TRIPLE POSITIVE GROUP
Comments
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Lago - thanks so much for the reminder of that sale!!!! I'm on it!!!
Hope your numb heel is gone for good!
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Dance...when I was reading up on acetyl l-carnitine, I didnt find a consensus. I think they would start out at a thousand or so, and then of they had joint pain, add more. Some people were taking 4000 a day.
So....i have a spot on my bottom rib on my right side that is pretty painful to the touch, like a bruise. I am trying to convince myself it is either due to the lipo or the compression garment I have been wearing. I have been freed from the garment so we will see. You know where my mind goes. I am giving it a week before I go to my onc.0 -
Nancy Jill my eyes are watery and feel a little sore all the time. Sun really bothers me also. Eye drops help but are annoying.
Re: Soy and Wine. My onc. nurse said soy is not a problem and a little wine now in then is also OK. I eat whatever sounds good to me right now because so many things dont appeal to me I'm losing weight.
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Thanks kayb and fluffqueen! Hang in there fluff. I'm sure it's from the surgery. We get pretty banged up in these procedures!
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fluffqueen I had a sore rip on my IDC side for a long time. It was really sore to the touch. I was worried a bit but gave it some time. It was from surgery. Nothing wrong with checking it out if you've had the pain for more than 4 weeks though.0
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Question - I wonder if the loss of estrogen from chemo- or regular meno-pause causes the joints to 'dry out' and that is part of what leads to the stiffness and soreness. Has anyone read anything about that?0
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Fluff: I've had a lot of pain on my right side rib too. Onc sent me for an xray (to humor me and make her feel better too I'm sure) and nothing. Not sure about you, but that was my bc side so thinking it is a result of rads....but xray showed nothing.
To those on the hormone sucking pill (for me Arimidex)....my skin is SO dry. I've tried a lot of things and upped my water consumption because I always think this stuff comes from within....no resolution. Dermatologist told me to try Amlactin...now I'm not sure how organic it is but it is working really well.
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Where do you get amlactin?
My bc was on left side, and no rads, which is why I am a little paranoid. I am going to give it until next Wednesday when I see him at yoga. If it isnt better, I am going to start lobbying for some tests.0 -
You can get Amlactin at Walgreens. Not sure where else.
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Dry skin: Have you tried coconut oil? Many think this works great.
I wash my skin with a mixture of Dove body wash and 1/3 part conditioner (for hair). I use the suave conditioner because it's cheap. It really helps. I know I've shared this tip with others and they really like it.
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Hi, what does curcumin do & is there a specific type/brand or dose that those of you who use it take?
Also, I know there are several supplements that are supposed to help achey joints, but which have you all found best? Im on tamoxifen, and just taking basic vitamins at this point: multi, b complex, calcium citrate, d3, biotin, biosil, probiotic. I want to add something that might help achy joints which im sure is causes by tamoxifen.
Fluff, my ribs hurt for months and even tho a bone scan showed '"focal activity " on left side, my doctors all believed it to br causes by the trauma of expansions. Exchange was done 3/28 and ribs still hurt on both sides, but again, im told its related to the surgery. Im getting another opinion, and probably going to switch MO, but unfortunately I couldn't get that appt til june.0 -
I've had left rib pain (not BC side) off and on for about a year.....it was just the front, but also moved to the back side....I made an appt for Friday, but then it went away so I canceled.
It's weird so many of us have it....maybe it is nerve related (damage/trauma) and it feels like bone? I dunno but look forward to any info you ladies get
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Shore,
My Onc said there is a trial right now going on with Tamoxifen and Vitamin E to help with joint pain. I'm sure the NCI has info on this because that is his go to site for info.
I take Move Free....I don't know if it helps or not.....
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Hi everyone....have been busy dealing with personal issues but have been trying to keep up with this very informative forum....Taking notes .Great information ladies. Thanks to all...
5 rads down and only 29 to go and I'm cooked to an itty bitty pink.....
Here's a very informative article from the Miami Breast Conference....Hope the link works..
"
So, endocrine treatment and anti-HER2 treatment are based on targeted biological sensitivity; but chemotherapy is just based on overall risk, not chemosensitivity?
