Bringing in 2014 with Tamoxifen!

Hi Everyone

Im new on here, but not new to this horrible life changing disease!  I am coming up to one year cancer free! although, like most of you know it certainly doesn't feel like it does it, the worrying never seems to go away!  I had a double skin saving mastectomy with reconstruction as the type I had was at higher risk to come back on the other side.  The type was Invasive Lobular Carcinoma, and although fairly small, 1.9 cm, it did travel microscopically to my first lymph node.  So obviously a year of hell and back through chemo and now almost one year of tamoxifen as well.  Ive recently been questioning the quality of life with the SEs of tamoxifen vs my chance of recurrence or mets.  At first the nausea and headaches were bad, but have gone away, then the pain in the joints had me running to the GP every other week fearing that I was dying.  Its been almost a year on this drug, and the hot flashes did improve but are back again and I wake up every day in pain somewhere or other in my body.  The latest joy is that I am now gaining back all the weight I lost during treatment (not impressed) and no Im not too thin I am of average build already and work hard at trying to maintain a healthy weight.  However, here is my question to all of you ladies!  I know what cellulite is, and I do and already did have my fair share unfortunately, but in the past 3 weeks its like its quadrupled or tripled over night on my legs, and they seem somewhat a bit swollen as well. Has anyone ever come across this?  My GP doesn't feel they are swollen, and suggests it may be from the poor vein circulation and issues in my legs.  I don't agree, but keep asking and am at a loss as to what it is?  Im thinking it is just another nasty SE from the Tamoxifen?

I started May 1st. I started out taking it in the morning but switched to nights as I was having insomnia issues. It did seem to help. Also I am taking the Effexor. So far so good with that. My biggest issue was the hormonal roller coaster. Holy Cr*p I was a basket case. It has settled down. Thank Goodness. I could not have continued that way. I have gained weight!!!

Capster, I'm in on that one too. It's a definate SE. How are your hands girl? I am totally aware of what SE's Tamoxifen causes because I was awarded a medication vacation. I've been back on Tami for 2 weeks now and it is all coming back. The fatigue, the joint pain, etc. 

Call your Onc not your gp.

Please. 

Hugs

Deb

Headeast, I was allowed to go off tamoxifen for 2 weeks. That was supposed to flush it out of my system so I could start over . I had been on it since January 28th. 

mouche, louanne, I have posted before but since you asked...I take my tamoxifen at 6:00 pm. I've been on it since January. No side effects except for a missing period for last six months. I consider that a benefit.  I work out regularly.  I sleep well, no bone/joint pain, no weight gain, very stable mood.  Never have had a hot flash.  I've been cold most of my life, was thinking a hot flash might be nice once in a while, but I'm still cold most of the time.  I love 90 degree weather.  Keep in mind 70% of people have no SEs from tamoxifen.  Kim

I'm on Watson also.  Maybe the Bp is rising due to your anxiety worrying about SEs. I've not heard of tamoxifen causing high blood pressure.  I hope it works for you and that you're SE free.  Kim

my mom deals with majorly high BP, she's on many meds but occasionally has spikes, like 200/100, stroke level.  We have linked hers to her diet...she's always had salty meals that day or the day before the spike.  Congrats, though, on the weight loss.  That will help with everything!  Kim

Thanks.  You too, Louanne!

Thanks Kim, I have been taking it at 6pm with my meal, so far I'm doing good, have had a few warm episodes but had that before Tamox (age 53) also notice that it makes me a little dizzy. It's still early as it's only been a week, praying that my SE will be none to min.

I've only been on it one month, but wanted to add my experience.  I was terrified of SE's because I seem to be hypersensitive to any drug.  I've really had none at all, maybe warm a few times at night, but not really hot flashes.  I feel like I'm dealing with insomnia right now, but I think it is my mind won't turn off.  When I was dx'ed it caught me off guard, did what I needed to do with a smile and it is now I'm really dealing with what just took place.

I'm on 20mg the Teva brand and take it at night.  I have upped my exercise and am really trying to get on with my life.  No weight gain, no fatigue all in all I am doing well.  My MO only prescribes one month and has you come in to discuss SE's etc.  That appointment is tomorrow, and then I think they prescribe 3 months.  They want to ensure we are doing okay and aren't about to fall off a ledge and be non compliant.  

My only issue is my busy mind, and I think that will take time.  I pray that I continue with minimal or no SE's.

rettemich - you mentioned the "hormonal roller coaster".  That is my biggest fear when I start in a couple weeks.  Did you find your emotions evened out with time…?   Was your family able to see the difference, or was it just elevated internal stuff…?  I am mostly the even keel one in my family, I have a wonderful husband who struggles with frustration/anger, and a dear daughter who is nearly 14 and has her own hormone issues.  I hate the thought of not being there for them, or responding with anger myself.  

Feedback from any of you ladies is appreciated, please!

Justachapter...your name says it all. I totally get what you're saying about the mind not turning off.  I had that also.  Glad you're not experiencing many side effects and moving on with life. I've done the same.  Doctors are so different. My MO prescribed me a year's worth and told me to come back in nine months or call if I have any problems. 

count...I have had a very stable mood since starting tamoxifen. No swings at all.  I think some of it is the hormonal balance I have now and some is just appreciating life and the people and things in it more, more than maybe I did before DX.  I do have a 16 yr old daughter to deal with, like you, so that's tough once in a while, like once a month actually. Lol. Hope it all goes as well for you as it has myself when starting tamoxifen.  Kim

Hello, everyone. I posted about his elsewhere, but thought I'd ask in here. I was on tamoxifen for a month and it gave me three ovarian cysts that were painful and rupturing. I learned that this is a side effect of 11% of women on tamoxifen. I stopped the tamoxifen and of course the cysts resolved and my period came back. I am scared to go back on it, because I really need my ovaries… I want to have children in my future. 

I thought hormone therapy was supposed to be the easy part? I honestly don't know if I can even say it's better than chemo. Chemo side effects are much more terrible, but it was only for a few months with an end in sight. Hormone therapy side effects, although not as terrible as chemo, are still bad enough for quality of life (at least in my case) and is recommended for YEARS. My onc wants me to give tamoxifen another go just to be sure I can't actually tolerate it and I'm scared. I also dread the thought of the menopause symptoms again and possibly losing my period. I just started to feel normal

I am ER+ (83%) and PR+ (98%) so you can see why the hormone therapy is important, but I just don't know what to do. I've been debating for months now.

KatiAK, I have many new lumps and bumps in the radiated breast.  One bump is a seroma that never was drained or resolved itself.  When I opted for the lumpectomy and radiation I was told that I would have to learn what the "new normal" was for that breast.  My MO says that there is a lot of scar tissue from the radiation.  I've had two mammograms since radiation and they were both okay.  It's just something that we have to live with and learn what is now normal. 

Thanks ladies. I remember my surgeon mentioning the "New normal", but I had forgotten. I've had 2 clear mammograms and my surgeon does an exam every six months but I'm still learning to cope.  I'd like to drop about 15 lbs.  I eat better but it's hanging on.