Bringing in 2014 with Tamoxifen!

L2girl

Hi, Kruise, 

Has anyone commented how gorgeous you look in your avatar picture? You look so happy, too. Were you dressed up for a special occasion? 

I have been lurking again for awhile because I am going through some things and haven't felt much like posting. But as far as tamoxifen goes, I am still doing pretty good. The only main side effects are still spotting or irregular periods, and extremely dry stuffy nose. But recently I have noticed that I have had to shave my legs and underarms more frequently, and my skin is getting very dry. Sometimes I too feel like I am turning into an old lady, though I recently turned 48. I am trying to moisturizer more, and wear sunscreen, and a big floppy hat when outdoors.

I am still walking 4 miles a day and eating healthy, and so far I have lost over 12 lbs since starting tamoxifen in January. I feel like the weight loss is taking a lot longer than it should because of tamoxifen, but at least I am steadily losing. Once I reach my weight loss goal, I plan to cut down to one walk a day, for only 2 miles. Right now I think I am exhausting myself. Don't get me wrong, I love to walk, and while I am out walking I feel really good, and strong, and healthy, and happy. I feel like I could go on forever! But then later in the day I am so exhausted and I think, "who am I kidding? I'll take it easier tomorrow." But then, I am raring to go again the next day, and I do it all again. I guess I am too stubborn! 

Anyway, hugs to all and have a happy Mother's Day weekend.

saphanarie

I've been on Tamoxifen for about 3 months now.  I've been pretty lucky so far not to have a lot of the SE's listed in this thread.  The only thing I've noticed is slight cramping of my calf muscles.  I haven't had hot flashes, night sweats, weight gain, depression or low sex drive.  However, having a bi-lateral has made sex a little more awkward for me.  Luckily, my husband has been very supportive and tries to make me feel sexy when I just feel awkward.  And, yes, I have had the "brain fog" too.  I actually lost a couple pounds when I started Tamox.

I love the tip about walking and have just started walking this week with my BFF who is also a survivor.  I'm hoping it will help with the tight calf muscles.  All my doctors have mentioned walking as being an important part of recovery.  Our goal is to be able to walk a half marathon and maybe even the Susan Koman 3 day, which is 20 miles a day for 3 days in a row.  And now that I'm done with my final exchange about a month ago, I'm anxious to get back to the gym as well.  I'm hoping that keeping my muscles strong will help support my bones while on Tamoxifen.

 

L2girl

hi, saphanarie,

I noticed this is your first post, so welcome to the boards! And thank you for sharing your experience on tamoxifen. I think it is good for those people fearing starting tamoxifen to hear that not everyone will get bad side effects. Keep up the walking. I really think it helps me.

Kruise

L2girl - you are such a honey!! My avatar was some photos I had taken in February - a year after my bc surgery. I celebrated the fact I came out the other side! I had never done anything like that before and so glad I did. The next ones I do my hair will be longer, my body will be 20 kgs lighter and I'll include my better half :-). Well that's the plan.........

Reading your posts now has inspired me to go for a quick walk now. I have some free time and instead of housework I think some fresh air etc would be most beneficial. The dog will love me too 😀

Keep well everyone xox

corky60

saphanerie, have you tried doing some calf stretches for the cramping?  Here are some that my physical therapist told me to do daily.  They are for the Achilles tendon but they stretch the calf.  I do them prior to walking too.

http://www.youtube.com/watch?v=JBafLfMXeis

saphanarie

Corky60, thanks for the stretching tips. I will definitely be doing these.   I saw my oncologist this week and she thinks the muscle cramps could be from the calcium that she has me on and not the Tamoxifen.  She wants me to stop taking them for a week and see if I notice a difference.Then to experiment with different calcium suppliments.

L2girl - thanks for the support.  Yes, I am new to this and it's nice have this opportunity to share stories. I wanted to share just for the reason you said, for those that are new to Tamoxafin to know that not everyone has these side effects.  I was expecting hot flashes & night sweats, but it never happened--so happy!

KatiAK

I have hot flashes!  It seems like for several days I'll have a few each day but they're far and few between, then for a few days they get intense! Like ... no wonder Alaska's had unseasonably warm weather this spring with the heat I'm producing! And each hot flash is accompanied by back pain in my thoracic, then on Sunday I lifted too much and tweaked my lower back (whining here). It's getting better but it's frustrating.

Overall I've been feeling pretty good. Able to go hiking and get things done. Got my garden ready to plant. I didn't have one last year so I'm excited!  My hair is longer now than I normally keep it but I don't want to cut it. I'm not sure I'll ever want to cut it.

I hope everyone had a good Mother's Day!

DawnCT

Stenokim- Thanks for the info on the lifting.  It sounds like a great routine.  Good for you for pushing through!!  Yes, lean and mean.  I am working on that too,  I will add the weight routine like you have suggested.  I guess a few minutes a day in addition to my walking will be manageable.  

I have been on the Tami for almost three months and just feel exhausted this week..    I was feeling so energetic and now have to really push myself to accomplish things during the day.  I feel kind of achy too.  I hope this passes.

