Calling all TNs
Comments
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Heidi - wantd to pop in to let you know I'm thinking of you.......
LJ - Have a wonderful time in NY!!!
Mitty - It really does take time for your body to recover from chemo. I remember after I had all of my eyebrows and lashes back I felt like I was on the mend. My eyebrows were growing like crazy, had a few waxing jobs done, then suddenly they started to fall out again months after chemo. I did't completely lose my brows and lashes, but they thinned a lot. That was when I realized how long this stuff lingers and it takes for us to recover.
Monika - Happy belated bday to your daughter, she looks beautiful like her mother.
Thank all of you for the prayers and good thoughts.
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Hey, Monika!
I´m brazilian - from Recife! o/
I'm gonna go to NYC in june, maybe we could schedule a little get-together somewhere. How's that?
=]
I've checked with myriad.com, but it seems there is a testing designed for people of ashkenazi jewish descent and myriad does not go there. I'll keep on browsing and come back here to post whatever I find.
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Sugar and Swanny - thanks for your pointers on Rads. I saw the nurse give another lady a bottle of cream, but so far they haven't given me anything. Right now, it seems like it is nothing really. I will try to see if I can find a cream with Glaxol base. You just go in and out in 15 mins and there are no feelings what so ever. I hope this will be over soon.
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Erica: I did 6 TAC tx and would go to aerobics on week 3 because that is when I felt good enough to go. I have known many of the women there for 15 years. I always wore a bandana. It always felt good to be there among friends. And when I walked in the room I got a warm welcome. They called me their "Hero" I explained that it was easy being brave when you don't have any other choice!!!. I also bought a stationary bike to use at home. 15 minutes was about all I could do some days. Rest when you need to, move when you can.
Navy
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I actually feel really good after working out yesterday (little stiff though!). I think I slept better, too. Today I'm going to try spinning (for the first time in three months). They'll just have to get used to my bandana...
I just hate having to keep explaining to people where I've been - I'm bald, for goodness sake - figure it out!!
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Hi Erica, I started Taxotere back in December and have not been able to work out since... the aches and pains and fatigue along with the hung over feeling I can't shake for about 2 weeks makes it unbearable to even try. I am now done with my treatments as of yesterday and I am hoping in a few weeks I can get back to curves... I love curves it's all women from 20 to 80 and I never have to feel like I need to wear something on my head . There are probably about 20 other survivors of cancer that work out everyday. I am sure you look beautiful !!!!
Tracie
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EricaH, I did spinning while taking treatment, and wore my bandana. Just take it easy and go at your own pace.0
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I haven't been to spinning since DX. Just recently getting into Zumba. Very good work out and fun, too.
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Oh my! Workouts, spinning, zumba.......I feel as though I have to lie down now just from reading your posts!
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I don't know how you guys exercised! I was working out pretty hard four days a week when I was diagnosed, but got so weak so fast. I'm trying to slowly build up my stamina for surgery, and did 10 minutes on the elliptical today, just about passed out! I plan on doing something every day though now - I want to really try and feel good for my surgery.
Had my pre-admission stuff yesterday, and my heart rate is apparently a little high - around 100. Did anyone else have this? I'm pretty sure it is just me weak and out of shape, but just wondering.
Met with my PS yesterday also, and we decided on a TRAM in the fall. He wasn't willing to do a delayed DIEP, because even though he has a 99% success rate, he said the 1% of failures were always on women with radiation. I'm comfortable with the TRAM, and we like to call him the "superstar" doctor, lol. Staightforward, uber-confident, and only does reconstruction, some of them very serious operations.
My cording in my cancer arm got a bit worse, but my BS gave me a few exercises, and they helped. Everyone seems to think it is a good sign, so I'm going with it.
Heidi - I hope your knee is healing and you are feeling good.
Jenn - I hope your biopsy went well and I'm really keeping fingers crossed it is all ok.0 -
Hi everyone,
Went to see my doctor yesterday for my surgery next tuesday and decided on a mastectomy. The MRI and ultrasound showed that the chemo worked really well, so very happy about that!!! But because I had 3 lumps in my breast, my doctor thinks it would be safer to go for a mx.
