TRIPLE POSITIVE GROUP
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fluff, not sure what mine is but the bone scan didn't show anything and it felt like it was in that area. Actually it has receded a bit, which supports the pulled muscle theory.
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I wish we could all magically meet for wine/beer/scotch/coke---and just visit. Get the chemo/cancer/pain crap out of the way first. Then just talk. Like regular women. Share stories about our lives, our children, our loves, our favorite books, just regular normal stuff. As a nurse since the dead sea was just sick-I am still learning about this disease from the other side of the bed. I just did not realize how it takes over a life. My parents both died of cancer-mom was 6 months from day of diagnosis to day of death; dad 4 years later and 5 months. They fell into the mid-west farmers group-weed killer and people killer. They were sick so fast they didn't have energy to share how the cancer impacted their daily lives. My brother just had surgery for kidney cancer-saved most of his kidney-no chemo or rads. A good kind to have-. But he is an identical twin-my other brother is on high alert. Cancer just sucks big green weenies.
I share the back/bone pains. All scans in 2013 were perfect. I am going that all is normal now. Now going to think mets. Just going with pain related to estrogen suckers and head on.
Am envious of the gardners. My thumb is black and the dirt in NM is brown dust. I can grow nothing. I miss the black soil of the midwest.
On a very happy note-my new granddaughter-my first of the grands-is the most beautiful human ever expelled from another most beautiful human-my third off-spring. I will meet Cora in person the 23rd. Her parents are delighted and delightful in their amazement of Cora.
I am fearful my Effexor isn't working for the hot flashes-no actually hot waves anymore. About a week ago started waking up drenched. Now having the soaking sweats during the day. I am NOT a Southern belle who "glistens". I look like I have attempted to wrestle pigs. Not attractive.
Someone asked about working with adriamycin-AKA The Red Devil. I did. Also, i may have already responded to this. Chemo brain. Had chemo Wednesday mornings. Went to campus after. Sometimes napped. But, I had the BIG advantage of working in a health science center. Lots of labs with beds for naps. Everyone who works with me has initials after their name so I was able to keep my port accessed and run fluids @ work, could take all meds @ work and have someone around, and there was always someone there to make sure I wasn't dead when I napped. I was also used for clinical experiences for students. Yep. But I had all 4 of my children in the presence of medical and nursing students (some of whom were my students), paramedic students, and any other student who needed a delivery. And with my Mega Mass-I was again a clinical experience. The docs-would run a steady stream of students through to feel of the cement hard but still growing foreign object.
My gosh. I have gone on and on (or as I refered to it when I was psych clinical-verbally vomited) all over the board.
Always love your shoulders to lean on.
Much love
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"I look like I have attempted to wrestle pigs" Ha Ha now that mad me laugh. I'm the same way when I sweat.
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Muga question .. How long does this test take - can I drive myself there and back - any prep? Thanks
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Yes you can drive. The inject you with stuff first then you have to wait an hour. Test takes about 1/2 hour. I found this department in my treatment center was always late.
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Thanks Lago - I have a preop appt at 1 pm at another place on the same day as the MUGA - which is at 1045 - they told me no problem on getting from point A to B on time - I am thinking ummm - ok. Will be a close call lol it is about a 20 minute drive between places
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Linda just have your Muga people call if you run late. They're used to that.
Susan! You can take the girl out of the Midwest but you sure can't take the Midwest out of the girl! LOL wrestling pigs, indeed! LOL. I too have had students and nurses get to practice on me. And I'm not a nurse but have been in the hospital and had 9 sx over my life. I let them try but watch them every moment. I even gave one a chance at opening my port and changing the dressjng. Took over an hour but she did fine. Then with my lovely ringworm looking granuloma annularis the MO had his NP and nurses come to look as none had ever seen them. LOL
Much love to all.
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Linda, MUGAs are quick once you absorb the tracer. Unlike Lago, they only had me wait about 20 minutes after injection when I had one. The tracer binds to the red blood cell so they can visualize the blood pumping through the heart. It's a really simple procedure with no pain or poking/prodding. If you have a port, put your Emla cream on it because they will likely access it to get the tracer injected.
