TRIPLE POSITIVE GROUP
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Hi Oceansky - my BS ordered an MRI prior to my scheduled lumpectomy to help with the surgery and also to look at the other breast since my tissue was so dense. That is how she found that I also had a tumor in the other breast that the mammo had missed. Thank goodness. I can't imagine going through all this and then finding I had BC in the other breast also.
Feeling pretty good and my surgery site looks good. I see my PS tomorrow for my post op appt. Only thing that looks a little off is they my cleavage looks a bit crooked lol. I think he decided they needed to be closer together as that area was straight with the TE's but had more distance between them. I don't care though. I was not expecting perfection and the results that I see right now are just fine with me.
SpecialK - hopefully we can get together for the next Buc's home game - we got a few weeks though. I intended to go to that one but they way they are playing I may opt not to watch it - just be there LOL.
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linda - glad you are doing well! You are wise not to expect perfection in this process too. I have missed the last two Buc's home games as I was in California. DH went to the first one, but not this most recent one. Maybe it would be good to just wander around trying new food instead of watching the game -- things are not going too well!
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Linda, you probably have some swelling yet too. They will change a little over time.
My BS office called today and moved up my appointment to Thursday. I had told them I was going out of town next week for a week. They want to make sure it isnt some kind of infection and if so they could get me started on antibiotics. Im not sure as I don't feel bad anywhere else. Hoping for the best, but really nervous this time. Im glad they called to move it up so at least I'll have an answer. It is really achy also.
SpecialK-it is hard to believe it has been three years. I keep thinking how weird it will be if they do this ultrasound and think they find something, and I have to call them and tell them Im not coming on the very last injection. Plus, I want to see the trial manager again. I'm hoping she is pregnant. She is 37 and just decided she she would like a family. She was taking hormones, etc to get everything going, hopefully.
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Fluffqueen - glad they were able to get you in earlier, keep us updated
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fluff - hope you get answers and that this is nothing. I have become very attached to my coordinator in D.C., I will be sad not to go and see her anymore after I am finished. The good news is that I do go to the area now and then, so I can always pop in and see her. I hope the plans for you work out and you are able to go this last time.
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Fluff glad that your appt got moved up!! Hope you get quick answers and find that it is nothing to worry about.
Had my post op - doc liked how everything looked. After he left nurse said she thought I looked "perfect" I am pleased.
Have an appt next week to remove the stitches and the dermabond. I am feeling very good - energy is almost normal and really no pain. I have to keep reminding myself to NOT do things.
Had my herceptin treatment this am also - they are running it over 60 minutes now - tried it last time and had no ill effects so I am going to continue on that schedule.
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Linda, Glad you're feeling good. Am looking forward to being where you are in the process...Post-op and moving forward. Good luck and keep strong.
Had my MRI yesterday and it turns out there are four masses in my left breast rather than the two seen on mammogram/ultrasound. The second two are small and no node involvement showed on the MRI and nothing showed in my right breast which I'm very glad about. So am guessing seeing a few more very small masses on the MRI are not that unusual?
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OceanSky, I had 5 different imaging tests done to make sure they had the best picture. What they can see on one may not show clearly on another, and vice versa. My MRI didn't show the two lesions clearly, for example, even though we'd seen them already on mamm, ultrasound and PET scan. For me, it means breast MRI isn't my first choice for seeing clearly what's happening in my breast tissue. All that's to say that what is usual or not just varies from person to person, I think.
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linda, that sounds so wonderful! i am so happy for you! please do take it easy for awhile!
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Linda-I think running herceptin longer can make a big difference. the first couple times after I finished chemo, they ran the dose dense in 30 minutes. For the next week, I would feel worse than I did when I was getting chemo and herceptin together. After the second time, I mentioned to my oncologist how bad I felt. He changed the length to 90 minutes, and said I could also come in every week or every two weeks if that would help. It made a huge difference.
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Linda, it is wonderful to hear you are feeling so good and looking perfect! Are you getting steroids or benadryl with your H only infusions? My MO decided I could skip them and see how I react, which is good news but its making me a little nervous, would hate to experienc a bad reaction.
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I stopped using Benadryl PFC and it's working out fine, but I run it for an hour. Everyone is different, so if it's stressing you too much, keep using it. It won't hurt you.
Congrats to you ladies reaching great milestones and keep the faith those who are in the midst. I'm starting my first rad treatment today. Another milestone.
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Linda 505
Wonderful that things are sounding so positive. Nice way to start my day
Debiann
Did not need Benadryl pre herceptin only but concur with Fluff . To all who are still in treatment : do not be too anxious to rush those herceptin only infusions. Think it was my 13 or 14 th and the nurse said you've never had reactions do let's speed it up to 45 minutes. I can't even describe my reaction . I was so exhausted and mentally spent that I don't know how I made it home! I was so off I didn't know I was off!!! It took a few days to realize what had caused it and weeks to recover.
Went back to 1 1/4 hour transfusions and was fine.
EfcJax
Good luck with rads.. Most of us sail through. Just the daily trek. Might find yourself really tired at the end. I was absolutely the most tired I'd ever been.
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Hey Debiann
I don't get any premeds with the herceptin but I am sure if you are concerned about a reaction you can request it.
Wow ashla - thanks for the heads up - I will stay with my 60 minutes.
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I am another who had issues with faster H only infusions - never had problems with bone pain or aching until then, slowed it back to 90 mins and problem solved.
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Hi all,
Linda, so glad to hear you're feeling good. I'm looking forward to getting my TEs out later this year. They feel like baseballs glued to my chest. Ugh.
Fluff, I'll be thinking of you tomorrow.
efcjax, good luck with the rads.
