Bringing in 2014 with Tamoxifen!

somewhere on theses boards I read " IF cancer comes back its gonna have to surprise me more then the first time, I'm NOT sitting around waiting for it" I love that !! I'm not waiting , every single day is a new gift for me now. Nothing we can do about yesterday, tomorrow is not here yet BUT today we can live, make a difference , love, laugh and tell those around us what they mean yo us !! Today I am strong

So far, I have been on tamoxifen for a year....I have had more troubles with aspirin! So far so good. Risks and benefits.

Annika, I love that mind thought and try to think the same way.  I just look at it as something that happened to me, I fixed it and I'm moving on, with much more appreciation for the people and other great things in my life.  I had my 48th bday on March 1st and told all I was just happy to have another one and plan on many more.  

Instead of quitting Tamoxifen because it seems to be making the neuropathy worse I decided to take it with supper instead of with breakfast.  I really want to figure out a way to make this work because it is the last hormonal I can take.  My MO said that Femara and Arimidex would be worse than Aromasin as far as SEs are concerned.

Welcome Gilded! Glad to hear your SEs are minimal! 

Have any of you noticed difficulty processing alcohol? I went to  wedding Sunday, had some drinks, and they took what seemed like forever to process through my system. I don't drink very often any more, but sometimes, you just wanna cut loose! I guess i will just have to live without that too.

 I am finding that my joints are getting less painful every day, just a teeny bit. I am hoping it keeps heading that direction!

I will have this scan on Thursday. Still aches, pains, getting out of chair like old lady. Some days are better than others. My MO says that if it were cancer it would probably be getting worse.But it's been ongoing and they want to rule it out. Some days are better than others. Most nights suck. But we will see. Hate to put myself through this. But so it goes. 

The good result will be that I just hurt like this for non-cancer reasons. More to come.

Hi Ladies-

I have not checked in for a bit. I am on Day 15/16 with Tamox - I began w 5 mg a day and went up to ten. I took 5 mg am and 5 pm. I was so tired on it. And last night I got hot flashes I think bc I woke up so hot about 4 times. I have had night sweats before and that is not this was. It wasn't like being microwaved just woke me and was not comfortable. I was also very anxious - my anxiety has been much better for a while so I think this may have been tamox.  The worst is my emotional state. It seems to have worsened on Tamox- i am super sensitive to drugs. I cant take an anti -depressant bc of the SEs.  I also was achy but I hurt my back this weekend. But prior to that I felt overall achiness and just feeling down. I did not take the tamox this am to see how I felt.  I wanted ot get up to 20 mg to see how I felt!! geez!

I read the post that dealt with the emotional feelings once you get done with all the treatments and are on your own.  I can so relate. I found myself wondering what is my life now?  I am just down. I wrote before that I lost my heart dog on Feb 27- this came after a year of losses and cancer. I am still so sad about him. But his loss opened up a flood gate of things I was keeping in. I am going to seek counseling - my therapist died last June of cancer- we were very close and it will be hard to see another person but it is time. 

I also have some other physical issues. I have had some sinus and reflux issues that have been driving me nuts - making me choke etc. My naturopathic gave me some supplements that have helped.  I seem to be having referred pain from my breast and shoulder across my chest and it affects my neck and throat. Since my throat was so twitchy from the other stuff I am super sensitive to the  weird feeling i get in my neck and throat. It make me so anxious and I get so mad that I feel this way!  It is worse bc I was shoveling manure (I have horses) with a heavy shovel over the weekend and I must have hurt myself. Anyway I think it is time to see the RO for follow-up..my breast still has a bit of healing to do (I ended rads Dec 24!) but I am feeling like I will need some physical therapy on my arm and shoulder.  Plus maybe I need to rule out any lung issue related to rads(im sure it isnt).

I am an avid exerciser and I have not felt like doing much lately. I just dont feel well many days- and I am very down. Is it the tamox- or a combo - I did go off long term Birth control and did not get a period for many years.  I still have not gotten a period since going off and it has been 48 days since i stopped the birth control! (I am 50). I can handle the tamox SEs of soreness and even hot flashes - its the emotional stuff that is not good for me. I just feel like crying all the time. The anxiety and fatigue are hindering me too. I want to feel better. I may not take the tamox tonight either and see how I feel tomorrow. I ordered DIM and wanted to take it along with the Tamox but it is taking forever to get here! Either way I definitely need therapy. I handled the cancer surgery and treatments like a champ (after the initial dx) and then this pow! 

