TRIPLE POSITIVE GROUP
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TonLee, elevated calcium, phosphate, and alkaline phosphate can be a sign of that. Right now I have elevated phosphate, not sure about the others. They are telling me to not exercise for 24 hours prior to my next blood test (we seem to be checking my phosphates every week now). MO assures me that he doesn't think it's bone mets, but clearly he's not quite sure. It's terrifying. I did notice that I eat a lot of foods very high in phosphates and calcium, and I believe you do too. I'm just off of chemo so I'm telling myself that the chemo, and recovering from it, has something to do with it. I will say that there are probably all kinds of other things it could be other than what you fear. Regardless I hope and pray that it is one of those many other things. Please keep us posted!!!
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Cypher, Tonlee, i am praying for you both.
What the hell is wrong with people? Twenty six killed, 18 kids? Why can't they just take themselves out, why take innocents. I will never repeat his name. No getting notice from me. Doesn't deserve any mention. Praying for all the families.
To all, much love.0 -
Tonilee: just a non-BC consideration....both my mom and my sister (both very active and healthy) had similar symptoms....my sister in her 30's.......and drs couldn't pinpoint the problem until the did an ultrasound and found the gallbladder inflamed. My mom suffered on and off for two years while her dr attributed her back pain to a pulled or stained muscle and the nausea to the pain. She ended up in ER just before Thanksgiving and about to be sent home when we insisted on the ultrasound. The surgeon who operated on her the next day said she didn't have a gallbladder, she had a "bag of rocks!"
OMG, my prayers for all those families and friends in CT! Soooooo sad!0 -
Ugh...how can someone kill babies?
Makes me heart sick.
Evil. Undiluted evil.
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tonlee i know how our minds go there...we all do it, so i am not going to say "dont worry" cause i know that is impossible when you feel this way and until you rule out the bad stuff. Praying its nothing more than run of the mill aches and pains. I HATE that we have to live this way
I start PT monday, i want them to help me with my posture because it is obviously off from the surgery. Lower back is killing me...of course you know what im thinking could be the other possible reason
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Some people are just sick in the brain. But as a nation, I believe we should not post the shooters name or even give them any attention. Just say the shooter, John Doe, etc. and leave it at that.
3rd round of taxol and herceptin today. I'm feeling ok. I didn't throw up at all last week! (how bizarre that I now feel like that is a thing to celebrate...)
Ton Lee, make sure they take a gander at your gallbladder. The mediastinum is oddly enervated so things can hurt in an odd space, far away from the problem (ie--left arm pain with a heart attack...) Keep us posted and try to enjoy your weekend.
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Agreed with all re the horrible shooter/shootings.
I'm glad to hear that TonLee's symptoms could well be some gall bladder thingie.
Pbrain, I'm glad you are tolerating this chemo so much better.
rozem, from all the strife you've been through with your mx, it wouldn't surprise me at all if it triggered lower back pain (i.e. from muscles etc.).
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Pbrain - you might need to add a little salt, maybe some lemon juice, and a tad of sugar so that your electolytes are ok, sometimes your more thirsty when they are off, and drinking doesn't seem to help. Hope your doing better.
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and these pages really do multiply faster than rabbits - have a great weekend.
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kayb, I'm glad you're officially two years out. Or probably longer because you were NED as of your surgery date, looks like. Ah, I looke forward to this being a memory rather than a daily thing.
I haven't watched the tv reports--it's upsetting enough to contemplate without having that make it more ... tangible. It's a horrible, horrible thing.
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Congrats KayB on 2 years! Good feeling. Great words of wisdom you have provided too.
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kayb - my last chemo was dec 16th last year...i still had symptoms for xmas. What a crappy xmas. Congrats on 2yrs. I agree that being her2 and being in treatment so long really does impact us. I hated going back to the chemo room for H infusions, reminded me of those chemo days.
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Kayb...congrats on the two years. January 22 will be two years when they biopsied and removed my tumor with clear but close margins, so that it what I count as my official day. My first biopsy was December 3, 2010. He only found the LCIS tissue and missed the tumor totally. I then switched doctors to a breast surgeon. It took two more biopsies, one via ultrasound and the January surgical one. BMX was February 28, but all the margins were still clear and no additional evidence was found in the surrounding area.
