Bringing in 2014 with Tamoxifen!

lovewins

Hello Ladies....I have been on tamaxifen for about 4 months now and I have a red splatch on my face next to my mouth about the size of a quarter.  It is red and hurts a little and very dry but so far not flaking.  It has been there a week.  I called my MO and they said not Tamox or Herceptin related.  Anyone else having this problem?  Gosh is it ugly!

Gardengirl66

hello ladies....I will be joining this group now....this weekend I should be starting tamoxifen ...let the party begin. This is the part of the treatment  that I am the most worried with.My oncologist  thinks I should do well on it ...as I already have chemo induced menopause , arthritis and hot flashes....some of the side effects which tamoxifen  usually cause. So  we will wait and see..... Looking forward to getting to know everyone in this group. 

rettemich

Redreading, Thanks I will see if they have anything like that. I definitely could do that.

justachapter, Are you going to MD Anderson? I go to the one in Gilbert. I started meeting with Sam from the IO and we just talked about that very thing the other day. It is Really an interesting concept. I can see where the mindfulness can really help. Can't wait to delve a little further.

justachapter

Rettemich, Yes I go to MDA in Gilbert.  My oncologist is Dr. Bahadur and it is her NP I see now that talked to me about mindfulness and she wanted me to see someone, not sure if it is Sam.  I wonder if we have some of the same Dr's.  I'll send you a PM.

rettemich

The mindfulness has been really helpful to get my focus back. And Sam is so sweet. Dr. Rao was wonderful he really listens.

Kruise

hi ladies

It's been quiet in here for a while - how is everyone doing? I've just started back on tamoxifen again after my latest appointment with oncologist. Only a couple days in so far - all ok at this stage.

I've been doing a Living Well course at our local hospital with about 6 other ladies. Covered stress yesterday which was good. Also interesting hearing others stories and viewpoints. Next week is side effects of treatments and nutrition. 

rettemich

I went to San Diego last week and didn't realize how much I missed my Yoga classes. LOL

I just can't handle the weight gain from the Tamox, not sure what to do, as when I discussed with MO last visit, she said "we all gain weight as we get older" Wait! What?

Also getting more bloating. The fun never ends.

BayouBabe

rettemich - don't you love how they blame side effects on getting older.  Ugh! Funny, I don't see my non cancer friends "aging" as much as I have in the last year!  At this rate, not only will I feel like I am 100, but will look like it before I even turn 50!!!

SueBe

Will be starting tamoxifen when the chemo is over. I did this when I was 40 and then stopped. Had a recurrence and now will certainly be on it for a while. Hoping the side effects will be different as I wont be per-menapausal like before. I suffered from extremely painful cramps for about three days every month. 

BayouBabe

SueBe - hope the drug is kinder to you this time around.  BC sucks, so sorry you are facing the beast a second time.  

corky60

rettemich, what works for me is a program called Fitday.  It's loaded on our desktop PC but it's also available by subscription.  Maybe for smartphone too--not sure.  It lets you track carbs, protein, fat, fiber, calories and so much more.  It really works.  Good luck, corky.

rettemich

Good tip, I just started working with a nutritionist. She recommended an app called Fit? I ended up throwing the paper away as my kitties got food all over it. If I just wouldn't feel so hungry all the time.

justachapter

I have a question, there is really no good board for it, and since I seem to post here most often, maybe someone has an answer.  Lumpectomy was March 12th, saw the surgeon twice and have one more f/u with her in 3 1/2 weeks.  I know we all have lumps and bumps near our scar tissue, but I'm pretty sure what I feel is the biopsy clip.  I asked the MO NP if that is what it was and she though it was.    At the time I just wanted to know what it was, as I had felt it since before surgery.   It is hard and when anything bumps it, it is painful for a few days.  While the clips are tiny, I have ver little breast tissue (have implants behind my muscle, had them prior BC), my skin is thinner in that area from radiation, so you can feel everything.  I know my cancer was near the skin as they did 2 weeks of boosts and the entire time I had a bolus.  I think it has formed scar tissue around part of it, which makes it larger, plus I had a large hematoma from the biopsy.

So after that long winded description, is there anyone else that can feel their clip through their skin?  Or has a painful area near their scar.  There is definitely and area along my scar that has formed scar tissue, but this is not scar tissue.

Kruise

hi justachapter - no I can't feel my clips but they are pretty much in the middle of my breast between chest wall and skin. I do have quite hard scar tissue though and the scar tissue seems to go up higher than my breast too. Plus my breast gets achy and bloated feeling at times. It is 9 months since I finished rads.

I don't suppose it's a problem unless it's really annoying you. 

Lav

Hi Ladies this is my 9th month taking tamox and my oncologist is wondering why my periods havent stopprd yet.  Its less like I get it for only a day or 2 now.  But I still get it.  Also Ive noticed alot of hair thinning.  I eat healthy workout , do my juicing drink alot of water too and yet my hair is falling like crazy and I seem to be suffering from low blood pressure since the last 2 weeks.  Headaches,tiredness and fatigue.  Im really loosing my patience with tamox and just want to stop.  I want to live normally again but I cant seem to! From one week before my periods until my periods are over the depression is horrible I just cry for no reason.  Let me know if any of you are going thru this symptons pls.  