Thanks to the ladies who posted about their emotional state after treatments ended. I at least feel like it is normal. My friend who had BC years ago sent me a blog that discussed these feelings and the doc who wrote it called it being at the edge of the cliff. She talked about trying to push away the fears that haunt you. I think I like the mantra noted above "what if the cancer doesnt come back"...i am going to use that - thank you:)

It's been about a week or two since I switched generics of my Tamoxifen and can not believe how much better I feel!!!

Sweeney, I felt like you....emotionally I was down and depressed and just couldn't shake it.  My first month I had Teva brand, then Riteaid switched me to Activis which was the month I had such a hard time.  I've been back on the Teva for about two weeks and feel a TON better.  Actually, I even feel a little better than I did before this all happened...a bit more clear headed and able to focus.    Maybe blocking estrogen has some benefits .  I have been experiencing some leg cramps this month and some cramping in my knuckles.   But nothing too horrible.  Maybe a different generic brand could help.  I need to do more research abt the fillers that the diff brands use but I was definitely reacting to something differently.  

I can definitely relate to everyone's postings about fear and anxiousness.  I found myself researching the protocol for intermediate Oncatype numbers again last night.   I had to go to three docs to get a consensus on whether or not to do chemo.  One said....no, it's only 22 and over 25 is when they consider it.  Another said Yes, because I'm only 40 and have a longer time for recurrence.  So I saw a third who came highly recommended with early stage cases.  She said chemo would make an incremental difference on recurrence rate.  She said she would do it but did not think I needed to put my body through chemo for a small improvement rate.   I should have known I'd second guess my decision.  

Now that the dust is settling, my surgeries are relatively over (although it's been suggested I consider a hysterectomy bc of some previous issues coupled w the risk of endometrium cancer from the Tam), I'm questioning whether I should have done more.  Should I have had the Mammocite (?) test done to get a more definitive rate of recurrence risk?  I read that these feelings are very normal bc when we are in treatment, we feel like we are actively fighting etc.  After that all ends, the reality of it settles in a bit more and we are left to trust.   I think this anxiety will begin to subside though.  Its a "new normal" as they say   I told my husband that I think this is when my faith is really being tested even moreso than with my initial diagnosis.  

I'm thankful for these boards to know I'm not alone in these feelings.  

JWoo, you asked about Tamox and alcohol. I absolutely noticed a difference. I no longer feel the pleasant buzz from a glass of wine. Nothing. Nada. It's the little things ... And I miss that buzz! As a result, I have stopped drinking almost completely. Haven't bought alcohol for home use since October. I think my skin looks better since I cut out the alcohol, so there's a small consolation. 

Runhappy, think of all the chemo side effects you bypassed. Keep looking forward, we don't have time for regrets. 😃

My heart aches to read of women on Tamox going through emotional distress. Tamox is a powerful drug. I hope those of you reading this will realize Tanoxifen is a choice and you shouldn't compromise your quality of life, or feel pressured by your doctor. Especially if you are recovering from surgery, chemo etc. Give yourself time to heal. 

I'm taking Tamox as treatment, not preventive, and not sure how much longer I can take it. Grateful for extended life, but I want my life to be happy. Night sweats, crying jags, skin sensitivity, libido loss -- it's a constant struggle. 

Gildedcage - I hear you! I think I thought ok I am done with the treatments and I can move on- I should be happy. And sadly I am not!  I know people that have not had cancer probably cant always relate to how a person might feel after the treatments. I never considered it until I began feeling down. I will be seeing a therpaist-  I was told she comes to your home! I am not sure I like that bc I will have to make sure it s clean! Maybe meet at church or something!