I have been emotional this whole month, and like everyone says, every ache and pain gives you pause.
Rozem, I always had good posture, but with the surgery and the expanders I feel I became very round shouldered. The implants helped, but the area that affects me the most is under my right scapula, and then the area in between my shoulders and into my neck always feels strained. I get a massage whenever possible and my husband will massage it in the evenings. Helps a lot.0 -
TonLee, keeping you in my thoughts and prayers... (and everyone else as well)
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I don't have the heart to say much more tonight - plus, I have an IV stuck in my hand (five attempts last night and no go - but one successful stab at the doctor's office today thanks to an ICU nurse) so typing isn't that easy.
What a sad, sad day/night it is.
We went out to dinner tonight and as we left the restaurant I noticed two fresh little faces seated nearby - they looked to be about kindergarten age and I was overwhelmed with grief all over again.
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Pbrain - not throwing up IS something to celebrate, especially with everything you have been through.
kayb - So wonderful that you are 2 years out.
rozem - A year ago that you finished! WOW
You ladies are so helpful and encouraging to all of us just starting this fight!
LeeA - I am so sorry that your are still dealing with all the difficulties with needle sticks. No fun at all! I hope you can put this part behind you soon!
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To all who just posted, much love. More love, everywhere is what is needed.
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Thanks Bren, I was so proud of my lack of puking that I told everyone I saw in the chemo building yesterday. Har! I'm a doofus.
Lee, I can't remember, but have you considered having a port placed? I have no veins to speak of--I sometimes wonder how the blood gets through my body. I had a phlebotomist storm out of the room after sticking me 12 times and not getting anything, so I love my port :-)
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pbrain - yay for no puking! Yes, celebrate whenever and whatever you can!
LeeA - sorry for all the sticks - hate that for you.
tonlee - so sorry that you are worried - please know we are all thinking of you and sending positivity your way. Glad you made the appointment. Your pain should warrant a scan IMO.
kayb - yay for 2 years out!
cypher - it actually took about 6 months post-chemo for all of my labs to normalize.
Had my fat grafting surgery yesterday - easy peasy. Really not much pain, less than I thought. They used Propofol so no issues with anesthetic. PS said I would be "very happy" with how much he lipoed off - apparently I have more fat than it looks like, lol. My divots above the implants are gone so I am hopeful that even with a little reabsorption it will still look good. All in all, happy, but that may be due to the Vicodin too!
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SpecialKK, did they check you for phosphorus? That's not something they always check for. MO doesn't want to scan me unless we really have to b/c of the radioactivity and I'm inclined to agree. i've been told to lay off exercising 24 hours before my next blood test, since muscle building can cause elevated levels of phosphorus. I was working on that PFC and pre rads, but now that I've started that I don't know much muscle I'll be building anyway.I'm not feeling fatigued, but I'm not feeling high energy either.
LeeA, YES, a PORT! Did you have herceptin #1 on wed.?
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cypher - I don't think they would have specifically checked the phosphorus level unless my calcium was high, which is was not. I had periodic complete metabolic panels which looked at phosphatase. Have they looked at your thyroid function, your ejection fraction, and are you being treated with any bone building drugs? Any of those things might affect it.
Dx 9/27/2010, DCIS, Grade 3, ER+/PR+, HER2+Dx 9/27/2010, IDC, 2cm, Stage IIb, Grade 3, 2/14 nodes, ER+/PR+, HER2+Surgery 11/01/2010 Mastectomy (Both); Reconstruction: Tissue expander placement (Both)Surgery 12/06/2010 Lymph Node Removal: Axillary Lymph Node Dissection (Right)Surgery 12/21/2010 Reconstruction (Left)Surgery 01/07/2011 Reconstruction (Left)Surgery 01/21/2011 Reconstruction (Left)Chemotherapy 02/17/2011 carboplatin, TaxotereTargeted Therapy 02/17/2011 HerceptinSurgery 07/20/2011 Reconstruction: Tissue expander placement (Left)Hormonal Therapy 08/01/2011 FemaraSurgery 02/24/2012 Reconstruction: Breast implants (permanent) (Both)Hormonal Therapy 06/20/2012 Arimidex
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I don't think I've seen this posted here yet - sharing some good news:
Trastuzumab Survival Benefit Still Significant 10 Years Later
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Pbrain - I'm so glad you are tolertaing the new tx so much better.
