TRIPLE POSITIVE GROUP
Comments
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mommato3. I finished chemo dec 2011 and didnt get a period until dec 2012. At that point my MO decided to shut me down. Everyone in the oncology community is quite divided on whether or not pre-meno women should be shut down. Again we are all waiting for the SOFT trial results come out however some preliminary studies comparing ova supp and AI vs tamox and ova supp - the AI arm had a 4% advantage. Now the question remains whether that's enough of an advantage vs the risks
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Special, so why do you think they recommend ova suppression along with Tamox? Does it have to do with your ER%?
Lago, I know TN is really bad. I don't really want it. My old neighbor is now 3 1/2 years out from TN. She is the one that almost lost her husband because she has been so freaked out about a recurrence. She has had more scans than you can count on both hands. My DH had me contact her when first diagnosed so I could see how it was several years out. It backfired on him though. She has really been encouraging me to remove my other breast and ovaries so I have less to worry about. She's BRCA 2 +.
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Any one have issues with their veins due to chemo? I'm getting some dark veins behind my knees, kind of like varicose veins, but not perturding. I had one darker vein before chemo, but suddenly there are a few more. I see my MO tomorrow, so I'll ask him about it, but you ladies are so knowledgable, thought I'd you first.
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Mommato3 if I were BRCA+ I would rip everything out too. The BMX was recommended due to LCIS in the "good" breast but I kept the ovaries. I was perimeno though and my last cycle was 2 weeks before chemo.
BTW my onc says % positive doesn't matter. It doesn't work that way. (I was 30% ER 5%PR). You know that "you can't be a little pregnant" thing. Love to hear what your oncs have to say about percentage
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DebiAnn,
I think my veins are looking worse since chemo- more visible. I just ordered horse chestnut cream in the hopes it might help. Someone said you should massage your legs from the bottom up and also said lying with your feet up against the wall for a period everyday is also good for them. I feel silly being vain about the veins (ha ha) when there are such bigger issues but there it is. I used to sport really nice legs.Lago, thanks for posting sex links. I feel similar to Rozem. I'll try some of those tips. I don't care all that much but DH does so I feel it's only fair to put in a little effort.
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momwriter sex does bring two people closer. While you might not have the big O you can still have fun. I will admit I miss my right nipple
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Momwriter, I read your remedy wrong at first, saw horse chestnut ICE cream, never heard of it, but if its ice cream, I'm all for, lol. Never heard of horse chestnut cream either, but I'll look it up. Thanks.
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momma - I was not referring to ovarian suppression plus Tamoxifen, just Tamoxifen. I had a hyst/ooph nine years prior to Dx so went straight to an AI, so I have not spent much time investigating that combination. I had some preliminary chats with my onc about switching to Tamoxifen after 5 years on AI to minimize the bone damage while still providing some hormonal therapy protection. I have another couple of years before making that decision though.
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Special, i know you were talking about Tamox. I was just curious if you knew why some premenopausal women do ova suppression + Tamox or just Tamox.
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momma - seems to be onc style points, and somewhat arbitrary. Like the choice between chemo regimens. Age at Dx and nodal status may play a part, but I can't see a definite pattern in the recommendation.
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I just want to make a suggestion other than replenish, one that I KNOW is safe during chemo for those of you who are still doing chemo, COCONUT OIL!!! It's amazing. You can use it as a lubricant and also chill it and use it as a vaginal suppository.
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Twin yep that is what I use it works wonders.. And freezing it makes it easyer to use.0 -
I think a lot of people don't like Replens because it can cause a nasty discharge, that I think is the sloughing off of the old tissue. It eventually passes, but gross for a bit.
I also use these pretty often and they make things feel good in the garden. http://www.drugstore.com/carlson-key-e-suppositor...
Football nut-ask your doc for a different med. I don't do well on hydrocodone, but Endocet works for me. It does make me tired, but not dizzy or nauseous.
Moon-Nice quote but I thought Rodney Adkins said it! Bahahaha
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TwinMamaHeather I too hear wonderful things about coconut oil but since it isn't water based there might be an issue with bladder infections especially on chemo/or just after. If you decide you want to try while on chemo I would first check with your onc first. I was told to stick to water based… but I know some of my friends say the coconut oil is the only thing that works for them.
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I've seen a few others recommend coconut oil.
Fluff, are these used the same way? Both before sex and periodically to keep things from getting too dry?
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Rozem, somehow I missed your earlier post. I had read that ova supp + Al was better than ova supp + Tamox. I feel like I'd be taking a big risk with just Tamox. That I need to do something additional to get the estrogen lowered. I'm hoping the SOFT trial comes out before I have to start something.
