SEs from the tamoxifen. I have some hair thinning, intermittent joint aches, and way fewer hot flashes since my oopherectomy in November (nice surprise.) My attitude is to be grateful that we have this proven protective drug in our arsenal and to feel positive when taking it. Any SE sure beats BC, if possible, and we just take our best shot. Oh, I also find that taking fish oil tablets and exercise really helps. That being said, some women have really serious or unbearable SEs and can't take it. But you'll see. Good luck.
Has anyone found that they get colds more since tamoxifen? I am on my third bout of sinusitis, bronchitis since August. I never used to get sick at all. On antibiotics again and looking forward to the inevitable yeast infection. Having developed asthma in the last few years means that the slightest cold gets serious. I eat well, exercise, etc. can't stand this. Dr husband thinks its stress. He could be right. Being here with my Dad on a leukemia ward isn't easy. And now I'm useless as a helper because you can't be anywhere near a leukemia pt with a compromised immune system if you have so much as a sniffle. So I flew all the way here to New York to be with my Dad, help out, was with him for three days and now I am instead running a fever, coughing like a TB patient, and in quarantine at my brother's apt. Frustrating! Oh well. Am getting better. Back to the front!
Love and best wishes, count me in in all pockets,
Shari0 -
Shari sorry you are sick. I know you really want to be there to help your Dad out. Maybe you should try some Zinc as it has been proven effective to help with the immune system. I have started taking it because i get fever blisters very easy even though I am on daily Acyclovir for prevention. I have noticed that the out breaks have slowed down since taking the zinc. Don't think I'll ever be free of them but slower breakouts are good.
I woke up this morning with only a slight pain in my neck. I am so happy. I started having pain during rads Dec 2010. Continued on with breast pain until a couple of months ago with the help or rehab and then this neck pain started. I have not felt this good since before surgery Sept 2010. I am walking on air I feel so good. Well see how the tamox makes me feel when I get back on it.0 -
Deb I'll be in your pocket tomorrow. I'll be eating the birthday cake.0 -
Well, I am right there with you all who have gained weight on tamoxifen. I didn't know it was a side effect. New Years Day I started a boot camp exercise regime with cardio and strength building exercises, in addition to watching what I eat. Total pounds lost - ZERO. Total inches lost - ZERO. Even my fat pants are getting tight, and I do seem to be retaining most of the weight in my middle. Going on a wonderful warm vacation in a few weeks, it ain't gonna be pretty LOL.
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Sherry sorry I got you soaked as I knew I was drooling but I just couldn't get control of myself....ha ha I also wonder if I were to stop Tamox if my foot pain went away was it because of stoppping that little white pill or all the PT I have been doing. How the heck is one to find out. It will be 2 years behind me in April and part of me is afraid to stop as I don't want to have worse SE when I start it back up.
Shari that really stinks that you are not feeling well. I can imagine how you feel as all you want to do is be with Dad and help out as much as possible.
Deb count me in tomorrow as well and hopefully Sherry and I wont eat all the cake by ourselves.
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Thanks girls.....but please save a piece of that cake for me!!!
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June - I was on Tamox for one year and 2 days when I went off. Been off for 11 days now and feel fantastic. Not sure if I want to go back on it. No joint/muscle aches. I will decide by the end of the week if I am going back on it. If I do, I am going to split it and go back on it gradually.
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Jo I am so so very happy for you....yay! See, this shit makes us not feel well at all and I am tired of putting on the happy face for everyone pretending it does when we all have some ache or another.....to go off or stay on tis the question.
hugs gals!
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Ok, so I know we ask just about anything on here, so here goes. My left boob is so freakin itchy and driving me crazy. I cannot tell where it is coming from, nipple or surgical site as the breast is so numb there. It started yesterday and it is seriously driving me bonkers. Anyone else have this problem or is this something I should call about.....I want to rip the darn thing right off......
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Deb, happy birthday! I'm sending positive thoughts that all will go well tomorrow.
Shari, I'm sorry you are sick. I have found that I've been sick quite a bit since starting Tamox in November. I had a chest cold that lasted over 3 weeks, got a yeast infection after my yearly gyno exam in mid-December, and have repeated bouts with mouth thrush. I think the drug essentially compromises the immune system.
