TRIPLE POSITIVE GROUP

Blessed2Be - I was thinking fear of medical liability, especially if the FE doesn't have experience with patients who are cancer survivors, was another reason. It's good that you are seeking a second opinion. I'm sure there will be FEs out there who have helped cancer survivors, or your MO can put your current FE at ease. He may even refer you to one. Thanks regarding my own family planning. I'm worried since I'm single, so I plan to put those 2 years to good use.

Faith83111 - With each treatment I always noticed the turnaround point where things would start to get back to normal was Day 10, the halfway point between treatments. I know every person is different, but I'm really hoping it's the same for you too. I feel like things are happening to you as they did to me when I was starting out. I noticed the timing of the SEs would always occur around the same time with each treatment, and some, like Big D, would go away quickly with medication. For the most part, any existing SEs didn't get any worse with each treatment except fatigue. Then I would acquire a new one, like neuropathy in the fingers after #4, which hasn't gotten worse after #5.

People usually talk about physical SEs. I sometimes have to deal with what I feel are emotional ones too, where I am sad and discouraged. It's all tied into having lower energy from fatigue and lack of appetite, not being able to do things that used to be easy, not knowing if the treatment is working, worrying if I'll get back to normal, wondering how I'm going to find someone and start a family someday, etc. Those sad feelings go away by Day 10 when I start to feel more like myself physically.

Happy Friday everyone.

Jodes, have them run the drip at 90 minutes. Drinking 2 quarts of water a day really helped!

Those symptoms are common with AI drugs. I was on Aromasin, and I woke up every day so stiff and sore!

Kthielen -- I have many of the same symptoms. My back pain is in the lower left. It comes without any activity at all and can be so bad it is hard to sit up straight. Heating pads help. I have not had any skin issues since my first chemo session. I use clyndomicin in the morning and differin gel at night for the acne and cetaphil for moisture. I have not found anything to help with the leg pain. I have been percriped percocet for pain. but because of issues with my liver am unable to take any acetaminophen products including tylenol.

I post on other threads but need to and ask some questions here. My older sister has just been dx with bc (she is 57, 58 in April, I'm 55). She has triple + (lump at 9:00 in L) with additional pagets disease (cancer of the nipple, rare, 1-2%of bc). Very diff from my dx(TN). She initially thought it was going to be lx with rads but once path came back with Trip+ and nipple cancer it changed. She is very scared and feeling hopeless. She is now looking at bmx chemo and herceptin. (No rads with mx and hopefully no nodes).She was just finishing tx for non Hodgkins lymphoma and actually had 1 more retuxin infusion left then this. She is fit, takes excellent care of herself, eats well, is thin, exercises... My questions are mostly regarding bmx but any thoughts for T+ gals would be appreciated. I told her to join this site and forums but I don't think she is ready yet and just too overwhelmed so I'm doing for her. I have also been looking on the pagets thread and mx. She texted me today saying she " truly doesn't know if she can do this". I need to help her get through this.We live 5 hrs from each other so we text and call. She's on LI with a great cancer center, carol Baldwin breast cancer center. She was a great support for me during my tx.

How soon after your dx did you have bmx or umx surgery?, she will see ps wed and saw bs last week. She wants to wait till 4/11. The doc does surgery every other Monday so 3/28 or 4/11. She's had Mri and PET due to lymphoma they don't think lymph involvement but will do snlb. That will be almost 5 wks after dx. They say it's small <1cm but the 2 spots-lump near cleavage and then the nipple. I'm worried maybe that's a long time between dx and surgery

She heard bad stories about bmx and reconstruction, painful, complicated, many problems etc and I want to hear if any of you would do it differently now that you know what you know? What would you do different? Why?

She first was thinking of not reconstructing but now that bmx she wants to but afraid of the bad stories. What can, should I tell her?

She works as a speech therapist at k-3 school right near her home and loves her job and wants to return this year if possible (I don't think she should or can but she's thinking of maybe for end of yr cse mtgs etc) and definitely in sept. What are the mx restrictions for the first month?2months? I know drains and lifting etc. no lifting at school but elementary school kids. how soon did you go back to work? She will have chemo so there's that which I know all about.

