TRIPLE POSITIVE GROUP
Comments
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lago - saw your hair pix somewhere (can't remember which thread), it looks awesome! People have to have told you at some point that you look a little like Joan Baez.
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Lago I saw your pics on another thread and thought the same thing-you look like Joan Baez (and she is one of my favorite singers)...saw her in concert just a couple of years ago...that's a great look!!!0
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TonLee...with my diagnosis came this amazing ambivalence for others feelings...like, I don't care if it's inconvenient for a doctor to order a scan, or if they think Im a nut for insisting on a needle biopsy of something that's concerning me. I am a pain in the butt patient now. I got this book, called The Survivor Code. It has stories of people who survived horrific situations. They were all scientifically analyzed for similarities. One of the studies showed it was the pain in the butt people that advocated for themselves that survived. : )
No question....It's scary. I'm scared for you. I'm scared for me, and all the rest of us. But we are here together, to support you and each other. Hugs and healing white light to you tonight, and keep us posted as to tomorrows events!!
SpecialK...yay!!! To another treatment down!! Steroids suck, don't they?!?!0 -
Thanks Gee - I am still in the middle of finding out about the steroid experience! I will file a full report in a couple of days! I wasn't happy about changing horses in mid-stream but no choice. I also don't want to change regimens at this point. Is it weird to be excited to have gone to chemo today because now I am 2/3 done even though I know the next week will be hellatious? It is a mixed bag of emotions to be sure!
Hello my dragonfly!
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SpecialK,
The steroids really helped me. They made me feel stronger the day after TX but the crash came about the same time the Neulasta kicked in...that was always a "dark" (read emotional) time. Glad things went well.
Wow about your leg. You've had quite a ride haven't you?
I'm sorry to read about your brother. I've been on both sides of cancer, and having it imo, is better than watching someone I love die from it. ((HUGS))
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Gee,
Yes I have the same reputation at my cancer center. Unfortunately there are subtle ways of paying the squeaky wheel back. Small slights that add up to a significant wall of resistance....but when I take my husband, we are a steam roller...buwhahahhaha.
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TonLee - good luck tomorrow. I hope they can help you resolve the lump and cording issues. For what it's worth (and it may not be relevant at all!), every time I get even the littlest boo boo on that hand or arm, it swells up around the hand and I get a lump in the armpit.
SpecialK - congratulations on making it through round 4! Hope the steroids help.
I also had round 4 today (of AC) - and even though the next week will suck, I am happy to see the end of that red devil! In two weeks, I will start receiving T-DM1 every three weeks for a year (as part of a clinical trial). I'm looking forward to being a guinea pig!
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TonLee - My brother's story was very sad. He had some back pain which was chalked up to working out too hard. They gave him pain meds and he developed some GI symptoms - again not unusual. Then he became jaundiced so he went to the ER. They admitted him and ran numerous tests. Took about 3 weeks to diagnose him because bile duct cancer is tricky. They could not treat him because it was so advanced - 60 days from diagnosis to death. He was the same age at diagnosis as I was, but both parents died at 83. When I was first talking to my onc and I told him that my brother had bile duct CA he just shook his head - it is pretty much always fatal. They just send you home and tell you to get your affairs in order. My Dad died from Stage IV lung CA in 2001 (two separate rounds of chemo at the age of 82 - he was a trooper!) and my Mom from CHF and a degenerative neuromuscular disorder in 2005. I can stand in the cemetary and see all 3 of them - my whole family. Makes me sad. I had to really push them from my mind when I was diagnosed, I struggled with feeling like they were pulling me toward them and I don't want to go yet!
cello - thanks! I know the last 3 have more cumulative problems potentially but I can see the light at the end of the tunnel now! Glad you are done with AC - one of my co-infusees today was on her first Taxol after AC as well. Here's to success in your trial (makes you sound like a lawyer!)
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SpecialK - was it a schwannoma? I had a spinal cord schwannoma removed about 15 years ago.
TonLee - If he tells you to go to an LE therapist and wait it's going to bug you. Ask if you could please have an MRI or something. Couldn't you justify it to see how the lymph nodes look now that you are finished with chemo? It's basically like neoadjuvanet chemo for the axilla. did you have an MRI before surgery? Do you have any evidence that there were any other positive nodes?
