TRIPLE POSITIVE GROUP
Comments
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Forever, there is some evidence that tamox may make radiation less effective – not conclusive but that’s what MO said and he did not want me starting tamox until about 10 days after I finished rads.
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Evening ladies: I had my 3-month with my oncologist and she congratulated me on being 2 years and 1 month clear. I was using my end of chemo as my 2 years but she uses surgery date which was March 1, 2011. Now, I go to every 4 months with her and she'll follow me probably forever (at my age and she is very young). After 5 years, I will go on Tamoxifen for 5 years which she said is the latest research that just came out. Well, since I'm not at 2 years (September will be 2 years) yet on Arimidex, who knows what will be the standard in 3 more years or even over the next few years. I mentioned Testosterone to her and boy was she surprised because she has seen no studies on it.
My Vit D level is at 86 so she said to quit taking it. I'm afraid to stop taking it but since I'll have bloodwork again in 4 months, she says it will not drop below 50 that quickly so I should be just fine. I hope!
Now, she didn't mention it (I always get a copy of my bloodwork to take home and file) and I noticed that my calcium is high the high scale is 10.2 a mine is 10.3 and I've heard some not so good things about high calcium. Wondering if this is a concern. I have a couple of minimally high readings and, of course, my RBCs still haven't returned to normal since radiation. A few others that I have no idea what they are seem to be a bit off but just very minimally.
Do we ever stop worrying.
BTW, I had a 6-month Echo today and will get the results of that next week when I see my cardio. My onco feels every 6 months is not necessary. She feels strongly that once your EF goes back up after Herceptin that it should not drop again unless there is something else wrong with your heart not related to Herceptin. I'll ask the cardio next week.
You all have again posted really good information today.
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<<the bottom of the cord was slapping me on the back of the leg as I walked away...lol>>
LOL at that visual, TonLee!
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Today was the sixth of six Taxotere/Carboplatin/Herceptin infusions. It seems almost surreal to think that this day has arrived and it is now evening. Thanks to all the triple positive women who have made this experience so much more understandable along the way. I am truly grateful.
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LeeA - yay!!!
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Hey ladies.....my surgery is tomorrow! Scared, but ready ♥♡♥♡♥♡♥♡♥♡
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LeeA,
Congrats to you, hurray you did it! I get my fifth treatment tomorrow and I'm definitely looking forward to getting this over with and that's an understatement. The one thing that really bothers me is the lack of taste for over a week after treatment. I guess I'm lucky that I don't get sores, but I miss tasting food. I'm also lucky that it is about my worst side affect. I don't get a shot either because my bloodwork always comes back normal. I have Kaiser and just gave blood today for treatment tomorrow and by the time I got home from that, the results were already posted and my white cell counts are 5.2 in the middle if the posted "standard range". I did experience bone pain after treatment 3, but not with 4. I can't wait to be like you and say I'm done with chemo. Are you getting radiation?0 -
Congratulations Lee! Great feeling isn't it!
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dana - good luck - will be thinking of you! I am thinking you will feel a bit more at ease when this part is over, and the cancer is removed. As with most things BC related, the event is often less difficult than was anticipated, but it is scary nonetheless.
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I think so too SpecialK!
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Good luck tomorrow Dana. SpecialK is so right, the anticipation is much worse than the surgery. I so remember how frightened I was and before I knew it all was done and I was back home. We all know what you are feeling though!
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ArleneA....thanks for caring....it helps a lot!
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Hi all, I just skipped by ten pages, as I didn't have time to read up on everything.
I am in Winston-Salem at Wake Forest for my six month booster for the vaccine trial I am doing and thought I would post an update on what is going on.
They are getting ready to move into phase 3 of the trial and when they do, they will begin giving the vaccine with people that are beginning treatment for herceptin, so they will receive both. she has some questions about how that translates research wise from the phase it is in now that gives it after completion of treatment, but she also thinks it bodes well for results. Genentech is the sponsor of the phase 3 component, so I am sure that has something to do with giving it in conjunction with herceptin.
I am going to try to read up and catch up, but from several pages back, on DHEA, my onc and my ob/gyn shot me down. So I had to give up, lol. I am working on lidocaine now. also got shot down on the low dose testosterone.
Tomorow is play day. Off to the wineries and a tour of Reynolda House.
I hope all is well with everyone!0 -
DanaM,
SpecialK and ArleneA are spot on as usual about the anticipation being almost worse than the actual event, be it surgery, chemotherapy, etc.
Mind you, I don't mean to minimize any of these treatment options. None of them are a piece of cake and it seems everyone experiences slightly different (or very different) side effects and some have a much harder time of it than others. In that way, chemotherapy reminds me of pregnancy - some women become far more ill than others - some have other types of side effects. Regarding surgery, at least for me - the anticipation was really intense, plus, at that point it was coupled with the shock of being diagnosed first with breast cancer and then as triple positive (Her2+++). The good thing is, you're on your way to fighting this thing versus talking about fighting it and surgery is the big gain in this fight.