I called my Onc on 1/6 and explained all of my issues and she told me to go off the drug until I see her in mid-February. She wanted me to try to "get healthy" before we begin treatment again.
I have to say I am feeling a bit better. The cold is gone, thrush is gone and yeast infection gone, as well as the bone pain in hands and knees. The severe rash I have, fatigue and dry mouth/skin hasn't gone away yet but I'm assuming this is due to the diminished estrogen and probably won't go away right away.
It is hard to imagine having these issues for 5 years...I'm praying they come up with another solution soon.
Hugs to all.
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welcome new ladies!
Deb hope you have a wonderful bday!
Shari so sorry you are not feeling well... feel better soon
Sherry hope we didnt make to much of a mess in your pocket. glad you are feeling a little better
Jo So glad to hear you are also feeling better.. please keep us posted... miss ya
Jinie Paul PaulaM.. miss you ladies
MamaV hope you had a great weekend with your family
Lynda. so sorry you are having such a hard time coming off the effexor.. praying it gets better fast or you hugs
Hope all you wonderful Tammy ladies are having a good day
HUgs
Maria
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June - I had a terrible time with my left nipple itching a couple of months ago. Ironically, that's the side I had the mastectomy!
Phantom Purrs,
Jenn
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Junie.. I do have itching as well comes and goes... i had a bilat but most of the itching is on the left side.. which was the bc side and node dissection side, dont know if there is any correlation... feel better xoxo
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Thanks gals...I called the Doctor and when they called back I missed their phone call, so now I will see what they say tomorrow.
My mother has taken a turn for the worse again.....I feel like all I do is complain and my emotions are all over the freakin place. Just when I think she is doing somewhat better, she gets worse. She still cannot get rid of the pneumonia and now has bronchitis, been throwing up and the chills. The Nurses say she doesn't look good and of course only time will tell.....so all done with everything.....no wonder I am HUGE lately, stress and I do not do good together.....
Thanks for letting me vent, love to you all.
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Hi,
June, I often have itching, mostly beneath the breast but also on the mx side. I think it's caused by the stupid elastic in the stupid bra (I sound like a five year old. Wish I could find a bra that wouldn't cause this...) I've tried to find all cotton sports bras but they all have some elastic or Lycra. Think the sweating makes for rubbing then itching. Could also be dry skin this time of year...
Newfmama, interesting what you say re tamoxifen and a compromised immune system. Do you know if there are any studies that show this conclusively? I'm like my own personal mini-study but don't think that counts. I've been on antibiotics four times since August. Never been sick this much. Not fun.
Thanks, Shari0 -
Junie... your not always complaining girl, you have so much going on too! we are here for you. So sorry to hear that your mom isnt doing well... will be praying! here for you my friend... good and bad times... always.... xo
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Shari, yes, tamoxifen DOES inhibit immune system for bacterial or viral infections! But there is some research that indicates it might also improve immune response for cancer-fighting.
http://www.jimmunol.org/content/175/4/2666.long
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2633418/ (mouse studies)
There are lots of other studies as well.
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Thanks for the info Linda!
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June, so sorry to hear about your mom. I know how difficult it is for a parent to be very ill, then better, then very ill.... such a roller coaster ride and you just don't know what to expect next. Just try to be with her as much as you can, but you know she would want you to take care of yourself as well. Hugs for you and lots of love and prayers for rest for you both.
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June - You are not complaining. Just talking out loud and trying to sort it all out. So sorry about your mom. It must be very difficult for you right now. (((HUGS)))
Had a follow up with my BS today. Lots of pains in the lump scar area. Bottom line, it is the damn nerve damage and I will have to get more assertive with the pain specialist next week when I go back to him. I did ask about some recon to even me out and my BS did get me set up with a PS for Feb 1st. Don't know if I am going to do this but knowing my options is helpful. I can't do anything until summer anyway and I have to weigh this against having a hysterectomy come June. Right now my logical brain tells me that is more important. Will just have to wait and see. Oh! BTW - my BS can be so persuasive - I had told him I was taking a break from the Tammi and before I knew it, he had me convinced to go back on it. Go figure! I am going to go back on it gradually and see how I feel.
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