TRIPLE POSITIVE GROUP
Comments
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vballmom, I do not get a cough with tx, but I do get a lot of sinus congestion with each tx. Of course I have no idea which drug it is at this point. If it still happens after I am finished with the TC part then I know it it is the Herceptin. The first couple times I thought it was a cold, but I did not have any other cold symptoms, just the congestion. You are right it seems like a cold is never just a cold on chemo.
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camillegal That stinks about the bones but if you have to look at the glass 1/2 full it's better than one of the other places breast cancer likes to go. I'm sure they will find the right cocktail to control that. {{{♥}}}
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Thanks Lago- but I don't seem to worry about it so--I think it's a decrepid (sp) old back--but they have to check everything cuz we're special. LOL
vballmom hahaha A cold is not a cold anymore--it turns into a disaster--I still get infections that I never got--sinus,bladder, kidney-it makes me laugh cuz it's so dramatic, which I am too but it's not just a cold--like u say.
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Lago, yes I do know that now. At the time though, that is how I felt. I went forth with the port, and was ready for chemo as a Stage II/III'er. Then, three biopsies later, I'm a Stage IV, and you don't need the chemo now, we're gonna give you a pill instead. Then, he met with a bunch of his "cancer cronies", and called around and e-mailed some of the top cancer docs, and had a meeting with all of my "info" up on the wall. They were split on the cocktail of chemo, but all decided since my cancer rated a 7 on the aggressive scale, they wanted to start the Perjeta. I was thrilled! My onc is not a egotistical man, and doesn't think he's so smart that he can't ask for help. He said "my father told me if I have a problem, to ask ten people how to solve it, and go from there". A doctor with a huge ego, can be a problem. I hope I can stay with him!
Camille, no worries my dear. The roids are done, and so am I!! I am sorry, I misinterpreted your post. So, are you going to have a PET done to see what's going on in your back, aside from the spinal degeneration?? I hope you get some sleep hon! It helps a lot! I took an Ambien last night, and got five hours. On steroids, that's not too bad! Maybe you can ask for some? The generic is not too expensive.
Thanks to those who posted re others on Perjeta. Am going to check out their stories, and see what their se's are. I think maybe they're starting to kick in some, but I still don't feel too bad.
Have a great day everyone!
Lynn
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Jlynn I hope u have a good day today--u have to tell us everything about how u feel--this is very interesting to me about the perjeta-its so new.
And I told my Drs. I did have a pet/cat scan cuz my Katie-Kat has been rubbing on my back alot lately and she never did, and she did that with my boobs too. So nthat's how I found my BC cu of her. I did have 2 ultra sounds and passed a kidney stone--which has nothing to do with my back but I think my Katie-Kat knew it. I know everyone I'm very weird, u should see how my kids turned out. And I'm living with one of them now, but my grandson thinks I'm great cuz he says i'm not a normal grandmother.?????He actually thinks I'm beautiful and tells me--see weird runs in this family.
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Fluff,
Never have seen any postings after these conferences other than the ones announcing huge discoveries. Seems as if the big news comes out of the San Antonio Conferrence every year. Have seen nothing from the Miami Conference yet.
Re fatigue....I definitely feel fatigue more easily and more frequently than prior to treatment but wouldn't describe it as chronic. The extreme fatigue started with radiation and has definitely improved. Still not sleeping well either.
Interesting bit of info. I finally met another triple pos lady in person. Did not get into an indepth conversation with her because she...like so many people I speakto....doesn't know and doesn't want to know very much about her illness. I just listened .
She had axillary lymph node dissection , was given therapy and told to wear a sleeve when she flies though she doesn't have lympedema . We're in Florida and she was told to wear her sleeve in a hurricane! Did you kow that?0 -
Bad news....which may some day be good news
My BS's colleague tweeted that there are multiple "promising" studies regarding CR...calorie restriction in prevention and treatment of cancers.0 -
ashla don't panic yet. It might be for certain groups of people that calorie restriction prevents cancer. It may be for those who are overweight or obese. I know plenty of thin women that get cancer. Technically I think I had qualified as one of them till this year.
and I still had a nice glass of red wine on Friday with my friend. You have to live in order to survive. Pick your battles but I agree not everything in moderation is OK. Crack and Crystal Meth are examples of "just don't do it."
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Lago....
You are so right....so much of this will never pan out. Although I had gained weight after menopause I was still considered slim when I got my DX. In fact I had virtually none of the risk factors except one of the new ones...dense breasts.