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mommaof3 - just remember (and this is what I keep telling myself) thousands upon thousands of pre-meno women have been on tamox alone and have done fine...yes, there are always studies to try to improve survival and this is fantastic but doesn't mean that the "old way" is not going to work for you. Plus I did ask my MO the question...if the studies come out that ova suppression is superior and I am 2-3 years out ( this is b4 I started suppression) is there still a survival advantage to starting the ova suppression then? she said YES. So even if your MO decides to start you on tamox alone and the studies show a big advantage you can do the shut down then.
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Hi All!
I love my MO!!!!! Here is my update;
Today at
8:15 I was at the hospital for my appointment with my MO and his Nurse -
Angel #2. I was in such pain this morning having woken up at 2:30 in
the morning for yet more diarreah which has just about ripped me open
and left me with a burning stomach and more pain elsewhere.In
walks the Dr. I start to cry and he hugs me. I open my diary and tell
him the hell that I have been going through - trying not to cry.... I
felt like a little girl talking to my dad. I told him everything. The
aches, the pains, the constipation, the diarreah, the minimal eating and
drinking, the percocets. Upon review, the pains really kicked in last
Friday night. I told him that I had lost 5 pounds since Saturday and
that last night my temperature spiked to 100.4 for approx 2 hours last
night. He listened to everything - did a physical exam; asked a few
questions. My hubby said that the Nurse had tears in her eyes.He
explained that my body was reacting negatively to taxotere. He
explained that he would have me feeling like myself again very soon. I
even asked him if I was going to die. He said absolutely not. I was
sent upstairs to the chemo area with an order for an IV. When I got to
reception, I lost it and just started crying. I was in so much pain. A
Nurse held me for atleast 10 minutes, then rocked me and hummed to me.
Then I cried even more because it made me feel like a little girl with
my mom.Once they calmed me down, they took me to a stretcher,
gave me warm blankets and I was put on a 3 hour IV of fluids, a bit of
morphine and zantac. They also took some blood. I slept a bit, ate a
bit and was told that I would also get Home Care for the next 3 days so
my port was left active. My hubby wanted to stay with me but I sent him
to work. My girlfriend picked me up and we went out to eat. TO
EAT!!!!! I felt approx 80% by that time - I had half a veggie omlette
with some potatoes and white toast with strawberry jam, apple juice,
water with lemon and a green t. That was at 2:00 and I haven't run to
the bathroom yet!!!!!!!! I was told that I should take a percocet every
6 hours and that I should be at 100% before the end of the weekend.A
week from this Tuesday, I will meet with my Onc to discuss how my last 2
chemos will be managed. At this point, he anticipates that I will be
given taxotere weekly with the herceptin still being every 3 weeks.
Weekly! Ugh!!!!!The Nurses were awesome, my Onc was awesome - I
can't believe how much better I feel in such a short period of time. I
swear to you that I was ready to die. I couldn't take anymore agony!Now
I look back and say why did I wait so long? My answer - I always
thought that tomorrow would be better - that I had to endure a few days
of hell. I would wake up feeling a bit better then get kicked in the
teeth later in the day. Plus I dreaded the possibility of having to
have an active port and to be hooked up to an IV. Well, it happened
anyways!!Thank-you to all for holding my hand, giving me hugs and
for sharing your kind words and sentiments. I might not be completely
out of the woods yet, but am getting there!!!!!Thank-you all!!!!
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OK now you have me in tears. I am so happy you feel better. I didn't realize your onc didn't know what was going on. They aren't evil people even though they prescribe chemo
♥ ♥
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Hi everyone
Oh FBN I'm so sorry this has been so hard on u, I guess I assumed too u'r Doc knew about it, but really they do try help help any way they can whatever is going on. It does make me laugh that u went out to eat so u have to feel better---good for u. It'll be over soon. And u'r Dr. and nurses sound wonderful that's a big plus.
Hope everyone is having a decent day.
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FBN - big ((((hugs)))) I had hoped you wouldn't react to Taxotere like I did, but it seems you are following in my footsteps, you poor girl. It's good the onc knows now what's going on. Don't panic about weekly - it means you'll be getting a lot less of the dose, and that may make it more bearable for you.
Don't forget the flushable baby wipes and cream (anything that's a baby's nappy rash cream) will help the burning when you go to the toilet.
I'll be with you every time you go in (I'll be in your pocket lol) I know too well the dread of having to go in and go through all that again. Hopefully the weekly dose will be easier on you.
More ((((hugs)))
Trish
xoxo
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FNB, so glad you feel better. i almost give up on my first texotere (TCH), my first one was the hardest n i faint on my first one. I hope weekly dose of taxotere will work for you.
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So happy you are feeling bettet FBN! The fluids helped me so much last round. I've been scheduled to get them for all my remaining tx. The home care sounds awesome, what will they be doing for you?
