TRIPLE POSITIVE GROUP
Comments
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kathec
YW! I didn't even know what peripheral neuropathy was till I was more than halfway thru chemo & found the forum.
Very important for you newbies to keep track of ALL symptoms. Most are very common but still noteworthy. I encourage you to keep a diary which I did NOT do! Tell your medical team about them. Some of the long term side effects can be lessened and even eliminated if they are tended to early enough.
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Ashla, do appreciate your links. I do walk, but running is out of the question for me.
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honeybair
So glad you find them helpful !
Just want to make it clear.. I am not a researcher .... Our PBrain is the Doctor researcher.
I just read a lot and when I find something new or particularly significant , I share it.
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Vettegirl-best gift my husband ever picked up for me was a tall, thin, rotating fan with a remote. It is about 3-4 feet away from the bed and blows up and down the length of the bed. Such a lifesaver. My flashes are the very worst in the day as far as drenching goes, but night is just hot.
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I get the hot flashes day or night. The worst are the sheet soakers. Our ceiling fan is on, but it is still reminiscent of Karate Kid.....covers on, covers off....I did not realize that hot flashes are physically obvious to others. Found out the other day while waiting for rads. The rad tech took one look at my face and laughed, she told me she was going to ask if I needed a warm blanket and quickly realized I didn't need one at that moment. She came back to check on me a couple minutes later and was surprised it was still going on. Luckily it stopped before my treatment. I could just envision the table tilting up and me sliding off it like a greased pig....
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Oh Robin! Every now and then I get a hot flash like that. All over my body I get a fine layer of sweat. Back of the hands, elbows, all the weird places. That's how I know it's a hot flash and not a fever type sweat. LOL. My hair looks like someone poured water over it. LOL. Fluff, that's one of the reasons I have that type of fan too. The remote is the most important part. On off on off on off . Yep. But i like the tower fan -it seems to be quieter.
Much love
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robin- my co-workers could always tell also. My hair was often up in a clip or ponytail and my ears turn neon red during a flash. I am in and out of the covers all night - I have become like Goldilocks - I need just the right pajamas, sheets, certain weight blanket, fan, pillow, drink, etc. I have learned to function with interrupted sleep and have adapted. I have been doing this since surgical menopause 13 years ago - chemo and AIs have not changed the rate or intensity of my flashes, but interestingly, eating a non-inflammatory diet has. I still get them, but not hourly as before.
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Question for you knowledgeable ladies. Round three day 5 for me and I'm stuck on the couch for the third day. I'm ok if I'm sitting, but can't stand up for more than a couple minutes, I get hot and wozey. I'm staying hydrated, blood pressure running on the low side. Any advice?
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Call your MO's office...
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Debiann- Sounds like you're dehydrated. I know you say you are staying hydrated but your symptoms sound so much like dehydration.. Call your MO maybe you need some IV fluids.. Just a thought. Hope it soon passes..
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debiann ~ It sounds to me like you are a little bit anemic, which would be totally normal at this point, BUT I would go ahead and call the MOs office to be on the safe side. If there is something that can help you feel better, there is no reason to keep feeling like crap, maybe the doc or nurses can help. Hang in there!
Hello everyone else! The family and I just got back from a BUSY weekend of camping, bday parties, and the pool and now it's back to reality and me worrying about dang breast cancer all the time! I know it should get easier with time, and that I just need to live my life and try my best to live WELL, but some days, those dark little thoughts still creep in. I do love coming to THIS forum though, and only THIS one because I find it uplifting. :~) Hope you are all doing well, enjoy your week!!
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twinmama, i hear you. i totally can relate to you. my kids keep me busy during the day and when i am lone that dang cancer will creep in here and there, but it will get easier that what i keep telling myself. i dont post much here but i love coming here, this is my favorite thread even though i am not triple positive. i love all the ladies here, so helpful and wonderful.
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that's okay, soriya! we love you here,too! you are our friend and ambassador from negative-land!
