TRIPLE POSITIVE GROUP
Comments
-
Good luck Nora! Looking good TonLee!
0 -
Jennt28: Like you I am 46, triple positive, 1 cm, Grade 2, and had a "partial" mastectomy which was really a large lumpectomy and SNB. I wonder if that is like "wide excision." Anyway, my margins are clear. I am having chemo, Herceptin, radiation, and will have Tamoxifen, too. I hope you have no lymph nodes involved, like me. So they are throwing everything at us, yes, but I am glad about it because our odds are so good with this treatment. You must know a lot being in research, but I hope that you can also step back a little with confidence that so much is known to help us now! Keep us posted.0
-
Thanks everyone. Just got back from my LAST heart scan. I have my appointment with the general surgeon later on this morning. Thank you everyone for your thoughts and prayers. I will report back when i get home. I'm sure it will all be fine
0 -
Oh Nora, how frightening. You are in everyone's thoughts and prayers.
Well, I switched oncos and like the new guy. Had no problems with the other doctor but just wanted a new facility. Anyhow, I had my MUGA Monday and my EF is down to 50 which is a 10 point drop since end of August and reason for concern. So, once again, I'm off Herceptin until I see a cardiologist which may not happen until after the holidays. I made it more than halfway through Herceptin which the onco thinks is probably sufficient since he says the year is just a timeframe they made up with no trials on patients. He feels that the 10 treatments I've had are probably sufficient. But, I'm back to the cardiologist! Geez, can't win.
This doctor is very against drawing blood from the port which is all I've used since I began this crazy journey. He says the port was designed for chemo and not blood draws or tests. He says using the port for blood draws, etc. puts you at higher risk for infections and blood clots.
AGAIN NORA, keep us posted and prayers out for you.
Arlene
0 -
Praying for you Nora. Good luck Arlene with your new onco.
It's so nice to not have a doctors appointment today. I know this journey is just beginning for me but it seems like my life is consumed with appointments. It's nice to have a day off. Both of my drain sites are infected so the BS put me on antibiotics. Low dose and for 7 days. Still having a significant amount of pain and trying to get off the strong pain meds. I really feel like I'm taking it easy but a lot of right MX site pain and drain sites and right arm pain. Guess I just need a little more patience;(0 -
d-too: Good luck to you also. You are just across the state from me. Do you go into Fort Myers for treatment or to Tampa? Silly, I guess you probably have centers there in Port Charlotte too.
0 -
Nora, sorry about the lymph node. I get scared at every ache and pain. Omaz is right, it is probably just from the infection. Keep us posted. Judy
0 -
Hi everyone....
It appears I have either a bad lymph node or something wrong with my salivary gland. He doesn't know which it is till I have a CT scan. If it's the lymph node he will take it out and have it biopsied. If it's the salivary gland he said it's much more of a delicate surgery and will send me out to a head and neck surgeon to have it removed and biopsied. Either way it's going to be done under general anesthesia and will be just day surgery. He said with breast cancer its very unlikely to go to a lymph node in the neck but that BC doesn't have a rule book that it plays by either. He said he doesn't think that's what it is. He did say it was a hard mass though. That part is quite concerning to me. I am waiting for a call back from the hospital to let me know when I need to be in for my CT scan.
0 -
Good luck Nora. Know that we are all praying for you and thinking to that it is probably from that nasty cold you had.
0 -
The other thing...............how can I go through all these heart scans for a year and I am just finding out now from a general surgeon when he listens to my hearts, "Oh you have a bit of a murmur there" I said, "Really??" He said, "You've never been told that before?" I said, "No and I just had a heart scan today....and heart scans all year long and never have been told that" He looked a bit perplexed and said, "Well you do"
0 -
I have a very slight Mitral Valve Prolapse that my former gyno caught the year before my diagnosis. To bad she didn't notice the 6.5cm hard mass in my breast 5 weeks before my mammo.
Many times these are no big deal. I don't need to do anything for this "condition". If it were a more serious case then there are precautions I would have to take. Others in my family have it and it has caused no issues.
0 -
lago - question for you - I was getting Herceptin #15 today and had a chat with my MO regarding being on an AI and being osteopenic. He mentioned a drug called Prolia that he may want to give me twice a year by injection (like Neulasta was) to prevent any worsening of my osteopenia. It was stable when I first started treatment, and I have not been scanned since, but he definitively stated that I will have some degree of bone loss and this would work against that to some degree. Do you have any awareness of this drug?