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SpecialK, that really moved me. I'm so sorry for your loss. And such a loss. You are obviously one strong woman. I respect that.
Omaz- There was lymph vascular invasion besides the pos. nodes.
I did have a breast MRI that was clear and that's it. I've asked him for scans before, he says no. I even went for a second opinion and THAT guy basically told me "you don't want to know."
But you know what? I've read some chemo doesn't work for some people. And if for some reason it didn't work for me, then I need to know that.
Seems to me if this is a lymph, and it wasn't there at original diagnosis then it grew while on chemo. Which means we need to investigate why it grew. Is it lymph fluid? Is it from cording? Is it cancer? If so then TCH wasn't effective against my cancer.
I'll find out tomorrow, but I am almost positive he will blow it off. But not before ONCE AGAIN making note of the fact I opted out of axilla dissection. (They always mention that when they're turning down a request from me.)
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TonLee - What about your breast surgeon? Would s/he be willing to look at it?0
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I have an announcement...
My hair is officially coming back!!!!!!! Yeahhhhhhh
Tomorrow will be #2 Herceptin without chemo (so 6 weeks since chemo)
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YEAH NORA!! HAIR HAIR HAIR!!!
Omaz, my BS is gone for 3 months doing some sort of training. He didn't like me making my own decisions anyway...I talk about why here...
http://community.breastcancer.org/forum/69/topic/767077?page=1#idx_14
If that doesn't work...an article called "Second Opinion or BS" on the Chemo section.
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TonLee....we are only a few days apart, is your hair just starting to come back now too?
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Not much Nora. I was light to mid blond, and some is coming back that color so it's hard to see. However, I do have much more darker blond coming in....but it's not much. My hair grows slow. Always has. I didn't have full scalp coverage as a kid until I turned 5...and it was baby fine and white until my early 20's.
Make sure to take pics! I will at 5 weeks, and then keep a record...I really like the visuals over on HAIR HAIR HAIR thread.
Have you lost your eyebrows? Mine have thinned and only the really blond ones are left...so it looks like I don't have any....the lashes are coming out too...you?
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TonLee - thank you for the kind words. My life over the last few years does seem to have been one thing after another. I expected something to take my parents at their age, it was not a shock. My brother's death was very much unexpected. He had not taken care of himself throughout his life but had recently made a number of changes, he quit smoking, lost weight, was eating better food, didn't drink. At first they thought he had pancreatic cancer which can be a lifestyle cancer, but bile duct cancer is more heriditary in nature, not lifestyle and common among preemies which he was. You know we military wives are strong, and I am proud of myself - I feel like I am teaching my children how to cope with the curve balls. Some days are harder than others. Because my brother and I had not lived near each other for many years I felt robbed of the chance to spend time with him now that our kids were grown, it was sad for me. There is nobody left who remembers me as a little girl and can share my childhood memories.
Omaz - what I had was very similar and contained in the calf muscle but had a hematoma component as well. The surgeon came out and told my husband it popped out of the parted calf muscle like an egg. He was somewhat mystified until the path report came back. That is always a weird feeling when the doc says "I'm not sure what that is..." It has never recurred and I was followed with MRI for several years and he released me after the last MRI showed no re-growth.
Yay nora for new hair!
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SpecialK - The surgeon thought mine was one thing from the MRI, then another type when he removed it and the pathology came out as the schwan, which was the third correct id!0
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Just got home from class but have to get up early for 7AmPT. Quick drive by post
thanks SpecialK & dragonfly Wow my picture is really making the rounds. Joan Baez is before my time. Do you mean one of these?
TonLee I would think they would want to do a biopsy if they didn't know what it was. Does your BS have someone to take over when he's out of town? Really hoping the best for you tomorrow. As far as treatment goes as I said before it is a crap shoot. There are women that have had full treatment and still get mets and women that only do surgery and don't. My once told me that in my case 40 out of 100 of the women don't need any further treatment. I might have done all that chemo, nodes and Anastrozole for nothing. I'll never know.
It seem several women I "know" have had scares in the past few weeks. I think the score is up for false alarm for your TonLee.
