TRIPLE POSITIVE GROUP
Comments
-
And Art, I am an info junkie. I had to have as much info as I could get, good and bad, so I could be part of the team in making decisions. I'm not one to just go with the flow.
I had some mild cognitive issues, temporary (at least I think). Mostly short term. I could have my keys in my hand. Sit them down and literally not remember doing it or where they were 30 seconds later. Or, I would be driving and think I needed to stop at the grocery store, and then answer a question on another subject, and never go to the grocery store or remember until hours later. And I am a major multi tasker, and that came to somewhat of a roaring halt. I had to really make myself focus or I would lose track. I felt like I had ADD. It was also weird to actually realize that it was happening. I resorted to writing everything down to remind myself.
It is much better now. I had no issues on the heart front, but felt comfortable that they were monitoring it.
It is all scary and overwhelming and everyone handles it in the way that makes it workable for them. You are filling the gap to allow your wife what she needs to get through it all. It means a lot.0 -
Cognitive function problems... Yes. I have them, and it's actually pretty obvious not only to me but to those close to me. I struggle to find words now, and to verbalise my thoughts.
But, I think it's only obvious because of what I'm trying to do. You see, I hold down a full-time academic oncology clinical research position and at the same time I am studying towards a university degree. So, I'm busy. I'm stressed. And, I'm expected to perform at a reasonably high level of cognitive function. 21 months after my initial diagnosis, the multiple surgeries, the chemo, the radiotherapy and now the Tamoxifen, I am definitely struggling.
I actually think that if I was not trying to study at a high level I would be OK. If I was a stay at home wife like I used to be. If I was a part-time worker. If I was holding down a position with a lower level of cognitive function required... Then, it wouldn't matter so much that I now have to describe things as "you know, that thing-a-me-bob".
Jenn
0 -
@momx - sorry to hear you had a rough time. Hope today finds you feeling better.
With respect to diet, I hear all conflicting things. Avoid fruit veggies, eat fruit veggies, drink green tea or not. So far, my wife has been eating healthy and feeling good, so I don't think we should change it.
As far as weekly taxol, is there any time frame as to when hair falls out? She's had two txs & has not lost hair.
Thanks all. Everyone be well.0 -
.
Jenn128,
Re cognitive issues....sorry you are dealing with them . I have some as well. Just kind of foggy at times particularly when tired. I am very surprised and actually hopeful that it is hormone related rather than the result of chemo.0 -
Art123,
I had taxol on the 3 week regimen and was told the hair would start @ 21 days. It didn't actually start until closer to 5 weeks though.0 -
Ladies,
Very good new about Perjeta. I wonder if we able to combine Perjeta and Herceptin for Early stage every 3 week instead of just Herceptin every 3 week. I hope so.0 -
It is important to understand that the yet to be approved combination of Perjeta with Herceptin is for neoadjuvent use, and will not automatically be available in October. It still has to be approved by the FDA, and is projected to be used in early stage women with large tumors or other risk factors, at least at the beginning. This approval does not yet translate into standard of care treatment for all Her2+ early stage women, and most likely not for patients currently being treated neoadjuvently.
0 -
Cgesq, mine have bounced around a bit but MO seems to think everything’s fine as long as it’s within normal range. Though I just checked based on your post – I guess the standard for AST is less than 31 and mine was 34 in august. My ALT was in normal range but both were higher in august, lower in july, and higher in april. I stopped chemo last November. Should I be worried? Keep us posted anyway.
0 -
Jennt....oh my gosh, totally forgot about losing words. (Maybe I am worse than I thought, lol). Yes that was terrible for close to a year. Close friends noticed and my husband filled in words for me.
Art....my hair started to thing by the third week. I kept enough hair to either get by or wear with a baseball cap until around week 8 or 9. Then my husband gently asked if I had looked at the back recently. I never shaved it. Did not lose lashes or brows. About a month after chemo was finished, everything fell out!!!! Fortunately eyebrows and lashes were already coming in, so that was a short time period.0 -
There has been a state police officer that has been shot and killed in my area and the last few days has been something else, this all happened less then 2 miles from my driveway. all tv channels are here more police here then I have seen in my life. Sorry I know this has nothing to do with this site but gees... ALL News channels are here THOUSANDS of officers from Michigan and other states are here for his funeral. A 19 year old kid shot and killed a state officer here. And most of all the kid that shot him is a friend of my son's. So sorry I am just sooo emotional right now.
