TRIPLE POSITIVE GROUP
Comments
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LeeA - Do you know why you're "in a gray area" for radiation treatment? You and I have nearly identical diagnoses, except I am node-negative and my radiation oncologist even suggested I consider axillary radiation (just in case?) Since I had a lumpectomy and not mastectomy, I understand why radiation is recommended for the tumour's former site but I was a little baffled about why they would suggest even more aggressive treatment than that. In fact, the risk of side effects is almost greater than the potential benefit of radiating the lymph nodes so I am going to assume my 8 cycles of chemo reached any rogue cells and have declined the more aggressive radiation. The radiation oncologist wasn't really inclined one way or the other, so it was interesting that he thought I should make such a decision...
I know cancer needs to be taken seriously but I really wish there was a bit more finesse to these treatments based on an individual's actual profile (you know, with consideration for such factors as diet, lifestyle, fitness) and not just "let's throw all our tools at this" whether you're a healthy or recurrence-risk-factor-ridden patient. Anyway, I'm sure I'm not the first to lament the crudity of treatment regimens but I just hate not knowing whether putting my body through all this even pays off or if I would have been okay without some of it. My twin sister reaches her 5-yr survival anniversary on Monday, which coincidentally is the day of my final round of chemo. She decided to forego tamoxifen despite being ER+/PR+ because she wanted to preserve her fertility (she was diagnosed at age 33).
Dana - I wish you a speedy and hopefully relatively painfree recovery!
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Dana,
Don't hesitate to question your care, as you are the best person to keep an eye out for any problems, and surgery is a time to be extra careful about anything odd.
Marlene18,
Well said!! There IS a genuine bias in the analytical tools used for prediction in that the tools do not include even the slightest credit for so many things that affect recurrence, such as weight management, being a smoker (or not), using supplemental vitamin D, etc. etc. While any one of us can be someone with unfavorable invisible mets, the tools are all about making predictions toward an accurate best guess. I see from the sideboard annoucement that 25% are not inclined to do hormonal treatment that is recommended. I found myself among that group after taking tamoxifen for 1 year at full dose and 3/4 year at half dose. It stood to reason that because I exercise and work at weight management and have never smoked and am only an occasional drinker, (and I do supplement with vitamin D3), that my odds were better than the tools used to calculate my odds. (See my signature.) It isn't that I am a blind optimist. I just think I'm not a pessimist, and am more of a realist.
A.A.
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lbwagner69 and TonLee
There are some others with various diagnoses who have done Herceptin alone. It is becoming more common, first for the smaller risk adjuvant treatment.
To explain... When the trastuzumab trials were completed the results were enough of a surprise to oncologists that there was a period of time that went by before they put heads together and tried to come up with what really was just a rough guess as to which patients should get trastuzumab. (I was among those who had chemo but no trastuzumab because it took the oncs so long to make any decisions about who should get it or not.) During the period before the official approval for the use of it, patients and oncs were more free to have trastuzumab "alone" without chemo.
Once the use of trastuzumab was officially approved, even though no testing had shown definitively that chemo with trastuzumab was "better" than trastuzumab alone for adjuvant patients, due to the fact that the trials for adjuvant use had demonstrated only use of trastuzumab with chemo, the official approval was limited to use of trastuzumab with chemo. A friend of mine had trastuzumab alone for a tumor over 1 cm that was HER2 positive in 2006, and has never recurred. She simply refused any chemo and her onc agreed that it was better for her to get at least trastuzumab, and prescribed it for her.
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Dana, glad your home. I hope your recovery is fast. Much love
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TonLee, also in answer to your question, the trial I was in demonstrated that for low-dose testosterone use by women, participants did not have any "male" SE's. That includes me... I have a few more chin hairs to pull out more often, but no voice change, etc. (and definitely no gender of any kind).
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Lee, I haven’t checked in a couple of days but congratulations!!! You must be really happy to be done! I hope you are doing something really nice to celebrate!!!
Rhonda, a) you have really pretty hair – I think you’re doing the cold caps? I can see why! And b) I also have Kaiser. There are pros and cons. I also wasn’t given the neulesta shot and turned out not to need it – maybe it’s a Kaiser thing to be more hesitant to give that shot, but I was happy to not have had to deal with it.
Gratitude, interesting links. I also thought this was interesting -- http://www.sciencedaily.com/releases/2012/10/121031125033.htm So … it sounds like this PERK test is available, does anyone know anything about that?
I can’t read the medscape articles, not a member. I like the moderate drinking one though! I read another version of that. I also read that exercise partially counteracts the negative effects of drinking alcohol (not a cancer article, just general effects). Normally I would have been happier to read about that than lately –I feel oddly couch-potato-esque (for me – exercise WAS my idea of a good time). Is the tamox to blame?
