TRIPLE POSITIVE GROUP
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Swimmon,
I had the Ooph. It took exactly one week before I was back to a routine at the gym....lite on abs....but at 2 weeks I was cleared to go all out.
An Ooph is much easier to recover from than a hysterectomy.
My hot flashes didn't get bad until I had the Ooph. I was 43 at the time, (last year). I won't complain about being in my 40's EVER again...lol.
Today I am as young as I will ever be again...
Anyway, the biggest SE so far for me, short term, is vaginal dryness, or atrophy. I use DHEA to help relieve it, but sex is still painful. Though much less so now....
Gone are the days of a few sultry looks, a couple quick kisses, and then down to business.....
Now it takes time.....time, time, time.
And I am an impatient person!
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Cypher!!
WOO HOO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
So happy for you
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Lago
I'm meeting w the onco again, but need to give my sister and husband an idea before hand. Especially, my sister feels the need to help me but I'm usually very independent , so we'll have to see how that plays out. I think like many of you, needing assistance is very alien to me. But I'm realistic.
They are also giving me steroids for the possible allergic reaction. I usually get very hyper and can't sleep or eat on steroids. Did any of you have any reaction? Otherwise I'm prepared for fatigue. And are they any se to neulasta?
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YYYAAAAYYYY CYPHER Great News Love it.
Shasha whatever mentally makes u comfortable do it---But normally (especially with Steroids) u feel pretty good the first few days, in fact I went to work the nxt day for 12 hrs. (excess energy) So normally u really don't need anyone--I always went alone and came home alone and I was fine. Now u might get SE after the 3rd day then u see what or who u need, but normally that day is fine.
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Shasha,
The steroids will keep you up at night. You may want to ask for a sleep aid. I took Ambien.
Remember to start drinking lots of water the day before, the day of and for at least two days after. You will get Benadryl with chemo, so that's why they want you to have someone to drive you home. (I didn't accept it after my first tx because I liked to drive myself to and from chemo.)
Neulasta causes pretty severe bone pain in some women. If you take claritin 10mg a few days before and during the first week of chemo (I take it everyday anyway)...it is said to help reduce pain.
I used frozen peas during taxotere. Simply held them with the tips of my fingers to try and reduce/delay neuropathy.
Thinking about it is much worse than actually getting it imo.
Also, you may want to start keeping a food diary/journal for two reasons. First, to ensure you are getting enough protein (VITAL!) during chemo to help your body recover. Second, when you start retaining water, you'll be able to look at your journal and determine if the weight is from real consumed calories, or just bloating. (You may not think this is important now, but once you see that scale jump 5-10-15-20 pounds, and lose your hair, trust me, you will be ECSTATIC that the weight isn't "Real." 3500 calories is one pound. I used fitday.com (free) during tx to track calories.)
Just so you know. I worked out after every tx and daily. I didn't have any down days, or laying around on the couch days. Chemo is doable. You just have to make up your mind to push through when you're tired and to eat protein even when you don't want to. Discipline can go a very long way in minimizing SEs.
Hope that helps.
Also, you will likely get constipated from all the anti-nausea meds. I started taking the tablet form of Milk of Magnesia (MOM) the day before tx and kept it up for 4-6 days after...at least until the anti-nausea meds were out of my system.
Also, you might be tempted to skip the anti-nausea. Don't. Take it round the clock just as the doc prescribes. A few women here didn't have nausea, but I believe more did than didn't. And if you don't keep it under control, it can escalate quickly and cause SERIOUS problems.
Hope that helps
I'm sure others will chime in too....0 -
Great News Cypher !!!
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camillegal
Thx, good to know. Several friends want to help and I keep saying I have my sister who's helping me with the cold caps and I should be fine. I'm also entitled to acupuncture and other integrative programs. So I'll definitely do that as well. You were able to work the next day... that's great. I told them I'm playing it by ear. I also can do a lot of work from home, so its a not big deal. thx again
TonLee
Thanks you very much A lot of very useful info. Never took sleep aid before and now for this wow!
