TRIPLE POSITIVE GROUP

Lago, I told my ob/gyn and onc that I would be happy to have a hysterectomy so I could go back on tamoxifen and they both said no. My ob/gyn doesn't like it at all.

Congrats to you on no more ESD! I will be at 5 years in mid July. My next onc aPpt is in October. I will stay on the pill until I see him then and we will decide. He said the ASCO meeting in June has a report on the study measuring the ten year AI combo with tamoxifen versus five years. He want to see the report before committing. Said if it's minimal, he will recommend to stop.

I want to stop and I am scared too, lol. And then to move to yearly appts. Ugh. I like somebody thinking about me. My biggest serious problem is that I keep having areas of arthritis show up and it is all since I started taking an AI. That can't be a coincidence.

Hello everyone, I am coming up on my 2 year survival mark of June 19th!

Recap 1.7cm tumor, triple positive. Bilateral MX w reconstruction. I chose BMX because I did not want radiation, I would have refused regardless of node status.

TCH chemo. Stopped at 4 rounds d/t side effects quality of life. Stopped H at 8 months due to same.

AI and OS for 5 months, terrible unrelenting bone pain. D/C that.

Could not use tamoxifen because I am unable to D/C prozac and increase effexor. I tried and became suicidal.

Here I am, happy, no regrets.

fluff and lago - hard to know whether we would have had these arthritic issues independent of the AI drugs, unless we stop and they go away. Lago - you will have to report back once you are off Aromasin for a while. I had two breaks when I switched from Femara to Arimidex at the six month point and then back to Femara at the two year point - I definitely felt better with less joint pain and those were 2-3 week breaks. I had long standing degenerative disk problems prior to breast cancer diagnosis, and that situation has worsened according to the bi-lat hip and lumbar MRIs done last year due to sudden onset hip pain. I now have additional disks above the two I knew about, and bone spurs at the thoracic level. I just had my six-month MO visit (I have now graduated to annuals, so am not scheduled to see my MO until next March unless I have a problem) and my tumor markers are on the rise - don't know if that is due to recurrence or inflammation - have a PET this coming Saturday. I am not really worried yet, but the CA27/29 has now exceeded the top of the range for normal. This was the case after chemo - it was about 20 points higher than it is right now as chemo ended, so I know for sure that it is sensitive for me on inflammation. My MO will use the markers for trending info, but doesn't make treatment decisions off of one higher result. The PET was scheduled prior to the info on the markers - we discussed it in light of my BCI result and the possibility that Femara and Arimidex have not been particularly effective based on the genetic assay.

I have been offered the clinical trial and have decided to go for it. Nurse said I could take a month or 2 off before I start. I am starting to feel human again and it's hard to think about more meds but figure it would be worth it. I will be taking Immodium for study to try to help diarrhea. Would love to hear from anyone in the s

ElaineTherese my MO never does tumor markers on early stage. She says they are unreliable.

SpecialK,

Good luck tomorrow! It sounds like you and your MO are extremely thorough, and you are courageous taking it head on rather than head in the sand approach.As you said, it sounds like you just have inflammation probably from all your back issues- but even knowing that- scans are never fun and waiting is always nerve-wracking!

My doctor is looking at placing me on tamoxifen after I finish chemo and herceptin treatment. I'm researching options...I just want to not worry about it coming back

They will go away Song. I hurt "to the bones" during treatment as well. I think it was the taxol, not the herceptin. You will get through it and be fine.

Song, yes the taxane-chemos are rough on the bones. I did Taxotere's "gentler" cousin Taxol, and I could no longer keep up with my sons when we went scootering. Swimming was really helpful there; it helped keep me limber.

songbird-do you have to get Neulasta? I think that makes joints hurt a lot also. I remember walking in downtown Indy with friends, while on taxol and my hip joints ached so bad I wasn't sure I was going to be able to keep going. Felt like they would t bend.

Zoziana- I always did my infusions on a Monday morning. Was hopped up on steroids after so ran errands, worked out, and was wide awake all night. Would sit all comfy in bed with my laptop playing but just awake. About noon Tuesday, I would be wearing down. Wednesday and Thursday, I was pretty inactive and wiped out. By Thursday I was starting to feel better and then able to go out with friends on the weekend. It worked pretty well in general.

Lago and Special k-I refuse to blame the arthritis on menopause and aging. I'm sticking with the AI, lol. Better story and it doesn't sound so old lady.

Special K-hope things are ok on the pet scan front. It never ends does it? Neither of my on a put a lot of faith in the readings, but I like knowing so he agreed. I would really like a pet scan before I stop anything but I'm sure I won't win that battle

Songbird, I had some bone pain during chemo but during Herceptin-only. Herceptin was a breeze compared to TCHP.

SpecialK, my MO tracks tumor markers as well. It's interesting how different doctors take different approaches.

Songbird, Taxotere made me hurt all over, pretty much all of the time. I'm with others, though: it goes away. I'm just under six months out, and I feel pretty damn good, all told.

I take tamoxifen. It is what it is. Other than hot flushes and creaky knees, I feel pretty okay.

Hang in there to all who are in the throes of chemo. It gets better.

HI Ladies, I have been away a bit. One week post treatment #5 with a dose reduce and removal of Perjeta and WOW~ What a difference. In the past, I would not have even been able to stand up or move from the pain today. Other than fatigue, minor bone pain, a few stomach issues and this dang blurry vision I can handle! this is manageable.. I wish that they would have done that sooner. One more to go.

Lago:Our first apartment was in Randolph. Mill Village.

Cassie cat... Good to hear. That's what i am hoping.

During this chemo it feels like this is the reality of my new life... I keep having to remind myself that this is the temporary situation to get to the healthy me!!