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Marlene18 we all wish there were more personalized tools to dictate the proper treatment but they just don't have them yet, but are working on them. You will find many of us here that have a healthy lifestyle including exercise, little to no alcohol, healthy diet etc but still got this disease. I personally feel the low D (diagnosed just before cancer diagnosis. I was in the single digits) where the final triggers. I already had dense tissue and no pregnancies as risk factors. So what are my risks now for recurrence with no nodes? Well having such a large tumor is what really worries my onc and I know once they say 10 years for AIs she will want me to continue. Hmmm I'll see what I think in 3 years when my 5 years is up.
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Thanks AA for the info! I just may try this if I can get my Endo on board.....ever since chemo I can't seem to get my thyroid levels stable for any length of time....grrr...
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Thanks for the hair compliment Cypher. Only one more treatment with the cold caps to go, May 9th. I highly recommend using the cold caps, but it does make for a long day. Anyone who is interested, and for any new comers, the caps are supposed to be featured on the The Doctors Show on May 2nd.
Personally, I like Kaiser. I have had their insurance for years and have been very pleased. There has only been one doctor I didn't care for and so I switched to a different one. I like have choices so I feel blessed to work for a company that offers Kaiser as one of their choices.0 -
Rhonda2, we had Kaiser in northern California 30 years ago and liked it, and family there have had it for over 30 years and still like it.
TonLee,
I haven't had a free T3 or T4 done in ages, but will give that some thought for my annual physical later this year. I hope you can wrassle your thyroid wavering into submission, though! I just had a pile of labs done to try to see of my hives showed anything cancer-related, and the labs (including markers) came back just fine other than an alk-phos that has been above normal for over 10 years now (older women often have "fatty liver", and I am one of them).
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Dana I hope u'r pain has gone down and u r more comfortable. But the surgery is all done right? So that's good.
TonLee and Kellogs we must shop at the same cup store, I can barely pick it up anymore LOL
Hope everyone has a decent weekend and feels better and/or stays better. I have Dr/ stuff this week so can't wait to get that over with.
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Camillegal keep us posted on the doctor visits.
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Does anyone remember how long after surgery (mx left...reduction right... with nipple sparing on both) you started to feel less pain...I am not usually such a baby..but this pain sucks....lots of pressure...I DO NOT have any drains...something new in the last 8 weeks per the Cleveland Clinic...but I think its the fluid creating the pain/pressure. Nurse coming out in morning again. Kinda have a lot of chest pressure too over my sternum.
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It does take a bit. I know at the 2 week mark I actually went on the bus during rush hour to get to a freelance gig… but I had to sit down. If I held onto a pole and the bus stopped short I would have been in deep shit.
The first week to week & a half is the toughest. I had 2 drains for a week. First 2.5 days sucked.
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Lago...thanks always for your quick replies! Love your photo...you look so welcoming and comforting with your beautiful smile. ♥
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Dana no drains is a new thing now??? I never heard that. Lago does that make a difference.?
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I had drains in for weeks (6-8 weeks IIRC).
Hope you can get some relief, DanaM. The first sentence I said when I woke up in the hospital room was "the pressure!"
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Lee I thought the drains were to help pressur--I don't know, I mean I had drains but I had no pain at all---so I'm not understanding something.
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Dana, I hope you feel better. I had four drains for a bit, but I had a pain pump after mastectomy that washed the area automatically for four days, and it was wonderful. I only took pain meds for about 48 hours and that was only because the nurses in the surgery center practically forced them on me. I kept telling them it didn't hurt and they kept saying I needed to stay on top of it.
Make sure you are taking a stool softener with the meds. I learned the hard way.
I have never heard of no drain. That will be a wonderful new way for the surgery if effective.0 -
I had significant drain output for several weeks so I really don't know, camillegal. Like you, I felt pressure but not pain - but I did take advantage of that morphine/dilaudid pump while in the hospital. Once I went home it was Vicodin.
Editing to add - it was kind of hard for me to differentiate between pain and pressure - either way, it was uncomfortable!
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IDK I had drains for 3 months but never felt pain or prssure and never took anything that's why I'm confused about all this--I know my drains were in for along time cuz alot was stil coming out maybe that;s why I felt no pressure000who knows.
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Before surgery I was told I would have 2-4 drains....so this change is very new...I will ask plastics when I am there why the change....lol my hubby did give me a stool softner first day...well apparently my body went totally the other way with that med and I have had diahhrea since I came home...lol.....good Lord like I need that too...good thing I am easy going .....ha ha made myself laugh literally easy going...
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Dana-I found taking a muscle relaxer really helped me with pain. I alternated pain pill / muscle relaxer. Since you do not have drains i would follow up with your md if you don't get relief soon.
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Marlene, I saw your post the other day but I was having one of my Dark Days (post-chemotherapy) and decided to wait to answer on a day when I wasn't feeling so foggy.
Re: the gray area - I think I'll find out more this coming week. I'm getting another opinion from another radiation oncologist.
I had a mastectomy (right was propylactic) and one micromet in one node (.5 mm). The radiation oncologist put my stats into some nomogram and said radiation would decrease my chance of a recurrence by about 5%.
