Starting chemo July 2014
Comments
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Oh Jennliza, thanks so much for checking in! So many people so worried about you. You continue to be in our prayers, so glad that you have such a great support system.
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knmtwins - I will try to answer your questions. The nodes were clear. I was started on 4 rounds of TCH but just before my 4th round my onco said that all my counts looked good so he wanted me to do 2 more rounds. He never gives me a print out. When I went in for the 5th round, I saw a different onco who said that my counts were not all that great and she recommended stopping the TCH and just finishing up the year with herceptin. She gave me a print out and I will list some test results but if you dont see what you want to know, feel free to ask. My usual onco wanted me to also do 6 weeks of rads but this new doc said 4 should do it. Of course there will be 5 years of one of the anticancer drugs. Neither doc has ever mentioned Perjeta.
Cancer AG 14.5 (0.0-25.0)
Bilirubin .3 (.0-1.0)
Aspartate Aminotransferase 48 (15-46)
Alanine Phosphate 68 (38-126)
Lactate Dehydogenase 664 (313-618)
White blood cells 5.1 (4-11)
Red bllod cells 3.33 (4-5.5)
Hemoglobin 10.5 (12-16
Hematocrit 31.7 (37-47)
Platelets 117 (140-440)
Most (almost all) of the test results listed I have no idea what any of it means so if you need to know about a specific count, just let me know.
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I read about taking L-Glutamine and B6 on the Dana Farber website, on a nutrition page. I'm a patient there, so they are ok with me taking it. I haven't heard about anything negative associated with it, but I haven't been seeking it out that info either.
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I haven't had nodes done yet, what does the 'fraction' mean? kpmacmill is 1/3 nodes, Blownaway is 0/2, Mags is 4/8 nodes
Thanks blownaway. I agree, who knows what that stuff means, I'm a data junky, so look for trends, then look for trends based upon how many days after each cycle, as I have blood drown weekly and always ask for a printout. It makes me feel like I have some control / knowledge. Of course I don't, but... I haven't seen any significant changes and all my labs are fine. Just this neuropothy scares me as well as the muscle twitching (not just the eyes).
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Nice site for questions on lab work, mind you, everyone seems to have slightly different 'normal ranges', so if you are out a bit, but your doctor isn't saying so, or you are fine but your doctor says you aren't, remember to go with what your MO says. BTW - I ask each time for my labs. They have 1/2 immediately, so when I come back the next week, I ask for detailed labs from last week and what they have for today to be printed out for me. Again, it is a data and control thing. Certainly not necessary, this is what the doctors go to med school for, but... http://news.cancerconnect.com/testing-center/blood-tests/
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knmtwins - the fraction is the number of positive nodes out of all the nodes removed. I had 3 sentinel nodes removed and 1 was positive for cancer cells.
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dancingdiva- L glutamine was highly recommended by my Naturopath who works with the Regional Cancer Center in my area. I know a lot of folks are skeptical about Naturopaths (as I was) however, her methods are inline with the cancer community. I have never heard that the 100% L glutamine powder is dangerous. I made sure at every visit that my ONC and Nurses were aware that I had taken the powder specifically for the neuropathy side effects. And they never once had a problem. But, I guess we never know what could be harmful to any of us in this world. No one really knows for sure where and why we all have cancer. I sure do not.0 -
Good morning ladies! Hope you are all doing well.
I spent the weekend with my husband and his family cleaning (well I mostly supervised) a house that my sister in law and brother in law are going to let us move into. It was formerly a rent house of theirs and when the renters moved out they so kindly thought of us and offered it to us rent free for as long as it takes for cancer treatment and to get back soundly on our feet! It is a charming house built in 1927 so it does need some work, but fixing up the house in exchange for no rent and getting some of our privacy back sounds wonderful to me!
I also am now a momma to a 4 week old carin terrier / weiner dog mix puppy I have decided to name lil mister...
I think my family (my husband's really but I'm claiming them as mine) wanted to give me something else to focus on than the new tumor growth, extended chemo, etc. They are so awesome!
And... this Saturday will be me and my husband's first anniversary. It is crazy looking back how much can change in a year! I have chemo Wednesday so not too sure how I'm going to feel on Saturday...
