TRIPLE POSITIVE GROUP
Comments
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CINDY: Congratulations! Like you said many of us have already been through it, And each 1 of us came out great the other end, it just takes time. I too worked full time thru it all.
Just started Arimidex myself and already starting to feel the side effects. Only 6 days on the meds and I'm already having hot flashes, again. I'm 60 years old and I've already gone through menopause once. Here comes round 2!!!
Also talk to my oncologist on Tuesday. He's okay with my decision not doing the surgery. I notified my breast surgeon and my plastic surgeon, today, that we are cancelling the MTX and implants. Will just keep screenining every 6 mo. Get my port out the 14th, the last muga and PET in Sept., then I'm done!!!0 -
Scottie: I'm 62 and my port comes out on the 13th. Almost a year on the Arimidex and only notice the flashes when I do something I shouldn't...like HOT, spicy food or wine!
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Lago: Thanks for your normal positive comments which we so appreciate.
On another note, my cousin whom I mentioned several posts ago...well, I found out the tumor in her neck was malignant and I'm trying to find out what the official diagnosis was because she is a tad bit confused on it all....I so remember. Goodness, she had her PET on Friday and won't get the results until 8 Aug. Way too long to wait.
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I had a hyst/ooph 11 years ago - have had brutal hot flashes multiple times a day and night from the day after surgery through today - Femara and Arimidex have not increased or decreased them. They are just a part of my life, I have gotten used to them.
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SpecialK - 11years!!0
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Omaz - Crazy, right? My co-workers could always tell when I was having one and would start laughing because my ears turn crimson (and I glisten pretty seriously, ladies don't sweat, do they?) It is a good thing that we were all friends and I love them! I have given some thought to Effexor because I have heard it helps but I am not sure I want to add another med.
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Sol: I'm not familiar with that treatment but I bet someone here is!
Hey, anyone heard from TonLee? Maybe she is traveling home from TX.
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sol - if I had to guess it is because CMF has not been tested when combined with Herceptin. If you look at Genentech's website it shows you information on AC-TH, and TCH. Most docs are reluctant to use a drug combo that has not yet been researched or frequently used. This is the same reason it is problematic to find an onc who will use Herceptin without simultaneous chemo.
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Cindy....congratulations...only those of us who've been through it can understand the physical and mental strength needed to endure chemo! Way to go...
Soltantio..
Never heard of CMF....sorry no help here...
As far as anastroole aka arimedex.....after nearly one week so far notthing noticeable. I also failed menopause the first go round but I'm not feeling any increased hot flashes yet. The lashes felt worse during chemo .
I feel a bit more achy..especially my lower back....but that actually started during chemo and seemed to get worse while doing herceptin alone.0 -
cindy - yay for being done! And for doing so well during chemo!
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Hi ladies-
I've been taking a couple of hours and reading all your posts and joining in this group as I am triple +. I too saw that particular post about TCH on the other board and got very concerned as that is my treatment. I've had my first and next week will have #2. So far my SE are not nearly as bad as I had imagined just one day of round clock meds and sleep but really think I may not need that next time. I was just so scared that I would actually get sick and it would be too late to start the meds. So far my biggest compliant is a headache.
Special K- thanks for the link, I feel very confident that my treatment is best after reviewing it especially since my oncotype came back very high, it was 58!0 -
Swimmom1... we are neighbors : )
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Geewhiz-
Really, where r u?0 -
Welcome swimmom! I had the headache after tx 1 but not so much with the rest of them (TCH). It's always interesting to see what the oncotype is for HER2+. They didn't do one for me because of the HER2+.0
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I think it is unusual to do the oncotype when her2+ but my tumor was so small 8mm and was initially told no chemo then the Fish came back +. But i already had in my mind I was done after my surgery so my MO knew she needed to show me in concrete numbers that I needed chemo.