Susan I adore you verbal vomitting and look forward to your posts! And congrats on the new wee one! I think Cora is a fantastic name, very old fashioned and fun. I wish you could take paxil (contraindicated with tamoxifen) because I do and have for about 5 years. I don't think I've ever had a hot flash, just a warm flush here and there, and some night sweats while recovering from my one and only TCH treatment. I worship Paxil. It is my very best friend ;-)
Fluff, I'm not doing the Komen walk, but if I were, I'd love to meet you!!
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Oh wait Susan, you're on femara now. Talk to your doc about moving to Paxil. There is info on BC.org about how it helps some women with their hot flashes. I'm definitely one of those. The only way I knew I was going through menopause 3 years ago was that my period went away. Other than that, no symptoms.
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thanks Pbrain - I don't have the port yet - that is what the preop appt is for after the muga lol. Who do I ask to write the prescription for EMLA cream - MO?
Btw - I went wig shopping this weekend - looked for a Pbrain hat and/or a blue streaked wig - no luck
Here is a pic of me and hubby with new wig -(longer hair pic) and me pre BS
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Linda ask your onc for the emla cream. 1/2 the time I forgot to use it. Some of the chemo nurses are amazing. My chemo nurse was one of them. Never felt a thing even without the emla. BTW I think you and hubby look better now. Much younger since you both lost some lbs.
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Just saw my gastroenterologist today. I really like him. He is an excellent MD that explains things well. His gut thinks I don't have celiac disease but as an MD he recommends I do the endoscopy. He said there was maybe a 15% chance. I did have an endoscopy back in 2009 and there was no issue then. He did say chemo might have set things off. I'm going to wait. If I meet my deductible before the end of the year then I will schedule it.
Funny but I told him I didn't care for the Endocrinologist at the other medical center. He (my gastro) said they are not touchy-feely there. I said neither is my oncologist here (he agreed and laughed). That wasn't the problem. The Endo just kept telling me what standard care was and wasn't really offering guidance on what med to take for my bones. He agreed with me and stated I could just google if all I wanted was standard care. I said exactly. I could go to a NP rather than a doctor if all I need was a prescription.
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Lago - with being diabetic - I ended up needing an endo - I went through 3 of them before I could find one that I meshed with. I wanted to have a go with trying to control my diabetes without meds and the first two told me if I wanted to do that then they would not treat me - the third one was younger - and said - I will give you six months - if you get you A1C under 6 - then we will do it your way - in six month I was 5.2 A1c - which is a non-diabetic number - I really love her but with the steriods that I will get with the chemo she is certain I will end up on meds ugh...
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Linda I'm seeing a rheumatologist at my current medical center. Saw her last Monday. I liked her. This is for my osteoperosis.
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Lago - I meant to tell you, my gastro has said I'm not Celiac (after biopsies taken at endoscopy), but that I have Irritable Bowel Syndrome. I am now almost fully on the low FODMAP diet, but cutting lactose out has made a huge difference already. The pain I've been having for almost 10 months disappeared at the same time as the lactose. It's been amazing.
Following the low FODMAP is challenging, but it's starting to make a difference, so it's good.
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Ahh okay Lago - I just think it is so important to have a doctor that you can communicate with and doesn't treat you like a statistic and only offers you a by the book treatment. Hope your rheumatologist provides you with the help you need.
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Trisha-Anne I do have IBS. Have know this since 2008. It's very well managed. I know my trigger foods although I still get the bloat from eating but only eating way too much or certain foods will cause cramping, discomfort and constipation. Animal fats in meat, chicken and high fat cheese (think cheddar). I can eat these things in small amounts. Of course eating a lot in one sitting is not good either.
