TRIPLE POSITIVE GROUP
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Blownaway, my breast center gives all women complaining of a lump a sonogram. It was interesting--after the normal mammo, my tech said "we're going to give you a quick sonogram, won't take more than a minute." Um, no it took quite some time. :-(
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Oh, and Blownaway, what does you complete blood count show? I was gasping for air with a LVEF of >60% but a red blood cell count of next to nothing. When I got a transfusion of packed red blood cells, I thought I was Wonder Woman (without hair--tee hee!)
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I had the opposite problem. My mammo showed a cluster of microcalcification that looked very suspicious. The ultrasound showed nothing. I had no clue anything was wrong and no palpable mass. Funny how things show up on one but not the other
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I definitely feel like the shift needs to lean more towards research and also early detection. I'm 27 and found the lump myself. When I called the advice nurse, she tried to tell me to wait it out and that it was probably just a cyst. I listened to my gut and had her schedule an appointment with my OB a few days later. Then when I saw her, she immediately sent me to the Breast Center that same day and I had a diagnostic ultrasound. I feel like with more women getting diagnosed at an earlier age, mammograms need to start a lot earlier than 40. If I hadn't listened to my gut, and waited, my situation may have been a lot worse since I was grade 3. One day, I didn't feel the lump, and the next it was like a marble.
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wpmoon - was your lump seen on mammogram? You are so young, breaks my heart that you are going through this - my daughter is only a year younger than you - I would think density would be an issue? I'm soglad you were able to expedite an appt and weren't stalled.
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special - I'm pretty sure it was. If I'm remembering correctly, in my case, I had the ultrasound of my breast done first and it was visible there, then a biopsy, and then a mammogram and another ultrasound of my breast and my armpit to check the lymph nodes. With how quickly they expedited things after the initial ultrasound, I'd have to guess that it was apparently visible on the mammogram, too. I had a feeling it was cancer, even though they didn't confirm it until the results of the biopsy came back.
According to the breast specialist, I have dense breast tissue, so that might play a role in the grade 3 part of it. I'm not really sure. I had the genetic testing done, and came back with no markers, so all of this is kind of a guessing game for me.
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Wpmoon,
I'm so glad you were proactive in looking after yourself, we are often our own best advocates. When I found a lump in my 39's 3 mo after a clean mammogram, my obgyn was certain it was nothing and told me not to worry. I called a breast cancer surgeon friend who also told me that it was highly unlikely it was anything given my age and good health, he felt the lump and tried to do a needle biopsy, but couldn't aspirate it. He scheduled a biopsy certain it would be nothing. It turned out to be TN Breast cancer, stage 1 but grade 3. Had I just taken the word of my gyn, and waited I probably wouldn't be here now.
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Just got this update from the FDA (I'm on an email list for NON cancer reasons). It is a change in the labeling for Perjetta
Perjeta (pertuzumab) Injection, for Intravenous Use
Detailed View: Safety Labeling Changes Approved By FDA Center for Drug Evaluation and Research (CDER)
May 2015
WARNINGS AND PRECAUTIONS
Embryo-Fetal Toxicity section edited
- If PERJETA is administered during pregnancy, or if the patient becomes pregnant while receiving this drug or within 7 months following the last dose of PERJETA in combination with trastuzumab, the patient should be apprised of the potential hazard to a fetus [see Use in Specific Populations (8.1)].
- If PERJETA is administered during pregnancy or if a patient becomes pregnant while receiving PERJETA or within 7 months following the last dose of PERJETA in combination with trastuzumab, immediately report exposure to the Genentech Adverse Event Line at 1-888-835-2555. Encourage women who may be exposed during pregnancy or within 7 months for PERJETA in combination with trastuzumab prior to conception, to enroll in the MotHER Pregnancy Registry by contacting 1-800-690-6720 [see Patient Counseling Information (17)].
USE IN SPECIFIC POPULATIONS
Females of Reproductive Potential
- Advise females of reproductive potential to use effective contraception while receiving PERJETA and for 7 months following the last dose of PERJETA in combination with trastuzumab.
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Suladog, you have no idea how jealous I am: you have your very own breast cancer surgeon friend???? I want one!
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Oh, yeah. My lump was palpable, but the only thing that showed up on my mammogram was the microcalcifications. So, they brought me to the ultrasound room, where even with my untrained eye, I could clearly see my dark star. With the spiculations, that is exactly what it looked like.
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Mommato3 - I posted this before but...My 1st echo just before chemo/herceptin began, my LVEF was 56. After 4 rounds of chemo then 3 more herceptin only in infusions, I was in pretty bad shape. Another echo was done and I was down to 35 and could hardly catch my breath just sitting and talking. Herceptin was permanently stopped and I was placed on 2 heart meds and my LVEF came up to mid 40's and I have felt well enough to restart exercising and bike riding until the last week or so and I am feeling breathless again along with occasional queasiness. Just wondering if anyone showed some improvement, then got worse again. My next echo is July 15, meanwhile I leave for vacation Tuesday and hoping there won't be any issues.
I know everyone with triple positive is grateful to have herceptin but where does that leave those of us who can't tolerate it.
Really worrisome...heart, breast, heart, breast, heart, breast...
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my BC was found on mammo, I had dense breasts, prior calcification, unable to feel anything. After biopsy 3 months later biopsy showed cancer cells. I was told not to worry, get thru holidays and finis healing from total shoulder replacement, same side. Surgery was performed jan and I wanted them both gone, gone gone. So as not to worry about reoccurance, well. Now we know that it can still return regardless. Enough info is still not enough until they can erraticate cancer cells ......forever, I do not see that happening in my life time, I am grateful for what I have, but ALL cancers have to be coming from what we eat, breathe, drink, rtf, so until we stop poison in the planet, or God intervenes, this will continue till they have plan B, plan C and other factors and ideas researched. PS. I had 2 tumours only detected on MRI prior to surgery. In same breast, go figure, the radiology dr found it right away, but since I decided to get rid of them anyway, it was a moot issue. But tell you daughters do not procrastinate.... Be well all!
