TRIPLE POSITIVE GROUP
Comments
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Jen, thinking and praying for fast and easy surgery and recovery for you.
Well, I go to see my cardiologist again next week. I am still having SOB, not bad but enough to notice. also my legs are swelling a bit. Both combined mean he wants to see me earlier than my apt on Dec 3. My PT said I had to call him, cause I was all for waiting for my apt. LOL. I will need bloodwork, and a chest xray, then get an echo too. Before I see him. Am I having fun yet?0 -
Wow, I can't keep up with this thread anymore....it moves too fast! I wanted to chime in and say congrats to Eileen! YAY!!!!
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Ok...the countdown is on. I am in pre op...I feel anxious, but, thankfully due to the ladies on this site that have had the same procedure...I know what to expect and feel inspired by all of you:)
Now bring on the meds!!!!!0 -
Lee - I live in a moderately remote part of Oregon but was willing to go to Portland or Seattle (200 - 400 miles) for treatment if necessary. After hours and hours and hours of research, I decided that going to the place just 90 miles away that does treatments even closer weekly, was just as good as anywhere else, they were all using the same protocols and I had great confidence in my MO. I think that if you have a rare cancer, or are metastatic and treatments have stopped working, or other types of complications it's worth looking in to one of the bigger centers, but HER2+ is common enough and has been treated long enough now that you'll get pretty much the same care anywhere.
Special K - Thanks for jumping in on the Neulasta, that's what I thought, but wasn't sure, since I didn't get it and didn't want to take the time to confirm last night - tooooo tired.
That's what's great about these forums, if you're off with your info, or just don't have enough info, there is always someone that knows to jump in and tweek it for you.
Good Luck Jennifer!
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lago - great song!
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Jenn404- praying a fast recovery for you!
Moon- love the new pic! Also prayers that all these symptoms disappear and able to start feeling better.
Rozem- more hugs your way! I just did PT today and able to do some more myofascial release on my tram sight. But feeling bloated. She said the steroids plus my monthly is making me feel like I have a to tight girdle on! Ugh! Bloated!
This board is awesome. All of you ladies. Such an inspiration and wealth of knowledge. And that you care to stay around and continue this journey with us newbies, and fight for more research....the list goes on. You all are awesome!
Lago- thanks for mentioning NED. Wasn't sure when mine would be. So, since I had surgery first then chemo, it's after my second surgery- ALND.
Going to go to my Look Good Feel Better class at 2 today. Feeling pretty good. Have some phenergan, Ativan and Vicodin on board. Lets see how putting make p on goes with all those meds. Lol! But really, looking forward to it. I sill have my eyebrows and lashes. A little thin, but still there. Went without my head covering last night in house for first time. My 8 yo cousin who lives with us didn't say much, but got on her Nintendo game and created hats for me. Lol!0 -
Good morning, ladies.
Today's the last full day with these breasts that I had to start wearing a training bra for in 4th grade. I don't think I feel as deer-in-the-headlights-ish as I did yesterday or Sunday. I'm hoping that doesn't change.
ashla - Thanks for your advice on building The Team™.
Until I found out I was HER2+ my first concern in terms of finding an oncologist was traffic. Ahhhh, I remember the good old days - living in the Louisville, KY area - when traffic patterns didn't dictate decisions/appointment times.
*Thanks to everyone for talking me off the "oh dear God, I need a special kind of oncologist for this" ledge.
One of the oncologists associated with the BS has good ratings and he went to school at the University of Colombo in Sri Lanka. Now, this is convoluted thinking at its best but I've wondered if he might be more open to me continuing with curcumin/bioperine (when it's not contraindicated during the treatment days - and IIRC, I think it might be) because Sri Lanka is off the coast of India and curcumin is such a staple (?) in that part of the world! (Some of the curcumin studies I've seen have come out of India).
