TRIPLE POSITIVE GROUP
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Both my BS and MO don't believe the tumor marker tests are reliable for breast cancer. I have never had one nor am I upset about it. Would hate to get false positive and be put in a false sense of security.
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kltb - I am thinking along the lines of technicolor dreamcoat for the robes - you are correct about the "no pink" rule!
dance - you are correct on the acute increase or upward trending on the tumor markers - that is what my MO uses them for. They are a tool only - not the be all or end all. That said, he also likes to PET scan too. It comes down to style points only, oncs do different things depending on their experience and practice protocals.
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I was told TM are not reliable ..Mine were normal when dx...
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kltb04 - I asked last visit and they told me they only do tumor markers for Stage IV and scans as needed. I am having routine MUGA scans because of the Adriamycin and Herceptin. I just finished AC and have one scheduled before Taxol.
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At 43 years old, I was dx with Triple Positive, Grad 3 (8 out of 9), KI-67 was 51% (higher KI-67 has been known to have better outcomes because the chemo works on faster growing cells first). METS to Liver and clavical area, no surgery, no radiation, straight to chemo (7 rounds of Abraxane) and Herceptin for life, took Tamoxifen and lupron shots to shut down ovaries until walls of Uterus were thick (it causes Uterine Cancer), then took out ovaries (oopherectomy) and started Femara (aromatase inhibitor).
The only downside from therapy is Peripheral Neuopathy in feet and hands that never went away, but I AM ALIVE to talk about it!
Going on 6 years NED and on Herceptin and Femara for life. I don't know about Nodes - they were never tested as I never had surgery. Oncologist is Dr. Marina Vaysburd, OBGYN is Dr. Mae Ushigomi and primary is Dr. Michael Harris all in CEDARS-SINAI Medical Group.
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Mayo doesn't do tumor markers either. They tell me my first line of defense is to be in tune with my body and report anything unusual ASAP and they will get to the bottom of it. It was quite obvious they were serious and they meant that too because when I said it hurt when I was breathing in for over 24 hours they had me in on that very same morning.
That and my regular checks where I go in and they do an exam and poke me all over and draw blood. Other than that, it's up to me.
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Regarding Tumor markers: My CA-27-29 did follow what showed up in my scans. I started out at 180 and when my tumors went down in 1/2, so did my tumor marker, etc. I still have them and they bounce from 26-32 (in normal range). My scans have remain clear since my first chemo/Herceptin in 2006 - no surgery, except for oopherectomy. I don't think you can use them to diagnose, however many women who have been NED and then had a high tumor marker, did find that their cancer returned and knew they needed scans to diagnose. I think it's different for everyone. I have no idea why, though.
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Sp K. And it shall be called The Order of the Immaculate Herceptin ConceptIon.
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kltb - good thing I did not just take a drink of water or it would be all over my keyboard - that is hilarious!!!
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FYI - Latest update: I started Herceptin August, of 2011 along with my other Chemo treatments, for six rounds, once every three weeks up to Dec. 6th. Started taking the Herceptin alone, on 12/27/11, and another round again, on January 17. Next scheduled herceptin treatment was due 2/7, but the results from my Muga, on the 2nd, showed marked decrease in my heart function, so they put me on a break. Had another Muga on the 16th of March, and all looked back to normal, so they put me back on Herceptin starting March 20th, on what they said was a lower dose. Had treatments on 4/10, followed by another Muga, and all looked good. Subsequent treatments on 5/1, 5/22 and 6/12, followed by another Muga on 6/29. Today, 7/2, went in for treatment, and they are stopping all remaining scheduled herceptin, as heart function not normal, again.
The day I heard about Robin Roberts, I could hardly breath, for fear that all this work, trying to save, and prolong my life, might actually weaken my body to a point that it's the treatment that could kill me, not the disease. Just learn also today, that the wife of one of my co-workers has now been taken off all chemo and drug treatments, and it's just a matter of time. So sad, so scary, and I feel so alone!