Corky - I really notice a dry throat on some days and that lump in the chest feeling.  I guess it is worth investigating.  Do you find the Prilosec to be helping?   

Andimom - Welcome and so sorry you are having these problems.  I hope the Estrace is helping.  I lost sensation in my left breast after my re-excison and it is a loss so I have an idea how you are feeling. I really miss feeling my husband's touch!  Hopefully we will adjust and find a way around it.  

Dawn

corky60

DawnCT, yes the Prilosec helps but I'm taking it twice per day.  I just finished the six-week prescription today. I am to wait a week and if the symptoms return I am to restart it and get an endoscopy.  That's the plan.

thinkpink4ever

I was on Tamoxifen for 5 years from 2001-2006 after my first DX.  You know, I really can't remember how "not-so-good" it may have been for me, but I managed to stay on it, and I truly believe that it did its part at keeping the cancer at bay for awhile.  I also did a 2 year stint of Femara right behind the Tamox, and it must have helped too.  

So, it took 7 years for the cancer to make it's appearance again and we think it's been detected early like last time.  I really did feel as if I was losing my safety net when my adjuvant hormone therapy ended.  I will probably try the Tamox after my surgery is over, unless my doc recommends something else.  I'm 13 years older now, forced into menopause two years after my first battle, so I will most likely be more in tune to the SEs during battle #2.  

I think this thread will be very helpful to me.  Glad to join you ladies, and please know that I am praying for all of us!

One love,

tp4ever

MEG2

Good evening ladies, I recently read that diphenhydramine (Benedryl, Advil PM, generic sleep aids, generic allergy meds) can have a significant interaction with Tamoxifen.

There is some information on-line and I will be asking my MO when I visit with her next week but was curious if this has come up before.  To help with sleep I will take  3mg Melatonin and add half an Advil PM if I happen to have any aches/pains from the Tamox.  The Advil includes diphenhydramine and I am taking just half the dose  but don't want to challenge the effectiveness of Tamoxifen.  Has anyone else had this conversation with the Doc or seen any threads on this topic.

Thanks for your feedback. 

corky60

MEG2, Tamoxifen Interactions:

http://www.drugs.com/drug-interactions/tamoxifen.html

Kruise

welcome thinkpink4eva - love your name by the way - as I went to type it it wrote think punk ..lol. If only!!!!! :-)

It has been interesting to read your story. I wonder if you had stayed on the Tamox for 10 years as opposed to the 5 years whether it would have made a difference. They seem to be recommending 10 years now don't they. It was great to know you made it through those 5 years without too many bad memories.

Well ladies I am going to be absent for a few weeks - 6 weeks!! - as I am off on a wonderful holiday to Europe and a Mediterranean cruise! I will be thinking of you all but I'm going to stay off bco and try and make the most of this wonderful opportunity. So take care and I look forward to catching up on the posts when I get back. Keep well xox

Stenokim

meg, my MO said Benadryl is fine if you need it for a few days or a week.  

Good luck, Dawn, with the workout.

Since there's some talk of heartburn, thought I'd share my story.  I was not a doctor person, never had a mammo, cholesterol checked, etc.  always been very healthy.  I started getting heartburn, never had it before so I didn't know what it was at first.  So, I made an appointment with a doc for the heartburn and to get a routine 47,000 mile tuneup, ha, mammo, cholesterol, etc.  Took me a month and a half to get in to doc, as I was a new patient.  I was having the heartburn all the time every day.  I get checkup, they tell me I have GERD and also find I have BC.  I had heartburn up until the minute of surgery, which was a week after diagnosis.   Anesthesiologist even used an extra tube during surgery due to the reflux.  Divine intervention, I believe, but I've not had a single symptom of heartburn since I woke up after mastectomy.  God's way of getting me to a doc to find out I had something much worse than heartburn, I believe.  

KellyGreen

Just a friendly reminder that with the blood clot risks, be sure when taking your road trips to get out and STRETCH every hour or to get the blood moving. This is also very important on airplanes! We are planning our summer vacations and I'm reading about others vacation plans so this was on my mind!...

MEG2

Thanks for the link Corky60, definitely looks like diphenydramine for pain/sleep is not a good choice.  What is everyone else taking for sleep issues?

Has anyone had sleep issues resolve after more time on Tamoxifen? I just started on March 1 so am only into this for a few months.  Melatonin will help me fall asleep but I wake after 2 to 3 hours and then toss & turn for another 2 or 3 before I fall back asleep...all in all I might get 4 hours a night. On some nights even the melatonin won't work.  My job requires a clear and active mind (I spend my day with Access databases and Excel spreadsheets) and plenty of concentration, lack of sleep puts me behind the 8 ball.  I know Tamoxifen is my friend but ugh....

I'm sure the MO will have some advice.  There are better days ahead, take care.

thinkpink4ever

Kruise, that's funny!  And you know what came to my mind when I read "think punk"?  I thought "thunk punk"!  Too silly, huh?

And I didn't know that they were now recommending 10 years on Tamoxifen.  I need to start doing some research on that.

Enjoy your holiday - I'm jealous!  You'll have to tell me all about it when you get back...