My impression is that some doctors (not just oncologists) just wave off supplements and although I don't want to take the wrong thing at the wrong time, I would still like to be able to take the ones I've been taking pretty faithfully over the years - or most recently, i.e. the curcumin (maybe I'm a curcumin addict now :-) and R Alpha Lipoic Acid (versus Alpha Lipoic Acid). Also, I took a screen shot of a post about another supplement - TonLee may have mentioned it. I think it was Acetyl L Carnitine which I used to take daily until about a year ago.
Good grief. I miss the days when the most involved decision I had to make was whether or not I felt like getting my lazy-a** to the gym to walk the track - or what color I would paint the bathroom.
Eileen - I hope you enjoyed your celebratory dinner!
TonLee - Congratulations on your 2nd since DX mammogram results! Also, the belly up to the chemo bar made me smile...and on another note - I saved one of your old remarks about radiation because of the way you worded it. Here it is: "...everything slows to the never ending grind and beep of that monster machine. Which labors over me with its giant dilating eye twitching to see my soul." Wow. Reading the archives has been great for the information aspect of all this but there are also moments that almost take my breath away. From a creative/angst aspect that was a big one.
From a joyful "isn't modern medicine great" aspect, the imagery of the meds actually knocking holes in Nicky's tumor/mass was so powerful. Prior to starting this thread I had been one of those "why do I need adjuvant treatment if I have a BMX" kind of people. This thread has helped me understand why it's so important.
And from a cinematic standpoint - there was a post by SpecialK that was so poignant that it almost brought tears to my eyes. It was the one wherein you recounted your husband "manning the clippers" and it being harder for both of you than you thought. I couldn't stop thinking about it last night.
On another note, thanks, SpecialK for the additional information on the Neulasta. I just took a screenshot.
Moonflwr912 - I don't know what SOB stands for (other than my ex) but I hope it improves!
lago - IIRC, you first show up on page 1 of this thread (just checked - yep, you do). I'm currently at the point in the thread where you've started reading The Emperor of All Maladies. At one point, when you mentioned checking your side effects list (when someone asked you a question) I thought "well, I better create a document for side effects for chemo, radiation, etc. now before I forget." I've also seen your dated hairstyle succession photo and you look good in all of them. Damn, you even look good in your driver's license photo!
When the first PS walked in the examining room a few weeks ago the first thing she said (even before "hello") was "you look a lot better than your photo." I was completely baffled because I knew there hadn't been any photos taken up to that point (other than my MRI images!). I looked over at the breast surgeon and he said "from the scan of your driver's license." That photo is 13+ years old and it is a lousy photo. It was a weird moment.
Lastly, I'm curious about what Jennifer's mention of a "dye job" when she gets to the hospital - especially since I'm on the eve of surgery. I'm wondering if I'm missing a piece of tomorrow's puzzle. (Editing to add - the hospital just called - I know what the dye job is now)
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MsTori - I'm so glad you relayed the niece/Nintendo story! What a great combination of wanting to help and being creative. Also, I'll be curious to hear how the makeup goes. Even at 54 my skin is almost always in some form of a breakout and makeup has always aggravated it even more. After reading about some of the skin side effects mentioned throughout the thread I've started to wonder what's in store down the road...
ETA: I just reread your post and realized you probably meant how it will go in terms of the immediate effects of the meds and a steady hand!
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Thanks everyone for all the kudo's. All of you are in my prayers daily. Hugs Eileen
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Linda - Thanks for your input. You may have already said and I've forgotten or missed it but did you make the drive on your own? From what I've read everyone seems to feel pretty good on the treatment day. One of the oncologists that's 30 miles away has several 5 star reviews from breast cancer patients on one of the health sites. Lots of mentions about being very kind, caring and not making the patient feel hurried.
Did you ever have to go to the ER during the course of your treatments? I think I recall reading that proximity is a consideration because of that possibility. I don't have a general practitioner and my gynecologist, who is in his seventies, is 40 miles in the other direction. Maybe it's time to start going to my husband's GP who is local and was just starting his practice when my husband got sick. He was a key part of my husband's team.
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lindakr - happy to help - always thinking of newbies coming along and wanting complete info - I hoped you would not be bothered by my addendum!
mstori - LOL on the meds combined with make-up - I am sure you will look great even "under the influence" though!
