TRIPLE POSITIVE GROUP
Comments
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Hi shore1,
Thanks for letting me know about the SEs you've experienced with Tamoxifen. I guess I wonder how I will deal with them when I am out in public. I am off work for the year, so it's doable to be at home and try to figure out if there is a pattern before I go out in public, but when I return to work next year, I worry that I will want to rip my clothes off and stand in a bucket of ice!!
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Hi swimmom01,
Thanks for describing the initial severity of taking Tamoxifen. I guess I will have to wait and see, although I am expecting the worst. Both my MO and RO have assured me that the body acclimatizes to Tamoxifen after about 6-12 weeks. Here's hoping!!!
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Congrats Fluffqueen, my March chemo lounge mate! What a milestone. I did neoadjuvant chemo and didn't have surgery until August 17 so I have a while to go. It will be two years since diagnosis on March 1. I will celebrate that as well.
Gratitude for life, I can also recommend the coconut oil. And the price is right too compared to a product like KY. I like it better too. It's such a large amount though, I only took some out and put it in another container. I am debating whether to try cooking with it too.
I am only 40% ER positive, but definitely think the tamoxifen is worth it. It doesn't bother me much at all. Give it a try, you may feel the same. I don't think many women have that bad a time with it. At least most of the ones I talk to.
In Baltimore today getting the second vaccination. Fluff, I am going to try to see if I see anything on the syringe identifying it. I had no se's from the first one, not sure that means anything though.0 -
Pbrain,
Hydrocortisone cream is very good for hemorrhoids.
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Hi Pbrain,
Yes, I felt weak as the chemo sessions piled up (I did a total of 6, three with FEC, and those sessions were ok, I was still able to go to the track and walk for an hour), but the last three, where I took Taxotere with Herceptin, simultaneously, that regimen plus the cumulative effect of toxins in my body, no doubt, slammed me on my back for days 4-7 of the final three chemo treatments. Chemo causes wasting away of muscle---no wonder!!--- so it is normal to feel weak. I am in TonLee's camp in that I pushed myself to move as much as I could during treatment. My MO recommended exercise, any amount, during treatment, as he said many studies indicate it is more beneficial than having no movement at all in your daily life. Please keep in mind, again, that for three days during the last three chemo sessions, I was flat on my back, for the most part, but whenever I could rally, I did. I have been a jogger and fitness enthusiast since I was 15 (am now 50). Movement is great for one's body and mind, as I am sure you know. I am going downstairs now to work out, and I am doing an aerobic component, lifting light weights (lost a lot of strength in the past 6 1/2 months) and stretching (also am noticeably less flexible, so I am doing Pilates and yoga moves).
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Hi Bellanan,
My hair grew during radiation. I have to say that what is growing from my scalp looks NOTHING like what used to be there (in any way, colour, texture, esp), but it is nice to have my head covered with hair, nonetheless. I think I may end up looking like Albert Einstein, with wiry, curly, crazy hair for now!! Re: tearing of the eyes, that began for me when I started the last three rounds of chemo, where I was receiving Taxotere and Herceptin simultaneously. With each treatment, the tearing became a bigger and bigger problem. I used BION tears as my MO said that might help me. By the last treatment, my eyes teared constantly and were itchy, sore and puffy for about 2 weeks. Then those symptoms disappeared. I guess for so much of the treatment plan my mantra was, "And this too shall pass." I have always been a patient person, but now I am even more patient, a good thing to evolve out of this experience.
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Thank you all on the scans info-- I will be talking to my doctor about this.
On another note can anyone tell me what is normal range in white blood count- red blood count- & platelet count or hemoglobin any info would be great I would like to know if mine is getting back to normal.
P.S. man this thread is fast...
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Gratitude,
If your periods come back you may lose the hot flashes entirely. When my period came back, the only SE from Tamoxifen I had was a chronic sore elbow...Tamoxifen keeps your breast cancer from sucking up estrogen, but acts as a super estrogen for uterus (which is why so many women get a thicker uterine lining)...and estrogen is what controls the hot flashes and joint aches.
My hot flashes were way worse on chemo than on Tamoxifen (because I wasn't in chemo/menopause).
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Ang7894,
WBC-3.5 to 11.0..RBC-3.70 to 5.00...Plateles-150 to 400...Hemoglobin-11.0 to 15.0..
These are the normal ranges...0 -
Gratitude, I went back to work after taking 14 months off to deal with surgery, chemo & the aftermath. I bought an entirely new work wardrobe to cheer myself up (after spending over a year in yoga pants & sneakers!). I bought lots of tanks that can be work under jackets, cardigans, etc., but look nice alone too, so that when I start sweating at a meeting, I just take off the jacket. I also got a little fan for my desk, and always have a big cup of ice water handy. I can't wear sweaters or turtlenecks anymore, and even fashion scarves make me hot.