0 -
Arlene, we have cancer centers in Port Charlote, actually 2 or 3. I'm having to go to Sarasota for PS for reconstruction. I know a lot of people in the medical profession in Ft. Myers( born and raised there). I lived in Palm Beach County from 1991-2002, where I met my husband and had my son . We relocated to this coast to " slow down " and raise our son. We are less than an hour north of Ft. Myers and an hour south of Sarasota and 1.5 hrs south of Tampa so I had a lot of treatment options but some of them would require commutes. So far I couldn't be more pleased with all of the doctors involved in my care. It's early in treatment so my opinion could change but from what I've been told I have the best in the area. Still sucks having cancer but at least I like my docs.
0 -
D-too: I'm a Florida native too being born and raised in Miami. So happy you have great doctors as that is so critical to our mental well being. Half the battle is over. Melbourne is still a bit behind but we are getting there and we have Orlando if we need it but for the most part we are good here.
I was living in a small town in Nevada when I was diagnosed and had to travel in to Vegas (1.5 hours) for treatments so understand your situation. But I did love my commute to 'town'.
Best of luck to you.
Arlene
0 -
ArleneA - my DH is a born and raised Miami boy! He grew up in Keystone Point in N. Miami.
0 -
SpecialK my onc originally was going to put me on zometa because it prevented bone mets and I was osteopenic. When it was found not to prevent bone mets (in pre/peri menopausal women) that was no longer on the table. She did have me start taking extra Calcium. I was tested again and only lost about .1% (note decimal). So far OK. I'm not interested in taking one of those drugs unless I have more of a problem. My doctors don't treat osteopenia. I have a ways to go before I'm classified as having osteoperosis.
I need to see if I'm supposed to get another bone denisity test next year though. Will see my NP in the spring.
0 -
SpecialK,
Now that makes me have a question for you...lol. Why would he think you have bone loss without a mineral density scan? I know it is a possible SE but not everyone has it, right?
I'm wondering for two reasons. First, I'm nosey like that. heh Second, I was normal before chemo, and just had another bone density scan last week...haven't seen the actual results yet, but my Onc said they were normal. (And there was one area before that was borderline (femur neck or something)...so it makes me wonder.....) When I see the actual numbers and compare them....I'll know for sure.
All medications have SEs and I wouldn't want to take anything for bone loss unless I knew for sure it was a problem for me....I've read some women are osteopenic (sp?) their whole lives and never progress to osteoporosis. In fact, I've read doctors don't agree on even treating women who are osteopenic. Some do, but others say it isn't a "condition" that needs treatment. My Onc is the latter.
Anyway, I have no horse in the race, I'm just curious! lol So please share your info/thinking process
0 -
I just had my bone scan this week. The doctor told me my bones were healthy and strong. He told me to keep taking my calcium. I was relieved.
0 -
nora, will be thinking of you, hope things go well with the scan.
0 -
Hi SpecialK,
I'm from Europe and till September when my MO proposed Prolia for me, I was searching about a lot, I'm sending you these dates per pp.
Greetings
0 -
Thanks Kay.
I called the nurse at the Onc office yesterday. I told her of my frustration of being brushed aside whenever I mentioned this node (or whatever it is) for the past 2 months. They had recommended it was not related to treatment and to go to my primary. Well, my primary is not in the Mayo system so he recommended to see a surgeon who is at a local hospital who isn't with the Mayo either. It's started a complicated mess and I am happier with Mayo. The nurse is going to get me in for a CT scan asap and get the ball rolling on their end. Now I'm going to have to call the general surgeon's office who I saw yesterday and say "thanks but no thanks" Dang, this could've all be handled if they would've just listened to me to begin with!
Yes, I am frustrated. I think there are people who call the doctor everyday to hear themselves talk. I think doctors need to listen to people when they say, "something isnt right here" and not brush them off. I am not and have never been the type of person who calls the doctor for nothing.
0 -
Oh, I understand exactly what you're saying. I am the same way, I don't complain much, so please take me seriously when I do, I know there is something wrong. Had a bit of a trying experience over it once, but now they take me seriously if I say I think something's wrong. Good luck and lots of ((((((hugs))))))).
