TRIPLE POSITIVE GROUP
Comments
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Good morning all! I wasn't on over the weekend and had to catch up. Wow! Welcome to all the new ladies and as I always say this is a wonderful site! I have learned and laughed and gained and sought advice and will continue to do so! We all have a journey and it helps sooooo much with the input here.
MMay I am good. Thanks. I had no real constipation this time BM overt he weekend. Last night I was dealing with some nausea took Zofran and Compazine at bedtime and did well. This. Owning I wake up and I have mild diarrhea! CRAZY!
KateB79 I can relate to finding that balance.
Musosgirl I would have done a mastectomy had I known before I did lumpectomy that I was. HEr2+. I had mammo, lump found, did removal as my biopsy, went back in did lumpectomy and sentinel node biopsy. When surgeon sent me to set up radiation I found out then I was. HEr2+. Had MO appt scheduled for a week later. I was shocked. I am waiting for BRCA test results but am strongly leaning toward mastectomy when able after chemo without reconstruct. I am 52 years old. My MO looked at me the day I met him and said "you are curable if you do what I say". I try not to worry about reoccurring issues. The decision for mastectomy comes from not wanting to put my body through even more and I just don't want to have to deal breasts being toxic so to speak. I am not sure yet have a lot to study on about it but right now that's how I feel. Open to hear any suggestions advice in this area.
Does anyone else have nosebleeds? Mine started already. Lasts a few days I use Ocean and it usually goes away. They are not bad or alarming but annoying and brief!
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Gretagirl glad you are doing ok. I too have had some issues with nose bleeding. It started about a week after first treatment. I have been using the saline spray as well seem to help. Mine have gone away but I think it is going to be a reoccurrence after each big dose for me. Just keep the spray going my doc says.
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Generally, nose bleeds occur due to irritation of the soft tissue, combined with lowered platelets (the clotting factor in your blood), both due to the chemo drugs themselves. I would recommend that in addition to the saline mist that you put some Aquaphor, or other similar moisturizing ointment, on a q-tip and put it up each nostril and pinch your nose to distribute it around. Keeping the inside of the nose moist seems to help but continuing nosebleeds are common. If you have one that won't stop notify your MO. You may also find that you have a runny nose - due to the drugs, particularly Herceptin, and that when you lose your nose hair the runny nose can be quite sudden! The runny nose can also be drying so continue with the Aquaphor and keep Kleenex handy!
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Specialk thank you! I need to get the Aquaphor. Didn't know Herceptin would cause this.
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greta - the depressed blood counts are linked more closely to the actual chemo drugs and the runny nose more to the Herceptin. Since both can irritate it is hard to suss out what is causing what during the time period when you are getting all of these drugs together! Many have continued with the runny nose after chemo proper has ended, so that seems more attributable to Herceptin. I started using Aquaphor on my feet and hands overnight, and at the corners and underneath my eyes for irritation caused by Taxo-tears, the involuntary tearing that happens - by the end of chemo I was using it all over my face - I should have bought stock!
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I have been able to count on nose bleeds starting day 10 for me lasting about 9 days only if I blow too hard. Freaked me out the first time. With the Herceptin drippy nose tissues are always around. Per MO nothing to be concerned about so long as they don't last too long. Low platelets figure into this. I was assured that I didn't need to stop my nabumetone (nsaid) for this. QOL (quality of life) was more important. I was off of it for about 6 weeks during biopsy and surgeries. It helps somewhat with the bone pain due to the Neulasta.
Hope the aquaphor helps along with the saline nasal spray. Greta I will let you know if the H causes in when I finish the TCH in September.
Lost the extra fluid from the steroids and that has helped with the aches. Breathing easier too! ECHO is on Thursday. Been to Crazy Town most of the weekend.
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I had nosebleeds during taxol for the first time in my life..my nose was also very dry, someone on the boards suggested getting AYR which was a great nose moisturizer (over the counter)
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I think I figured out that the dark place I was describing earlier is the result of steroid use and withdrawal. Anyone else had mood changes on dexamethasone?