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Hey Debiann - sounds like anemia to me too, but I agree - call the MO - I am a bit anemic now after 3 treatments and I definitely can feel it. I am interested to see what my blood work says tomorrow on this issue. My chemo partner - who is one tx ahead of me at the center - ended up getting a transfusion after her 4th as she was so wiped out and never really recovered after her third. She felt great a couple of days after the tranfusion. I can go for a couple of hours and then I am exhausted right now and forget the walks I was taking as I can't really go around the block without feeling it. I am trying to eat all the good things to bring up my red count to see if I can raise it.
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Twinmama, read a little of your blog today. I felt the same way when I woke up every morning. It was like a nightmare that I couldn't wake up from. I still think about it every day but I have young kids too (twins + 1) that keep me busy. Question about your ov supp + Tamox. Did your MO say why that instead of just Tamox? I'll need to make a decision b4 the end of the year. I'm sure your cancer center is going to be so excited to see all those bags!!
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debiann I hope you called your onc. This is a SE worth the call.
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I don't know I only take tamox no doctor yet told me to ov supp or a hysterectomy. So kinda confused here because some on here say their doctors say to suppress or a hysterectomy.0 -
I am being suppressed because of my age and the high er/pr positive percentage I had. There are a few standards of care and OS+T is just one of them, now with the SOFT/TEXT trials that might change, when the full report comes out it may become the go to standard of care to suppress, or they may find that it makes no difference, which would royally piss me off! As far as hysterectomy, that is obviously irreversible and a serious surgery with serious side effects, which is why it wasn't suggested by my onc (I am not BRCA+).
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My current MO said he wouldn't suggest it either (hyst/ooph). I'm older than you but high ER/PR too. That would probably be the route I would like to take. I'm concerned about just taking Tamox only. Of course it's possible I'll be put into meno by all the chemo.
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Hi ladies:
Had my 6 month appointment with my onc today and all is well. My osteopenia is not changed so I don't have to go back on bone medicine (my stomach hates it). She thinks all my running is doing battle with the Arimidex (I hope so). Anyhow, I asked her about any links with Vitamin D and skin cancers. She was stumped and said she had never heard of it. She also stated that there really is no scientific evidence that low Vitamin D causes breast cancer but the studies are showing that those with normal Vita D levels don't seem to get breast cancer. Hmmm.
SpecialK: I talked to her about an immunologist and she completely agrees so I'll be seeing one and see if we can find out what thinks are causing all my skin breakouts (probably shampoos).
Once again she mentioned that 10 years is the new norm for hormone therapy. We decided not to worry about it because in a year and a half everything could change. For now, we think I'll switch to Tamoxifen. Boo!
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Momto3, I'm in Fishers! I love this area, so close to the city, great shopping everywhere, nice affordable housing, easy commuting. I'm chatting with my Mom about eventually moving down to the Jersey Shore, and I know I won't be able to afford much compared to here. We'll probably have to live in a shack.
As for pot, I did wish I could find it, but I'm not friends with any old hippies. I would have made brownies. Heck if it had helped me with the nausea, I suspect I wouldn't have had a hospitalization. tee hee...And on dairy, I'm beginning to think more and more about the estrogen found in the non-organic. Why not, give cows estrogen, they'll make more milk. I've always been a major dairy consumer, but I'm beginning to think it isn't so much low fat we should worry about, but organic. I know estrogen is a fat (lipid hormone) but if it is in the milk, it is probably still in the low fat products too.
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I try to do all my dairy in organic form now. Butter and milk definitely. Cheese sometimes, but I don't eat that much of it to worry too much.
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I try to mostly eat organic dairy but for some reason, I must have my ORANGE cheddar. Nothing organic about orange dairy product...!
I'm coming up to being on tamoxifen for one year - I don't have too bad hot flashes but I've been on effexor for years anyway. I do have the hot nights and I just set up my new fan from costco with the remote. I don't think I'd be getting very good sleep this summer without it. The air-conditioner goes in the baby's room... Who, by the way, is graduating to the toddler room at daycare next month.
