TRIPLE POSITIVE GROUP
Comments
-
Patin,
Weird. I told MO about leg cramps and no one said it could be an SE of tamox. He ran electrolytes or something on me. It did show my calcium was on the low side, and according to dr. google, that can be related to muscle cramps. Does tamox lead to lower calcium absorption? Or ...?
0 -
Thank you so much Lago and SpecialK for sharing your expereinces. All your info is a great help. It is considered an outpatient surgery, but the doc wants to keep me overnight so they admit you on the back end of the surgery and keep you for up to 23 hours. Insurance thing. It will be on my right side and that is my dominant side, so I am sure some things are going to be a challenge, but washing my hair won't be one of them since I am still bald from chemo! Maybe I'll start practicing now with brushing my teeth and putting on makeup with my left hand
Drains could be an issue because neither DH or DD are very good with things like that and I really don't remember what I did after the BMX. At least there will only be one of them this time. I do have both Xanax and Ativan in my arsenal from chemo so I will take one before the drains come out just in case it is an unpleasant experience.0 -
Bren I was able to use my arms for a lot of things just not for reaching overhead. It was just the stuff that was heavy or required push like opening a tight jar, opening the fridge, pushing the vacuum. I had no problem putting on my make up… but the flat iron for my hair, well lets just say I still have a small tiny red mark on my chin from that. I decided I wanted to style my hair about 1.5 weeks post surgery. Reaching up above my head was still difficult (my drains were removed after 1 week). On the way down the iron hit my chin
I had only 2 drains total. The one that had the 10 nodes was freaky when it was removed. It was under my breast but when she pulled it out it felt like she was pulling a bunch of stuff out of my arm! I freaked a little because I really thought she was removing stuff she shouldn't be removing. It hurt only when being removed which was 10 seconds. I wish I had been warned.
0 -
Cypher, hmmm interesting that your MO didn't connect your leg cramps with tamoxifen. Mine listed the possible side effects as muscle aches, Charlie horses, weight gain, vaginal discharge, cloudy thinking (!), hot flashes, and the biggies - blood clots (1 in 100 chance) and uterine cancer (1 in 500 chance). He explained that tamoxifen blocks the estrogen receptor in some tissues (breast cancer cells and the brain - thus the hot flashes) and acts like estrogen in other tissues (bones - so it prevents osteoporosis - liver and uterus. Lucky for me he writes all this stuff out so I have it on paper to refer to! He is great with explanations - I will definitely ask him about why tamoxifen can cause Charlie horses next time I see him.
0 -
PatinMN - I have found that if I stay very well hydrated I have less trouble with the charlie horses. When I get dehydrated I notice them more.
0 -
Dehydration can definitely cause cramping, but your calcium, magnesium, potassium and sodium levels should probably be checked. Issues with your thyroid can also cause leg cramps. It is also a symptom of neuropathy. The easy fix is to supplement if any of those levels are low, you can also try drinking some tonic water, or try supplementing with Vitamin B and see if that helps.
0 -
Bren - I had my ALND with my mastectomy and they removed 27 nodes. My upper arm was quite uncomfortable when I woke up in the recovery room and the Morphine wasn't helping. I tried moving it to different positions and that was somewhat helpful for me to change it's position. I asked the recovery room nurse if it could be raised on a pillow and if I could have ice and she refused. Once back in the room the nurse did give me a small pillow under the arm and ice and it made a world of difference. Make sure you advocate for yourself re: any discomfort. I had two drains and I agree with the advice given for when drain is removed, it felt like it was tearing out but as others have said, the pain is only for seconds, but definitely an unexpected feeling.
I was not restricted regarding raising my arm, they had a PT come and teach me the initial exercises the morning after surgery, I think it was helpful in preventing LE so far and I have continued them at home, and through the radiation period. They have told me that I will need to continue them daily. Every surgeon and facility is different in what they allow, I was also allowed to shower with the drains in and I had no problems with infection.
After the initial postop day or two I didn't have too much trouble with pain.
I wish you all the best for your surgery.0 -
Okay all you smartest girls in the room..I know I'll get the wisest answer from you all...what's with coconut water? I see it everywhere. Our friend's son...an ER MD..orders it by the case for his personal use.
0 -
ashla-- I don't know either but I have noticed that to. Does anyone know?
0 -
It seems coconut water is one of those "crazes" but it is better for you than most sports drinks because they are loaded with calories… but coconut water still has calories.
I still believe if you eat sensible, healthy diet with lots of veggies and low on the bad carbs you are probably getting what you need.
0 -
I don't know what the craze is about. The one I tried tasted terrible!
0 -
Hah! I'll drink to that!
http://well.blogs.nytimes.com/2013/04/11/alcohol-and-breast-cancer-survival/
0 -
Cypher...
MY BS's holistic colleague tweeted that story! Next week we 'll get the opposite side.