RunHappy - I had an Oncotype of 18. 1-17 was low and my MO said ALL her patients in the mid-range did chemo. Well i wondered how many that was exactly bc she is very young -but I never asked her that. At that meeting she asked if I wanted to do the mammoprint test and I agreed. I went home and researched about mid-range oncotypes and decided not to do chemo. The I called and asked th MO not to do the mammoprint.  I will admit I struggled with the decision not to d chemo. I didnt sleep well for a few days after but when I got into rads I thought of it less. Well after I asked my MO NOT to run the mammoprint (2 times) and she never cancelled it and it was run. When I went to meet her after rads were done I was determined that she not give me the the results bc I had already made my choice so why know? Well she told me as I was hopping up on the exam table...it came back Low.  So my choice to not do chemo was affirmed and yes i felt much better. But I was mad at her for running the test anyway. And I was told my insurance would cover it but they didn't...$4000 test.. I am dealing with this now with MO office and the company that does the test. So if anyone does get the mammoprint or the panel make sure it is covered. I have BC BS and Agendia is not a BC BS participant...so my insurance said if I had met the deductible for non-participating providers they would have paid 2000- but they applied that to the deductible (but I could not have afforded the 2k left over).

Having cancer provides us with lots of decisions that we have to make. None of the choices seem all that great to me. So we do our research and we make the choices and try to move on.  

I have been given a therapists name. I need to speak to someone for sure. I am not taking the Tamox now (skipped yesterday) and i feel less depressed and hopeless than I did a couple days ago.  I am hoping to see RO today bc I have had some issues that I am getting concerned about - want to rule out lung issues from rads - then if I dont have that we can begin getting PT for my cording and sore breast and chest area. I am not a patient person and I get sad that I dont feel well and I get anxious when i have certain physical issues. I am considering not staying on Tamox. bc of the severe emotional SEs - and that gives me anxiety and i need to get to a point that I can live with my choices and move on and enjoy life. I will speak to MO about all this..I can maybe take an AI bc i may be in menopause. She wanted me to take tamox for 2 yrs. My Tamox is the TEVA brand...i was bummed bc it made me feel crummy and many said they felt good on that one!

I know I cant have my old life back and that makes me sad but there is nothing saying my new life cant be joy filled. I try to find joy in each day but the last few weeks have been hard. This too shall pass. Once I make some choices and figure out this lung/chest thing I am sure I will be a bit better. 

It sure seems like the hot flashes are getting more frequent and more intense.  I just started month 4.

I Thank you for the info KatieAK and Salina888 but darn it! I have been taking Tami for about a month with no side effects and was hoping I was going to get by without the hot flashes!   Your posts helpful in that I won't be shocked If they arrive.   

Hang in there! 

Hello Ladies,

Having daily ache and soreness on left forearm and elbow and pain on right wrist. Recently there's shooting pain as I hold a pen to start to write. I'm worried that this is going to affect my workr (dentist). I'm still off from work though and I hate to find out later that pain is still there when I get back to work. Started Tamoxifen on 20th January 2014. Told my NP last night and she said either stop for a month or they will switch me to something else. I wonder if all the discomfort will ever go away. I'm seeing my MO Tuesday next week.

Hello everyone, room for 1 more?

I started tamoxifen on Jan 28th, so almost 2 months down now. My oncotype is a 28, but my MO and I decided against chemo. Apparently, it doesn't work very well for my type of cancer anyway. However, Tamoxifen does - cuts my chances of recurrence in half. So I'll be staying on it until she says stop which will be in 2 1/2 to 3 years. I take it each night before bed, but we eat late so that timing is ok for me. I don't forget that way.

My back hurts all the time and changing position from sitting to standing (or vice versa) makes me look like I'm 103 yrs old. But it is manageable. 

I was peri-menopausal, so the night sweats and hot flashes were already part of my life. With my dx tho, my Oby/gyn gave me gabapentin and Effexor (37.5) - MO said that was fine - and as long as I remember to take all my pills at exactly the right time, I'm much better than before. I can handle a few each day/night but hourly was just killing me as I can't sleep though them and was getting  no good sleep to help repair my body.

I also just finished rads on Thursday so I have breast pain and some of those itchy bumps. I see both my MO and RO again at the end of May. By then I'm hoping some of the SE's have either gone away or are at a manageable level. 

So, that's me. Congrats to those who have recently finished rads or chemo! Have a great weekend.

Kruise- i have teeny tiny blood spots under my skin, but not a rash. it is more like my capillaries are leaking just a drop or two, but it is all over - everywhere. no one really has been able to explain if it is from chemo, the steroids, or the tam. 0.o