Oceansky, I agree with Cassiecat that it varies person to person. My mammogram was deemed "all clear" 10 minutes before I got the ultrsaound (and later an MRI) that showed the tumor. It just depends.
And to all the rest, thanks for this information on the herceptin-only infusions. I am hoping for my final Taxol treatment on Friday and then transition to Hereceptin-only on Oct. 3. I will ask about lengthening the infusion time as the current plan is to run it over 30 minutes.
Sending hugs to each of you.
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For some of the newbies who may not have done the inevitable research on herceptin. We are fortunate indeed!
Dr. Dennis Slamon
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ashla, thank you for sharing that! I am, indeed, so grateful for that research.
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Has anyone had their Herceptin/Perjeta with chemo moved up by a day or 2. My 4th cycle has been moved up by 2 days since the doctor is off, and I am feeling nervous about this. Anyone have this experience? Is it ok to have the Herceptin/Perjeta early?
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Thanks guys, and Fluff, many prayers and thoughts from me! I'm sure you're ok, but understand all the worries.
Trisha Ann, I have been dealing with many of the other symptoms of IBS, so much so that I've thought about looking into trying one of the medicines. And I eat way more dairy than I used to so I think you are on to something. I know, I know enough about medicine to know that the body is not innervated very specifically, but I guess I just thought IBS wouldn't cause a low-grade pain in the pelvic area... I'm definitely taking your suggestions.
I have to catch up on the board, but just wanted to say to the newbies--2 years ago today, I had my biopsy...on a Monday no less. by Wednesday at 3:00, I heard my diagnosis. And I'm still here, feeling almost like I never went through what I went through.
One suggestion from me--and I never considered this during my fight--take care of your emotional health as much as you do your physical health. My NP told me I'd "crash" at some point because I was so positive and so in denial. It was true. I've had some symptoms of depression this year, but I'm working on it.
And Pinktober is not my favorite, although I do know Estee Lauder gives a really good return on their products, so maybe treat yourself?
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Ashla and Specialk-funny when someone mentions something like the H time, it takes you back. I remember those first two times after chemo. I had few problems with chemo and H. Then I get that 30 minute infustion. I was nauseous, exhausted, ached. It took me mentioning to my onc that i felt so much worse on just herceptin.He knew immediately.
Mentally preparing myself for tomorrow. Trying to decide if I want to ask my husband to be there too. Doesn't help that I had a customer at Macy's today, who started talking about her chemo and herceptin (I swear I have BC on my forehead cuz I get them all). Mentioned that she had her first bout in 2000, had bmx, and last year it was back, under the implant to her armpit and spots in her lungs. All started with armpit pain, and some coughing. I swear I did not even bring my issue up. After she finished I had bc tomorrow and was having a test tomorrow for some underarm pain, and she said go as soon as possible. Jeez....what karma
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Fluff, super positive thoughts for tomorrow. I know, it might feel like karma with that poor woman visiting and chatting, but bet it isn't! You have a cyst. :-) That's my story and I'm sticking to it.
Ocean, the MRI I had imaged both of my breasts up to my armpits. You lay down in the machine with your arms over your head in arm rests. My radiation oncologist said it is a very sensitive technology and rarely misses anything--to the point it produces false positives. But yes, they are doing this to look for other issues, and like Linda said, it is a blessing if they are there and are found.
And with Herceptin-I always got 30 minute infusions and was fine. But now I wonder if that might have been why I had so many GI issues for so long after chemo. With Herceptin alone, I didn't get pre-meds so no Benadryl. And if anyone of you gets a reaction during an infusion, do your best not to worry. Press the buzzer. I had a huge reaction on taxol number 4 and was mighty impressed with how the nurses reacted and how much better I felt within a few minutes. They know the drill ;-)
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Oh, and I had a dexa scan today and thought the lady acted really weird afterwards too. Told me she was doing my hip and lower back, then came in and said she was doing my arm additionally. Figuring no good news is going to come from that either, lol.
I think I need a little wine to go with my whine
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Pbrain - I'm not sure about the medicines for IBS, I haven't really looked into them as yet. Look at the low FODMAP diet - it's instrumental in starting to find out what triggers IBS.
I hear you about the pain - I never thought such severe pain in that area could be caused by IBS - but for me at least, instant relief :-)
I don't know about over there - but here in Australia we can buy lactose free milk very easily in the supermarket - so it was an easy thing for me to try.
Good luck!
Trish
xoxoxo
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fluff dexa should be back hip and arm. In your pocket tomorrow.
My herceptin. Tomorrow by the way is 90 minutes. No problems
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ffluff, i just have a feeling you are going to be okay, but wanted you to know my thoughts will be with you tomorrow. its just always kinda scary how fast our minds go there, huh? i just got my port out a week ago today, (YAAAY) and they would'nt take it out unless they were sure....would they? they waited long because of several scares, but i am good to go i guess. on my dexa, i always wanted them to do my wrist, but it wasn't called for. and i read every last "good luck" by a technician as if they know i am going to need it.. its just what we do. but i think you are going to be alright.
my brain id so paranoid, i thought they gave me lactated ringers during the procedure, because i have caused enough grief to them, i thought they WANTED me to get mets. still not sure they wouldn't like to kill me...
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Fluff thinking of you today and sending all positive thoughts!!
Was online looking at me insurance claims and saw that something was sent to pathology from the exchange surgery??? Is this normal? Is any tissue removed during surgery sent to pathology? My PS didn't mention it so I guess I shouldn't worry but you know....
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Mornin Linda 505
Just woke up and no coffee yet but figured you're anxious . Don't know about tissue from exchange but I asked my surgeon if I could keep my power port and he said that it had to be sent to pathology !
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Ahhh - thanks Ashla - I bet the expanders had to be sent!! Get some coffee!! LOL
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Thinking of you today fluff!
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