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FBN, you sound so very much like me after my first (and only) treatment with taxotere/carboplatin and herceptin. I was treated on a Friday, felt fine on Saturday, but wired on steroids (I didn't fall asleep until Sunday morning at 8 a.m.) and then the sh!t hit the fan. I got the big C, couldn't stop vomiting, kept drinking water and taking the oral anti-emetics, but nothing stayed down. Each night I crawled into bed thinking "tomorrow I'll feel much better". I think we all have to absolutely negate that thinking during chemo! Go get help! But live and learn.
On the following Friday I finally spiked the fever of 100.4. I called the cancer center and they said come in, we might admit you. I was hooked up to saline immediately, given all sorts of IV anti-emetics and fluids and admitted to the hospital within an hour.
My buddies visited me over the weekend, and I knew I was bubble girl, but I wandered down to the gift shop with my friend Jane because they had one devoted to BC. I walked in there with my pole, my very stinky self and my dirty slippers and took one look at the lady behind the counter and she came out and gave me the biggest hug. I just sobbed. She told me she was a BC survivor over 10 years out and that she volunteered to help others with the disease. I told her I couldn't let them give me any more of this toxic crap! I smelled like metal, I was so sick and so tired and almost didn't care if I died. And I'm basically shy of strangers. Here I was hugging one and sobbing.
She and I and my friend Jane sat and talked for a long time in the little gift shop lounge. She was such an angel. She told me the best thing I could do was express my fears to the MO and pray that he changed my treatment plan, which he did. She said we have to speak up for ourselves even if we feel we are being treated by the best. It was cathartic. I felt so much better after talking to her and crying.
So let it all hang out. You are almost done and we are cheering you on. And I understand all of the emotions. When you feel so dang crappy, you just need to let everyone know. I don't think I've ever felt as vulnerable as I did sobbing on that wonderful woman's shoulder.
Oh, and she told me if she could, she'd sneak me a nice bottle of chilled chardonnay with the cork pulled into my hospital room. I told her that would definitely be better than the potassium shots the nurses were giving me every few hours. I should go back now and give her a fine bottle of wine as a gift!
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pbrain - angels come in all kinds of forms, don't they? Sometimes where you least expect to find them.
football - sounds like you are turning a corner - hope things continue to improve from this point on, it sounds like you have been pretty miserable - soon you will be in the home stretch.
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FBN. Hugs. I hope the extra fluids help.
Pbrain, the angels are out ghere. And don't they seem to come when you are at the very bottom?
Much love to all.
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FBN, I'm so glad you're feeling better!! Hopefully the weekly dose will be much easier on you.
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FBN, ((( Hugs))) So glad your feeling better! Hang in there.0 -
FBN, so sorry it has been so awful for you, but so glad you are feeling better!!!! Yay! I specifically remember my low point - sitting on the toilet at 3 a.m., stomach on fire, etc., etc. I had been up all night and was in complete misery with none of my meds relieving my symptoms. At that moment I decided I would rather be dead than go through any more misery. Thank goodness my symptoms improved enough to get me though the next day, and the next, and the next. It is just one day at a time. So glad you have such a wonderful doc and nurse. Makes a HUGE difference.
{{{{{hugs}}}}}}}
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FBN my friend - so glad you finally saw the MO!! I was worried about you as you know!! So glad he is going to do something to help with these reactions. Maybe weekly taxol will be better than taxotere? But - can you do taxol and herceptin at the same time? For some reason I think not but someone here will know I am sure. I hope that today is better than yesterday and that you are starting to feel like the super hero that I know you are!!
Although I still am having difficult SE this round the reduction in my dose has helped with some of them. Besides the fact that I am totally exhausted, have a constant mid backache and my stomach is constantly serenading me with tunes I have never heard before - I am doing ok. I hope the reduction in my dosage also causes my liver enzymes to improve somewhat. I don't care if they return to normal, I just don't want them to continue to rise - so stable or a reduction will make me happy. My MO decided that I didn't need the neulasta shot this last go around - not a good decision. I know why he did it - my ANC and wbc were always high the whole time between treatments - sometimes very high and I think he believed that my marrow would produce enough on its own to keep me in a safe range. No such luck - on Tuesday I was too low and had to get the neupogen shot and I had to get it again on Thursday and have had to go in for a CBC every day this week ugh. Beside the inconvenience and getting stuck and shot all the time this is costing me in copays big time. Instead of paying for one blood test and one shot I now have had to pay for 4 tests and two shots this week - does not make me happy . I will not be allowing him to decide that I should skip the neulasta again. This situation on top of other stresses has really made me depressed this week. I have cried at least once every day this week.
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