I had a feeling the steroids would be a problem. Will deal with it. I'm doing a home made energy drinks now. Will ask the Dr & Nutritionist what I have to cut out. Now it has kale, spinach, blueberries, orange, strawberries, red pepper, red grapes (it changes a bit each day) but I'll do the food journal. When I asked the onco about the weight gain she said it shouldn't be so bad. Maybe 5-8lbs. Which is alot for me I'm, 5' tall. I'll take it one day at a time. thx a lot for your info I'm saving it in my med file. I was nervous about exercising but maybe it was in my head that the chemo was going to make it too hard. thx again
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TonLee: I guess I'm the exception. My BMI is 22 and I'm not overweight and I dealt with very few hot flashes when I went through menopause and Arimidex is not causing them either.
Shasha: Everyone deals differently with the steroids. I took mine twice a day day before, day of and day after and was given in my infusion during chemo so I didn't deal too much with all the hyperactivity. I was told to not take them after 4 pm which worked so I slept (well as much as any of us sleep while undergoing all of this). I actually lost weight during treatments because I had to force myself to eat - nothing had any taste. So again, everyone is so different and you'll just have to see how it all works out for you. I too did the cold caps (the ElastoGels) and it makes the time go by by quickly and they work!
Best wishes to you and remember we are here for you with our experiences.0 -
shasha - go through one chemo to determine if you are a constipation person or a diarrhea person. I was the latter and if I had pre-medicated for constipation things would have been worse than they already were!!! Hopefully you will not have either but I just wanted to give you that heads-up! I did not do the before/during/after steroids until half way through chemo - I used the insomnia to prepare for the following few days when I might not feel like doing laundry or cooking. I cleaned the house and paid the bills, etc. That way I had nothing on my agenda that needed doing if I was not feeling 100%.
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Good evening gals, We are being walloped with a big snowstorm. Cozy in our home!
Cypher, what wonderful news. You must be so relieved!!
Shasha10, re: the steroids, I found that I was the Energizer Bunny while I was on them. I, too, was told not to take them after 2:30 p.m. so that I could have a chance at getting some sleep. . . and I did. My MO also told me that they make you hungrier than normal. Knowing this, esp. when I was craving empty-caloried carbs, I just ignored my "hunger pangs" as I knew they really weren't even hunger pangs. I iced my hands and feet while taking Taxotere so that I would not lose my nailbeds. The ice treatment works. I had significant bone pain from Neulasta during Days 3-5 after the injection. I tried to tough it out, but my MO gave me a prescription for Percocet and on the very few occasions I used them, I was able to rest through the night. I drank 2-3 L of water daily, took a probiotic daily, to help avoid constipation, and ate prunes and drank diluted prune juice (diluted it with water). No problems with constipation. I also tried to exercise, but as the treatment progressed my workouts became less strenous. Good luck. You can do it!!!
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Good Advice SpecialK. Thanks for confirming about Dr. Cox. I have a friend who went to him and loved him. Who is your oncologist? I have a friend now dealing with this journey. Thank you!
Gratitude - I'm one of those who had no SEs from Neulasta...it was totally my friend! I'm so lucky because I was expecting it to be like the SEs from my first chemo treatment where every and I mean every bone in my body was in pain....fortunately, that was only the first chemo. I did the ice packs for hands and feet too....more painful than the cold caps but so worth it! Stay Warm Gratitude.
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Sasha, best advice I can give you is definitely take the anti-emetic drugs freely...on the second day you might be like me and feel good, but take them anyway. I didn't and I could never get ahead of it after that. So I had my first (and only) TCH on a Friday and felt fine on Saturday. I remember telling a bunch of neighbors that I felt just fine while I walked my dog. The next day I started vomiting, so I took a zofran. It wouldn't stay down and I could never get ahead of it again, so I ended up in the hospital for 5 days. One other thing, if you get like I did, call your chemo center. They'll take you and give you IV fluids and anti-emetics. I so wish I would have done that.
Congrats Cypher!!!! Fantastic news! I love seeing the good stuff on here, lets me know we might actually all be a-ok!
So chemo drama queen that I am, I had my 10th weekly taxol today and am feeling good, hemoglobin of 10 since my blood transfusion, but I have a big worry. It feels like my finger nails might be ready to bolt off of my hand. Not all of them, but some of them. I want to cry! They seem to be breaking down at the nail bed. But my favorite time of the year is looming. If I can't garden then I just can't be.