If it tastes good and makes you feel even better.. It either isn't good or isn't possible for us it seems.0 -
I hope to figure out my new scanner printer so that I can share the letter I just received from the radologist's office where I had my anxiously awaited one year diagnostic mammo on my left...killer....boob.
Apparently it's " fine" according to the PA @ BS but you could never tell from reading it.
%€>#?'!!(?/ ..I feel like performing my own BMX right now.0 -
I hate coming back to the board and finding new members! Not because I don't like them, but because it makes me so mad that we have more women who don't deserve this frickin disease! That said, Welcome, Dana and Max.
It's always bittersweet meeting people on these boards.
Funeral of my DFIL was sad, but everyone knew he was out of pain and with his wife of 63 Years, so good as it gets. My onc visit went well after my little scare. Where he actually thanked me for allowing him to check it out. I'm like, um you mean I had a choice? And I would haVe gotten it checked out anyway. But he cares, he's good, and isn't into just waiting if he thinks things need to be done. I know I feel better. BTW, I now know that even with a BMX, I could have ended up having a mammogram! LOL, let your Mind wrap itself around that one, LOL. US tech.called in the mammos tech to see if they could get whatever I had left could be put in the machine, and she said yes. Kind of a scary thought, and I can't imagine the contortions and stepstools I would have needed. But thank goodness the radiologist didn't think it was necessary as my US was the always wished for "unremarkable" LOL
Much love.0 -
cypher I always felt that way. Moderation. The press is making alcohol consumption sound like doing a little crack or heroin… now doing crack and/or heroin in moderation is not something I would recomend
But I was never a big drinker. I just don't like to feel like I'm being reckless having a glass of red wine or some tequila once in a while.
Hmmm I think we're doing Mexican tonight.
0 -
I have only tasted coconut water once at Whole Foods - it was blecchhh. It is supposed to hydrate, has minerals, lots of potassium and replaces electrolytes. Maybe there are some better tasting ones? Maybe if it was mixed with the alcohol mentioned in the story above...?
0 -
Ashla,
I ran across this on Google when researching juicing....
Coconut water is:
- Rich in natural vitamins (especially the B vitamins), minerals, and trace elements (including zinc, selenium, iodine, sulfur, and manganese). Vitamins are necessary for the enzymatic reactions your cells need in order to function.
- Full of amino acids, organic acids, enzymes, antioxidants, and phytonutrients.
- Rich source of electrolytes and natural salts, especially potassium and magnesium.
- Light, low calorie and nearly fat-free, as well as low in sugar but pleasantly sweet—contains about a fifth of the sugar of other fruit juices, like apple or grape juice, as well as containing a little fiber to moderate absorption.
- Rich in cytokinins, or plant hormones, which have anti-aging, anti-cancer, and anti-thrombolytic effects in humans.
Coconut water also has an alkalizing effect on your body, which can help correct the cumulative effects of acidifying foods that make up most diets today.
For a complete nutritional profile, refer to the tables at the Coconut Research Center site. The list of health benefits of coconut water is impressive, and growing by leaps and bounds with each new scientific study.
You can also use it to water your plants...lol.
I don't have the calories to spare....but it might be a nice addition to a well balanced diet. Certainly won't hurt...in moderation
0 -
Patin,
I get charlie horses...especially in my left calf. It's weird. When I was pregnant I also got them in the same place. I learned then not to stretch in bed with my toes pointing down..instead I stretch by pushing the heel toward the end of the bed instead of the toe.
Still, some nights I yank awake with them. Not as bad as when on chemo, but still not pleasant!
I also noticed, my left calf, the one prone to charlie horses, is weaker than my right. When I work my calves my left side always feels on the verge of having a charlie horse when things get heavy. The right can go all day.
0 -
Cypher,
Interesting study. I found this sentence to be especially so...
"Cardiovascular disease, the authors write, is increasingly being recognized as a mortality cause among breast cancer survivors."
0 -
I didn't have the trastuzumab, but I did have the doxorubicin as part of CAF x6. What was interesting was that my PCP (being especially interested in and highly qualified for cardiac issues) did a pre-tx echo, which came back in the mid-70's for me. When I was being considered for the trial offering lapatinib in 2006 post-chemo for those who had missed out on trastuzumab, I was still a tad chubby and my echo was low to mid-50's, but probably improved with subsequent weight loss since that helps reduce the work of the heart. Now that I am 10 years out I will have an echo in a month or so to see what the long-range cardiac status is for the use of the Adriamycin for me.
I also have recently developed..... urticaria... which is something to keep an eye on because there may be a relationship to cancer. (There is always something, especially since HR+ tend to recur late, and the chemo done long ago makes no known difference for late recurrences.) Never a dull moment....!
0 -
AA,
Please let me know how that echo goes. I was told weight had very little to do with MUGA. (Don't know about echo.) I'm not sure I understand the correlation when it comes to ejection fraction.