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Tomboy
He's a great guy and My husband and I have known him since he started practicing. He's a few years older than we are and he really got me through the whole TN thing 25 yrs ago. He and I have very similar personalities and my husband always thinks it's funny because when we get together the two of us just can't stop talking, at very high speed!He was also helpful this time around and we had a lot of long talks about what to do as we value his opinion. He was very stoked about all the stuff that's been happening around Triple positive , herceptin etc.
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allyouneedislove,
I too would like to hear what holistic steps any of you are taking?? I take Vitamin D and just started Tumeric, eat only organic as well and really try to get all my fruits and veggies in! I just started meditating and want to get in to yoga....just haven't had the time to start!
Kathy
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Mine was found via annual screening mammogram at 5 years post uni in 2010. A 2nd primary which was painful and I thought was the complex cyst acting up after a round of Progesterone due to 50 days of dysfunctional uterine bleeding. I had also stopped Tamoxifen due to side effects..so a lot of what ifs going on, but the horse is out of the barn and we can't change the past. My first was found via MRI due to inverted nipple no show on Mam or US.
I had asked for a BMX but that wasn't the standard of care in 2010. It was partly for worry about re occurence but mostly for symmetry… got that now.
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Hello again, not on here too often as I can't seem to shake the nausea and headache from chemo. I am now 12 days post treatment #3 and still unable to eat much except canned peaches and occasionally plain Ramen noodles. Have compazine (puts me to sleep), zofran (works off and on), and a prescription acid reducer. None of them completely takes away nausea. Can hardly stand it sometimes!! My taste buds are all destroyed too, and I have a heavy metal taste all the time.
Anyone have any other suggestions?
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The bad taste is a horrible se. I couldn't even stand the taste of my tongue in my mouth. While nothing completely solved the problem for me, the special mints for dry mouth that contain xylitol would give me a little relief. Hope you feel better soon.
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ohio - there is an anti-nausea patch called Sancuso, ask your MO about it.
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Ohiotripleplus use plastic utensils. Try adding citrus to your food or water (lemon, lime, orange or even sour salt which is not salt but citric acid). I know ginger helps with nausea but not sure how it will taste to you. You can try buying the pickled ginger they serve with sushi.
and be sure to drink plenty of liquids without salt or caffeine. Lack of fluid could be a big reason why you have headaches. If you have been regurgitating a lot then you are probably dehydrated. Also ask your oncologist if you can try Exedrin for headaches.
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To add to what lago said regarding ginger - a lot of people like the Gin-Gin hard candies. I did not use them but a friend who was TN and had AC-T swore by them for nausea and helping with dry mouth. Here is a link:
http://www.amazon.com/The-Ginger-People-Gins-Candy/dp/B000EM8308
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Three cheers for ginger chews - I have been eating them since long before I had BC, I LOVE them! The Ginger People have a version available for sale at Trader Joe's that's my favorite - usually can find them right on the checkout aisle. I once bought a bulk box of 800 of the candies directly from the Ginger People, they're slightly different (harder, a bit smaller, different wrappers) than the TJs version. Cool thing is they're only 20 calories each and they taste awesome (to me at least!) I hope they do actually work for nausea - that along with medical cannabis and I should be set
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During my weekly Taxol/herceptin I used to bring a little tupperware thing of raw ginger slices to suck on, I learned that from my last chemo 25 yrs ago. It works great.
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I had a hard time with nausea and vomiting during chemo. Zofran gave me a headache, so did compazine. Phenergan worked somewhat. What worked best was cannabis.
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to neutralize the tongue, I would use the baking soda, salt, warm water rinse and just let it sit in my mouth for about 30-45 seconds. That would get that horrible taste and help the mouth sore the best. Just keep it in the mouth for as long as you can. Water with orange slice worked nicely for me to get more fluids in....
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Warm salt water or baking soda worked well for me too.
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My doctor didn't palpate any lump a month before a routine mammogram showed a false area of concern which brought me in for the ultrasound. Thank God for the ultrasound angel that found the real 1.1 cm tumor that lead to diagnosis.
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Special K, Iago, thank you for your bone drug replies:) A new twist, a visit yesterday with my MO here in Maine has prompted the suggestion of a 6 week break from AI and then switching to Tamox. I fractured my wrist in Jan, oh and I can't think my way out of a paper bag. My head feels like it's wrapped in cotton wool most of the time and if I have 1 glass of wine, it feels like Ive had 3...
Iago, I want to see Dr C when I get to Chicago, prob not until the Fall. Not sure I want to switch, even though these SE's are annoying ( and so hoooooot) it's the devil you know. Since the 1st 3 months were really tough, not sure I want o come clean only to have to go through it again... confusing:/
Anyone switch from AI to Tamox? SE's for better or worse:)?
Thanks,
Bridget in Maine
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Bridget Dr. C hates Tamoxifen. When I was ready to quit Anastrozole she recommended Exemestane. She said if I wouldn't do Exemestane then Tamoxafen was better than nothing. Are you getting treated for Osteoporosis. I am. I'll call you tonight after work when I Get home (after 8pm your time. I'm about to leave now.
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Thanks all for your hints!
Zofran does give me headaches and onc said excedrin was ok. Nausea was gone for a few days and I got some work time in. Then this morning nausea was back along with all day diarrhea and some dry heaves. Been taking lomotil but there's a limit on number of times per day and I'm almost there. Have eaten a half of a banana and a piece of toast . I also have IBS which I figure chemo is aggrevating.
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