TonLee, Specialk - Re SNB/Radiation, if I had 4 sentinel nodes taken out on the cancer side, and none on the non-cancer side, had a BMX, and the 4 nodes taken were negative, should I be worried that I didn't have radiation or axillary disection or even just more sentinel nodes taken out to be sure it was really clear? My tx plan from the beginning was that if SNB done during BMX was negative, radiation would not be part of it (this was from my MO, BS, and the RO I consulted with before we knew the node status). At the time, I didn't even think to question this. I later got a 2nd opinion (after tx ended) who said he wouldn't have done anything different (I wonder now if he was just trying not to freak me out because it was a done deal). It's not like I can go back now anyway, but I hope I didn't miss something I should I have gotten.
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Shore, I can tell you that is the same treatment you would get at UPenn. They do not use radiation after mastectomy when all the nodes taken were negative. That is the case no matter how old you are or how aggressive your tumor was. And if it gives you any comfort, even if there were any positive nodes beyond the sentinal (and I think the possibility is practically 0) the chemo you had should have taken care of it. I had neoadjuvant chemo and positive nodes, but after surgery, only two sentinal nodes had a small amount of cancer, the nodes under my arm were cured by the chemo.
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Sherry67- Thank you. All is well then I am officially back to normal. Well for that anyway.
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Lee your house is midcentury modern? How cool! My dream is to own one with a view of the reservoir and a terraced backyard. Mine was built in 1931, MUCH older than I am. TonLee’s post is very poetic. Mine was definitely physiological rather than primarily psychological – it kind of sounds like it was like that for TonLee as well for her to put it that way. I guess she will chime in at some point.
SpecialK, thanks for the explanation. Yes the scary thing is that a node with cancer lit up even though you were mostly negative in the sentinel nodes. However, you weren’t 100% clear so that eases my mind a bit – I was 100% clear in my sentinel nodes. I’m just afraid that we’re missing something, of course.
... should get back to work.... Bone scan is at 1ish, wish me luck!
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shore1 They will do Rads on node negative MX in certain cases. If the tumor was larger than 5cm than rads usually is recommended. I was in a gray area but I think the risk to my heart, lungs and ribs were not worth the reward. My tumor with total was 6.5cm but non invasive only 5.5cm. The problem is it was in the posterior region, left side right above my heart. I wish I only had a sentinel done on the left. Granted if I were going through this now that's what they would do. Things change as more studies are done.
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hello all!
welcome to all the newbies and hello to all my old friends
hope everyone is well
i am in post-surgery re-hab hell
I actually am feeling better, working with a PT twice a week has helped. What a long road. So tired of this alreadyshore1 - you got the standard treatment - YOU DID NOT MISS ANYTHING - honestly I think i was over-treated with getting rads but i can't turn back the clock on that one now. I know at Dana Farber they recommend rads for LVI, Grade 3, her 2 or TNBC like my RO did (spoke with someone on this board about that) but this seems to be the EXCEPTION not the rule. Stupid rads screwed up my reconstruction aswell so do i regret doing them? ya but at the time i was terrified and wanted "the works". The entire issue is with neo-adjuvant (which is what i had) , i actually saw a really interesting discussion at the SABCS on people who have positive nodes before neo adjuvant chemo and then become negative after and whether or not they need rads,. Jury is still out on this one because there just isn't enough studies on what a complete response means in a neo-adjuvant setting. Things are changing all the time...
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shore1 - speaking of wardrobe. I had a funeral today (ripe old age...nothing sad) and i had to "dust off" my dress pants that i haven't worn in over a year!!!! i live in my yoga pants (lululemon anyone?). I feel like im in the same rut as after I had my kids - remember those days? I felt dressed up in jeans!
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tonlee interesting take on surgery comprimising where the chemo can go...makes sense, which is why i think eventually node positive women who become node negative AFTER neo adjuvant will not do rads - no surgery before to upset the area so the chemo is free to flow. I guess thats why with a lumpectomy rads are a must to clean up the area if with wide margins. Always wondered about that, doesnt wide/clean margins mean they got it all, what exactly are they "cleaning up" ?
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Rozem what they are cleaning up is what they can't see with the current technology. They believe they get it all but some of this might be so small they can't see it… then a year later you get this little lump. Remember the blood supply isn't as good when there's scar tissue. We are still doing herceptin and hormone therapy.
and it's all stats. They have found a significant difference in rads vs no rads with lump.
