Switching from AI to Tamoxifen

Lifeim-init

I'm about to switch from Femara to Tamoxifen and wondered whether anyone has had recent experience. I've been on Femara, then Aromasin, then back to Femara the joint pain just gets worse. Daily pain meds, walking, yoga, vitamin D, Calicum nothing shifts it - so with an Oncotype score of 13 I've said "sod it, let me try Tamoxifen".



As I had to have full hysterectomy and ovaries removed (along with left breast then lat flap reconstruction) I'm also interested in the fact that Tamoxifen is shown to improve bone density.

yellowfarmhouse

Hello,

I was on Arimidex for 7 years and then nothing for about 8 months and now Tamoxifen for about the last 5 months.  I feel better on T than when on nothing.  I have also had full hysterectomy and bilat mast... no girl parts left.  I had bad joint pain on A.  Lots better in that regard now and less vaginal dryness. So that has been good too. 

Post how it goes for you, OK?  I just do not hear from many who has gone from AI to T. 

Blessings,

Wendy from WI

Lifeim-init

Wendy



You have made my day . I really hope to have the same luck, and get rid of the constant pain and creaking hips and knees. What a trooper sticking with Arimidex for 7 yrs! I will let you know how I get on.



Alison

yellowfarmhouse

I'm glad... wishing you the very best!  7 years was a long time.....

Lifeim-init

I love Tamoxifen, I know a weird thing to say BUT I have no arthritis in my hands, knees or hips after switching from Femara then Aromasin then back to Femara and finally Tamoxifen. Two months in and no major side effects, the hot flashes were big initially but they have calmed down.

ck55

I finished my 5 year run with Femara a year ago this August. Since I didn't want to go without any "protection" my onc and I decided that I would go on Tamoxifen for the next 5 years. This also allows me to use Vagifem for dryness since the Tamoxifen would block any estrogen that might  get into my system.

My dryness issues are much better and the joint pain is pretty much gone. No more achy feet in the morning. Yay!!!!!!!!!

Cyndi

foobs

My blood levels of Estradiol are staying high, and Dr and I are trying to decide if I should switch from the AI I've been on for almost 5 yrs, to Tamoxifen.  I was happy to see this topic and thrilled Cyndi, that your joint pain is better on Tamoxifen. Do you know how strongly ER positive your tumor was?  Also if you don't mindmy asking, how old are you?

Thanks very much

Maureen1

My tumor was 95% ER+ so I knew I should take something to keep estrogen from fueling a recurrence. I was on Aromasin for about 4 months but the joint and bone pain was awful...I was very stiff, it was difficult to walk, and I was getting irregular heartbeats. My MO switched me to Tamoxifen and the pain and irregular heart beats went away within a month. My only side effects with Tamoxifen are constipation and difficulty sleeping otherwise I feel okay. Accoording to the clinical trials Tamoxifen helps prevent osteoporosis so I hope that is true:) 

wallycat

I started with tamoxifen and everything was fine until about 8 months or so and then the worst pain was my achilles heel. It was so bad I could not get right up out of bed. I wept. My onco (in WI) did not care. When arimidex went generic, I started that...again, fine for a few months and then the foot pain. With Arimidex, I also had some thumb joint pains. That was it...plus thinning hair.

Interesting...my onco never suggested testing my estrogen levels so god only knows what's going on in there.

I feel "naked" without the meds but I feel better overall.

foobs

Thanks for sharing your stories. We're trying Lupron first, to see if it brings estrogen level down. If it does, then I understood I can continue on it, or if side effects are bad, decide to try Tamoxifen. I'll watch this topic and keep you posted. Four days after the first Lupron injection, I'm doing fairly well. Just headaches and my feet hurt, (but they always do) Other than that, I'm doing fairly well.

aussieched

Hi Ladies, Yes please keep this thread going. I am currently deliberating on whether I switch to Tamoxifen also. I will have finished 6 years on Femara at the end of 2013, and I have been experiencing painful side affects during the 6 years, however the pain in my hips when I walk has become very painful in the last 12 months. Onc has suggested that I might like to switch to Tamoxifen, to see if that slows down my bone density loss, and also help with the painful hips.

I am undecided at this stage on what to do. I was hoping to continue Femara for a couple of more years because I didn't do chemo and had positive sentinal node. It appears that different drs have differing opinions on what is the recommended treatment.

Ched

ck55

foobs (love the name!)

Sorry it has taken me so long to reply but I haven't been on the boards for a few days. I am 58 (51 at diagnosis) and my tumor was 100% ER/PR +. So I am happy to continue with tamoxifen for another 5 (or more?) years.

I am really not having any major problems with the drug. Sooooooo much better than Femara!

Good luck with your decision.

Cyndi

dreniger

I was initially on Arimidex. After taking it for 9 months I was in so much pain I could hardly walk from the living room to the bathroom. I actually went to the ER for pain one time.

I had severe osteoarthritis before I was diagnosed with breast cancer, and my MO warned me that the Arimidex would make the arthritis pain worse. I take Meloxicam daily for arthritis pain.

I stopped taking the Arimidex after 9 months, and at my next appt with my MO, he was very upset that I had stopped without talking to him. It had only been a few weeks since I stopped. He switched me to Tamoxifen. I'm 57 years old, finished menopause 10 years ago. He said that the Arimidex would be more effective for me, but was afraid that if I started taking it again, I would also stop again.

The plan is for me to be on Tamoxifen for 2 years, then switch back to Arimidex for 3 years.

My cancer is ER+ and my oncotype score was 32.

In my dad's family, almost every woman for 3 generations has had breast cancer. Some have also had uterine and pancreatic cancer. My paternal grandfather died at 59 from colon cancer. My dad was diagnosed at 72 with colon cancer, had surgery and 6 months of chemo. My 2 sisters and I have all had colonoscopies since our mid-30s, and have all had precancerous polyps removed.

Now that I'm taking Tamoxifen, my joint pain is still off the charts. I take Norco 3 times daily, which takes the edge off. I also continue to have hot flashes, as I did with Arimidex. But I don't have night sweats, which were so horrible with Arimidex. The sheets needed to be changed every day. Hot flashes were not nearly as bad during menopause as they are with this treatment.