I had palpable node in my axilla which they removed during the mastectomy and it was clear as was the other sentinel (?) node (two of the nodes caught the dye or whatever it is that happens during a sentinel node dissection).
A few weeks ago I had an ultrasound on my axilla which came out as BiRads 3 (probably benign). Two seromas.
I'll be able to fill in more of the blanks after this other consult.
I would prefer to not have radiation but I won't make the final decision until after I meet with this other radiation oncologist and give it a lot of thought.
It's my understanding that with a lumpectomy, radiation is required no matter what.
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dana - if you are taking an antibiotic you may want to take a probiotic or eat some yogurt if you are experiencing the Big D - it may also be a reaction to any antibiotics you were given at the time of surgery. Pay close attention as it could be a c-diff problem, and also be sure to hydrate if the Big D is ongoing. I felt the chest pressure for several weeks and I didn't feel that pain meds did much for it - I think the muscle relaxers (Skelaxin, Valium, Flexiril or Soma) might work better. My drains, which were not producing much, came out early because I was put on a steroid not long after BMX because I had an allergic reaction that needed to be treated.
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My understanding of drains is the help remove the fluid that builds up. If you didn't have drains your body should absorb the fluid but it can take some time. If it doesn't then the fluid will have to be drained. I wonder if they are now doing no drains due to infection. Having drains of course increases the risk of infection, but then again maybe fluid that doesn't absorb will also be an infection risk. Dana don't be afraid to ask your nurse or doctor these questions. You may think you are bothering them but you pay for this. Wait to you see the charge.
Dana thanks for the compliment. My niece took this photo, granted I cropped it a lot.
I'm not always quick to answer. At times when I work on-site I do not visit this site at all.I did get a yeast infection from the antibiotics and I did all the precautions. I was eating yogurt and taking an acidophilus supplement. Day 8 of the antibiotics, when I was almost done with them I got it. I find the OTC meds irritate me. What I do is use one of the acidophilus supplements as a suppository in my V for a day or more depending on how fast I was to catch it. Not as messy as the meds either.
What are you using for constipation? It might be too strong. If it comes back I would try Metamucil as a stool softener. It's gentler and worked wonders for me on chemo. I used to use Milk of Magnesia but find the Metamucil, although slower working, works better. Ducalax makes me bloated and gassy. I have a story about the last time I used that but maybe for another post.
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Thanks for all the good suggestions....Colase was given to me as stool softner, but never thought about the IV antibiotics I had....I bet that is what I am reacting to...its happened in the past.....I am going to try the muscle relaxer instead of the Oxy....and see how that feels! Much thanks to all.
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Hi to all you wonderful ladies,
DanaM, my goodness, it sounds as though you are suffering terribly due to the surgery and no drains in place. Praying that comfort will come to you sooner rather than later.
Cgesq, you asked how am I responding to the Tamoxifen. Well, I began on Valentine's Day, and I find it doable, but there are side effects: sore hip joints, especially, some days worse than others, mild headache, present constantly during the first 3-4 weeks, but now occurring only intermittently. I have what I would describe as warm surges but not outright hot flashes. For the first month I noticed mood swings but they are gone now. Finally, quality of sleep is not as good as prior to all this cancer treatment, which only makes sense. I saw my MO for my three-month follow-up appointment last Tuesday, and he said doctors now want patients on some form of hormonal treatment for 10 years. I told him I would not be doing so. He will test me in two years' time to see if I am in full-blown menopause, and then he recommended that if I am that I take an aromatase inhibitor (AI). It lowers your bone density, I believe, and many people on these boards state the SEs are far worse than those from Tamoxifen. He also said that taking 20 mg daily of Tamoxifen is what they recommend (it used to be 40mg daily---those poor women!!), but that it is most likely overkill, but they do so as they are not certain who metabolizes it well versus who metabolizes it poorly.
AlaskaAngel, I find it interesting that you opted to go off Tamoxifen after taking 20 mg daily for one year, and then 10 mg for 3/4 of a year. Like you, I am doing all the "right" things, and I don't know if I would be brave enough to chuck the "evil, white pill" after 1 3/4 years, but I understand why you did so. I think we all understand that the "experts" are really doing a lot of guessing, too, and we are their guinea pigs.
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gratitudeforlife some people actually find the AIs easier than Tamox. Right not the 10 years is for Tamox only. The studies are pointing to 10 years on AIs too. Not all people have bone loss. I did from chemo and chemo-pause but my NP said this last year my bone loss has been almost non-existent. I am doing D, Calcium and exercises as recommended. I am/was osteopenic prior to chemo. Still osteopenic.
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If anyone can answer this would be great. What can I use for intercourse? this cancer crap put me in early menopause and it just hurts right away sorry about the ( TMI ) But I want to know what can us Triple Positives woman do in that area. I had already tried KY water base does not work long and still hurts. Thank you ladies.
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