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scottie - Robin Roberts had triple negative BC, and received different chemo drugs that you, which had the unfortunate and rare SE of MDS. Try not to let it scare you - I know that is easier said than done, and you are not alone - we are all in this boat together. None of us have any guarantees, even those without BC - the best thing to do is live your life, day by day!
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Scottie - I hear ya on the worry...hang in there. Sorry to hear about your co-workers wife...news like that brings all the fears to the surface.
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Thanks everyone on our invaluable input on the tumor marker tests. Not quite sure why the insurer is balking @ payment now . My former MO never even disussed the numbers with me!
Hi cdbernal..
Don't think I've ever read your posts before. Wow...you've been there and are a testament chemo and herceptin! So they never even surgically removed your original lump much less any mets?
How does our MO follow your care? I've just finished rads , have 5 more herceptin only and will soom be put on either tamoxiphen or Ai's . How often does your mo see you? What tests and scans does he do?
How do you take your herceptin now? Is this the standard of care fir stage IV?0 -
Ashla I believe the reason you don't go for surgery once you have mets is so they can see if the tumor is responding to treatment… Cancer is know to mutate so even if you respond it can change so the course of treatment will change. That's why chemo comes in so many "delicious" flavors. The other reason is they don't treat to cure they treat to control (and ideally put you in remission).
Scottie you will now be more hyper-sensitive to cancer related things. I've noticed 2 women this weekend in 2 different restaurants sporting my old "chemo" do. I actually told the first woman I had her haircut last year at this time. OMG she seemed so happy I reached out. She has ovarian cancer. Seems like she had been NED for years then just got this recurrance. She seemed so happy enjoying a beautiful Friday evening with her husband just like me.
Here's my seat belt speech. You don't get into your car everyday thinking you will get into an accident. You get in your car and go your merry way taking the proper precautions (seat belt, stop at stop signs, no speeding… OK maybe speed once in a while). Same with cancer. Take your meds, eat healthy, exercise, reduce stress and enjoy life. If something were to happen that's when you worry. You can only be a survivor if you are out there living life the best you can.
I know easier said than done but it gets easier. I still get sad when I see someone pass too early but I've always been that way about any disease or early death.
Ha I missed the Robes thing. Can I get a PhD robe. Yale purple would be nice!
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Lago
Thanks for posting the seat belt speech. It makes me feel so much better!
Liz
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You're welcome. ♥
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Scottie,
Try not to freak out about stopping Herceptin. I stopped 3 tx short of a whole year. The medical community is still unsure about many aspects of Herceptin, like how long to give it, how fast, etc. May turn out 3-6 months is as good as 12.
My Cardiologist told me if your heart bounces back from a drop with Herceptin once, it will almost 99% of the time do it again. So you have a really good chance of being right back where you started, or close, with EF.
Ok, we share things here so I will tell you about some of the stuff I learned over the last week. Since I am going to San Antonio for reconstruction in a few weeks, and will be there for 2 1/2 weeks, we took a "small" family vacation (meaning somewhat close to home).
We spent a week on Lake Cumberland. It's beautiful there. Several extended family members came, including my most awesome cousin (10 years older than me, retired fire fighter, diagnosed 1 year after me with exact same cancer in exact same place!) She is just finishing up Herceptin, five more.
Anyway, I loved spending time with her. She's the only woman I've ever met who doesn't give me the "bug" eye when I want to do things like cliff jumping. I've almost always been more adventurous than my female counterparts. Not so with her. She is every bit as adventurous as me. So it was a FUN trip.
This is what I learned about having a MX and tissue expander while on a water centered vacation.