In 2006, we learned that we could in fact target chemosensitivity. The analysis of the B20 study using the Oncotype DX 21-gene recurrence score showed that patients who had a low score had no benefit whatsoever, and patients who had a high score had a lot of benefit from chemotherapy. That was a huge change in our understanding. However, translating that change in understanding to a change in practice is a different matter because we grew up with a very strong emotional attachment to this notion of a “kitchen sink” approach for someone at high risk. If we saw a patient with a lot of positive nodes or a high-risk tumor, we were conditioned to think, “This patient needs chemotherapy. Her risk is high. We know chemotherapy helps with high risk.” And that’s what we did—treated the patient with chemotherapy. Even though we understood targeting with ER and HER2, it still was very difficult to let go of that notion and embrace individualized chemosensitivity targeting.There is a difference between understanding the new information about targeting chemotherapy only to patients who have chemosensitivity versus applying that in practice. When we began to understand that chemosensitivity can be measured and can be identified, and absence of chemosensitivity can be identified with a low recurrence score, it was still difficult not to use the approach that we have always used to treat the patient with everything we’ve got. I think the fact that we could understand targeting based on ER status and based on HER2 status enabled us to abandon the old paradigm based on risk, and move to a new paradigm based on targeting real chemosensitivity.
Would you say that most oncologists have overcome this hurdle and have started offering treatments other than chemotherapy?
I would say most oncologists are over this hurdle—this intellectual and emotional barrier where we reflexively think of chemotherapy benefit as a proportional benefit for all patients. We’re now moving into an era where we can actually target the patients who benefit and avoid unnecessary treatment in the patients who don’t. A few years ago most medical oncologists weren’t ready to make that change, except perhaps in very low-risk patients. In those very low-risk patients they would use an Oncotype DX 21-gene recurrence score to perhaps find a potential chemotherapy benefit for a patient who wouldn’t get chemotherapy based on traditional parameters We’ve gone from that very limited application just two or three years ago to a situation now where the vast majority of medical oncologists avoid chemotherapy in nodenegative patients with a low 21-gene recurrence score, in spite of traditional factors like larger tumor size or premenopausal status.It seems as though there’s been an explosion of information and commercial options for targeting breast cancer treatment. What’s the next hurdle / challenge?
Well, there’s a tremendous amount of excitement about next-generation sequencing. But at this point we haven’t fully incorporated more established genomic profiles in practice in a lot of cases. We’re just learning to use those to help us make decisions about patients who might benefit from neoadjuvant treatment. Some very innovative thinkers and clinical leaders have found ways to treat patients with a short course of either endocrine therapy or chemotherapy, assess the response in a tumor, and make a decision—at least in the clinical trial setting— about the best course of treatment for that patient based on tumor parameters, such as proliferation and other parameters of response. I think that’s the next step now that we’re beginning to understand these molecular profiles and molecular profiling. We’re not going to just jump from here to next-generation sequencing to full genome sequencing and variant analysis for patients. The goal is to individualize treatment for these patients. And short-course treatment based on initial assessment of the tumor biology, with rebiopsy to assess biologic response, will be the next step in individualized treatment."0 -
Wow Ashla.....excellent information! Thanks for posting - I'm trying to digest it all.
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May I bitch for a bit here with y'all? I really do try to keep up a happy disposition, but my husband and I just got some more bad news today... and this is on top of my diagnosis 11 months ago, my father-in-law's diagnosis of prostate cancer, my friend's recurrence of ovarian cancer, my beloved cousin dying suddenly at age 36 in February, my dear father dying suddenly earlier this month, and my brother and his wife freaking out on me so bad that I no longer have any relationship with either of them (and they are the only family members in the same town as us).
This morning we learned that our much loved dog Buster Brown the Beagle Basset Hound has cancer. Fucking cancer. It's just too much to take in 11 months. When do we get a break from these crises?!?
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Thanks for the info, you and all the other gals on here are a wonderful source of help and inspiration!
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All I can do is put you in my prayers and say I understand how hard life can be. I agree cancer sucks. But, it can be beaten!!
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NWartlady....
All I can say to you is that you are not alone either in having a life that reads like a chapter from the Book of Job or in dealing with those troubles. Your friends in this forum are ALWAYS close by to listen and give you whatever comfort is possible.
Sadly...we here are becoming experts at coping with cancer in our lives.
WE hear ya...loud and clear.
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NWArtlady-it's ok to dispose with the happy disposition. You have certaintly had more than your share of downs in the last 11 months. I hope things will begin to improve for you very soon. How old is Buster Brown? I bet he's just the best and I hope he will continue to be a comfort to you for many years to come. I like animals more than I like most people. I'm pulling for ya Buster Brown.
Condolences for your family for the death of your dad and cousin. Truly comforting words are difficult to come by for such sadness and loss.
As for your brother...what's his problem? Whatever it is, he needs to get over it.