Herceptin has been very successful with T+ right

I'm probably going to post this in a few forums. Thanks for listening

lisa - welcome! I used to live in Rome, NY - both of my kiddos were born there! I am so sorry to hear of your sister's dx, on the tail end of treatment for NHL, and your dx as well - that is a lot. Take inspiration from those of us here on the TP thread - she can indeed do this. If your sister is looking at wanting to minimize the number of surgeries and recoveries - she might ask her PS about direct to implant, if she is a candidate. That is done simultaneously with BMX and eliminates the need for an exchange surgery. Not sure if the nipple involvement would be an issue, but she can ask. I did not work through chemo as my job was in a bio-hazardous area of the hospital, and my MO felt it best not to. I was fortunate to have FMLA and short and long term disab, and I did return to work 30 days after my last infusion, while still continuing on Herceptin. There are many on this thread who were able to continue working - it is an individual thing and not possible to determine how one will react and manage until you are in the process. Since your sister has a smaller mass she may also be able to receive 12 weekly Taxol and Herceptin if she is found to be node negative, which may be more gentle for her, rather than a dual or multi drug regimen. I had surgery five weeks after definitive diagnosis, partly due to needing to wait for BRCA testing results since I am adopted - and a positive result would have influenced the type of surgery recommended by my BS. I also needed a MRI prior to surgery since I had a long history of bi-lat issues. I am one who did experience reconstruction complications, but I would not change any of my early choices - most of my issues have fallen outside of the norm, so could not have been predicted or expected. Wishing you both the best - definitely come here for any help we can give you, or questions we can answer.

Lisa, I think posing the question to her SO if waiting 3-4 weeks is warranted. I am guessing they may take the grade of your sister's tumor into consideration. I was back to work 3 weeks after MX. She may want to go back to get her mind off of her DX. I am currently on Taxol/Herceptin. Totally do-able, and I am working (abbreviated hours) through it.

...and my Sister is having a biopsy on Thursday...and I have been lurking on other boards about her situation. She is lucky to have you

Best of luck to her! You can post here for her anytime.

special k, what were your symptoms with Armidex?

Did anyone have low WBC count with Armidex?

Kathy

HI Lisa,

I just had BMX in January, however my doctors did the mastectomies and reconstruction at the same time - all in one surgery (straight to implant). So I didn't need to have tissue expanders and I don't need to have any other surgeries. I also was able to get a breast reduction out of the process (which I had been wanting - went from a DDD to a C cup).

If I was your sister I'd push the breast surgeon and plastic surgeon on this issue to see if she's a candidate to get it all done at once. I was lucky and my plastic surgeon really lobbied for us to be able to do the surgery this way.

I'm in my 40's, have a toddler and work full time, the idea of multiple surgeries was totally daunting to me. It worked out very well, in 6 weeks I feel totally back to normal, though I was back to working from home 2 weeks after surgery and back in the office 3 weeks after. Now, I'm just watching the scars healing/fading.

Hope this helps!

lisa - direct to implant generally is better for smaller breasted women because it is limited to what will fit behind the pectoral muscle at the time of surgery with no expansion. It can also work for a larger breasted woman who wishes to be smaller. The final implant - regular type used for both augmentation and reconstruction - is used. There is also another type of implant called a Becker that is a hybrid of expander and final implant that some PS have used, but I don't see it that often- it is expanded but not removed. Here is a link:

https://beckerbreastimplants.wordpress.com/2010/03...

SusanHG - I too am banned from Herceptin for life. My LVEF went from my normal of 56 down to 35 after only 6 rounds of Herceptin. That was over a year ago and the cardio tells me my LVEF is back to my old normal but I still have shortness of breath and they are keeping me on Lisinopril and Carvedilol. Not sure why.

He never said anything about stopping either drug. My next appt with him is not till August.

I am assuming you have had your hormones checked, I think if you are still producing a lot of estrogen I would have removed especially since you are dealing with cysts as well. I had them removed, I was only 38 at diagnosis and had them removed at age 40. It sucks going in to menopause so young but I want to do everything possible to prevent recurrence. Hope this helped:)

Blessings

Kathy

I've been taking Herceptin since July...at first it was weekly with Taxol, then every 3 weeks since Oct. I have 5 more to go. I just had an echo and my EF has dropped to 40-45% (I started at 60-65%). I've been getting echos every 3 months, and the last one in Dec was at 50-55%. I don't see a cardiologist, the MO's office had one to read my tests. They just started using a different Dr to read them, so this last one was read by the new guy. MO thinks the difference in Dr's could be part of the significant change. So no infusion this week, and I'm scheduled for a MUGA scan on Friday. I'm not on any heart meds, other than a beta blocker for high blood pressure. Has anyone ever experienced something similar, but then later was put back on Herceptin? I was so close to finishing.....but am worried about the heart damage. Any input is appreciated!

Well, due to the PN coming back in a big way in the middle of the night after my latest Herceptin infusion, I'll be getting a six week break from it, and see if the symptoms improve... So now it's just taking day 3 of Tamoxifen.... (insert sigh)