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Lago: Post your hair here!
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omaz - my MRI report was super-scary but the surgeon was fairly sure right before the surgery he was going to find a benign mass. When he came out to talk to my husband in the waiting room he asked if I had received a traumatic injury to that area based on the hematoma but I had not. It is weird but I have a tendency to produce these things, fibrocystic breasts, mass in calf, uterine fibroids, ovarian cysts, ovarian mass. It is the reason I did a BMX, which turned out to be the right decision based on my post-op path on the prophy breast.
lago - yes! Those pix of Joan - you are both beautiful! She was only a little before my time, I have a few years on you!
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Iago: please post your picture here? Or is that you on the left above?
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Lago,
The hair is FANTASTIC!! I won't have that much for at least 6 months!
You know what I'd like to see? I'd like to see the view outside your windows!!
Every picture you've posted with the windows in the back, I think...I wonder what she looks at out those windows everyday....what parts of Chicago?
So next time ya grab your camera....will you show us?
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SpecialK,
Thank you for sharing your brother's story. I too have a brother I love very much, and 24 years in the military left little time for an adult relationship. If something happened to him..ugh. Hard wouldn't even begin to cover it. My brother and yours sound similar, except my brother hasn't decided to start taking care of himself yet.
I am so happy you have your husband and children to help you. So many women I've met are alone during this BC nightmare, and I marvel at the sheer stark strength they are required to muster. I know they don't have a choice, but there is still something impressive about watching it.
My best to you.
Lago,
I'm being treated at a military facility so it's a little different. No, there is no one in surgery familiar with my case. I could call and meet with a brand new surgeon, he'd review my records for 30 seconds and likely want to start a whole new course of things....BUT first I'd have to wait 2-4 weeks to get in to see him, and that's only if I can get a referral from my Onc.
I'm not just battling ego to make my own choices...I'm battling a rank structure and standard operating procedures above and beyond "standard of care." A very entrenched system to say the least...and all male...(which I like) buwhahahahaha.
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Special K
I am learning so much more about cancer now. I had no clue there was such a thing as bile duct cancer. There is just four in my family too (Mom, Dad, sister and I) I cant even imagine not being able to pick up the phone and call them whenever I want to.
I think through my own BC journey it would've made it hard without their support as well. Bless you XXX
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TonLee I have heard about how sexist the armed forces can be. A gal I graduated high school with was in the armed forces. You don't want to get her started on the subject! Mix that with doctor egos OMG I can only image. Good thing you're a tough cookie. I can't see anyone pushing you around.
I live just west of Lake Michigan, Lincoln Park Conservatory, north side of Lincoln Park Zoo and the Peggy Notebaert Nature Museum. I face west so I can't show you pictures of that unless I go on the roof. It's cold, rainy and gloomy so I'm not taking any roof shots today. I think I'll wait till tomorrow when it's sunny to take pictures. It's just too depressing out today. The night shots are amazing too from the roof. You can see the entire down down skyline and navy pier ferris wheel all lit up.
In the city you might live in a small space but there is so much going on in your "back yard" all the time it's worth it.
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Wow. you look really nice, Iago.Thanks for sharing that tread with me, it was encouraging to see all the photos there.
I am losing my hair today, despite the cold caps, so I am getting it cut and a wig fitting tomorrow morning. I'm sad to see it go. It's as long and red as my avatar.
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windlass - Keep some if you can. With the cold caps it may not all come out and with the leftovers you can blend in with the new hair later. Keep using the caps if you can they can also help the hair come back in quicker after chemo. Hang in there.0
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Hi Windlass I am sorry about our hair. Which caps were you using?. We all will experience hair loss with any cap we use. But the fact you have any hair now is proof that what your doing is working. I hope you stick with it. Best to you
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windlass - If you are inclined and your hair is long you can have an "underhair" made like I did. The site is www.hatswithhair.com and I love mine. Before mine fell out I had 8" ponytails cut all over, sent them to this lady and she made something I can wear under any hat but it looks exactly like my style (don't know how she did that because she never saw it, maybe she can tell from the ponytails!) and when I wear it I feel like myself. It is much cooler than a wig and I can wear it for many hours without a headache. I highly recommend it.0
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