LeeA - a port sounds like a plan for you - you've still got lots of treatments to go - it will make it a LOT easier.
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Lee, after my second treatment I decided to get a port! I had a similar experience and it is so unpleasant! Black and blue all over my hand and arm. The port is so easy. If you are going to continue with Herceptin I think it is really worth it- without it would amount to a year of poking. I figured I had so many other things to deal with that was one thing out of the way. SE alone are enough to deal with.
I asked before but didn't get a response - has anyone ever heard of IP-6? Vitamin.0 -
Hi everyone -
My MO (Relda's MO as well) is setting up a consult with a thoracic surgeon. My left side used to be my "good" side for blood draws. Since that was the cancer side - it can no longer be used.
I have three more Vancomycin infusions/doses which = an 11 day course. The breast surgeon said the culture came back negative for MRSA. Actually, they said "the culture came back negative" so I don't know exactly what they were testing for but it was definitely negative for MRSA.
The PS said the Alloderm didn't seem like it had adhered (?) correctly when he reopened everything (right side) last Friday. I got the impression he removed it completely (right side). I don't really understand Alloderm so I may not be wording that correctly.
Hopefully, the IV in my hand right now will stand up to these three last doses - then I'm to start Clindamycin (oral) and am now changing the dressing (right side only) three times per day using antibacterial ointment (prescription). I still have the right drain but that will hopefully come out Thursday.
The idea of all these antibiotics prior to chemo makes me kind of nervous but fortunately, a probiotic I purchased when my husband was sick back in 2007 was on sale 2 for 1 (I was shocked - it's typically $49 a bottle) so I'm taking that right now. In case anyone is interested in this particular probiotic it's called Healthy Trinity by Natren. Back in 2007 it had great online reviews but I see a few people have given it just one star on Amazon since then. One thing I noticed when I took it back in 2007 was that my skin really cleared up.
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cypher, yes, I had the first dose of Herceptin this past Wednesday. I didn't have any problems with it. 1.5 hour infusion. I was really tired when I got home and the next morning I had a slightly elevated temperature (99.2) and my blood pressure was slightly elevated (also the next a.m.) but my blood pressure is all over the place anyway. I had some very slight achiness in the area right above my knees and a bit of a runny nose but that was it. I have no idea if any of this was related to the Herceptin but the slight thigh achiness was gone by the following morning (after the infusion).
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SpecialK, they haven’t checked my thyroid and I’m not on bone building stuff. They are checking my ejection fraction—next muga is early jan. I’m on a clinical trial and I think they checked the phosphorus because of that.
Dance, encouraging study, but I can’t read much of it – is there a way to see the rest of it or can you cut and paste? Also I see it studied anthracyclines, I wonder if the article says anything about taxanes? It’s a little hard for me to get too excited about a 10 year survival given that I’m in my 40s. I know they haven’t had herceptin all that long so that’s all they can say.
LeeA, I have no idea what MRSA is? I’ve been taking probiotics since june and I do believe that they really helped me deal with GI issues during chemo. But again – why no port?
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cypher, here is the article:
Trastuzumab Survival Benefit Still Significant 10 Years Later
IMNG Medical Media. 2012 Dec 12, MG Sullivan
SAN ANTONIO (IMNG) - Women who received paclitaxel and trastuzumab after anthracycline chemotherapy for HER2-positive breast cancer were almost 40% less likely to die by 10 years than were those given only paclitaxel in a pair of landmark clinical trials.
"This means that 80% of these patients - most of whom had node-positive disease - were alive at 10 years after their diagnosis of breast cancer." said Dr. Edward H. Romond, reporting long-term findings at the annual San Antonio Breast Cancer Symposium.