I was diagnosed when she was at 18 weeks gestation. Now she's just a blur in motion!.jpg?1403583908)
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Debiann-hope you followed the advice of the wise ones and called your MO. Some docs routinely have patients come in the day after for fluids. I kept my port accessed and ran a couple liters in following my infusions-I am a nurse and work in a health science center. Everyone I work with has initials after their names-so it was easy for me. I did it after each and every infusion-because I could not keep anything down. Tried every drug available exept pot. My MO declined-snivley little rat.
Twinmama-your hair is just precious and more precious! I still have the chemo curls-which I kind of like. It is thinning-am hoping it doesn't completely shed the 4th time. Feel like a snake have shed so many times.
Saw the cardiologist today. He wants another ECHO. Apparently going from the high 20s to the low 40s does not suit him as a complete recovery of the LVEF. Had the last ECHO 7 months ago-so if there is an increase he might consider weaning off @ least some of the drugs. He, being Davie Downer, pointed out I remained short of breath. I pointed out he would be also if he had gained almost 30 pounds and his mitochondria had rolled over and was playing dead due to a drug he had to take to stop his boy juice completely. Because the drug I was on was doing just that-all my girl juice was essentially gone, mitochondria not playing at alll, skin, hair, and all parts drying up like the dust bowl. And I liked being a girl (not intential use of Sound of Music).
He was interested in the use of metformin for the prevention of recurrence and asked for peer reviewed journal articles-of which I will provide. And the same for the use of BP meds for prevention of nightmares for women on Femara. Considered telling him i was not his personal medical librarian-but now I have his personal email.
I found a perfect little sign for my office "Walk the Plank". In case a pirate ever appears and misbehaves. And the Target ad this week has pirate birthday plates, etc for children. I plan to purchase a supply. A pirate would just add so much to my life. As would a wife. To do things.
My (%&%%$)* of an ex-husband is still unresponsive (alas alive but unresponsive) to my requests to finalize the property settlement. The text @ the beginning of June was he was too busy getting married. That fell through. Go figure-attempt # 3 or 4. Maybe 5. They may stay engaged. Bless her heart. Want out of this house and away from any remnents of his DNA or worse. Still have the offer to may attorney to pay extra if I get through this without having to see him.
Have spent another w/end glued to Netflix. Rewatched Season 1 of Orange...New Black. Despite an overkill of lesbian sex the writing is spot on darn good and acting even better. Went back to Season 1 to help me fill in what I did not remember from last year when i was in the midst of so many more drugs muddling my brain. And that made Season 2 even better. So good. And read The Leftovers in about 4 days. Series starts this w/end. Not a Left Behind book (or at least not from what I remember of reading half of the first left behind book). Very nicely written, fast, good story line. Will be a good series. Went well with a nice scotch or a beer with an interesting label.
Off to bed for another night of insomnia. Would so like to kick insomnia to the curb or at least figure out which drug is the cause. Benadryl does not help. Melatonin does not help. Alcohol does not help. Boring reality TV does not help. I even tried Honey Bo Bo! Really boring medical articles infused with stats do not help. My eyes are bright and almost sparkly. I hesitate to try a script sleep drug. Would be one more drug and a worrisome drug-do not want to worry about addiction on top of my pile of fun medical epizudics.
Much love.
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My LDH is almost 4000
has anyone here had it this high? 0 -
Marlene, your daughter is adorable. I remember following your journey being pregnant with BC. I am so happy that she is healthy and beautiful!
SpecialK, thank you for the link on organic foods.
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SusanHG123
I woke up in a funk and you just made my day! Thank you. Thank you!
I hope you... Or someone else in the forum is saving your posts. So mad that I didn't think of it sooner. You bring such a delightfully hilarious attitude to decidedly undelighfully unhilarious subjects. Put the stuff together for a book. Need an agent?
Seriously.... Hope some of your side effects start improving . Sleep especially is a biggie.
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SpecialK - I read that article on organic foods vs nonorganic. It seemed to have an overall theme that organic foods really don't make a difference. My gut tells me that just isn't true. I've been eating organic meats and eggs (and produce when possible, growing my own is the best!) since my diagnosis. This article does kinda make me wonder if I've been throwing my money (ouch) down the drain. What is your take on it? I'm still not convinced even after reading it...still want my organic, even if it is expensive. LOL
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