I attempted to read one of the obtuse ...for me .....medical articles on it and it referred to calorie restriction " short of malnutrition" ...I said crap...this treatment isn't bad enough, now they're gonna starve us?0 -
Shasha I'd love to hear what else you come up with for your anemia, I'm fighting the same and finding meat hard to tolerate.
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Camillegal, I'm with you, I cannot drink water - too metalic! I drink Vitamin Waters, eat ice pops, and drink smoothies - organic probiotic ones and Naked ones full of fruits and veggies. And home-made chicken broth, made with organic veggies and chicken. I wish I could drink water but what can you do...
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I agree, the treatment was bad enough...
I was within normal weight range at dx but gained 25 pounds with tx. I was able to lose it with tripling the amount of exercise per week that I had done prior to exercise to equal 1 hour a day, in addition to reducing calories. But as I became more completely menopausal, that wasn't enough, and I was recommended by the endocrinologist to do 2 hours of exercise per day 7 days a week. With taking a shower in addition... well, advisable maybe, but not realistic....
Postmenopausal weight gain was increasing my risk. Even though my labs indicate I am not diabetic, I am now on low-dose metformin, which has made a major difference for me. I still exercise daily and eat a proper diet, and I fast 2 days at a time occasionally when I start to get pudgy, but I am now finally able to control my weight without having to struggle so much with exercise and hunger all year long.
A.A.
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I added lemon to my water during chemo, then I could drink it, otherwise it was really yucky!
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Alaska Angel..
Thanks. Very interesting. I've been reading about Metformin.
Here is one article on the calorie reduction theory......
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2829867/0 -
Ashla and others,
This is an article I read a few weeks ago relating to how restricting calories during radiation treatment MAY make the treatment more effective. I chose not to post it as I feel, like most of you, "Really, it's not bad enough that we have to endure treatment, SEs, weight gain, weight loss, loss of all or most of our hair, blood transfusuions, etc.; and, some of us are giving up/reducing intake of refined carbs and alcohol, post-treatment, and now we have to reduce our caloric intake, too
." FWIW, all may read it for info., sake:http://www.sciencedaily.com/releases/2013/02/130204094507.htm
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This thread is really moving. Only missed two days, but its four pages! Wow. Everyone is in my prayers. Happy for those with good news. Hugs for those going through stuff right now. Much love to all.
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Who knows where all the calorie reduction research will lead but I personally feel that eating a nutrient rich diet helped my body get through the rigors of cancer treatment relatively well. I cannot imagine finding the strength to get through if I was on a calorie restricted diet...especially radiation. I was totally exhausted t the rads finish line!
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It looks to me like the human trials don't yet include doing chemotherapy butjust the restricted diet after rads, so that is not quite as difficult.
It is one thing to subject trapped mice to a restricted diet vs subjecting untrapped humans to restricted diets... and it is more difficult to use a population of stage 0-1 to begin with, since most of them statistically would not need anything more than surgery to remain without recurrence.
I am only guessing, but to get the percentage that they got with the mice, the mice quite possibly were not limited to the equivalent status and likely were mostly higher-stage cancers.
A.A.
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AA I agree. I wasn't all that impressed. Lots more study needs to be done and it looks like it could take years to prove/disprove.
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Did u ever notice when a celebrity comes on TV and announces they have cancer they all look like they've lost a ton of weight in 6 weeks. I guess u have to be a celebrity in order not to gain weight.
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Just stopping in for a quick hello. We're still remodeling...UGH.
Anyway, two things. Remember my cousin who was diagnosed a year after me? Well her daughter, my second cousin, just found a lump. She's lost a lot of weight since Christmas. And I really don't think she was trying. But most women are "always" trying so when it happens before cancer they don't attribute it to that...~sigh~ I feel so sick for her mom. I'm praying it is NOTHING. (She had thyroid cancer a couple years back.)
Second, SO I've been juicing, you know just to try it. I'm not sold on it...smoothies though I could really learn to love me some smoothies!! HELLO fiber...lol
So I drink a juice every am. An easy one, ... orange, apple (or pineapple), celery, beet.
The first day it was like a shot of adrenaline! I couldn't believe it! The next couple times I got the shakes and muscle weakness pretty bad....so I stopped for a day to make sure it was the juice.
Then this morning I made it again...and Omg..I was so freaking sick. I am still not feeling well. My throat burned, and it took everything I had not to throw up.
