tamoxifen

The major side effect I had from tamoxifen was hot flashes, but I did have a lot of joint aches the first several months after I started taking it, especially in my hips.  All side effects dissipated after a while, even the hot flashes started lessening after the first two-three years.  I finished up my five years in July, no regrets at all about taking it.

The shortness of breath in all probability is from your radiation treatments.  I suffered terribly from it the first year until I got my PC to take me seriously.  It is fairly common, some refer to it as radiation pneumonitis, which is basically inflammation in your lungs from the rads.  My PC gave me an inhaler, and a prescription for Advair, which I was probably on for about 6 months.  It is amazing how much better I felt.  He also gave me a muscle relaxer to take before bed, and that helped tremendously as I felt so much more human once I reestablished my sleep pattern.  I have not taken any prescription meds for two years, so they helped me reclaim my life, and at this point I don't need them.  Fibromyalgia is pretty common among cancer survivors, so if you don't feel any better after a time, you might get screened for that.  I do have friends that went off the tamoxifen onto an aromatase inhibitor and did better with those, but they had to have an ooph or the lupron shots if they were premenopausal.  I found my PC was better at addressing my post treatment issues than my oncs.  Hopefully you will feel better soon.

I've been on such an emotional roller coaster about the Tamoxifen. I filled my Tamoxifen prescription on Aug 30th but I just haven't been able to bring myself to taking it.

hello sweetie, stay on the tamoxifen it really works to prevent recurrence, I was on it for 5 yrs and Im now 16 yrs, 17 in December cancer free(Praise God) you will have some side effects, but some of mine was from the chemo and radiation treatments, I pray that this will inspire u to hang in there, it,s worth it.  L mast,0/3 nodes,stage 2, idc, cytoxen,adriamycin.  God Bless Us All.   msphil

I found your comment about shortness of breath interesting in that I started having "episodes" last week - a few days after starting Tamoxifen.  I have been wondering if it is the "T" or if it is the stress finally catching up on me.  I was thinking stress but after reading all of the comments here now I wonder about it being caused by rads which I finished 3 weeks ago.  It is so hard to figure this out!

Hang in there and thanks for posting as I wouldn"t have associated this with the rads.

Kim

NOOOOOOOOOOOO!!!!!!!! don't tell me that tamoxifen enhances the joys of stupidpneumonitis!!!  NOOOOOOOOOOOOOOOOOOOOOOOOO..... I just got done convincing myself I was imagining or having flashbacks to earlier this summer.

Cr@p.  I am on Tamoxifen, started August 28.  I finished Zaps in early May but promptly came down with radiation pneumonitis and my oncologist wanted that cleared up before I started tamoxifen.  I managed to get better without meds and just rest ---took until mid july---and finally started the tamoxifen.  No real side effects so far except maybe a headache but I'm under stress so it could just as easily be that. 

But walking up the hill to the bus last night I did notice myself getting out of breathe.  I always describe it as something grabbing me around the lungs so they can't really open up and take in the air.  [by the way, sometimes yawning will allow you to get a bigger breathe]  I was thinking maybe it was just my imagination. . . .or at least I told myself it was my imagination. cr@p cr@p CR@P

I DO NOT WANT TO BE SICK AGAIN.  I have a very thick immediate supervisor who had the chutzpah to say to me "but you aren't sick anymore, you said you were better," to which I replied, "I have been diagnoised with breast cancer, I'm still being treated, I just don't go to rads every day."  He will not take me going back to easy days well at all.  Oh heck, lets be honest, I won't take it well either.

Oh I am taking the tamox because I was a grade 3 that was going to be invasive at some point and because my boobies are funky and likely to develop other "stuff."

Wow! I miss one day of Tamoxifin and I feel somewhat human again! I need to refill my scrip Friday. Even though I am taking radiation treatments...I feel more "normal" then I have for weeks! Hummm that says a whole lot.

For what it's worth, my BS and I decided against Tamoxifin for me....I am already on a whole aspirin and Plavix, and as clotting is a possible SE, it was not a safe route for me to go.... I am happy with this decision....No regrets.....My rec. rate is about 5%, so I think I made the right choice for me...

Sandy from Cincinnati

Similar to previous poster, Sandy from Cinci (easyquilts) - Had lumpectomy and 30 rad zaps, met with onc. who gave me the option to take or not take tamoxifen -- given 95% chance of no recurrence w/out tamox. or 97.5% of no recurrence with tamox. -- and continue to be happy to have opted out. I did fill the prescription, and if my mind changes I know I can go on it, but truth be told, I sleep well at night, no aches, and am happily still peri-meno at age 45, no flashes, no tiredness (but never real felt tired during rads., just burned), so good inner peace. I do take a baby aspirin a day, just that, no other meds. Such a personal decision, thankful to have options.

sorry about dup. post below.

Just an update for anyone who might be reading this in the future.  I am now 4 months into tamoxifen.  My hot flashes have receded.  I still get them occasionally, but not nearly as intensely as I did in the first two months.  It may be the cooler weather, or it  may be my body getting used to the tamoxifen.  But the hot flashes are very manageable, and I am now sleeping pretty well.  Because I had a hysterectomy before all this started, I have fewer risk factors with tamoxifen and (assuming the hot flashes remain manageable), I am planning to stay on it for 5 years.

thanks for the update ThumperTami, good to hear how well you are managing.

Julie E