LeeA - here is a link to the side effect tracking sheets from the American Cancer Society - I liked them and there is no way you will be able to remember what SEs you had when, unless you journal them.
http://www.cancer.org/acs/groups/content/@nho/documents/document/acsq-009502.pdf
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LeeA- yes! Lol! Wondering how steady my hand will be. I still have some thin eyebrows, so at least I won't provide to much comedy for the class! Ha! I have used Dermalogica brand since 2000. My skin has changed through years, but just switched up the moisture in my lotion. I have sensitive skin. Rosacia on top of it all. Before all this tho, honestly, I did not wear a lot of makeup. I was up by 5:15 and out the door by 5:50. And did dialysis nursing. So, I had a pony in my hair, mask on my face almost all day and sweating buckets under all that protective stuff. Lol! So if I wore make up, it just slid right off. I did wear it to go out with friends occasionally. This should be interesting today. Hey, may be fun! Let ya know. Still waiting on my head buffs!
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SpecialK- I will send you a pic! Lol!
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Ashla,
I was 2 years NED last month!
Lee,
It is probably different for everyone. But having cancer, being in tx, didn't really "hit" me until after chemo, when I lay alone in a cold room with just me and that machine. I realized then, it was MY fight. And my fight alone. (Though since I am a believer I get to see the room exploding with the unseen light of my Savior. But that's a different topic
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TonLee- while your present, does it hurt to supplement with the mag ox on and off after the initial 3 days? Instead do say, muralax? Having no issues and am regular , but it's also good for the heart.
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Ms Tori,
No it won't hurt, but I'd recommend going to Mag. CITRATE for the weeks between. I take 400mg of Mag citrate everyday. It is better absorbed and has more heart benefits (because of absorption) than the oxide. It is not as a general rule used for constipation...but it does work to keep things moving. IT causes your colon to collect water which helps in evacuation...
It also helps reduce headaches! And helps you sleep, so I take mine before bed.I can only find Citrate at Vitamin world though. GNC probably has it too. It's still cheap
I know you can get it online..When I did the Mag Oxide, I did it the day before tx, day of, and for at least a couple days after just to be make sure.....all with my Oncs blessing
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Jennifer404 - hope it is going well... Yes to the ongoing rib pain after all my surgery and tx. It's been checked and no sign of anything that could be causing it :-/
Jenn0 -
Good luck Jen! Enjoy the drugs. I was the dingiest person that day!!!
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LeeA - my closest treatment center is 30 miles, no matter what. I always had a driver as I was never sure how I would feel, sometimes I did end up driving home, others, I felt too tired. I also had a super rare side effect that caused my tear ducts to start to heal closed, so I had distorted vision and tons of tears, so by the end I could hardly see to drive anyway - I could drive for really short distances, but there where times I couldn't do that. I ended up having stents put in my tear ducts until they healed open (about 4 months after chemo) then they took them out and I've been ok. I haven't heard of anyone else on these forums that's had that, so don't worry about that SE. There were others in treatment with me that had no problem driving 30 miles - it's just safer to have a driver I believe. I had friends and family offer to take me - so mostly my daughters and husband rotated so none had to do it very often. So if you think you need a driver, you'll find that there are lots of people willing to help, ACS has a program where volunteers drive people to treatments if they are unable to. There's my 10 cents -
I didn't ever have to go to the ER, I did have to make an after hours call once though as my temp started to rise, he had me start the antibiotics I had at home and gave me a list of things that if they happened to go to the ER. But my temp went right down.
Remember - nobody gets all of the side effects and everybody is different, some people breeze through, some don't, but from reading through these forums, it seems that most people get some of the side effects.
I know I didn't always have the same ones each treatment either, so don't make the mistake I did and plan how each treatment was going to go, because it was different each time.
