TRIPLE POSITIVE GROUP
Comments
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Lago, at least your mind isn't 1000 miles away! LOL
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Thanks to Acetyl-L-Carnitine (memory booster).
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Lago is right....over 20 is considered high, less than 10 low, and 10-20 borderline. I just checked my report. Mine was 15.
My stage was 6/9, staging me at a 2. For the stage, three things are scored by my report. Each item (architectural, nuclear, and mitotic) can have a maximum of three points. so I only missed being a 3 by one point. The only low one I had was the mitotic. It was 1/3, nuclear 2/3 and architectural 3/3. At one time I knew what each one meant, but now that chemo brain has set in, I would have to go back and re-read it. I better up my acetyl l-carnitine!0 -
Tat should be grading not staging. My bad.
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Hello all - I was in Washington DC for vaccine #2 with no laptop - you all have been busy!
omaz - I have pill dysphagia and can't get the big calcium pills down so I have been using Caltrate gummies - love them! I have tried several types and I like them the best. Here is a link: http://www.caltrate.com/OurProducts/caltrate-gummybites I also take extra Vitamin D (also a gummy) I have a whole gummy collection - Vit B12, B Complex, multi, Co-Q10. I view them as dessert, lol! Calcium/D can only be absorbed in small amounts so it is good to space out comsumption throughout the day with food. I had a bone density scan the same day as my bad mammo/US. I had another after I was done with Herceptin and had been on Femara for about 6 months and had worsened at every measurement. I am faithful with the calcium, have been good with diet, and have been walking 4 miles a day at speed. My MO wanted me on Prolia and just had my second injection today. It is not a bisphosphanate, but it does have some of the same risks. I had a GI surgery in '95 and cannot tolerate any of the oral osteo meds. Also - I have a newly dx'ed friend who is having a lumpectomy on Mon. to be followed by rads. I need the "Omaz Method" for skin care - can you PM it to me?
fluff - yay on the good PET!
Arlene - yay on the deporting!
moon - hope you are hanging in!
ashla - sorry to hear about your concerns, hope it is nothing. If your ki67 (cell turnover) is not on the path report they may have relied on the mitotic rate score for that info.
kayb - if your ki67/mitotic rate is higher chemo has a better chance to work as it is more effective on faster dividing cells - like hair, eyelashes, nails, unfortunately. If your neo chemo was effective that may have been the case.
Hope everyone else is doing well!
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Thanks SpecialK - that was really helpful! I'll PM you the Omaz method - lol!0
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Okay...saw my bs this am. He ( and my mo agreed yesterday) said I definitely did the right thing coming in. They did a little test on what was left of the discharge and there was a little blood. He said he is not worried this soon after surgery rads and radiation. It's not an infection so it needs no treatment. Did the old feel test on both boobs and the all the lymph nodes.
I told him if he's a good boy I'll let him feel my biceps and triceps next time.
If this were two years out he would do a biopsy.0 -
ashla - So what do they think it is?0
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kayb did your path list a mib-1? That is what I had which basically the same thing (just a different test but same scale). Mine was listed as over 20%. No surprised Fluff was in the moderate range given she had a grade 2 tumor. Tumor grade seems to be directly related to this rate.0
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The PA said it likely just physiological. Molecular, cellular stuff going on ....more prevalent postsurgery and rads... All 3...mo...bs and his pa felt it was good to have the discharge tested for blood. There was no blood apparent looking at it. Today when I tried to express the discharge it actually stung inthe nipple.
We shall see.0 -
Ashla,
How frustrating. I was hoping this would get a solid resolution today. Dang it. Hang in there.
Fluff...WOOT WOOT. Clear PET.
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Hi all, has anyone heard of mouth/canker sores being a SE of herceptin? I had AC then Taxol with Herceptin and never got a single mouth sore. Now it seems to be a problem & im wondering if herceptin is the cause. I will ask MO next time I see her but im sure she'll look at me like im nuts & say she's never heard of such a thing. Maybe I am nuts by this point!