0 -
nora - you're totally right. You must be so frustrated. Especially with dealing with 2 hospital systems.
I have been complaining of a pain in my rib that comes and goes. I've mentioned it a few times in the last 6 months, and my BS and my onc both just say that it's from radiation. How do they know this? No tests have been done. I often have a visual of the day when they decide it's bone mets and I have to say "I told you so" and wonder about if I should have been treating earlier. I am especially frustrated by this when I think about the fact that I found my own cancer that no one else suspected - one month after my annual gyn appt and 6 months after my yearly mammo.
Yes, I am considering seeing a therapist about recurrence anxiety.
0 -
I know what you mean saralmom. I have had a rough time for the past couple of months, also with so-called friends who were frustrated with me for bailing out on a party early for a friend who has done a lot for me. I was called "ungrateful" and this person also told me that this mutual friend has done a lot for me and she knew I had a sore throat but I couldve stayed longer than I did and it basically was a very long email telling me what a horrible friend I was to leave the party early. Bottom line was she had no clue how horrible I was feeling and if it was anyone else, I wouldnt have even come to the party.
Then this with the Oncology office. I felt for the past 2 months something hasnt been right and no one is listening. I don't want to be "right" on this one but now the friend is coming back and feeling badly for acting so harsh with me now that she knows what's going on, and the ONC office is listening to me.
I dont want to be right on this one, I just want it to go away.
0 -
Oh Nora. That is horrible and you shouldn't be going through any of this mess. Hang in there girl. Remember we are here for you. Keep venting too as it really helps to get it out of your system and does help you feel better.
0 -
I just went for Herceptin #15 yesterday and started to have the end of active treatment discussion with him. I will be like all of you - worrying about the random pains and wondering which ones to take seriously. I agree with that little voice in our heads thing - I knew something was wrong before my BC diagnosis too. I am so sorry nora that you are having to go through this. Just remember that we are all here with you.
tonlee - on the osteopenia front - here is the deal. I have been osteopenic for a long time, at least ten years. I had a small amount of progression from the beginning but have been stable on bone density scans for the last few years. I get them because I had a complete hysterectomy 10 years ago, and they have been watching me because of the loss of bone risk from that and because I fit the physical criteria of skinny white chick, as lago says. I took both Boniva and Actonel at the beginning but could not tolerate the upper GI SE's. This is why my MO mentioned the Prolia. Interesting there are a couple of news releases on Active Topics today from San Antonio about the benefits of bone stregthening drugs and survival. Apparently they work better in women with very little circulating estrogen - and baby, that's me!!! I have not made any decisions, and probably won't, without another Bone density to substantiate loss enough to warrant yet another drug to take. My last one was the same day as my bad mammo/US/biopsy referral, so about 16 months ago. MO likes the Prolia because it has preventive and treatment qualities, unlike Reclast which is treatment only.
0 -
Nora - There's alot to be said for intuition. I knew also as soon as I found my own lump even though everyone told me it was probably nothing. I hope for you the node turns out to be nothing. Keep your chin up and know that we are all here for you!
0 -
Thanks, Ladies, for the information on bone treatments/drugs. I am going to have my first bone scan pretty soon. I told my MO that my sister has osteopenia. I am wondering if I do, and what this will mean for my upcoming Tamoxifen regimen. I still have a lot of estrogen circulating. Should be done with chemo (except for Herceptin, of course) in the next 4 weeks! I was interested to read that some of you refused permanent tattoos for rads. I hope that is an option for me--I have enough scars!
0 -
Interesting information SpecialK. I'm the same profile, skinny white chick. I'm on the Boniva and hate it. They talked about the yearly shot but I think this Prolia sounds worthy of inquiry. So you say, it is better if you have low estrogen which wouldn't be the case for me or I wouldn't be on the Arimidex but I admit I'm not as knowledgeable about all of this as I should be.
0 -
ArleneA - I think because you are on Arimidex the bone drugs may work better, you do have low estrogen as a result of the Arimidex. The low estrogen info is coming from the news release, which was an analysis of survival, however this study was done (I think) on women who had not had chemo. The theory was that because of the bone strengthening bone mets have no porous bone to take hold in. Not sure what this means for those of us who may or may not be considered "young" and have had chemo.
0