Oncologists!!! My plan was that if I didn't like the MO I was referred to, I would interview all of them until I found one that I had good rapport with. I lucked out, mine is young and had worked for several years in cancer research, so was up on everything, he was also open to listening to me, and no question was ever considered dumb. I wanted to continue some of my supplements, so ran them past him, some he was ok with, others he didn't feel comfortable with, I always asked why? and he'd give me good answers backed by research. A few times we disagreed, I'd give him the info I had, he'd check it out and occasionally changed his view, other times he'd come back and explain why not. SO - bottom line is you need to feel comfortable and confident with your MO.
Linda
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LeeA Tonlee and I have had a long e-relationship… even before this thread. I'm sure she told me to post here. I photograph well. Also white teeth always make you look good as well as good eyebrows. I've always had pretty white teeth but some of those photos I might have whitened up my teeth and whites of eyes a bit
The DMV photo is not touched up. The earlier photos I'm sure I softened the crows feet. I was so worried about eyebrows that I purchased the Anastesia Brow duo 1 month before surgery. I use it to this day. Best stuff. I introduced my 76YO mom to it this summer. She loves it. Also the LGFB program really showed me how to put on my makeup. I think that's why I look like hell in the first photo… granted it was less than a week away from my upcoming BMX surgery and I had been waiting 5+ weeks.I still haven't finished The Emperor of All Maladies. I think I got 1/2 through. Too busy looking for jobs right now but I'll get back to it some day.
Dye job might be the dye they use for the SNB (sentinel node biopsy)
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TonLee- noted and written down. Thanks! Just want to try and stay natural as much as possible. I'll check GNC.
Went to LGFB today. It was nice, but everyone started sharing and talking and we never really got to play with the make up. It's all good though. I usually don't wear much and I am pretty good at figuring things out. But got to meet some new people, so that was pretty cool. And......free make up was very nice.0 -
lago, is this the the product?
http://www.anastasia.net/images/P/p-16137.jpg
Maybe I should run out to Sephora tonight. I'm not a makeup person but creating something that looks eyebrowish for when I have to leave the house during TX is probably a good idea.
The BS's office just called. She mentioned a numbing cream for the sentinel node procedure/injection so yep, that's it.
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Yes that's it. I purchased mine at Ulta. It was the gal there that said it was the best. They have many shades. They sell it at nordstroms and lots of other places. Sephora might not sell all the shades they do run out. Believe it or not I use the darkest one. Here's the sephora linky They also have kits with stencils if you think you'll be drawing challenged but a bit pricey: linky
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I used the Sephora too with the angled brush, someone gave me a different brand as a gift and it's working well too, the trick is the angled brush, my eyebrows and eyelashes were the last to go, in fact they didn't all fall out until after I was done with chemo. Practicing with the brush while you still have some eyebrows will help you make them look more natural when the time comes, at least in my opinion, wish I'd done that. Since my brows haven't come back very well, I've gotten really good at it now.
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I used Anastasia Brow Gel - it works like mascara for eybrows. I never lost all my brows or lashes - I did eventually lose the bottom lashes completely but I kept half a dozen upper lashes on each eye, my brows thinned but never fell out completely. I don't know how common that is and I also did not cycle on lashes or brows - what I lost was the only time they fell out. I did not lose my hair until after the second chemo - at day 24. I never went completely bald either - I had random hairs all throughout chemo. I also had to shave my legs throughout chemo but I did get the full Brazilian benefit, lol! Seems to be the only location where I lost everything!
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Thanks Lago- also copied the link. :-)
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OK I am very confused I thought all this time and still do my path report said IDC but when talking to my doctor today and of course asking lots of questions she said I have DCIS no where on my report said DCIS so know very confused maybe she just goofed did not have the report in hands so I am thinking on calling tomorrow and talk to my favorite nurse and ask if she can look it up for me.
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Other then that the herceptin went well and I am actually in the middle of trying to work for the hospital as in house keeping they are hiring and I got a business card of the supervisor today and was told to call him yay wish me luck I need a job!!!
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ang - hope the job works out for you! Glad the H went well. Do you have a copy of your path report? I had both DCIS and IDC but my docs never really mentioned much about the DCIS because it really didn't matter in light of a Her2+ IDC, positive nodes and a BMX.
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