TRIPLE POSITIVE GROUP
Comments
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SusanHG, I still have my port because I still get magnesium IVs about every 4-6 weeks. I waffled about removing it when I got my implants but the nurses recommended I keep it. Especially since I had bilateral. They were worried about trying to find veins. I went back and forth so many times. In the end i did keep it. I am 2 years from dx. I am also one who had to quit Herceptin half way. I had about 6 months of it. So i guess my port is my umbrella. You know, if I have it it won't rain.... LOL
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Hello Moonflwr,
Thank you for sharing. I'll know my treatment plan next week. With any luck, I'll be on TDM-1 (Kadcyla), a newly released (1 year ago) targeted therapy that is supposed to be very effective, much less toxic than the Taxanes and no hair loss. Fingers crossed I meet the criteria and insurance approves.
I hope you are doing well. Stay warm!
Susan
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Definitely have an evaluation for lymphadema. It's ideal to catch/treat asap. I had no problems for 17 years. Yup, no typo-17 years. Then, I had a DVT (blood clot) in my clavical area which compromised the lymphatic and boom! In spite of 24 hour wrapping for 2 weeks, massage therapy & PT, it never helped. Fortunately, it is a very minimal case unlike many women. It's only my upper arm from elbow to shoulder. Nevertheless, I wear a compression sleeve every day and EXTREMELY self-conscious about it.
I hope this helps.
Take care,
Susan
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Hello SusanHG123,
Thank you for the kind thoughts. Right back at you (as Ellen DeGeneres would say)
I'd love to hear about books you have found to be inspirational and any comedies. I am single and spend most of my time alone. I'm hoping whatever my new treatment plan has in store, it will be manageable and I can function at the same level I've been maintaining for some time. Sure wish I had a crystal ball! The unknown is very scary. Take care and be well,
Susan K
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susan does that compression sleeve help? Im also suppose to get fitted for one due to edma Monday!
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SusanK426 and goutlaw. I have LE in my left 10 node arm. I was officially diagnosed after my 4th chemo but I had a feeling I was getting/had it after my 1st tx. It's very minor. I too had some PT. Never had to do the wrapping but I do wear my sleeve every day. It does help. I'm lucky I don't have to wear the glove any more since my fingers/hands don't swell. My sleeve color isn't that far off from my skin. I usually wear some kind of bracelet. As long as wear at least a short sleeve most people don't even notice. Tank/sleeveless it's a bit more noticeable but I really don't care.
This is a photo from labor day
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LOL @Lago!
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great photo Iago!
Nicky
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Cute photo Lago and u have a sleeve on?
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Lago - You are super cute (and hilarious
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You look awesome Lago! And that sleeve really does blend well - I had to look for it!
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Not sure the best photo but it is fun.
Part of making the sleeve blend is just acting natural. There's a woman in my building, 30 year survivor that serious LE. Both her arm and hand are huge. I never really noticed it before until I told her of my diagnosis 3.5 years ago. She too has a sleeve/gauntlet that is similar to her skin tone.
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Whoa check out the latest innovation for cancer treatment from Cornell University. Seems pretty huge considering everyone's rightful fear is the possibility of metastasis. Could be a huge advance for all types and stages of cancer. There's a video in the link too.
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Wow lago thats a great pic! Your so beautiful& look healthy
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Ben50 is that for Stage4? When will this come out or it in trials?
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Ben, interesting news. Could you see us all going for our bi-annual infusion of TRAIL? I have a friend who worked within a large pharma company doing in vivo liposomal trials, and those little puppies can last in our circulation for a long time, depending on their size.
Gout, it looks like they are still doing animal trials, so it will probably not be in human trials too soon.
Lago, you are super cute, and you are right. I had no idea you had a sleeve on!
Susan K, I'm single too and live far from my family in Philadelphia, so I essentially traveled this road alone. It isn't that tough if you don't let it be. You need to allow yourself to depend on friends because they do want to help, and your caregivers will be like little angels! Feel free to vent here or PM me if you just want someone to listen ;-) Oh, and I work for the company that makes Herceptin, Perjeta and Kadcyla, so I'm interested to hear how you do with these new miracle drugs!
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Thanks goutlaw. I always look good in 72 dpi
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Does anyone here take metformin or zometa ...someone said they take them for prevention of recurrences?
How do u get into trials?
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Gout, you should ask your MO if he/she is aware of a trial. Or, you can look on clinicaltrials.gov. Put in the search terms metformin and breast cancer or zometa and breast cancer and see what comes up. Even if the principal investigator is listed at a far away site, there might be a doctor enrolling near you.