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Fluff, all is calm in the Northern portion of Indianapolis (and congrats on the milestone!!). Windy, but calm. And Lee, I have been in Southern Indiana a few times and it is gorgeous. I'm always surprised to see rolling hills down there. I'm so used to flat, but that's pretty too. This is a pretty state :-)
Thanks everyone for the thoughts on the hemorhhoids. They seriously hurt!! Gratitude, you look like you are 25! Holy Mother of Pearl, you can't be 50...
I'm off to buy some hydrocortisone cream. I'm walking like Yosemite Sam...
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Ang, this website is put together by a professional organization that I belong to (American Association of Clinical Chemistry) and it doesn't steer you wrong on lab results. You can just type in the name of the test and get an explanation of what it is for and what normal should be.
However, keep in mind that a lot of hospitals have different normal ranges for their tests due to the testing technology they use.
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This is the hardest thread to keep up on and by the time I get here I've forgotten so much===
PBrain Im glad to see u back and did I understand u went back to work??WOW
And Dizymom I know I prob. tole u but my drains on the right side stayed in for 12 weeks and my onc. was having a fit cuz she wanted me back in chemo and my sureon wouldn't relase me--He told me it was my fault--hahaha But I saw him 2x a week and ater he did release me a couple of more times.
And Rozem I think u said u'r surgery was done??? I hope that what u said.
And I just had a bone scan, and I see the Onc again for a different scan in 3 months and I had an uS for my heart and 2 more tests 2/17,
so I'm still scanning and testing, I hope u guys don't have as many or have to do these stupid things so often Oh I didn't mean to make that sound maudlin honest. I'm just glad to have good Drs. and they are taking care of me so I'm good.
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Pbrain,
THANKS for the compliment re: my not looking 50. That, honey, was the "before" pic, before I lost my hair, got lizard-dry skin, and have suffered through neuropathy in my feet and hot flashes galore. By the time I finished chemo on Nov., 9, I was a wilted flower. Looking more like myself, face-wise, but the hair, well, that's a totally different story.
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Cami, I never stopped working, but I do seem to be missing more days as I head towards the end of chemo. I just don't feel well--as gratitude would say, I'm a wilting flower. And I can relate to the lizard-like dry skin. But not that much longer to go.
But here's my thinking--hemorroids aside, I'm gonna get out there in a month or so and start my garden!!! That's what will get me back in shape. We need a post pics of your garden board :-)
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Sounds like I will possibly be able to return to work after my chemo treatments. I don't know if that's good or bad!
Tuesday is almost here so I guess I will find out soon. Thank you everybody for sharing your stories! What a journey we are all on!0 -
I don't have a garden but I have container after container (and hanging basketfuls) of succulents and bromeliads (mainly succulents). I need to get out there and tend to them in the next few days. One of the babies of the bunch (the rarest) had to come in a few nights during a cold spell (it got down in the low thirties). All that said, a gardening thread would be great!
Re: blood counts - I went for my one week follow-up after treatment 2 and my wbc was 1.6 - and that was with a Neulasta shot 24 hours after tx2. Wow. I was shocked! I thought a $9000 shot would put me up in normal range but I guess I should be grateful considering what it might have been without the Neulasta shot. My onc (and Relda's
says I don't have to come back for another two weeks (unless I get a fever). --
This next thing is just because it's so outrageous that I feel compelled to share.
My husband came in with a letter from BCBS when I got home. The hospital where I had my mastectomy had billed the insurance company (drum roll, please) $88,000 for three days of hospital services!
BCBS said "you will not be billed additional charges - we paid them $12,000 + change and it's settled." At first I thought my husband meant they had paid them $12,000 less than $88,000 (i.e. in the seventies) but then it finally sunk into my chemo brain that the hospital just billed this outrageous fee and BCBS paid them usual and customary (or whatever it's called). I'm pretty certain that did not include the services of either surgeon. It's just so over-the-top that I had to relay it! Of course, I know this is commonplace but wow, I had never heard of such a bill for three days of hospital services!
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Kayg & Lago - thanks, for info. Lago, yes, makes more sense that size and location is taken into account.
PBrain - glad you're coming to the end of chemo!
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Shore,
I think you're golden. If my nodes were clear, I would still have had radiation to the whole breast because of my close skin margin. But I would have totally refused it for the axilla!
You got standard care....that is backed up by plenty of research
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tonlee - you must have me mixed up with someone else - not having a bone scan, but I appreciate the good wishes nonetheless! Had an all-clear PET in December, no scans on the horizon.
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Pbrain, I'm with you on the garden pix. Not many things give me as much joy as getting my hands in the dirt. We could start a gardener forum on here. Do you plant a vegetable garden?
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powermom, I'm glad to see you back. I was wondering where you had been (I read what you said about taking a break from bc type online stuff yesterday). I hope your area wasn't hard hit by any storms.
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