So tomorrow night will be FUN NIGHT for me. Going to see Bon Jovi in concert. Can't wait!!!! OOOOH.... we're half way there. OOH OOOH, living on a prayer................(my anthem....)
Have a great week-end everyone.
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Suze- My heart rate was high during entire chemo. 113-120. It is lower now, but still not back to normal.
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Have fun at Bon Jovi concert Babs...sounds like so much fun!
We have talked on here about how music has gotten us through alot of things.
Guns and Roses.."sweet child of mine" always brings tears to my eyes..of all things!
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Bon Jovi was here in Toronto the other night. A friend went to the concert for her 40th birthday and said he was amazing and he and his bandmates still looked so good!
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I saw Bon Jovi a few years ago in Houston... It was the best concert I have seen in years. Have a great night you deserve it.
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Have fun @ Bon Jovi!!!
Lovelyface - My skin didn't really start to change colors, nor did I notice anything until after it was over. The nurse reminded me to rub lotion on after treatment, after showers and often during the day, just not to put it on a few hours before my appt. I used aloe from my aloe plant at night, no scent Lubriderm and Miaderm. A lot of women use Aquafor and love it, my rad onc said it was good, but it's thicker and when the skin is tender it's harder to use. I was lucky in that my rad onc gave me plenty Miaderm, but it is purchased online, not in a store. Remember, do not use the aloe or lotions if you have an open area (which can happen near the end of radiation). Good luck!!!
Yesterday was the lung biopsy - long day, but it's over. Monday is the PET scan. I'll keep you posted.
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Good morning girls, It is raining here
in my Sunny California....I can't go out for my run. Babs How fun ... BON JOVI! I had promised to take my youngest daughter to see him but could not do it last year . She is crazy about him. And I love your Anthem, one of my favorite songs....
Deiag check your private message inbox.
Jenn hang in there.
MBJ how are you? Have a great day girl.
Have a great weekend everyone
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Jenn3:
We are all hanging in there with you Jenn - you are not alone!
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HI everyone, new to this thread. I am starting rads 3/3, finsihed chemo 2/3, T/C x4. I read through many pages here and it is so reasuring to know everyone is feeling what I have felt after the chemo is over. Just gotta hope the chemo worked. Seems like different standards of care at different centers. My onc said there was no evidience of the adrimiacyn (spelling?) doing anything more than the T/C for node negative, just more side effects. I just can pray we did the right treatment. Everyone wants you to be happy chemo is over, they just don't understand what that means for TN, even when you explain. Hope everyone still having chemo is s/e free, and those doing radiation are doing well. I am on the March rad thread also, but I'm so glad I stopped here. It's like you can read my mind without having to explain a thing!
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Welcome msjag - glad you decided to join our thread. You'll get a lot of support from the wonderful ladies who post here.
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Hi everyone! I have the flu and had to cancel my nipple surgery. Not coming on much, just sleepinmg.
Bonjovi: I hear they put on a really great show!
Jenn: Sending you many good thoughts!!!!
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MBJ - So sorry that you had to cancel. You get all prepared for it mentally and then one of these unexpected events happen. Now you have to start all over, but nipple surgery I hope is not too bad.
msjag - I did not have any node involvement, yet I got chemo dose dense, 4XAC, 4XTaxol. I always wondered and will always wonder whether I was over treated. My IDC tumor was 3.3 cm, and DCIS in the same breast was 1.5 cm.......(upon re-test), previously it was noted as 0.5cm, Grade IIA. I was given the highest level of chemo, which is dose dense, every two weeks. I guess I will always wonder throughout my life, whether the dose dense with AC was necessary.
Did I tell you guys that my Onc. told my son and I on Friday that since I was 5% positive with progesterone, that I was not regarded as TN. He is extremely difficult to understand and is highly highly intimidating and demeaning to his patients. My son and I just looked at each other, not sure of what we were hearing. We are still not sure whether he meant what he said, that I was not regarded as TN or whether his sentence was so complicated, we couldn't figure out what he meant. I am seriously looking for another Onc. I don't care if he is smart, he seems not to know about my case. I think once his patient gets a recurrence, maybe that's where he is good, but he stresses his patients out so much. Whenever I ask him something and he replies, he will add "as I have previously told you over and over"
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Jenn - thanks for telling me about taking care of skin during RADS. I am currently using Aquafor. I have aloe plant at home too and have put it on my face before, maybe I will try that if I see any burns.