First, we spent at least 6 hours a day immersed in water. (It was 105!) Several hours of ball, or just floated in our life jackets enjoying the cool water. But most of the time we were climbing very high cliffs and jumping, water skiing, and tubing. And it wasn't nice and easy, it was rough and fast. If you ski or tube you understand what I mean. (I have at least 10 bruises, my ankle is black and blue (when a ski didn't break away after I fell), and I am so sore today I think I need a vacation to recover from my vacation!)
At one point when I was slung off the tube, I skipped on my back three times before finally slowing enough to sink....I thought "if ever there is a time I will break radiated bones, it will be now" it was so painful. lol
All of this activity led to what appeared to be a small hole on my MX scar line. I thought it was just water saturation making the skin soft. It turned into an honest to goodness BLISTER that grew and popped. Since I can't feel my breast, I couldn't feel when it was getting "raw" from the water and activity. (That is def a downside to MX. Before this I couldn't really find one when compared to lumpectomy. My cousin had a lumpectomy, so she can still feel everything and make adjustments.)
So um, now I have a "callus" where a nipple should be. Guess I should be glad it healed up ok. lol
Ok, the TE affected my balance of the cliffs. Some ledges are only 2 inches wide and you have to "hug" the rock. My normal boob squished and hugged, the TE was having none of it...so it was very awkward and def. changed my ability to balance and climb. It also was an adjustment to play guitar. That sucker just sticks out there with no give, so the guitar has to be really far out on my lap....lol. And when I hit the water from a tall jump, the other side "gives" while the TE side, not so much. And when being skipped across the water, the TE/radiated side is much more painful.
We ate all the wrong foods (the scale says 5 pounds! but I do know some of that is water retention from the salty foods), drank all the wrong drinks, and I have a killer tan now (RO said the sun thing is ok, wear sunscreen but don't worry about sun exposure unless in active tx), even on the radiated breast. I applied sun screen regularly, but I don't care how "water" proof it is.....I haven't found one that can hang with water sports.
So all in all, I've realized that while I have to be "sensitive" to the MX side, it hasn't really affected my quality of life much...and once this TE is gone....maybe not at all.
If I could just get my EF back!
Now back to the workout, so I can shed this vacation weight!
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On a side note....I saw a few references to birth control....my OB/Onc said are studies that link estrogen consumption HRT/the Pill to breast cancer.
She didn't feel any of them were definitive yet (method problems or to small) she believes there is some merit to them. I took the pill for over 20 years to make my girly bits work right. Now I wonder if I should have let it go, and not forced my body to do something it wasn't wanting to do...
Oh well.
There's a reason the rearview mirror is smaller than the windshield!
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TonLee I read that birth control pills were only an issue (breasts cancer risk) when you were taking them. Once you stop and it's out of your system they no longer pose a risk. Granted I wasn't on the pill for long. In my early/mid 20's. I think by 24/25 I was using non chemical methods of birth control.
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Sounds like you had a blast, Toni!
Love the seat belt speech, Lago
Re the CA-27/29 marker...my BS ordered one before my surgery and it was elevated (don't recall but in the high 40's). My first MO was "perturbed" that it was ordered at all because it's unreliable and causes "unnecessary worry and CT scans".....but he also said that since the test had been done, they would need to continue them. My second was barely out of the normal range(low 40's) so I don't know if they will continue to retest.0 -
TonLee, that's a hoot! I am glad you are ok though!
We live on a lake and just went tubing a few days ago, still have HUGE bruises. I also freaked out with my 8 year old. I told him to "hold on and not let go", well the tube flipped and he was being dragged underwater... never let go! I had to dive into the water screaming to flip him back. GEEZ!!
We just this week went ziplining where they hook you into a harness. It was called Firewire, because you are 1700 feet up and drop 60 mph. The kid was hooking me up and told me that I needed to remove whatever was in my shirt pockets. Ummmm, that would be my breast implants?! It cracked me up. I just told him that nothing else was "removeable". He turned a thousand shades of red.0 -
Gee whiz, that's funny! Also I am impressed with you and tonlee's choices of fun! Wow, you girls go! I think its fun to get on the nustep at pt for ten minutes! guess I have a lot to learn about fun! LOL! Much love
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Gee,
Wow! He kept holding on when it flipped?!? Is he a little guy? My little guy is 60 pounds so we took it easy with him...