I am NOT a puker so color me confused.
So I researched and found out that beetjuice is HELLO! DANGEROUS ... lol. That might be overstating things a tad...but for me, it was just one more nail in the coffin of juicing. If the whole plant lacking nutrient thing was true, then one beet should not have made me so ill.
I've read that I can incorporate it...but meh, that's too much work. I think juicing is fine for my kids (much better than store bought! And I can sneak in veggies...muwhaahahahaha)...but for me, I'd rather have the fiber as well...so smoothies are likely going to win out.
Bought a Ninja Blender...AWESOME! It's has 3 food processor blades instead of that stupid thing at the bottom of most blenders. It works on everything!
Love it!
Hope everyone is doing well.
About rads and calories. I ate like a fiend on rads. I was so incredibly hungry. I went from my usual 1500-1600 calories up toward 3000-3200 and STILL lost weight. I can't imagine how ill I would have been if I fasted.
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Lmao Tonlee. When I was first diagnosed with the panic disorder thing at my time of diagnosis, my bp, usually normal, had escalated and my heart was pounding. NP friend put me on the lowest dose of metoprolol.
I was resisting a pill and thought I would drink beet juice, as it was supposed to be a miracle veggie for lowering bp immediately . Ughhhhh....it tastes so disgusting. There is no amount of fruit that could hide that taste. Maybe your bp tanked. I am with you though, I like smoothies better. Although grapes run through the juicer are so good. You would never drink frozen grape juice or bottled again.0 -
Ok this is my first post. Picked this forum since I am triple positive. I'm still learning since I was just diagnosed 2/8 and had lumpectomy 2/15. Chemo begins 3/21. My regime starts with TAC. Can someone tell me what the drugs are since I failed to write it down today.(my first visit with ONC) I am pretty sure this is a combo that includes "red devil" and it's not going to be fun. Anyone that has traveled this road please pass on some pointers.
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TAC is usually Taxotere, Adriamyacin and Cytoxan (sp?) Adriamyacin is considered the "red devil". Are you having Herceptin? Since you are triple positve, I can't imagine that won't be in your cocktail. I received TCH (Taxotere, carboplatin & Herceptin) for my cocktail. Did he write it down, or give you any printouts about your treatment? They should say.
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Gigif....welcome and sorry you have to be here. I believe TAC is Taxotere, adriamycin (red devil) and cytoxan. It is one of the combinations they use. I had Taxol only.
We will help you through and be here for ou. There is also a thread on TAC where they talk about the effects.
Are you getting herceptin also?0 -
gigi - you are most likely getting AC-TH if you are triple pos. These drugs are Adriamycin (called the "red devil" because of its color), either Cytoxan (usually) or Carboplatin, Taxol or Taxotere, and Herceptin. Since Adriamycin has a cardiotoxicity risk it is not given simultaneously with Herceptin, so the Adriamycin and Cytoxan are given together first for a period of time, and when those are done they give you the taxane drug and the Herceptin together for several doses, then you continue with the Herceptin alone until you are completely done! On this thread you will find a number of different drug combinations were given to us - there are some geographic differences, and also oncologist-specific preferences as to which regimen is chosen. Some have received Taxol and Herceptin, some Taxotere/Carboplatin/Herceptin, and some the AC-TH. Tolerating these drugs is very individual - some have no problems, some a lot - hard to say how it will be. Do you have any specific questions that we can answer for you?
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GIGIF OMG I'm the first one to read this and I think maybe I know by now, but I'm not sure so I hate to say it, but it sounds pretty proptocoly. What I mean is Alot of us have haad this I think the A could be the red devil--it's not as bad as u think--I've had it too-Taxol for the T maybe or taxatere-- and maybe carbosomething does that sound familiar--Oh believe me everyone here is so so knowledgeable really they will guide u thru every aspect--I don't know much about medical stuff--but u sure came to the right place and everyone will tell u what to expect for anything that u'r getting--but not me I'm sorry.
I just came on to say my tests just show 2 deterioating disc and vertabrae and no cancer--so I said oh everyone has that-so no cancer in my back--and she's giving me m=stronger pain pills and I should see a back guy--not yet I still have other tests to have--so I don't have Muncjhausens I was so relieved cuz I always think I imagine pain then when they tell me it's real I'm so happy until it dawns on me I'm in real pain--it hasn't dawned on me yyet. So still remission no new cancer.
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Yippeeee Camillegal!!!! May I be the first on here to congratulate you!!
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