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Try the Biotene Mouthwash Shore...see if that helps. I am sorry : (
Ashla...big sigh of relief. Yay!!
Why am I always the weird one. I was Grade 2, but ki67 was super high, like 57 or something?! Ugh.0 -
Ton lee,
Does anything ever get resolved ...ever...with this friggin disease? Diabolical.....it's like a robber with guns in each hand pointed at you. So ya wanna live? Give me ........... And just in case you get too cocky and think about your eyelashes and all that fun stuff and you forget I'm the boss.....I'll be lurking around to remind you .0 -
I recently had a bone density done after 2 years - no significant change. My onc lied to the government here to get me 4 Zometa infusions - you have to have osteoporosis normally. I also take calcium with D3 in it and D3 by itself. Looks like the Zometa and calcium helped.
Ashla - I remember having really strange nipple pain a few months after rads - sharp stinging pain - it finally went away.
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Hi everyone! Hope you are all doing well. I continue to read all of the boards and find such a wealth of information and inspiration from you all...so thank you so much. I wish that I had more time to write more during the day...but, know that I am always following you on here and you are all always in my thoughts.
I do have a question...not sure if anyone will know the answer to this or not...I am half way through chemo...well all most...and I recently asked my MO about possibly getting pertuzamaub along with herceptin...because I had heard that the FDA approved it and that it was now available for early stage BC patients...and he did not really give me an answer about it. Is this possible? Would I get it now or after chemo? I am contacted by Genetech (hope I spelled that correctly) once a month to see how I am doing on herceptin and I asked the nurse the last time she called about this question that I had and I really did not get a direct answer from her either. Is this worth pursuing? I also ask about the metformin study and my MO said that they were asked if they would like to participate in the study and the group that i go to turned it down. I was very disappointed. I feel that he is very conservative in his methods...and I am a bit more of a risk taker. Is this all MO?
Sorry about my spelling....I am sure that I messed several words up:)
Any info would be so appreciated. Thank you.
Jennifer
PS. not all of my hair has fallen out on TCH. Is this normal? I still have about 10 % should I be concerned?
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Jennifer, I are metformin, but was booted out of the study when they realized my tumor was a smidge too small. It is free at my grocery store. I took all the info in to my pcp, and he had no trouble prescribing it.
On the pertuzumab, I am not much help. There is a lady on my chemo board that is getting it, but she is stage Iv. I know my oncs office has it. They were all excited.
Special K...you have opened up a whole new vitamin world for me. I now have calcium gummy vitamins, a gummy multi, and coq10. Those things are great!0 -
Jennifer,
You can ask about the Perjeta but I highly doubt you insurance company would approve you for it. Right now its given mainly to stage IV that have had no other chemo. Some of the stage IV women have been denied because they didnt fall into the FDA guidelines.
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My facedown MRI ranks among the worst of my experiences thus far. I almost squeezed that distress ball a few times, and that was BEFORE hot flashes. I'm definitely taking the Atavan next time.
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Hmmm. Thank you ladies for the info. It is a bit frustrating...I feel that I want to do more than just the standard care. My OC is super young and conservative with treatments. I thought he might be just the opposite due to his age:(
I will have to work on him some more. I think that I was even more disappointed when I found out the groupo go to has the option to do trials but turns so many down:/
They are a part of md anderson.
Fluff- what prescription strength did your dr give you?
My Mo said that he thought it was something like 2000mg per day for the trial.
And on this note...did most of your MO specialize in breast cancer? I know some do. Mine doesn't. Should this concern me?
Thank you again ladies.
Ps
Will check out gummy vitamins as soon as chemo is over. I am excited also!0 -
Hi Jennifer
Maybe your oncologist isn't up on the newest therapies. However there are a hundred factors that go into the recommended therapy approach for each patient, it isn't just what your diagnosis, stage and grade is. I always think it is good to get a second opinion, even though you are in the middle of chemo. I work at a cancer hospital where there are oncologists specially trained in breast oncology, I think it is worth at least a call to a cancer center.
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Jennifer 404 and Utah fighter....