One love,

tp4ever

DawnCT

Kruise-thanks for letting us know.   That sounds like an amazing trip!  Enjoy yourself and forget about everything to do with BC! 

RedReading

Hello?? Is anybody here? Are we all waiting for Kruise to get back in 4 weeks? Lol.

More things I have learned at the Living Well program. Symptoms of Estrogen loss.

Hot Flashes and Night Sweats.

Mood Changes.

Sexuality

Sex and intimacy.

Vaginal dryness 

Vaginal Discharge

Achy bones, muscles and joints. 

Memory loss - particularly recent memory loss.

Weight Gain

Osteoporosis 

I have only listed what the book says here, but if anyone is interested in discussing the solutions, I would be happy to chat with you about what I learned.

O and for almost all of them, exercise is one of the solutions. And they came up with some pretty neat ideas on that too.

Have a nice evening.

corky60

Thank you for posting this.  I've been learning through your posts and I really appreciate it.  I have some of some of those symptoms, that's for sure.

lovewins

I appreciate your posts as well.

thinkpink4ever

Thanks for the info.  I've had 8 of the symptoms on a pretty regular basis since my first diagnosis.  Now I'm wondering if I will have any additional symptoms with unexpected Round 2.  My oh my...

One love,

tp4ever

Monis

So many fantastic bodily changes to look forward to!  Hope they don't hit me all at once.

MrsDarcy

Good morning ladies

One of the newest things I noticed while on Tamox is that I bruise super easy !!  Even bruise in areas I didn't realize I hit.  It's crazy - I am going to have to be careful over the summer months (ie: legs, and arms) so that I don't look like an accident waiting to happen !!

I had my yearly appointment at the dermatologist yesterday - and after he found out about my DX and treatments, I was privy to a fully body checkup for melanoma.   I was very happy to walk out of there with NOTHING    I have a feeling every appointment with a doctor is going to lead up to some anxiety for a little while still.

But all is good  

Stenokim

red, thanks so much for all your sharing of information. It's so kind of you and appreciated.  Kim

MEG2

MrsDarcy ~ I've discovered that I am bruising very easy as well.  I got one while pulling weeds and doing some light work in my garden, odd but my MO mentioned this to me as a possibility so I didn't get overly concerned but I'm with you I'll be more careful now...

Thanks again Red for all the feedback from your support group. all good information.  Happy Weekend   

MyraVH

Hello ladies,

For those who have joint pains/stiffness and
muscle achiness, how bad are yours? Mine used to be just sore and now, I
can say it's pain and bothers me. My arms are shaky when I do my light
exercise ( had my reconstruction surgery 6 weeks ago and have yet to see
my PS for post-op) even without the 2 lb. dumb bell. I noticed feeling
the soreness in February but the discomfort is relentless and more
intense now. I was asked to stop Tamoxifen for a month to rule it out
but I have resumed taking it again since the pain didn't disappear even
without the Tamoxifen. And due to this, I haven't gone back to work
since I was diagnosed. I am a dentist and I can't trust my hands and
arms with these symptoms. I was told by my oncologist that: it's due to
effects of chemo and my body is still trying to recover from all the
onslaught it went through. I also read here due to being pre-menopausal
and now forced into menopause by the Tamoxifen. I am wondering what
other explanations support/answer this situation. I still continue to
exercise and do my walks, go for hikes even if I fell crappy. At times
the pain affects my attitude I really get cranky and just want to be
left alone.

I want to know if I'm the only one feeling like this.
Ever sInce my hair started growing I thought it's going to be smooth
sailing all the way.

momwriter

Hi Myra,

 I finished chemo (adriamycin, Taxol,)  a year ago and Herceptin at the end of January. I started Tamox in June 2013. I was VERY achy from the taxol. I felt joint discomfort every time I even bent down to pick something up. It gradually went away during the months after chemo. Now, I'm amazed at how I don't ache anymore. The tamox gave me muscle cramps- I take Magnesium for that, and someone also recommended fish oil). Now I just get occasional cramps if I skip magnesium even one day and I get mild hot flashes. I've also been doing yoga and I think that has helped.  

That's tough about your work- but I'm sure you will recover. You've been through a lot. I hope you take the time to be good to yourself and enjoy the break from work. Life will get back to fairly normal. 

Stephanie

MyraVH

Hi Stephanie,

Thanks for the reply and encouragement. Seems to me our bodies react differently even from the same meds . I never got muscle cramps but I do have the hot flashes. I used to do yoga but with the painful wrist, I cannot support myself to do down dog or plank but I've been doing other poses (sun salutations and leg balances) and only stopped due to the reconstructive surgery. Will definitely resume yoga again once my PS lets me do stretches.

Salina888

Myra- My muscles went to crap a month after my last chemo, which was about the same time I started Tamoxifen.  It was really bad from about week 3.  Then it slowly got better by week 8, I had my exchange on week 8 and stayed on light duty for another 12 weeks.  I'm running and lifting weights again, but alot lighter, and slowly increasing.  Some days I feel more tired then others.  Just listen to your body, if it's tired take it easy,  It will get better little by little.