Also, WHAT IS WITH THE ACNE? I'm breaking out like a teenager. . . . Taxotere? Perjeta? Some combination?
Also, I just want to say thanks again to all who are here. You're making this much, much easier. I've always been a believer in collaboration--x number of brains is better than one--and this is no exception. Strength in numbers.
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Kate I have noticed the mood swings from the meds not sure if it is any one specific (I know all this pushes us into menopause as well so that will be another mood deal) but I did notice, after my first TCH, that I started to feel less "dark" as the week went on and have felt better since. Hope it stays that way.
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kate and mmay - the acne can be from the chemo drugs, but the more likely culprit is the steroids. The mood changes are a common SE from them too. Short tempered and crabby - "roid rage" of sorts. I think the more emotional feelings may be more strongly linked to chemopause and the hormonal changes.
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Thank you, JenPam, that's what I'd prefer to do if I can. It's worth a try!
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I broke out BAD after my first infusion. The acne was scary and painful. Every nurse I ask says its stress, but I think it's the chemo. 12 days out and it is mostly cleared up.0
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I read somewhere that clindamycin works well on acne for the TCHP cocktail. I asked my oncologist about whether she'd prescribe it and she said to wait and see if I need it and if I do, she will! I don't have flawless skin to begin with...
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I had problems coming off the steroids after every treatment. I would get real scared and jittery. Everything went back to normal a few days later.
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Thanks y'all for all the help. I will try the Ayr and Auqauphor. I have e been having waves of nausea and diarrhea all day. Just feel icky.
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I have an odd, slightly personal, and maybe TMI question.
My menstrual cycles have always been clockwork. Every 28 days, boom. And now ... Nothing. I understand that TCHP will likely put me into chemopause, but so quickly? (I was expecting my period this past weekend.) And given how menstrual cycles work, where does the accumulated endometrial lining GO if it doesn't come out?
Thanks in advance for indulging my elementary biology question.
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Hey Kate,
My period stopped but resumed within 4 weeks at the end. With a vengeance! I can't speak to where the lining goes except from what I remember, the lack of estrogen keeps the lining from forming. Like an 80 year old woman type thing.
Also, someone telling you to eat more cottage cheese? hahaha...Tell them they need to read the "China Study." It's an entire book devoted to why the protein (casein) in cow's milk causes cancer. That'll shut'em up. While I think food plays a role, I don't believe for a second that it's as primary as some of the stuff I've read.
Also, regarding the belly shot...lol. My Onc said "You're young, healthy, er, and let's just wait and see." 5 days in the hospital after the first chemo because I spiked a fever. Everyone in suits, omg, thought I was going to DIE of boredom. (So at night I ran up and down the back stairs to keep active.) I then took the shot (gave it to myself in the belly at home) every treatment after!
Hercecptin headaches are a real thing. I got them every single time...but my infusion time was less than 30 minutes.
I LIVED on FAGE yogurt while in chemo. You must not only keep up protein but GET MORE to offset the chemo destruction.
Lago, I do remember thinking I would get mets. And I won't go so far as to say I won't. Tempting fate and all that....
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Kate,
My period stopped two months or so after I started chemo. It did not resume after chemo (last chemo: 12/3/14), and now, I'm taking an ovulation inhibitor (Zoladex), so it's gone. I think that chemo and Zoladex interfere with the whole cycle and that the endometrial lining stops building up. That's just a guess by the way; my Ph.D. is in political science not biology!
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QUESTION how do we know the herceptin has done its job in killing the HER2? I don't think I am understanding this.
QUESTION the herceptin has to have the chemo to be effective?
I know I asked MO about this read through notes but can't make sense of what I wrote.
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ElaineTherese, my Ph.D. is in American Literature, so I'm right there with you.
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TonLee,
People come up with things to say/do because they want to believe that this will never happen to them. But, yeah, the cottage cheese thing threw me for a loop, especially given the studies on casein.
Here's hoping I don't end up running stairs in the hospital! I'm tracking my temp today through day 10 (nadir). So far, so good. Fingers crossed.