I hope you are all doing well, still fighting neuropathy in my feet so only able to fall asleep at certain (exhausted) Times and after a pretty much sleepless night I'm feeling tired hopefully tired enough for a nap!
Hope you all have a fantabulous day!
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Chaos -- congrats on the house, the puppy, and the anniversary! I've also been struggling with sleep, usually after 2:00 am. Ugh.
Jennliza -- happy to hear that you're improving after all you've been through.
Mags -- hope you're feeling better!
I'm working at home today which means doing lots of laundry in between some grading.
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If you read about what a tumor needs to grow....one is protein and another is sugar (have you all cut out sugar?). Glutamine is the most abundant protein in our body. At this point there is no official evidence that taking Glutamine supplementaion enhances tumor growth. In fact, there were studies by the NIH that says the Glutamine helps with toxicity from radiation and Chemotherapy and helps keep intact your GI tract....from mouth to rectum, as well as helps with peripheral neuropathy. The recommended dosage was 30G/day....
I do not take the therapeutic amount....I only take @ 10-12G/Day. I havent had diarrhea, mouth sores or neuropathy....but as we've seen with chemo....its different on every one. Also, as someone pointed out.....my cancer was removed....theoretically, I shouldnt have tumor growth. My Onc knows and the nutritionist at Dubin Breast Center at Mount Sinai have said it was safe to take.
Hey, I also do cold caps.....most MO's do not support them because they are not FDA approved, but have been in use in Europe for well over 10 yrs with a study of @3000 patients. With everything about breast cancer and all its unknown reasons as to why any of us have it.....how you treat it/fight it is a personal decision. Read what you can...listen to whom you want to...trust your gut!!!
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OK - just took my first B-supplement, as MO says may help with neuropothy. YUCK, I have this horrible taste in my mouth that won't go away. What do I do?????
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chaos so glad to hear from you. How nice of your sister in law and brother in law to offer you the house rent free. You have a wonderful support team. And congrats on the puppy. I have two chocolate labs and they have been so wonderful to have around during this mess. Love my dogs. Congrats on your anniversary too
Knmtwins do you have any hard candy like lemon drops or jolly rangers? That may help with the icky taste.
Nancy
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Thank you for all the well wishes. I am starting to find my way back to the land of the living, though still weak as a kitten. Thankful my cousin has such a heart to take care of me, and also my husband who did so all weekend and is now back at work.
ChaosRains, so good to hear from you, and delighted to hear that your family is so in tune with your needs as to provide a place to live, working on a house (I always loved that when I was able to do it!) and a sweet puppy for companionship and affection. Kudos to you for choosing a mate whose relatives are there for your support! Happy anniversary in advance (we still haven't gotten around to celebrating our 27th on July 31...) and remember it doesn't matter what day you celebrate! Just be together and enjoy each other's company.
Worst thing right now is the burning tongue. Even soft foods, yogurt, cottage cheese, etc., burn something awful. But this too shall pass.
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Regarding sugar feeding cancer:
http://junkfoodscience.blogspot.co.uk/2008/03/do-you-fear-sugar-might-cause-cancer.html
Does sugar feed cancer?
The idea that sugar feeds cancer, if it was true, would understandably terrify anyone. It is this belief, though, that has helped to feed fears of refined sugars and flours and other ‘bad’ carbohydrates.
Recent stories circulating the internet and media have led many people to think that concerns over sugars are real and that they come from upstanding doctors at prestigious institutions. No one can blame them for believing sugar is linked to cancer. There are more than one million websites (a stunning 1,080,000 by last count) capitalizing on this fear and virtually none offering the science.
But it is nothing more than an urban legend, the result of misunderstood and distorted science.
The legend even finds its way into our inboxes, sent to us by concerned friends or relatives. Did you get the email called the Cancer Update, for example? It claimed to be from Johns Hopkins, saying sugar feeds cancer cells and suggesting people eliminate refined carbs and sugars to “starve cancer cells” and prevent the spread of cancer. It also claimed that nutritional deficiencies purportedly due to modern diets and lifestyles can cause cancer, that acidic foods like meat cause cancer, that ‘live enzymes’ in raw vegetables and various supplements can fight cancer, and that cancer is a disease of the spirit and caused by having a negative outlook.