Any thoughts? I know I should have iced during chemo, but it seems I didn't see this side effect until about a day or so ago. I have these healthy nails and then this weak crap down at the nail beds. Oh welll, I guess I can wear garden gloves, but I swear the joy of gardening is honestly digging in the dirt!
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OK, weird question for everyone. I've been doing chemo since late November and I have been "cured" of chronic dry eye by the treatments. I haven't used my topical cyclosporine (restasis) for months. So last night I walked my dog over to the vet because she seems to have an ear infection. While I was sitting in the exam room with her, I started reading one of his posters about good dog oral practices from across the room.
It wasn't until I got home that I realized I had sat there and read the "fine print" without any glasses or contacts. I was about 15 feet from the poster and I could read it.
So weird question--has anyone noticed their eyesite improving with chemo? Is that strange? I asked my nurse at chemo today and she said it does happen...
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TonLee, I’m not overweight at all. I mean, I might fret over the extra 5 lbs or whatever but I’m not objectively overweight at all. I think my BMI is 21 or 22. So … I don’t know. I hope my periods aren’t coming back
Thanks everyone! I’m very happy about it.
Sasha, I concur, you will be fine. Usually you feel the worst a few days afterwards, not the day of. You may not need neulesta – I made it all the way through without it and others do as well. Eat lots of protein, drink lots of water, force yourself to exercise (even though your limbs will probably feel kind of leaden). The steroids made me really edgy for a stretch, but not the whole time. Try to take them earlier in the day and a sleep aid is a good idea, though I’m not a fan of ambien. The cold caps do make you more tired just because it makes it a really long day, but IMHO totally worth it. I lost a lot of hair but I still have a full head of hair. Oh and probiotics – I also recommend those. I had minimal SEs and not too much GI stuff. I was a disobedient patient and didn’t take my anti nausea meds and I was fine without, but I don’t recommend it for the reasons stated just above by TonLee.
Pbrain, you are NOT a chemo drama queen, you’ve just been one of the unlucky ones who has had a lot of SEs. I don’t have any advice for you about the nails, but just to remind you that it’s early February and it will probably be quite awhile before you can dig in the garden. And there are always, like, tools and stuff. I’m terrible – like you are I think – and do stuff with my bare hands when I should be using gloves and a spade – so do as I say and not as I do I guess! That is AWESOME about the improving eyesight! Now that’s a good one for you. My eyes got worse. On the other hand, a plantars wart I had on my toe for I don’t know how many years finally went away. Oh DAMN! It looks like it’s coming back! Well hopefully the chemo did a more thorough job with any stray cancer cells.
I have a weird question – any weird smelling pee? Like asparagus pee, when I haven’t had asparagus, or a kind of tarry, burnt smell. Intermittent. Maybe it’s from the drugs?
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Pbrain, I never heard of eyesight improving, but it's great that something good came from chemo, even if it's only temporary. I had my teeth cleaned within a week after finishing chemo, and the hygienist said my gums were in great shape, better than usual. she said she often sees that with people who have had chemo, so apparently it does kill off some bad oral bacteria.
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Cypher, my pee smells weird after I get my Herceptin infusions. I've been wondering if it's the Herceptin or maybe the port-flushing stuff they use - heparin? The smell only lasts a day or two.
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My pee smells, too! Thanks for bringing that up! It was a question I had forgotten to ask my nurse. Same time frame, too. Couple days after treatment.
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Has anyone started on the every 3 week protocol for Herceptin? How is it going?
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Waitingfor the next step.. I had my last herceptin wednesday. I had no issues at all. I got my herceptin and then on with my day. Now at the end I do have some fingernail problems,my nails are very brittle and the top layer is pealing off on some of my fingers,Oh and my hair regrowth has been slow,I am told now that I am done with herceptin it should start to grow faster.. Hope you have as easy a time as I had. Best wishes..
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Thx everyone for their in put. I'm off to work then to Florida to visit my mom and walk on the beach. When I return the fun begins
You all are really great!!
Thank you all so much and good luck to everyone!!!0 -
Sasha I had no issues with steroids. Loved them because they kept the edema down for me. My face looked great since I have a long face. Just puffed out those commas around my mouth a little bit. I looked younger… the new Botox. I hope you have the same experience I did.