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Jane-you work for the drug company? I have talked (begged) to several people to let me take half doses, I will sign anything-legal illegal-just let me have the drug. A case manager has called several times-to make sure I remain above ground and breathing am sure. Have been told to expect the FDA call. One person I talked to-very nice young-think PharmD-said Mam-you will NEVER have our drug again. Now may I please have the contact for your oncologist. So cute. Think my records went that way in the fall. Am sure hoping for a new drug that will leave my heart alone.
SusanK. Books. Remember I have a warped mind (am medical-we all are a tad warped) and now have chemo brain. So. The Hunger Games. Books for Adolsecent Girls-and their moms. Even if you have seen the movies. Read the books. Am reading another adolsecent series now-Divergent. Font is larger-nice for old chemo eyes. Anything by James Patterson. Anything by Jodi Picoult. The Fifty Shades of Grey series. I am old, Not Dead. Orange is the New Black. Then watch it on Netflix. For knock your socks off pee in your pants humor any of the Chelsea Handler books. Pee before you start reading. Zoobiquity. A book for nerds. The Circle. The Whole Soy Story. For those, like me, who believe soy has major impact on where I am today. Gone Girl and the other 2 books written by Gillian Flynn. The Age of Miracles. On Fertile Ground-A Natural History of Human Reproduction-also for nerds.Anything by Bill Maher. I used to read when I did my hair before work. Had LOTS of long thick hair. Could read the paper and about a book a week. With blow drying and a few hot curlers. Was a major ordeal. Now. Rub a towel. Slap in some mousse. Rub the towel again. Go. My hair is growing. But I do not think I will ever spend that amount of time of hair again.
Ok. There is a list of a few on kindle that are marked read. A few in the already read stack. And a few I can remember. I have chemo brain. If I remember more. I will come forth. Oh oh oh. Inspirational. The Mitford Series by Jan Karon. Amazing and wonderful.
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A question about lab results.
My oncologist in Arizona posts results online and I suppose that's a bit of a curse for an OCD person like me.
I just checked today and my WBC this past Monday was down to 3.0 and for some reason he's had an LDH test thrown in there for the last two panels and on this last one it's slightly elevated (normal is up to 190 and I think mine was 205). My monocytes are high and some other things are low.
Sometimes I wonder if the chemo didn't reactivate the Epstein-Barr virus (I had mono when I was a senior in high school).
Has anyone else had an increase in LDH and a decrease in WBC?
On the other hand, my last Herceptin was December 5 and I had the exchange surgery on December 10 and the last blood test was January 6 so who knows.
Gack. It's always a roller coaster I guess.
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LeeA, my WBC was still low at 3.5 on my last lab result, and my Monocytes were 10.4, higher than they have ever been. I really do think it just takes a while for our bodies to get back to normal after a year of chemo and herceptin. If you are concerned, definitely call your MO's office and talk to them about it.
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I agree it does take some time. I know my white counts were high 7 months PFC but my PCP said that was due to treatment. Not sure if he meant chemo or Herceptin.
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Hello ladies, I have been lurking on this thread for months. Long way behind most of you. Last dose of A/C this Thursday and should find out when I start the 12 T/H. Is triple+ more common with IDC? I am not seeing ILC in most of your DX. I have mixed, but the majority was ILC....
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Susan, what did your LVEF go down to? I had a Herceptin vacation for 6 weeks after getting down to 50%, but once I bounced back up to 55%, they put me back on it. I started treatment with an ejection fraction of >70%, and I think they just want to see if you rebound. Did yours not go back up?
I would suspect the newer drugs could still have the cardiac side effects. Perjeta is like super Herceptin. It targets the Her2 receptors and prevents them from getting together in pairs (dimerizing). The paired receptors are more powerful than the single ones at turning on the cell cycles, so if you have trouble with Herceptin, I'd suspect Perjeta would also be problematic.
The Kadcyla is herceptin with a chemo agent attached. So the monoclonal antibody recognizes the Her 2 receptor (just like Herceptin) and when it gets internalized by the cancer cell, the chemo goes to work. (it is targeted chemo).
But since they are both based on the same principle as Herceptin, you might not be a candidate...can you propose tp your MO that you would do cardiac rehab while taking Herceptin? Exercise builds strong, happy left ventricles.
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Hi Robin
I am ILC but HER-
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Bren58, thanks for your input! My monocytes are also higher than they've ever been and my WBC is lower than it's been for months. I think the LDH component has me more nervous than anything. I have an appointment in early February. I'm trying to decide if I can hold of on asking questions until then. Thanks again!
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Lee ~ If it were me, I would just call {and have!} about the lab numbers. No sense in worrying over something until they tell you to, and it looks like you are already worrying about it!
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Iago, thanks for the link! I knew in general it was less common, but over the past few months have generally seen at least a few others with ILC. Was just curious as to the Her2+ piece of it, as this seems to be the only thread I am on that truly shows an IDC vs. ILC gap.
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