TRIPLE POSITIVE GROUP

Mommato3 I even mentioned a quote from an article I read. She asked which one. I sent it to her. She said it was an "off the cuff" comment and not the experience they have had at my treatment center. I felt like telling her that's BS. I have read many articles and talked to so many women. Even a woman in my building quit after 2 years… things is most that have quit that I know do not have a tumor as big, where under 50, pre/perimenopausal or as aggressive as me. This is why I want to try anything to see if I can make it to the 5 years.

Armamp#95 - I was supoosed to get 4 TCH but my onco decided after my 3rd that I should have 6 TCH treatments because he felt I was handling the se's very well. When I showed up for #5, he was not there and another onco saw me that day. She cancelled the remaining 2 TCH treatments and I only had herceptin that day. I had been having severe D - the no advance warning Niagra Falls variety, my eyes were streaming just as bad, the bottoms of my feet looked like I had stepped into boiling water and my sister who took me to this appt was ready to kick someone's ass and take names later. So it's just been Herceptin every 3 weeks combined with 24 full breast and 12 boosts of rads to the left side. If you read my previous posts, you know that I'm having some heart issues from either the herceptin, the rads or both because they did a heart cath and found no blockage. Some of us have worse side effects than others and I think that the second onco thought 6 TCH were out of line for stage 1, no node involement, .6 cm tumor... My original onco is very conservative. Neither my family, nor I cared for him from the very beginning and I was in the process of changing to a different location of MD Anderson (closer to home) when the heart issues came up and the new location does not have a cardiology dept. I could just change doctors but at this late stage, WTF.... ANYHOOOO, Your doctors will probably make the call based on your own individual case.

brwn, I do still have my port in. I am 2 and 1/2 years PFC. I had so.e issues with a low magnesium level and had to have tests every 6 werks. Had to have I fusions about every other time. The last 4 time have been good so I'm thinking about taking it out. Some Doctors even pull it out in tbe office. Mine would be in sx because I also have a pacemaker and they don't want to take a chance on messing that up. LOL. Long winded story just meant to let you know they can stay in for as long as you want. If they don't hurt or bother you. If they do then get it out!

Blownaway, sorry you are having heart issues. I had to stop H after the 2nd 3 week dose as my EF went down too much. I was at 42%, From 65%. It did recover fully so I hope yours does as well.

Much love.

Blownaway ... yes, I had seen your posts about the heart issues, and identified since I am to have my first followup echo in a couple of weeks. Fingers crossed ... baseline EF was 54. I am older (66) ... do the cutoff numbers vary by age?

I went to my cancer center for bloodwork ... did not talk to MO directly, but after my note, she has switched the plan to 4 TCH, and I am on to the H-only phase. I feel fortunate that I had been going to this lady for 5 or 6 years, as followups from previous DX, so we know each other pretty well. My tumor was also .6 cm, no nodes, etc..

After your description, I may never quite look at pics of Niagara Falls the same way again.

ashla ... other than the MX and my brief fling with Tamox, I had no other treatments in 2005/6. After I started with this MO, she tested and started me on Vit D.

I just spoke with my cousin who is in nuclear medicine so bit familiar with all this and she said that tumors are heterogeneous, so she thinks maybe the higher grade portion responded to chemo and disappeared and the part that was left is grade 1 which does not respond to chemo as well as high grades. This makes sense as the clip for where they biopsied was further away in imaging before surgery that the residual tumor. This explanation if true makes me feel better about not having a Pcr as a her2+ girl. Wanted to post this update thanks!

Armamp95 - my baseline EF was 56 and I am almost 58. You and I started out with a low EF. Don't know about you, but I've always considersd myself a low energy person - just never had as much stamina as others at the gym, etc. I had know idea that my heart was less effective than most people. After about 7-8 rounds of H and all the rads to the left side, I was down to 35 and had no get up and go. I understand that this may right itself with meds and cancer treatment can then resume.

Knmtwins is right, we did get to know WAY too much about each other in the July Chemo discussion board. We shared everything!

Thank you ladies for the responses to my question.  Hope the new year is a great year for all!

Thanks Lago, yes it made sense to me as well. I will be doing rads (while dreading it) and at least 5 years on a hormone pill.

@pmr53, i would recommend TCH, i had a complete response and have read in other discussion boards of their complete responses from this treatment plan. it works wonders. after the 2nd treatment, the tumor had decreased dramatically. TCH will kick your butt if you're anything like me. i was out 1 week out of the 3 weeks but it was worth it. diarrhea was horrendous, anytime my fiance and i were out i would force him to rush to any location i could use the bathroom at. [diarrhea would happen on week 2 after i finished vomiting my lungs out the first week] now, i suffer from painful poop every time i have to use the bathroom. still on herceptin until july.

with that being said, does anything have any recommendations regarding arimadex vs. tamoxifen? i am already scheduled to start tamoxifen after chemo, i even picked up my medication a few days ago ... i just have heard arimadex rocks. i am anticipated to be on tamoxifen for 5 years, is that the same plan for arimadex?

runningcello If you are not post menopause then Arimidex (or Femara or Aromasin) would not be an option for you. Chemo might have stopped your cycles but depending on your age they might come back.

brwn, when I was having my last H tx, my MO told me I could schedule my port removal anytime. I scheduled it on my way out that day and had it out 3 weeks later. It was no big deal and done right in the office with just a local anestesia.

ashla, I will have to look into that helmet thing for hair regrowth. Looks interesting.

hello,

I have a lot of muscle stiffness that started about 2 weeks after final TCHP chemo. Have any of you ladies experienced this? While on chemo and shortly after final chemo I had the burning muscles where I would feel like I jogged a few miles when I only walked a block or took a few steps on stairs. That burning feeling has completely gone, in fact I can walk a long distance with no problems at a slow pace, no burning or shortness of breath. However, stiffness has started in my leg muscles and its really annoying. Its hard to pick up something from the floor, I have to adjust every time stand up while sitting or vice versa. I feel like I need to stretch constantly yet stretching does not help.

I wanted to understand what causes this, biologically, and have been searching online but have not found any answers. If you have experienced this, do you know how this happens? Also, if you have experienced the same stiffness issue, was there anything you did to resolve it and how long did it stay? I've read on multiple sites people saying it lasted a long time and even continues to last after years. I'm hoping that's not the case!! Thanks

Hi Lago, thanks so much that is helpful to know.

hi Cassie, thanks, I am only two weeks ahead of you. I am very happy that the burning went away, because that prevented me from being able to take walks, hope yours will resolve very soon as well. I know you had the swelling in your legs as well towards the end, I wonder if this stiffness has something to do with that. Most of my water retention went away suddenly less than a week ago and it seems the mild stiffness got worse after that for me. I posed the question to ask an expert on the Hopkins website, will post back here if she has any recommendations. I read one lady say high protein intake (makes sense our bodies are repairing) and vitamin b helped her. Take care!

I had water retention in the legs too. It didn't all go away so eventually I was put on a very small does of diuretic. I don't think there is a relationship with the water retention and burning/stiffness.