It was a hoax and the information was of the “quack variety,” as Snopes** reported. The information was based on vitalism. [Vitalism is at the heart of most beliefs and fears of the special powers of foods and supplements, but it defies known scientific principles of physics, chemistry and biology. It’s an ages-old mysticism that holds that whole, natural foods have vital life energy, live enzymes and vibrant nutrients, a special essence, that can impart optimal wellness and heal and prevent disease; while refined or cooked foods are unhealthy and the nutrients our bodies use from them are inferior, cause aging and chronic diseases, and feed cancer.] The spoof became so widespread and potentially harmful, though, that Johns Hopkins even issued a public statement last March saying it had never published that information and doesn’t endorse its contents.
Even if one believed sugar feeds cancer, although it might sound logical that eliminating sugar from one’s diet could then stop cancer cells from growing, that’s biologically not how our bodies use food. All food energy — regardless of its source — is converted into identical simple sugars that our bodies use for energy to function. Similarly, our bodies use the same chemical nutrients from foods - regardless of their source. Just like healthy cells, cancer cells don’t care where the sugar comes from. And if you stopped eating completely, your body would then start tearing down fat and muscle stores for energy, but it wouldn’t stop the cancer until you died of starvation. Please don't try this. Following this faulty logic would seriously endanger the life and chances of a cancer patient who needs greater nutritional intakes, not more restrictive diets.
The sugar-cancer fear has the veneer of science, fueled by reports made to appear scientific. Like all food fears, this one is nothing new. Each time it’s been debunked, it resurfaces using a different technique or elaborate theory attempting to convince us that it is based on science.
The root of this myth is experiments by German scientist, Otto Warburg, Ph.D., who won the 1931 Nobel laureate in medicine. He reported that cancer cells produced lactate from glucose in the presence of oxygen, where normal cells produced lactate from glucose in the absence of oxygen. This observation led him to conclude that energy metabolism in cancer cells was different and was misinterpreted to mean that dietary “sugar feeds cancer.” By 1961, scientific research had identified the metabolic pathways in all cells and shown that energy metabolism is the same as those in cancer cells, but the myth was born.
But there is no truth to the rumor that sugar causes cancer, or that people with cancer shouldn’t eat sugar because it causes cancer to grow faster, said Dr. Timothy Moynihan, M.D., a cancer specialist at Mayo Clinic, in Rochester, Minnesota. He debunked this popular misconception in a recent article, explaining:
Sugar doesn't make cancer grow faster. All cells, including cancer cells, depend on blood sugar (glucose) for energy. But giving more sugar to cancer cells doesn't speed their growth. Likewise, depriving cancer cells of sugar doesn't slow their growth.
This misconception may be based in part on a misunderstanding of positron emission tomography (PET) scans. Doctors use PET scans to help determine the location of a tumor and see if it has spread. During a PET scan, your doctor injects a small amount of radioactive tracer — typically a form of glucose — into your body. All tissues in your body absorb some of this tracer. But tissues that are using more energy — exhibiting increased metabolic activity — absorb greater amounts.
Tumors are often more metabolically active than healthy tissues. As a result, they may absorb greater amounts of the tracer. For this reason, some people have concluded that cancer cells grow faster on sugar. But this isn't true.0 -
Puffin - thanks - I kept seeing that, but no one had told me to avoid sugar, so I was confused. Oh and if sugar caused cancer, my MIL and husband would have it, not me, I'm a 1/2 tsp sugar in my coffee, plain tea, kinda gal. Now creamy, like a good Alfredo sauce... or mac and cheese... or holladaise sauce... that is my downfall.
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Puffin- I wasn't saying that sugar causes cancer or makes it grow faster...just that it needs energy...as all cells do...much in the same way cells needs protein.
Definitely wasn't trying to support that misconception...sorry
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Jennliza: when you wrote "have you all cut out sugar", it sent out a wrong message, we don't need to cut out sugar, just eat normal healthy.