As soon as that tumor was lifted out of my body (and I was awake enough to be cognizant of it) I felt a huge sigh of relief - knowing that it was eventually miles away from me - sitting in some lab versus parked in a body part. I played a lot of mind games at that point - i.e. that thing is 2.5 cm and I'm 5'4" - I'm a lot bigger than "it" and I've divorced it and sent it packing to a lab for "safe" keeping - or until they dispose of it forever and ever!
Good luck with your surgery. I'll be thinking of you as well!
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Dana, good luck.
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Lee - Congrats on finishing TCH!!!! Let the healing begin!
Dana - good luck on your surgery, sending nothing but good vibes your way!
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Good luck Dana!
Sorry for the drive by. I've been working on-site (today too). Went to an ACS Strides committee meeting last night too. Need more time in the day.
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Dana - Hope all goes well for you today and that your recovery is an easy one.
Lee - so glad your last TC is behind you. It's a great feeling knowing that this will be the last round of the bad SE's and your next infusion will be Herceptin only.
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Lee glad u'r done with that pahase. Now on to something new.
Dana we're all thinking about u--hope all goes really well and u'll feel good/
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Hi everyone....at hospital hanging out...surgery is now at 2pm! Still feeling good and you are all right...its the anticipation that's nerve racking...however the Valium is helping a lot...love...wish they could give some to my husband tee hee!
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Once again, good luck Dana. Mine was delayed a few hour too which just added to the anticipation. I remember crying as I was being wheeled into the OR. Silly me!
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Congrats LeeA!!
Rhonda, the taste changes bugged me too. Hated that.
Arlene, I hope your heart has improved!! That'd be GREAT news. My Onc says there is no data on if the heart improves it won't malfunction again....they HOPE not, but there is just no data on it. So please, let me know what your Cadio says! The more info the better!
AA,
Thanks for the info. Since my Ooph I'm having all kinds of non-hormonal issues. I have the hormonal level of someone years into menopause. lol
Since it came so sudden, the SEs are BOOM, right there...no slow building up to them.
The one that really gets me is the muscle tissue. (Just an aside, you might benefit from a low dose of natural thyroid hormone even though you are not hypothyroid...it helps keep your metabolism steady. Have you had it checked? Not just TSH but free T3 and free T4? Lots of women fall on the high side of "normal" but have excellent results with low dose natural thyroid.) Also, have you checked into iodine?
The biggest muscle difference I see is in strength and just the way it looks. The muscle fibers were much more distinct before Ooph, now they aren't...it's hard to explain. Strength is about 80% of before Ooph...and not increasing by much, tho some, with increased training. Also my body fat has gone up even though I haven't gained weight....which means I've lost muscle mass. So very frustrating. I know it seems vain, but fitness has always been such a part of my life. My Onc validated my complaint when he said, "Well T, for you it is def. a quality of life issue." That's why he is willing to work with me on the testosterone if the Endo doesn't.
Do you mind if I ask about the SEs? Do you have any? I know there is a fine line between enough for muscle growth and flipping into male characteristics.
My Onc also basically said if women on HRT have a lower risk of BC (back to normal women) when they add Test. to their regimine, then it seems logical it won't harm a woman NOT on HRT. Or something like that. Honestly I expected a flat out no, so didn't really have my ducks in a row on it...and when he said YES and pulled up data I was blindsided...didn't even think to ask for a copy!
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Hang in there Dana...prayers with you
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TonLee: My EF is at 65 but since I asked to be taken off the Betas they want to make sure it hasn't dropped back. Considering the amount of exercise I'm doing (just did the Sarasota Half Marathon last month, slow but I did it), I'm hoping it is fine as I don't want to go back on the Betas.
Have a great day everyone!
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LeeA--- Congrats Happy Dance...
Dana-- Good luck!!
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Dana - adding my support for today
LeeA - congratulations!0 -
Dana, Thoughts and prayers. The waiting is the worst. No one is in a hurry except the patient. Hang in there.
Hugs Eileen
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Rhonda2,
You're very fortunate that you don't require the Neulasta shot! I can't really say I get pain from it but I would prefer not to need to have it. After number five my WBC count was 23.5 at a week post-treatment. Yesterday, it had dropped again - down to 3.1.
The taste/mouth thing is annoying. After five I finally bought Biotene products. Stupid me - I was using regular blue Listerine as well as whitening Listerine throughout and finally paid the price after five, and that was with a reduced dosage (yesterday's dose was reduced as well).
Is that your real hair with cold cap use in your avatar? If so - excellent!! I can see why you didn't want to lose it - beautiful!
Re: radiation - I'm in a gray area according to one radiation oncologist. I'm going to a second consult next week. Are you doing radiation?
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DanaM,
My surgery was supposed to be at 8:00 am and was delayed until about 2:30 pm. Such a long wait. Glad they gave you a Xanax!
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Everyone, thanks for the finish line congratulations! It feels so strange to think that the Taxotere/Carboplatin portion of it is over. Maybe because April 17 felt like it would never come
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tonlee - I tried the low-dose Testosterone prior to BC for post-ooph issues, all I did was grow a mustache.
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Wonderful news LeeA....okay..I'll say it..WE TOLD YOU SO! You could do it and you did...
Dana, finally On your way to beating BC....one step at a time...you go girl!0