0 -
And yes I still have chemo brain at times really sucks.
0 -
Ang OMG that is horrible especially that u'r son knows him. I don't blame u for feeling like that--I'd be a nerveous wreck. And it's so close to you, of course u had to tell us. How is u'r son doing? I hope he's all right.
0 -
Ang,
What a terrible time for you! Those poor families....and your son - how are you doing? How is he doing?
Nicky0 -
Special K, Thanks for the suggestion on the liver enzyme culprit, but I'm not taking any joint supplements. I (did) take biotin, magnesium, D3, calcium and a baby aspirin, but stopped about 2 weeks ago, due to an outbreak of diverticulitis, for which I was given antibiotics. (God, I feel like a hypocondriac!!)
I was supposed to have the CT done on Monday, but my insurance is asking for additional blood work before they will approve the scan. So the scan is temporarily off.
Ang that is terrible about the shooting. No wonder you are so emotional. I hope everyone in your family is ok.
0 -
Hi all I too have been diagnosed with triple positive & I enjoy reading the posts here from all with similar diagnosis
0 -
Carolynvj,
Welcome to the forum! Lots of great women here to support you. You can let it all out here.....0 -
I've decided to do the 3d mammogram...tomosynthesis....next month because of my breast density issues. I'm told I must pay $75 out of pocket because insurance does not cover it. Gonna have an ultrasound too because of the density.
I'll let you know.0 -
Ashla I'm glad u'r doing that, it's worth it for you. I think u'll be happy u went that extra mile for u'rself.
0 -
Carolyn welcome , sorry you/we have to be here but its a great forum with an abundance of information
Ashla , I wish that was offered to me . My breast so dense a few things didnt even show up on MRI . Good luck , money well spent0 -
Camille and momx2
Despite having gone through menopause...twice....obviously failed the first time since I was still 65% er pos...., my breasts are still very dense. On my one year post surgery..that's when the NED count starts..I got a birads 3 . This means there are changes but likely not cancerous. " Equivocal" in doctorspeak I think.
This wasn't offered to me but my RO suggested it to me a few months ago and I've decided to go with it.
I must switch facilities . I have an attachment to the first place because they were so wonderul when I was dxed but I think I must try this.
Momx2
The place is across the river if you are interested.0 -
ashla - your 65% ER+ was not measuring estrogen levels, it was measuring the number of ER+ receptors on your cells. Out of 100 of your cells, 65 of them had receptors. I had a hyst/ooph 9 years prior to BC diagnosis and I was 96% ER+ and I was definitely in menopause. Even thugh in menopause your body still produces estrogen - that is why we are given aromatase inhibitors - to stop the conversion of androgen to estrogen. FWIW my breast tissue was still very dense, mammography missed my 2cm IDC lump and my DCIS, and MRI missed my two positive lymph nodes, both missed the ADH and ALH in the "prophy" breast. If there is enhanced imaging available I would definitely try it if I were you. The failure of imaging for me is one of the reasons I elected BMX - I was a lumpectomy candidate, but sure glad I didn't personally go that route - chances are I might have had a new primary on the left side eventually.
0 -
My sister was just diagnosed with breast cancer( very early)... I'm going with her to the bs this afternoon. She didn't know anything, so I don't know if she's her2 or not. Now that I'm finally finshing up, it's starts all over. A bit freaked out. Now it's me who has to be strong.
0 -
Shasha10, I'm glad your sister has you and your experience with it to help her out. My older sister had IDC about 13 years ago (2 years before my dx), and both of us are doing fine over a dozen years later, so pass that on to her.
Ashla and Special K, I had dense breasts originally as well as after chemo, but not after 3 months of tamoxifen, so perhaps I responded well to the tamoxifen. I just wanted to comment that my BS had me do yearly mammos, and now that I am 10+ years out as an ER+/PR+ he has added alternating that q 6 months with MRI. I just had the MRI and it reported as clear.