As you know I have heart damage that really hasn't changed much in the last year +. I know herceptin damage can sometimes be reversed, but I didn't think that was the case with Adryamycin?
Anyway, please let me know! Now I have to google urtucaria! lol
Have a great weekend
0 -
TonLee, thanks for pointing that out. I zeroed right in on the part where it said i could drink in moderation and didn't pay a whole lot of attention to the rest of the article.
I wonder what they mean by that. I mean, you could die of a heart attack when the primary cause is cancer -- like its mets all over and your heart gives out b/c of the stress of that. Putting it in EXTREMELY crude terms b/c I don't have a medical or science background, but hope that somehow makes sense anyway. Or is this people who have had cancer and die of a heart attack years later becuase their systems are weakened by the cancer TREATMENTS?
0 -
Adriamycin has been a very effective chemo for a very long time (mid 70's for metastatic?) but they are now noticing that those who take it have what seems to be a life long risk of increased cardiac issues. The taxanes that are used now in some cases instead of Adriamycin are fairly new. I think this is the main reason why my onc prefers Taxotere to Adriamycin. But as we know Taxotere (approval '96 for metastatic?)has it's own special lasting SE too… but so far they don't seem to be life threatening like heart disease.
Anyway I think this is a big reason why many women in the past end up passing of heart disease. Only time will tell if the switch to some of these 3rd generation drugs improves that for early stagers.
0 -
Still amazed with all of you very smart women.... I have my bmx this week on Thursday I'm getting so much information from the docs thrown at me I can't seem to comprehend it all....I am scheduled with the MO and Hemotologist on Tuesday to discuss treatment plan ....can I ask how long after surgery do you start either chemo and or radiation etc.?
0 -
Welcom all the newbies, but it's true more and more are joining and I makes me sad.
You know I have really nothing I could every add to all the research that y gals do, I do know coconut water .milk is very high with vitamins and cramps can also be from low potassium and the best way to drink coconut is in a Pina Colada--really good.
0 -
kayb,
I'm wishful-thinking that this is not chronic... I had it briefly last fall for the first time, but was told then that it was "just age spots".... (Huh? Normally age spots don't itch like the dickens -- but I can't SEE these darn things myself). It wasn't chronic (6 weeks is considered chronic)... Then one night this winter after I made some spicy eggplant parmesan (lotsa sauce) I was itching all over.... and it hasn't gone away... (not the eggplant, the itching.) My NP checked it this week and I'm taking OTC loratidine antihistamine, which helps some. It could be just stress, as I am having to sit tight for the time being on a major family project that we very much need to get finished (just terrific timing for a month of jury duty).
TonLee, correct -- there are cardiac meds that can foster some improvement but doxorubicin damage is more permanent than not, IF one has any damage from it.
cypher,
Answer: "people who have had cancer and die of a heart attack years later because their systems are weakened by cancer treatment" (doxorubicin in this case).
As Lago says, for the cardiac risk plus other reasons they switched to using a taxane shortly after I was treated, although CAF is still used for some patients in some circumstances.
0 -
DanaM usually they schedule 3-6 weeks post BMX but they like to start before 8 weeks. I started exactly 5 weeks but probably could have started 4 weeks. Right now it's hurry up and wait but once you have surgery things move much faster. I didn't meet my onc till 2 weeks post BMX. They really base your treatment on the final path… and things can change in surgery. In my case, even though they didn't see any node involvement they assumed I would have at least micromets given the size and aggressiveness of the tumor. I lucked out with clear nodes and although in a gray area for rads I got a pass.
0 -
Thx for the input on coconut water. Sounds like a wonderful natural nutrient packed alternative drink. I tried it. It has a very slight taste that is hardly discernable as anything other than a tad sweet. It was very wet and thirst quenching, however. Might have been good during chemo.
Don't quite know about how it stacks up costwise to other juices but I think I might keep it on hand.0 -
Hello Ladies! New here and to BC. I started AC chemo treatment 3 weeks ago and get my sencond cycle on Tuesday.
So far, my biggest struggle is with my mood swings and taking my frustrations out on my DH. He is so sweet and loving, but every little thing he says and does sends me into a rant. I took leave from work for since chemo is supposed to pretty aggressive, and it is, but I am not the stay at home type. I am used to multitasking and doing for myself. The first 2 weeks of chemo calmed me a bit, but I returned to nasty b-mode this past week.
My hair starting coming out a few days ago, I expected this, and I am ok with it. Once I start seeing scalp, I plan to cut my air and eventually shave my head. Going wig shopping with my sister today which should be interesting. We have very different styles and she is a fashionista, I have been called a "soccer mom", "tomboy" and the likes. I am a simple person whose independence is slowly disapating. I am learning to allow friends and family to help as much as I can tolerate it and often need it.
Glad this forum is here as I am struggling to wrap my head around what is happening inside my body and what my diagnosis means. Seeing that I am not in this boat alone really helps.
0