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So ladies I am not triple positive but 2 out of 3 ain't bad. Teehee. Hope you all don't mind my being here. I finished chemo in January. It was rough but you can do it. Just on herceptin / perjeta now and femara. As far as the menstrual cycle question, no estrogen=no lining buildup. BTW, my major was in health and physical ed. Masters was in Health Ed. Retired from 39+ years as a Health and Phys Ed teacher in NYC. Love, Jean
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Kate my last period was 2 weeks before chemo. Like you I was like clockwork. It took me about 2 years to stop looking for my favorite tampons on sale
zjrosenthal IMO if you are HER2+ and E+ you are treated the same as triple positive. You are not the only one here that isn't P+. Matter a fact I'm only 5% P+. Not unusual for us HER2+ gals to have low hormone positive percentages. My ER is only 30%
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Zjrosenthal welcome! May I ask how you got perjeta all year long I'm trying to get this my mo thinks it's overkill I say more the better
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Welcome zjrosenthal!! My name is Jean too : )
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Kate- I have been having some bleeding ever since my first treatment. It is minimal but there is always something. My last real period was a week before my first treatment. I as well got it like clock work. So I am glad you brought it up. I wondered to if it would stop that quickly.
I received a neupogen shot yesterday as my WBC plummeted. Did not hurt at all. The nurse warmed it for me and I had her give it in my belly as recommended on here! So far no pain knock on wood. I get another today. Had to stay home from work due infection risk. Bored...don't like sitting here with all my thoughts. Thanks again for the direction with the shot and well every thing.
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Hello compatriots! Between a rock and a hard place here. My tamoxifen vacation comes to a close tomorrow and I have a big decision to make. None of my choices are very pleasant, especially since I have 9 years to go.
A: back on tamoxifen and continue with the crippling pain, lack of sleep, inability to lose weight(up 45 lbs in 15 months), foggy brain(zero short term memory and inability to focus or concentrate) etc... and take even more medication to deal with above side effects( which in turn come with their own side effects needing medications)
B: ooph and AI - see side effects above and add osteoporosis (which I already have and is stable) <---leading to more treatment/medication (already failed orals)
C: ooph and stop hormonal treatment - not recommended by MO
stop hormonal treatment - least liked by everybody but meI have LOVED this break. Almost all pain has dissipated. I also recognize myself, I am back to being chatty and perky. I am able to exercise without painkillers. It has been a blessing.
Today I met with a rheumatologist regarding the pain issues. I kept the appointment because I know I will need this doctor in my arsenal when I make my decision. The medication he gave me will also cause me to gain weight, and I do not want to take it, but my options are limited by my medication allergies.
I really have no idea which option to choose. I am thankful that I am still vertical, but what good is being vertical if you are suffering from debilitating pain. Quality or quantity....MO feels that stopping treatment for me would be a when it returns vs. if it returns.
Thanks for letting me rant.
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Hi!
I guess I fall into category B (though I'm taking Zoladex instead of getting an ooph). I already have osteopenia, but otherwise, I suffer few side effects (hot flashes, moodiness -- addressed with Celexa). Have you tried an AI? You may not get the same side effects that you have with Tamoxifen. Moreover, some ladies have switched from one AI to another and have seen their side effects diminish. What percent was your tumor ER+? That would be a factor for me. (My tumor was 95% ER, 95% PR.) Best wishes for making your decision!
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Hi Robin, I'm not sure what you mean that you have 9 years to go but being that I'm a lifer, I would do whatever I could to not cross over to stage iv. Once you are a lifer you are give a 3-5 year prognosis and there is never a break in treatment or pain. Your decisions are really tough but I'm sure you will make the best decision for you. Hopefully the others can give you some guidance. XO
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Kate, my period was clockwork too, and my last one was just before my first chemo. Now it's been a year, with no sign of it.
Coming off the steroids was terrible for me - the emotional crash was awful. My MO worked out a plan for me to taper off of them, and that helped. I hated the steroids.
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