The "worst" fall was behind the jet ski. It can fly, up to 60 mph...but we don't tube that fast....at about 30 mph the water it kicks up feels like needles going into the eyes....at 40, I skipped across the water like a piece of flint...lol.
I think there should be a bumper sticker that says, "You know you're a tuber if both elbows are missing skin." lol When we were at the dock, I could tell who spent time on the tube by the rub burns/scabs on the elbows!
What a blast.
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tonlee - there is a very good sunscreen called Scape. It was formulated for those who participate in the Ironman racing series - it smells good and isn't too chalky and it has great staying power in the water. It also does not sting your eyes if you are sweating. I just had my 20th skin cancer (and another biopsy done at the same time) removed so I have to be serious about sunscreen here in Florida.
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lago - I love your seatbelt speech too
Tonlee - WOW on all your activities...impressive! We used to spend every summer at the lake when I was growing up but I haven't so much as water-skiied in ages. I have gained so much weight that I probably couldn't get up now if I wanted to.
Speaking of water, I know we have touched on this before but y'all refresh my memory - how many of you were told not to swim, etc...in a public pool during chemo due to risk of infection? We are going to try to get another short trip in before school starts and I was thinking about one of the indoor waterpark type hotels...not that I would likely do much but watch the kids anyway but would like to have the option.
Rather boring 4th here. Burn ban is on, all the public fireworks displays are canceled and individual use is prohibited as well. So we are watching the fireworks on TV.
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Gee and Tonlee...great action! We did houseboat when the kids were little. So much fun. My husband ran a jet ski at almost fiull speed into the houseboat with my daughter and niece on the back. I'm thinking that may be the stress that started my BC, lol. We were just reminiscing about it at dinner tonight with the friends we boated with.
Tonlee, I am thinking if you can lay lat on a tube, then I should be blue to lay flat on a massage table tomorrow. Daughter and I are getting hot stone ones in the morning. I an sleep on my stomache, but I have to wad the pillow a little so I am not on them with full weight for comfort.
On the TM discussion, my onc doesn't do them much either. He feels the problem is if they a higher, then you have to start looking for stuff that might not be there. He said it might be a valuable test someday, but now, it gives information that they don't know what to do with.0 -
I used to water ski. We spent summers at my grandfathers lake cottage in Western lower Michigan. When I was 12 my Uncle brought up a brand new speed boat. Showed me how to drive and maintain it and gave me the keys. I was instantly the most popular girl on the lake. I remember once my friend was driving and when I jumped over the wake to ski to the side he thought it would be funny to start a fast turn which sent me zipping along at a 45 degree angel at about 50 mph. I wisely decided to do a controled 'fall' because there was no way I was strong enough to pull up and get out of that. Thankfully I was a tough, very fit 90# max. and just skipped along the water like a pebble. I think I had some 'water burns' from that one though. I can still remember what it felt like and it was 57 years ago.
The last time I was up on skis was about 15 years ago. I managed one simple ride behind the boat. It was not fun and kinda sad.
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I had my radiation therapy staging today. The gals are not going to win any awards for the 'artwork' on my torso. At least they didn't use tattoos. They also are starting my treatments on Monday. Last week when I saw the doctor he said they would start in about 3 weeks. I was looking for more of a break but at least I'll get finished sooner. Everyone was nice and I was not uncomfortable. If the treatments are similar to the staging I should be fine.
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Our favorite cliff...it was much higher than it looks here.....enough to really hurt if you landed wrong...the climb was rough....lol
Here is perspective...the man on the left is over 6 feet tall and is on the bottom ledge.
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Last one ....lol
Me and my most awesome cousin!
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