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Im awake& alive lolHad hystectomy only lil tummy discomfort& cath in- I think Im going home tommorrow- Another surgery done, so now just need to do right breast& reconstruction!!! Im getting there& now he can switch me to an AL med
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Susan-I had a great nephew born today. Eleven pounds, fifteen ounces and she did it naturally. Sheesh. A much better person than me. They named him Walter after a grandfather. I like that new moms are reusing the older names. He is HUGE! My son wS ten pounds and he makes him look like a dwarf, lol
Regarding EMLA cream-I loved it and used it religiously. Used it in the area where he injected my fills also. That hurt like crazy. EMLA helped some. I had some left over and slathered it on before the stitches in my toe/foot were removed a couple months ago. I was in the waiting room so long though it wore off. That hurt too, lol. It's the little things that cause me to be a wimp.
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goutlaw! I am happy you are through another sx. Glad your feeling pretty good. Take care
Fluff Congrats! That's a big baby. My biggest was 10 lb 4 oz. . Walter wanted to be noticed! No newborn outfits for him.... LOL
Susan I bet you can't wait to see little Cora.
Blessings to the little ones.
Much love.
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Linda I think the lag time for me was more like what pbrain had, in terms of the mugga. Also, I am a total wimp about needles and it seems to me the muga needle was a bit bigger than the one they use to draw blood (which I am also a weenie about). I have some lidocaine and I spread it on beforehand if I remember. The injection is the only part that causes any discomfort.
Congrats Susan and Fluff on the new relatives!
Lago, somehow I don't see you wanting a touchy feely doctor.... Glad you are liking this guy.
What is FODMAP?
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What do you ladies think about this?
"April 07, 2014 09:00 AM Eastern Daylight Time
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“We envision a world where patient experience drives the way diseases are measured and medical advances are made. Genentech’s leadership and commitment to this mission brings us closer to having patients at the true center of healthcare,” said PatientsLikeMe Co-founder and Chairman Jamie Heywood. “With Genentech we can now embark on a journey to bring together many stakeholders across healthcare and collaborate with patients in a new way.”
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The five-year agreement provides Genentech the opportunity to utilize PatientsLikeMe’s Global Network Access, a new service for pharmaceutical companies that delivers a range of data, research and tools. The service includes:
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goutlaw Yay! Happy healing for you. Sounds like you are doing great... Are you still high on meds?
Fluff 11lbs. That isn't a baby... That's a toddler! Wow. Congratulations.
cypher What do you mean you can't see me wanting a "touchy feeling MD?" You think I'm a cold hearted bitch? Ha Ha. Only kidding. Yeah I grew up outside of Boston. Classic New Englander... Don't hug or even touch me unless your blood, or married into the family. Granted I got much better. I went to art school (many times.) Arty people are all touchy feely.
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Hi,
I have just received a diagnosis from a biopsy. It states high-grade invasive ductal carcinoma. Estrogen receptors negative, Progesterone receptors weakly positive in 20% cells. HER-2 positive 3+, proliferation marker ki-67 in 50% cells. I have searched the internet and am having trouble finding information on all the diagnosis together. In face there is only so much information available on line and then it is as if you can't go any further in finding information. This site has been helpful but I still can't seem to get a complete explanation of my diagnosis. My surgeon says I will probably need radiation but has not suggested any other treatment yet until I have a lumpectomy next week. He is a surgeon though and not a cancer Dr. I am concerned about heart damage as it is my left breast and I have a heart murmur and on blood pressure meds. Also concerns about if cancer has traveled to other areas as I have been having pain in my lower right back and hip area. Could be nothing. But I want to know whether or not I have cancer anywhere else before I get treatment for my breast cancer. That could change my treatment options. Any help or info would be appreciated.
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Hi Mannettes,
You are in the right place to get general information about your diagnosis but you will be getting alot more information in the coming weeks and days from your doctors. I did not see a cancer doctor (oncologist) until after my surgery which seems to be pretty typical. When they do the lumpectomy they will also do some more pathology that an oncologist will need to see in order to guide you for not only your treatment but what other tests that you need. Is your surgeon a breast surgeon or breast specialist?
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hi Mannettes!
Sorry you find yourself here but welcome! Linda505 is correct . In the next few weeks you will learn much more about your diagnosis and the treatment plan.