Here's hoping you, your father-in-law and friend fight these cancers with everything in the doctor's arsenal. You guys have a cheerleader over here on the east coast.0 -
NCbeachgal you have every right to bitch. Cancer sucks. You are not alone. I too have read stories here of women that get all this bad news at once. I just posed yesterday there is no good time to get cancer.
BTW my sister and I haven't spoken since 1 week after my BMX when I had to tell her to leave because of her behavior. She does not live close. That was 1.5 years ago. Never even a call during chemo or after my recon surgeries. My BIL called once. It happens.
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Lago,
My sister..an RN...doesn't even know about my diagnosis. She systematically alienated herself from the rest of us bit by bit over time.
But your sister...knowing about your cancer.....I don't know how she can live with herself.0 -
I understand the family issues...just so sad that family just don't care...how can they live with themselves is beyond me...
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NWArtLady, I am so sorry. That is so much to handle all at one time. And it hurts so much when our pets get cancer - we've lost two to it. Cancer f*cking sucks. <hugs>
Lago, I agree with Ashla. I don't know how your sister can live with herself. Some people just never get the wakeup call about what is really important in life...even if you hit them over the head with a cancer sledgehammer.
On a bright note, my family has become closer as a result of my cancer. My brothers (3) had developed a major rift after some arguments that developed when my father died. Two of them hadn't talked in ~ 3 years. I was always the go-between, trying to mend bridges amongst everyone. They have recently reconciled, and my other brother believes it was because of my diagnosis making them realize it was time to bury the hatchet...he had had a conversation with them about me just prior to them reconciling. So, sometimes good things can come out of this h*ll. Not that I'm glad it ever happened...but if it had to happen, I'm glad I can find some good out of it.
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These family and friend issues are so important and can be quite devastating when dealing with illness.
Dance T...great for you that your family is there for you....Absolutely wonderful.0 -
Well it's a long story but my family is both stubborn, controlling and always think they are right. Since I have identified this, as a controlling person I try to keep those traits under control
butI knew it was going to be an issue so initially I wasn't going to have my sister fly in to help me after surgery. Mom made me feel guilty and my sister promised she understood that the way we do things in our house may be different then hers… yeah right. She was even driving my husband crazy. I looked great after surgery but as you know you have no energy. Healing sucks it all out of you. I had no energy for her needs.
I have no idea what she is thinking. All she needed to do was call. That's all. I think she might be talking to my brother now that I'm out of the picture. They haven't spoken much in 20 years.
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NWartlady-thinking of you. So sorry to hear about this.
I think some people stay away- cancer causes such fear in them they just disappear. It's painful.
Did I say it lately? I hate cancer. Ok, I feel better just saying it.
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NWArtLady: My prayers for you and your buddy Buster. I love my pooch ChaCha (yeah, that's why I'm ChaChamom!) and I can't imagine what you must be going through! And although I'm new at this BC stuff....I think Lisa is right.....some people stay away.....finding any excuse not to deal with the reality. We have one sone that is that way and one that is calling to see how we are regularly. Some of our friends have been more than supportive,,,,and then some act like....okay, your surgery is over and so everything is back to normal.....I don't feel normal! Just trust that "all things work for good" for those who love Christ. God bless you!
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dancetrance,
If you are still interested in finding an onc naturopath (and for anyone else interested) please google:
Oncology Association of Naturopathic Physicians
you'll probably find one in your area or w/in driving distance.
I am disappointed that BCO has managed to hide this info - unless you know what you're looking for you are not likely to find it. You can, however, find info on drugs w/o a problem.
Best to you,
tuckertwo
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Lago...I completely relate to your family traits, and sympathize...but I am LMAO at your line about stubborn, opinionated and controlling. My mother and two sisters are/were so much that way, that my cousin called them the "Gardner girls....women who have opinions on things that don't need opinions." They could single handedly drive every one crazy. My mom is 85 and my aunt is 90, and they haven't changed.
I too have to fight it, especially the stubborn and controlling part. My blog is called "what do you mean I have no control? I'm pretty good on handling the stubborn part but the control will always be an issue.
NW...so sorry about your dog. Our 16 year old miniature dachshund died a year ago, and while we knew we were going to have to make a decision as she was mostly deaf, mostly blind and tottered around. She died in her sleep one night and while we were very sad, we were glad we didn't have to make the decision. they really are family. I am lobbying for two right now. Husband likes being able to pick up and go when we want. Hmmmm...wonder what kind of control I will have to exert? LOL
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