A.A.
0 -
shasha - so sorry that your sister has been diagnosed, and that it dredges up your feelings - but certainly glad that she has you. Sending you both strength for what lies ahead.
AA - I will never know if hormonal therapy would have improved my situation because I did the BMX, but having already done the hyst/ooph nine years earlier and still having the amount of density I had leads me to think maybe not. I have severe menopausal symptoms (and still do) that began within 24 hours of that surgery so I know that I had very little circulating estrogen. Mammo and MRI were useless for me from the outset - I was not particularly large-breasted so with the percentage of breast tissue versus the size of the lump should have been seen. After diagnosis (the lump was seen clearly on ultrasound - it is the only imaging that worked for me) I went back to thank the military radiologist who pushed for the biopsy and he suggested that we review the mammogram film again to see if there was anything discernable now that I had a definitive diagnosis, and there was absolutely nothing. He said if we had not done the ultrasound and relied on the mammogram only I absolutely would have continued to go undiagnosed, and he had annual and bi-annual mammograms to compare to going back more than 10 years. Scary, because this was a palpable 2cm lump. I am so glad that you are able to rely on imaging because I am sure it helps with your confidence that any new issue will be seen, I just couldn't take that chance.
0 -
Carolyn, welcome! Although we all wish we were meeting under different circumstances
Ashla, I think you've made the right decision,
I know that if I was in your situation I'd go the extra mile too. I'll be waiting to hear how you get on!
Nicky0 -
Speciak,
You are too right. I think it was FSH (.?) that measures estradiol that showed I still had higher than normal levels. The first time I went through menopause was a breeze because of it.0 -
Oh Shasha!
0 -
Shasha I'm so sorry about u'r sister, it's like an epidemic---my sister and zi got it within just a couple of months of each other so I really couldn't help her and visa-versa--And it's harder watching u'r sister going thru this than it is having it. So I know how u feel.
I don't think I had dense breasts cuz my dr. just saw them when he looked at me and didn't even feel anything yet, of course he yelled at me for waiting but I just never gave it a thought and he said something like u call me on a Sunday cuz u'r finger hurts then u have tthese 2 huge lumps and don't say a word. Well I needed my finger to type at work, my breasts do nothing. And so the saga started.
I have to go to the Dr. soon so I have to take a shower, I like to let them think I have good hygeine.
0 -
Shasha, as tough as this is, remember you will be her angel! A woman I work with but rarely see came to my cube to ask me a work question about 2 minutes after I had found out my diagnosis. I had no idea, but she'd had a bmx with reconstruction, lots and lots of chemo and radiation. She was my angel. I just blurted it out to her and she sat right down and started calming me. She told me about her experience and how she knew I'd get through it. Turns out we even have the same oncologist. She's been looking out for me through the whole thing and I know I'll never be able to tell her in words how much that has meant. I think that is why there are survivors
Ashla, I had a symptom-free menopause too, and I had a high level of circulating estrogen when tested after chemo.
So I have a happy thing to report--I think I'm one of those few people who lose weight on Arimidex. I've been on it a little over 2 months, maybe 3 (?) and I've lost 10 lbs without starving myself. I'm just being conscious of my diet, but I've done that for years and haven't lost anything substantial. I have to really not eat to do that. Anyone else out there find they could lose weight a little more easily on these (as Lago calls them) hormone suckers?
0 -
Pbrain,
I 've lost weight while taking arimidex too but I 've been exercising alot. I would say that taking it has definitely not made it more difficult for me to lose weight though.
Alaska Angel,
I spoke to my MO about tamoxifen and breast density and my birads 3 mammo. Apparently I was birads 2 on the previous mammo which I had only been told was normal. He said It is a subjective call but I was going in the wrong direction. I was all upset because my hair had just started thinning after 9 mos on arimidex too. He said we'll keep an eye on both Issues and he would consider switching me to tamoxifen after the 2 year mark. He said AI's are better but tamoxifen is very, very good too.0