However, I can help you alleviate some of your fears about the radiation. I had a left breast tumor as well. Most women do very well with traditional rads and the radiation oncologists try to avoid nicking the heart and lungs with the rads. There is another alternative that is called tomotherapy. I had this . You do it face down so only your breast gets the radiation. Ask your medical team about this option.
Best wishes to you !
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Hi Everyone
Not sure where to research this. Would appreciate any input I'm meeting a geneticist tomorrow. Out of 30 first cousins on my fathers side there is Breast Cancer with1 aunt, 2 cousins, 1 sister. They all tested for the BRCA gene, It was tested negative. I never tested because I knew it would be negative. We are Middle Eastern origin, so I'm not sure what other tests are there?
Thx for any input
The good news is I have only 1 more Herceptin treatment left.
Hope everyone is doing well.
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Manettes,
Sorry to see you here. But it is a good place for info. All MD's are different and even though we may share the same/similar diagnosis here are treatments and options as presented to us may have been very different. We are all, also very different, some of us want all the info and get very involved in the decision making, some like their doctors to tell them what will be happening, others are inbetween.
My experience was... I saw all my doctors in my team before any surgery. I also had tests to see if it had spread anywhere (all test negative). MRI of breasts(showed 1 node and breast tumor left side), Cat and PET scans. I met with my primary,gynecologist, Medical oncologist, Radiologist, Breast surgeon, Plastic surgeon and Physical therapist. I wanted all the tests first and all the appts. I wanted to discuss options and what they meant. I opted for a bilateral nipple and skin sparring mastectomy ( left showed what was expected, no surprises and my right breast was totally clear) and I had an auxillary node dissection because I knew I had a positive node. I had an option of Lumpectomy, I was told if I had lumpectomy I would need radiation. If mastectomy I could probably avoid( but this is not always the case and some research is leaning towards radiation even if only 1-3 nodes positive). I knew prior to surgery that I would need chemo and targeted as well as hormonal therapy. I am HER+ , My targeted therapy is herceptin for 1 year. It works better with a chemo agent I received 6 DD of my chemo drugs. I will soon be starting my hormonal treatment because I was ER +, it will probably be tamoxifen.
Some of my path changed after surgery, My node was just a micromet and my breast tumor was ER+PR+ and HER-, but my node micromet was HER+ (100%) so my treatment recommendations stayed the same.
There is a lot of info about to be given you. Please ask for copies of all reports and cd's of all tests. Start a folder. Breathe and take time if you can to digest and ask question. Ask any questions you may have and I'll do my best to answer them here or in message.
We are here for you,
Vivian
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Hi shasha10, I did not qualify per my insurance for BRCA testing but I qualified for BRCAplus testing lol - which not only tested for BRCA 1 and 2 but also other genes that may be responsible for breast and other cancers. Here is a link to this test info https://www.ambrygen.com/tests/brcaplus
I think it will take about 3 weeks to get the results back and then I will have to see a genetic counselor to talk to me about them
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Mannettes, all these ladies are right. The only thing I would add at this point is to try to take someone with you to all of your appts. You will be so overwhelmed that you will not be able to remember or process all of it. I usually took my hubby, but when he couldn't go I took my BF. They always heard and remembered things that I didn't. It also gives you someone to bounce things off of afterwards, since they know exactly what is going on. We will be here for you!
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Cypher FODMAP stands for Fermentable Oligo-saccharides,Disaccharides, Mono-saccharides and Polyols
It's a diet that limits foods with the above in it, and the list is extensive. For instance, you can't have fruits like apples, pears, peaches, nectarines, but can have bananas. You can't have onions, garlic, mushrooms, cauliflower, peas or any legumes, but can have broccoli, beans, carrots, potato. The list goes on and on and is quite confusing. You also can't have gluten or lactose.
I've been able to find a great app that I've downloaded that lists a lot of foods and tells you if you can or can't have them. I'm particularly bummed about the onions, garlic and mushrooms as I absolutely love them.
Once you've been on the low FODMAP diet and the IBS settles down, you can start introducing foods slowly to see what your triggers are. It's working quite well for me at the moment
Trish
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