The regimen also reduced the risk of a 10-year disease-free survival event by 40% in the definitive survival analysis of the two pivotal trastuzumab (Herceptin) studies - the National Surgical Adjuvant Breast and Bowel Project (NSABP) B-31 protocol and the North Central Cancer Treatment Group (NCCTG) N9831 trial.
Both studies compared the paclitaxel/trastuzumab combination with paclitaxel alone in women with invasive HER2-positive breast cancers. All patients had undergone a lumpectomy or mastectomy with pathologically clear margins, and had axillary nodes that were initially pathologically involved.
Outcomes of both trials have been separately reported. However, because of their similar structure, treatment regimens, and patient populations, the Food and Drug Administration agreed to combine them to allow for a definite survival analysis, said Dr. Romond of the University of Kentucky, Lexington.
The combined analysis comprised 4,046 patients, 2,028 of whom took the paclitaxel/trastuzumab combination and 2,018 of whom took paclitaxel alone. The median follow-up in the combined analysis was 8.4 years, with data available for up to 10 years.
About half of the patients were younger than 50 years. Most had node positive disease; slightly more than half had hormone receptor positive-breast cancer. The tumor was T1 in 40%, T2 in 50%, and T3 in 10%.
By the end of the follow-up period, 680 disease-free survival events had occurred in the paclitaxel-only group vs. 473 in the combination therapy group (hazard ratio, 0.60; P less than .0001).
The disease-free survival curve began to separate shortly before year 2. The difference became significant around year 5; by year 6, 81% of the combination group and 69% of the single-therapy group were without an event. By year 10, the rates of disease-free survival were 74% and 62% - an absolute difference of 11.5%.
Most events in each group were distant recurrences (227 with the combination and 391 with single-therapy). Local or regional recurrence was seen in 84 and 124, respectively, and contralateral breast disease in 46 and 40. About 4% of women in each group developed a second primary cancer, and about 2% in each group died without a recurrence of their breast cancer.
There were 286 deaths in the combination group and 418 in the paclitaxel-only group. Women in the combination-therapy group were 37% less likely to die than were those who took paclitaxel alone - a significant difference (HR, 0.63; P less than .0001)
The survival curves began to diverge around year 2 and continued to separate throughout the follow-up period. By year 10, 84% of those in the combination group and 75% of those in the single therapy group were still alive, an absolute difference of 9%.
The survival advantage was apparent whether women had hormone receptor positive or negative disease, Dr. Romond noted (HR, 0.61 and 0.64, respectively).
Most deaths in both groups were due to the original breast cancer (209 in the combination group and 340 in the paclitaxel-only group). Other causes of death were a second primary cancer (25 and 41, respectively), or other or unknown causes.
The combination treatment was especially helpful for women with high risk factors, conferring a significant survival advantage over paclitaxel alone to women aged 60 years and older (14%), women with 10 more positive nodes (16%), and women with tumors larger than 5 cm (12%).
Dr. Romond had no financial disclosures.
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Thanks. I'm confused that at the beginning it says paclitaxels + herceptin after anthracyclines, and then later it doesn't talk about anthracyclines. This is basically talkign about the benefit of adding herceptin to the mix, right? Also, it looks like we're still at only a 74% survival rate at 10 years -- but it looks like the study mixed stages so that would include stages 1-3? 4?
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Cypher,
The study used node positive women...so yes, that would likely mean 1B,2, and 3. Especially since it included data on women with 10+ positive nodes.
I don't see any new information here. This is pretty much the stats I had two years ago when I started Herceptin.
Maybe it's the length of follow-up? I dunno. But as far as I can tell, no real news here.
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cypher - MRSA is methicillin-resistantStaphylococcus aureus, two types - community acquired and hospital acquired. It is a mean infection that can kill you if not treated in time. On the phosphorous I also was reading about an anemia connection, so I guess that could be a possibility too.
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Lee, I highly recommend a port. Mine was removed after I finished my treatments.
Then I started a trial where they have to draw six units of blood every six weeks. They had a hard time getting one vial, much less six. The record for stabs was five, and they were freaked out at that. I was wishing I had left my port in, and so were they.0