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Wow, I missed so much. Round 4 knocked me out again. My vision is a little freaky and I can't drive. It's like my depth perception is way off. I started having a little neuropathy in my fingers and toes and now my fingernails are started to hurt. I hope they don't all fall off or get gross and infected.
I ordered the L glutamine and it should be here today. Hopefully that will help with several of my issues.
knmtwins, when I take vitamins, I take them with food or a smoothie, never with just liquid because I feel like I burp up that disgusting taste all day.
Glad everyone seems to be doing well.
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Question for Immodium users:
Taxol's only annoying SE for me has been looser stools/D. By day 3, what had been looser stools becomes D, and I take Immodium, which does the trick. By yesterday (Day 6), I thought I could stop with the Immodium, and I actually had a semi-normal stool. But, today, D is back so I took my Immodium. When I am on the Immodium, I seem to have C, and do nothing. Is that normal? At some point, should I just ditch the Immodium so I have some stools, no matter what the consistency? Sorry about all the D and C talk; I've never really used Immodium that much before.
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Elaine there: what I've been doing is only taking Immodium when I have D for more than 4 times because I know it's gonna give me C. That being said, I'm usually home and don't work so it's manageable for me. This past round though, #4, I had nuclear D so I took 1 immodium at night then when I woke up, I drank my coffee as usual and had nuclear D again so I took another one. Went out to eat pancakes a few hours later and had nuclear D again so took another one. I knew it would cause C so the following day so I started taking 2 colace at night and I didn't have any bm's that day but the next (today) had a normal bm.
I think our bodies are all different and I the way I look at it is I would rather have the big D if it's only a few times because for me the big C is always worse. I had it last week so bad I felt like I was giving birth and felt like I was pooping rocks! TMI but here we can get away with it, lol. Hope this helps. I might add that when I get nuclear D, I try to drink lots of gatorade so I don't get dehydrated
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New info on imaging for breast cancer
http://www.fda.gov/ForConsumers/ConsumerUpdates/uc...
Report on Fox this am about Perjeta, thank you Pink's husband for bringing this to our attention http://www.foxnews.com/health/2014/09/29/roche-breast-cancer-drug-unprecedented-in-extending-lives/
Agian - I seem to not have posted something I thought I posted... I now realize it is because I am replying to the notification emails sometimes... chemo brain, you mess me up. Here is what I wrote: BMs - D, C, oh they joys of chemo... we all talk about it. I rarely leave the house, because I never know. BUT the most important, in my mind, is DO NOT let C happen. It will hurt like the dickens (childbirth) when the D kicks in, and it will. I have imodium, lomitil Rx and Bentyl Rx. I haven't taken the Bentyl, but it is supposed to help with gas and cramping. When nothing works for the C, I do 1/2 bottle magnesium citrate with same amount of gaterade at night. Last time, I almost had to do another the following night, and would have been a whole bottle, but fortunately, D finally kicked in. I also use the glycerin suppositories to try to help get some of the rabbit poops out first.
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Is anyone's port (catheter) still bothering them? I'm getting a pain / discomfort up near my collar bone, and now my neck and upper arm are sore, as in maybe I'm holding my body wrong, to try to get rid of the pain, or maybe just not used to being up on the computer... probably computer... Last night, when I was lying on my side, watching tv, I actually was holding my breast, inside my bra, as I felt like it was tugging on the catheter inside.
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I was pretty lucky with my first 2 cycles, but after my 3rd cycle on carbo/taxol I got hit with the big D too. Luckily I'm home most of the time so I didn't take anything for it. I get C at the drop of a hat, so I wanted to avoid Imodium if at all possible.
I had scans last week and after 3 cycles I'm stable, so onward with another 3 cycles for me. Congrats to all of you finishing up chemo and graduating to rads.
Keeping you all in my prayers.
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knmtwins - are there any color changes in you skin? where the port connects to the vein (above) or below? Any redness/Pink coloring? For me, my skin remained Pink...and then got more red from there. Also was your port fine for a while....no issue's/comfortable and now its not? When was you last infusion?
Its probably fine....Just look for color changes/discomfort.....if skin turns pink/red and of course any fevers appears....get it out!