Women have this issue of excepting help. You can't do it all and when it comes to treatment don't feel bad about reaching out or letting those who really want to do something for you do so. Even if it's just bringing meals and cleaning your house.
I did get pretty serious back pain the first time from Nuelasta. I couldn't even stand up straight but not the end of the world. I was taking Zyrtec per oncs orders so I couldn't take Claritin too. Narcotics make me feel icky and constipated so I ended up taking Aleve (asked my NP first) and that help take the edge off. The first one is the worst. The other 5 were minor but I did take Aleve for a day or so.
MOM didn't work for me so if it doesn't work for you try Metamucil. It softens the stool.
I didn't have any nausea but I know the first sign of it I would have started popping the pills.
I second the exercise. You will end up being less stiff. Of course we all know that drinking/consuming plenty of non-caffeinated, not salty fluids is important. Yes soup counts.
Keep a journal of very side effect, and I mean all of them even if you don't think its important. Then bring it to your onc at every visit. Yes they really want to know. Things that I thought weren't a bit deal ended up being a big deal.
gratitudeforlife My parents live in Cape Cod Massachusetts. Spoke to mom last night but now the power. Cell phone doesn't even work. I tried skype (dad has an ipad) but all towers must be out. Stay safe.
Pbrain I had my eyes checked several months after chemo. My astigmatism is gone! My script did go up (reading only. Don't need for distance) but now I just buy cheap OTC readers at Walgreens. My ophthalmologist says this can happen with age because your lenses can change shape but I think it was chemo that did it. I had the nail lifting and every nail lifted, hurt and smelled badly when the oozed. I really hope you don't get this, or if you do not as bad as I did. My fingernails didn't start hurting till TX3 but my toes started to lift after TX2.
Teeth & Gums. I flossed every day and used biotene mouth wash during chemo. My gums and teeth had no issues after chemo. I still floss every day and brush with my sonicare tooth brush. Worth every penny it saves me at the dentist.
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cypher - YAY!!!
shasha - the trend I have seen from reading posts is most women are tired the day of chemo since it is a long day (and more stressful when doing the caps), but still wired from steroids and stay on a steroid "high" for about 2 days afterwards. Symptoms typically don't seem to start until maybe day 3, usually by day 5 and can last through day 8 (for most...we are all different, some have no real side effects).
My biggest tips? Get a prescription for a sleeping pill and take it - getting proper rest is essential for dealing with chemo side effects. Also, at the first sign of indigestion/heartburn, ask you doctor about perhaps a proton pump inhibitor. Reflux can get really bad for some (I had a wicked time with it, on like 4 meds for it simultaneously), but others don't have it at all. Just a heads up for you...cut it off at the pass if you do get sx.
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Waiting, I had my 2nd dose dense herceptin this week, after 18 weekly herceptins and I am thrilled to report no issues with it. I was actually nervous because the weekly herceptins made me very sleepy, and I had been telling the nurses to slow down the infusions to 1.5 hours--which really helped. I was afraid that the triple concentration would cause more side effects, but so far none!!! They still run the drip for 1.5 hrs and it works like a charm.
Sasha, the first TCH treatment should be very easy. If you are anxious, (as most people are), I recommend taking a xanax before you go. When I told the nurses I had taken it, they said they wished all first timers would take something because it is a scary and unknown situation, and xanax can really take the edge off. The first infusion will be long....between all the pre-meds and the chemo drugs, I think mine was a total of 7 hours. They run all the IVs slow to make sure you don't have any reactions to the chemo. When I got home, I called my friends and said this was a piece of cake! I don't know what all the fuss is about!! With the exception of constipation, which happened immediately from the anti nausau meds in the infusion, the SEs came about 4 days later. They are manageable, but as everyone has said, stay on top of things. For me, the SEs lasted a few days, and then I was ok. I was also able to exercize most days, and definately recommend staying active. It helps both mentally and physically.
Did you get a port? If you will be having weekly herceptin, in addition to the TCH every 3 weeks, you should definetly get one.
Good luck!
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Sasha Just met a gal 2 weeks ago from this board. She was scared to death of chemo. Was having panic attacks and everything. She had her first infusion this Thursday on my birthday. We texted back in forth. She had no issues except for some diarrhea that wasn't from chemo… it was from nerves. Might also be from her cooking because she said her husband had it too but he also thinks it was from nerves. He was really scared for his wife too.