Stenokim

lav, I don't think everyone loses their period, though I have, but I've heard of plenty that still have periods.  I have been on tamoxifen about as long as you, and I have noticed a little more hair loss.  I always lost a lot of hair but it seems a little more now.  I have heard of a lot of woman taking Effexor to help with some of the side effects.  I'm sure many others have suffered the same SEs that you are and will give you some guidance here soon.  I sure hope things get better for you soon.  Hang in there.  Kim

KatiAK

lav - I'm 9 months into Tamoxifen as well. I started the low dose Effexor 6 months into it to help combat some side effects. It's helped for me. I still have hot flashes and some mild headaches but it's really helped with mood swings, fatigue and tears. My periods stopped with chemo and haven't returned. Not sure I'm truly menopausal but I was getting to that age. I have heard people continue to have periods.  Good luck!

rettemich

I have been having issues with gaining weight, now officially in the diabetic range,  headaches, feeling famished all the time, and sweats. Not just hot flashes as I can walk into a room and just start pouring sweat. It was becoming embarrassing. I put a call into my MO, wanting to discontinue the Effexor. Instead she is having me take a month off of Tamox. I admit that surprised me. Everything I have read pointed to the Effexor. Guess we will see how it goes. I am just afraid she will want to switch me to an AI, I really don't want to risk my bones. And I don't see how the SE would be any better. It just never seems to end does it. Thanks for letting me vent.

ndgrrl

I have been on Tamoxifen about a year. I did have quite a bit of hair loss at first, but it has totally stopped. My husband said I have a lot of hair again. I am also on a low dose Effexor and it does help with the night sweats I was having. The doctor double the dosage at one point and I wanted to eat everything in the house so I asked him to lower it again. I do still get occasional night sweats but they are way better now.

Mouche

Things are calming down for me as I start my 4th month on Tami, I was having severe joint pain and my right ankle/heel was so painnful that I could barely walk. But now the pain is much less and I am able to get in my daily walking routine, I still have the flashes, they are not to unbearable and my hair is still thining some.

My Oct 10th MO appt was reschuduled for Nov 3rd, and at first I was going to tell her that I wanted to stop taking this drug, but now that things have calm down some, it has become tolerable. I will try and stick this out, the weight gain SUCKS!!!

NMdBC2014

Hi Ladies, I start Tamoxifen tomorrow, I'm worried how may body is going to react, how I'm going to react.

I'm not sure if I want to take it.

Chemo has already put me into menopause, I have aweful hot flushes, terrible joint pains, or so I think, I'm praying Tamoxifen does not make it any worse.

Mouche

Had my appointment today with MO and she was glad to hear that I no longer wanted to quit the Tami, she thought that I was ajusting really well and said she would see me in a year!!! I had my labs done as well, I also gain approx 6 pounds since last visit.

I told her about my hair thining and she just looked at me and said it could be something I'm using on my hair and to take biotin, (yea right) but her nurse who check me in said, "oh I here that a lot", about hair thining.

She told me to call if things went back to the way they were a couple of months ago, but she felt like the side effects were leveling out and would only get better. I pray that too!!!

Kruise

I found the Tamox helped my aches and pains NMdBC2014....but not my weight loss attempts at all! Good your symptoms are easing Mouche and you can keep on with it. 

Ridley

Mouche - I had hair thinning, but not sure if was related to tamox or surgery (se of anaesthesia). Anyway, it stopped.  I did start biotin, and have continued on it.  Not sure if the thinning would have stopped anyway.

Also, I recently went back on tamox after being off for two weeks in prep for surgery.  When I started back up, I decided to take 10 mg in the  morning and 10 mg at night.  My onc is ok with that approach (they used to prescribe it that way and there is an nih study that confirms bio equivalence).  Any how, I think I'm having fewer side effects (crossing my fingers).  It has only been about 4 weeks since I started to take it this way, so things may change in future, but for now they are better.

ndgrrl

Hi, I also had hair thinning while on Tamoxifen.  It did stop after about 8 months on it and it reversed so I now have to get my hair thinned again. 

Mouche

Thanks Ladies for your replies, I pray things continue to go well for everyone!!!

Kruise

Merry Christmas to everyone and Happy Holidays. Enjoy spending time with your loved ones. X

Stenokim

Merry Xmas to all. This is not the right forum but I am a little freaked out. I have a swollen, tender lymph node under my arm, about half the size of a pea. Of course it's BC side and positive lymph node side from a year ago. I got the flu or BAD cold starting Xmas eve. Was in bed sick for two days. Swollen lymph showed up 12/26. Do you think it could be related to illness and not BC? Has anyone else experienced this? Thanks for any feedback. Kim

Stenokim

Went to doc, all was fine. Node is gone now. It was all from flu.

Kruise

great news Kim! here's hoping everyone has a great 2015