Did you get the results of your lung biopsy yet? I am keeping my fingers crossed and a prayer on my lips, for you.
PetScan is not too hard to do, there is just waiting after they give you the sugar solution. The scan itself is not stressful. The worst part is hearing the news. I had told my doctor's office to call my son with the result, as I could not hear it and maybe will have a heart attack. I was so lucky that when I was talking to the nurse on another subject, she blurted it out, saying your petscan was all clear. I just don't know how one can be comforted to hear news about this kind of stuff.
My prayers and love, hugs are with you. Good Luck on the lung results and the petscan.
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Okay, I'm having my first "scare" and hope someone has some been there done that stories...
I've had a mild headache for 3 days straight now, it feels like a band is stretching across my forehead to my temples. I am prone to headaches, but can usually break them after a day or two. Nothing is working and I can't take aspirin or ibuprofen as my endo is in less than two weeks.
I did end my Taxol on Monday, but didn't really get headaches from it. I've been using Benadryl at night for a month or so, could this be related? (I plan on ditching it starting tonight.). Tension is an obvious thought...maybe sinuses, though I don't typically have sinus problems.
Obviously, I am looking for anything but the worst...I'll call my onc if this goes over 7 days...just hoping for some similar positive stories.0 -
Suze- I, too, am prone to headaches and actually had the scans to check for mets. It's scary, scary stuff. What worked for me was taking 2 Xanax at night so I would not wake up with one in the morning (supposedly one of the "Oh Sh*T" symptoms---morning headaches).
I think you may be on to something with the Benydryl. I'm sure you know that there is such a thing as aspirin rebound and, since Benydryl was not designed to be used daily, there could be a related SE.
Have you tried going cold turky for a few days and then popping an Excedrin (or whatever works for you) when the headache comes on? I think if you can break the cycle you are in you may get some relief.
Keep us posted.
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Just found out I was TN on Thursday. See 2 onc this week to see who I like and get two opinions. Lumpectomy 2 wks ago, 1.9 cm, margins clear and 3 nodes removed- all clear. Yay! But the TN info seems to put a damper on my Ia diagnosis. Seems chemo is likely when at first I was told rads only. But I guess onc visit will tell all. Am just telling people that chemo seems likely; explaining the TN is too much too explain and frankly I don't really get it either. The E/R- means no hormone pills. But why am I supposed to focus on the HER2- as being a "good" thing? That's what surgeon's PA told me but I was in a fog. Anyone able to clarify? Thanks!
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Heidi - thanks for the feedback. It sucks that everything becomes so damn scary, even things I have
normally dealt with.
I'm not waking up with a full-blown headache, but there is a little tightness in the am, just enough for me to know it isn't gone.
I tend to get my nastiest headaches when my stress is over, so one at the end of chemo isn't a surprise. But those are usually migraines that last 3 days or so, and this just isn't a migraine.
Thank you Heidi. I will definitely drop the Benadryl, and take a small dose painkiller with my Ativan to see if that breaks the cycle.0 -
Hi Huskerkkc- welcome to the roller-coaster. Her2+ is also a very aggressive cancer and although there is Herceptin to fight it it is still better to be negative. The problem with TNBC is that, after chemo and rads, there is no further tx available to us. The good part is that we don't have to experience the SEs of Tamoxifen or Herceptin and our recurrence rate goes down after 3-5 years whereas ER+ recurrence rates continue for much longer.
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Suze- Google "let-down" headaches. They are common after a stressful event ends and were well documented after bomber runs in WWII. I get them alot: react well in an emergency and when all the fuss is over "BAM" instant headache.0
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Heidi - that's me also. I manage to get through the most stressful things, then BAM, nasty headache. Really hoping that's all this is.
Huskerkkc - welcome. I'm sorry you have to join, but this a great group of women who are very knowledgeable. Like Heidi says, HER+ is very aggressive, and even with Herceptin, it is still better to not have it. TN has it's own bad rap, but in the end, all cancer sucks. You come to terms with your pathology over time and even learn to find the "good". For example, many doctors consider TNs cured after 8 years. This is something ER+ women can never say, as they can recur 20+ years out. So, I try and find the silver lining.0