Glad to hear that about the headache! I am on day 2 of one now. My 8 year old has been running a fever since Saturday and he also complains of a headache,. I've been washing hands so much they are red and spraying with Lysol in hopes I don't get his virus. Been checking my temp once an hour as we'll and so far so good!0 -
Will pm specifics : )
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swimmom - welcome, sorry you have to be here - but we are all here for you. Also note that if you have been given Zofran as an anti-emetic it can cause a headache independent of any SE from chemo. Many of us had a headache on tx#1 and did not have as much of a problem with them on subsequent tx.
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Special K - wow...11 years...is your sleep interrupted by the flashes? That's my biggest complaint, but I, too, am resisting another med- so we'll see.
swimmom- make sure to moisturize those hands...if they crack open, you can get an infection that way. Mine got very red and cracked, had to put antibiotic cream on and moisturize heavily then wear socks over my hands until it resolved. Go easy on the sanitizer - I think that's what did it to mine.
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dance - hellz yeah it is, lol! I am like a mutation between Goldilocks and the Princess and the Pea. The sheets have to be just right, lightweight blanket, ceiling fan on, just the right pajamas, etc. Then I flash, so I am out of the sheet/covers, still hot if the pajamas aren't light enough, then the fan makes me cold, back in the covers...... This goes on all night. Good thing my DH is a sound sleeper. I really don't sleep very well but I have adapted to it enough to get through daily life. I do worry about the lack of sleep and its impact on my health though. I have been resistant to taking meds and since I have stepped up my exercise I have been sleeping better. Some of my daytime flashes (especially if I am out of the house) are severe enough that I feel light-headed, and I always have something to drink with me, especially in the Florida heat.
swimmom - Gold Bond makes a sanitizer combined with hand cream - not as drying.
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Thanks for the hand tips.
Special K- have you tried the Nite Sweatz pjs that have special wicking in the fabric to help with the hot flashes at night? A friend got me a pair to help me as I broke out in sweating episodes after my surgery due to meds.0 -
Lol SpecialK! You described my nights perfectly!.....but 11 years!!!??? Swimmom, do the wicking pj's work? And if so where do you get them?
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Specialk, sounds like we both do the same "cover dance". Ugggh! I also put a cold pack in my pillow and change it out for another cold one in the middle of the night. Misery.0
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swim - I have heard of them and wondered about them - I have been doing this for so long it has just become ordinary to me so I have not ordered any of the PJs but it might be a good idea. Did you feel like they worked for you? They also have special sheets that do the same thing but they are prohibitively expensive.
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swimmom - Are you getting the neulasta shot (neupogen)?0
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I get the Neulasta shot the day after chemo. Last time I had some bone pain and I took some Claritin.
The pjs seemed to help me. You can get them at
http://www.nitesweatz.com0 -
swim - thanks!
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sol - thanks for the tips! Unfortunately here in Florida it can be very expensive trying to get the house super cold! We run air conditioning all year round just to deal with the humidity. I am not a nightgown person because they end up around my neck! I usually wear shorts/tank top or cami style PJs and we have the ceiling fan going 24/7/365! CMF is considered a less intense chemo - may be another reason it is not used for us triple + people. I believe that it is often used for older patients, or those who couldn't tolerate the usual chemo regimens.
kayb - thanks for the SOMA info - there is a store right up the road from me. I get their catalogs because I bought a stretchy bra when I had TEs in, but will check out the sale items!
I know 11 years is crazy! I even had hot flashes while I was taking HRT. I always just took a high enough dosage to make them liveable but I will always wonder if I did myself no favors in terms of BC - I took estrogen only HRT, which they say is not as harmful, but you can see why I was taking it. Without it I had a serious flash every 20-30 minutes, around the clock. If you look in the dictionary under "hot flash" you see my picture, lol!
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I am having what I am not so fondly referring to as warm flashes - not hot and sweaty - but definitely warm and uncomfortable. I do the cover dance, and our A/C is set as low as it can cool and with a ceiling fan! We run air here in Ark from early March to October because of humidity (and the fact that DH and I are both hot natured). I do however have the entire bed to myself as DH snores and I toss and turn so he has been relegated to another room for the time being. Benefit of BC = being the one who gets the king size bed.
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swimmom - Hopefully since you are getting the neulasta you won't catch what your son has.
sol - How is the port area today?
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