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Kebab - congrats on stable scans!! That's awesome news
Lots of good news here lately no? Wonderful to hear Chaos has a new home and a new puppy. And fun to see team July start to roll through the finish line.
Round 4 hit me pretty hard. I'm just climbing out of the hole...but the good news is that there is nowhere but up! I can hardly believe it...it's actually weird to think I won't be going back to the chair...I am surprised by how ambivalent I feel (at least chemo felt like I was doing something...now...nothing...).
I will go back to the MO in a month to talk about tami, or else ovarian suppression and an AI. Not super excited about either of those either but will of course do whatever is required. MO's current thinking is to start with tami rather than force menopause at 39. I am not sure what the right thing is. His concern is mainly cognition (there have apparently been some studies suggesting some impairment for very early medical menopause, and I have a very high intensity demanding job). I don't know though...I know plenty of smart, professional post-menopausal women, right??
I guess SOFT/TEXT will finish reporting at the end of the year and the cost/benefit may be clearer. Would love to hear if anyone else is starting to think about this..
Hugs to all,
Rain
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Ditto on everything RainDew said about Round 4! Just finished number four of CT and it has kicked my butt. I had SE I never had before. So glad it's over. I know time will gloss it all over, but it just wipes you out.
I haven't been on for a few days and figured I'd be way behind but not so. Everyone must be lying low. Thinking of you guys and hoping everyone's hanging in there.
I just visited my first reconstruction doc, and have a different doc appt in two weeks. The good news is these crazy scars on my chest look good! They're so awful I couldn't tell, so glad to hear that's how they're supposed to look. He basically said all reconstruction options are on the table, so it's really just up to me. That was nice to hear!
Puffin - loved the sugar info. Everyone I talk to asks if I've cut sugar out! I just assumed it was true, so awesome to hear I won't feel guilty having a sugary treat every now and then.
Mags - hugs to you. Stay peaceful.
Here's me on my last visit to the chair. No bell at my place. It was in folder called "cancer crap!"
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Hi All! So much to catch up on!
WalleGator- oh my you look all of 16 in that pic!
Congratulations to everyone who has finished or is finishing up! It is really exciting- to be able to get on with the next step of getting out lives back whether it's on to rads or reconstruction or just obsessing about our new short hair styles!
Kebab- yahoo! Such good news! Wishing you lots and lots of stability!
Chaos- enjoy the new space and the new puppy! So fortunate to have such a strong support network and family!
To our caring leader Mags- ((hugs)) to you...i know you are feeling tender now, but every day will be better.
I had #3 today of Taxol- not much to report. So tired tonight and worried about neuropathy- it's already in fingers and toes and feet...but mo says relatively ok and onward we go. Boo he also is a purist and says no to l-glutamine...ah well...just looking forward to the next/last treatment!!!
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WalleGator, looking mighty fine! I'm on the upswing now, my legs don't feel so much like lead. You gals are so beautiful, with and without hair, you are awesome. Hope everyone is resting.
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kmntwins -- Thanks for the link about Perjeta -- I feel lucky to be taking it, given how aggressive my cancer is.
Ladies who posted about Immodium -- Thanks for your insights! I think I will skip it on the days I'm working at home. No sense bringing on C when D is tolerable.
Kebab -- good news about being stable!
WalleGator -- Congrats on being done! You look awesome.
RainDew -- I keep expecting chemo to lead me to the Promised Land of Menopause, but it hasn't happened yet. If my genetic tests come back positive, I'm looking at a hysterectomy and menopause anyways. I have a relatively demanding job (college professor!) and wouldn't bat an eyelash at the prospect of forcing menopause. (FYI: My city's mayor [who is also in my department] suffered from early menopause, and she's as sharp as a tack.)
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Elaine Therese - promised land of menopause.
Hahahahahahahahahahaha. Laughing out loud.
I honestly looked at my MO perplexed and said 'because there are no highly successful post-menopausal women??' (Kind of sexist right? I have had many wonderful women mentors who, without checking for tampons in their cupboards, I'm fairly certain have passed their child bearing years...)
Thought it was the weirdest thing. Glad you had the same reaction...
Have a restful night all.
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