I'm on my second MO...both in the same practice and although both are great mo's and appear to be giving the latest standards of care I am also considering finding a breast cancer specialist MO.0 -
Ashla,
This is something for me to think about. What are the benefits of switching to one that specializes in breast cancer? My MO knows about the latest treatments and trials...so I guess when I consider switching I wonder how much differently a specialist would think.
And how do you tell you MO that you want to move on to another in the same practice.
I am pretty (shy) scared of drs in general and do not know what to do in this situation. I guess this is one area I have to stand up a bit more for myself.
Utah -sent you a pm:)
Thank you again ladies!0 -
jennifer - I have read on various threads that many MO are reluctant to prescribe Metformin, but that people have been successful in getting their PCP to give it to them. My MO does treat all kinds of cancer but because My BS (all breast surgery, not a general surgeon) funnels his patients to my MO he has a preponderance of breast cancer patients. I am confident in his breast cancer specific approach - every time he has brought up anything new in my treatment he cites studies or stats to back it up.
fluff - Yay for gummies! I just had an appt. with my MO on Thurs. for a Prolia injection and he suggested that I add Glucosamine/Condroitin because of AI related aching - and you guessed it - I found a gummy!
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Happy Sunday everyone.
My onco in Vegas specialized in breast cancer and when I was moving back to Florida, I told her we had no one in this area who specialized in breast. She told me as long as you like the doctor, any oncologist can do what she does. My new one here is young, aggressive and great personality. Pretty much the protocol for our bc is pretty standard but I also think it is great to check around and 'interview' several.
My bs in Vegas did nothing but breast!
We all have to be our own advocates and keep up on things....I've learned so much here that I bring in the form of questions to my doctors. It has worked in my favor too.
Jennifer: I like to think doctors understand the delicate balance so don't worry about switching.
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Thank you ladies! It is such a sense of comfort coming here. I know I don't post much...until lately but, you all make me feel...well, less lonely:)
And a bit more...understood.0 -
SpecialK - Lovin the gummies here too - thanks!0
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Love the gummies also take the gummy vitamin d for extra d..there great
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Jennifer, I interviewed 4 oncologists with the same two page list of questions. One was breast cancer only, with a major medical center and pretty well known nationally. She had the same protocol as another oncologist that was closer with a smaller office, who treats all kinds. I decided to go with him, as his office was right next door to my PS, and my BS loved him. I think it was a good choice as I love the personal attention I get, and he teaches yoga.
Also, if you want to do something extra, there is a vaccine trial that specialk and I are in, but you don't start it until after your treatment ends, so you have some time. It would require travel on your part now. She goes to Washington d.c. And I go to Winston Salem north Carolina. It is a lot for six times initially but then only every 6 months. It is for high risk, early stage people, and pretty much just by being her2 positive qualifies you.
I'll look up the link, or you can search back through this thread and it will be there. It is AE-37 peptide, mixed with leukine, or just leukine. If you pm me your email address, I will send you the paperwork with all the info.
For metformin in the study, it is 1750 mg. I take 1000 twice a day. You have to start low and work up to it, or you will spend a lot of time in the bathroom.
Kayb, my calcium gummies are the target brand, with 500 mg for every two, I think. I don't have them here. They are my least favorite, but still pretty good.0 -
How many calories is a supplemental gummy? They sound good.
Ok....for those who are taking Juven, but don't want the sugar/calories. I went to Vitamin Shoppe and purchased the powder form of the ingredients. The sugar delivery (which is Juven/Muscle Armor) is important for absorption POST workout, but for muscle retention (like most of us here), not so much.
I've been taking it for about two weeks....and I've noticed that despite the flabbiness I feel (since I can't do upper body for at least another week!)...my muscles are not shrinking. Which is exactly what the muscle fibers should do when I don't work them. I have lost some tone, don't get me wrong. But I think the l-glutamine especially is keeping me from breaking down completely.
Also, I am doing lower body per usual and I can see more definition in my thighs. That's the result of one of two things.
1. My heart is improving (please please please)
2. The juven mix (minus sugar)
I'll know for certain which after my next MUGA...
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