She wrote the nicest thing on my facebook page thanking me helping her get to and through the first infusion. Made my day. Trust me most of us have no issues.
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arlene - Dr. Wright at FL Cancer Specialists
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Hi gals,
Pbrain, lucky you that your eyesight improved. Mine has been negatively impacted, slightly. Do you know if the improvement will be long-lasting?
A positive benefit for me, however, was great reduction in the amount of tartar build-up on my teeth. I used to have to go in for scaling sessions every 4 1/2 months, but I had my teeth cleaned in early Dec., 2012, and I really notice the absence of tartar build-up.
PatinMN, I, too, have noticed a weird "scent" to my urine after receiving Herceptin, especially in the first 3-4 days. I had to have my PORT removed (nightmarish episode), so it probably is not due to the heparin. As stated so often on this site, drink LOTS of water, and the "scent" disappears before you know it!!!
Waitingforthenextstep, I have finished 7 of 17 Herceptin sessions. The last four were given on their own, the first three were given with Taxotere. I, too, go in every 21 days. The only SEs worth mentioning are a drippy nose and tingling in my feet (neuropathy). Neuropathy is caused, for sure, by Taxotere, but Herceptin can also cause it.
Lago, belated happy birthday wishes. Two dear friends of mine also celebrated their birthdays on Thursday!!
A day after the snowstorm the city looks beautiful, as though a billion, tiny diamonds are embedded on all the tree branches. Very, very pretty. Roads have been cleared, and, ArleneA, we are all safe. Thanks for the well wishes! Poor Boston and the New England states. We received about 10-14 inches of snow, they got 36 inches---almost hard to visualize.
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My parents are doing fine in Cape Cod. No electric. They finally turned on their mobil phone and called. I thought the towers were down or something.
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Hey Sasha, I don't know what regimen you're doing. I started TCH on Friday, Feb 1. So here's my experience so far. Days 1, 2 & 3 I felt almost completely normal. I was still taking steroids and anti-nausea as preventive. Day 4, I wasn't taking either and was definitely more tired. Day 5 was the worst. I felt like a truck hit me. I was exhausted all day and a bit queasy. I didn't take any anti-nausea because I was afraid they would make me even more tired and I had to take care of my kids. If I'd had help that day, I easily could have slept for hours and I think I would have felt much better. When my husband got home from work, I went to bed for 3 hours and then back to bed maybe two hours after that. Day 6 was much better and it's been getting better daily since then. I feel good now.
I had the Neulasta shot Monday and did not do the Clariten. I will next time. The bone pain isn't horrible but it's bad enough I don't want to have it, mostly in my back and thighs. I'm taking advil for that and it helps. I have had some diarrhea the last couple days, but nothing terrible. I took immodium for that. I have not kept a food journal, but I think I will start. It will help to see if a diet change can help matters. I have actually lost a few pounds and don't really have my normal appetite, but I've been trying to keep eating small meals to keep something on my stomach and have been chugging water since before chemo. BTW, I'd recommend yoga pants or sweats when you are in the infusion room because you'll be going potty a lot if you drink enough water.
Best advice I can give is make sure you are able to rest when you need to. My mom is going to be here the full week after the next round so if day 5 (or any day) is as bad it was this time, she can take the kids while I rest. Overall, the SEs have not been as bad as I was afraid they would be and I'm feeling pretty good. I do have dry mouth pretty bad. The biotene gum and spray help temporarily. I did have a mini panic attack right before I sat in the chair. Had to go in the restroom and get my sh*t together. My BP was sky high when they started just due to the nerves. So taking an anti-anxiety med might be a good idea. I think I'll be more calm next time.Have a nice trip and try not to stress about it. You'll be fine!
-Susan
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On the eyesight subject, I asked the nurse at my chemo yesterday if there's anything I can do to help with my vision difficulties during treatment. She said to definitely not get my glasses changed because it is the chemo drugs causing pressure that changes the shape of the lenses (?) within your eye. So, I guess it's very possible that the change in shape can be a good change. Hope it works that way for me in the long term, I have terrible eyesight!
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Everyone thx for all this info. It all goes in my book. My niece who's into health food, called to tell me to ask for a vit C infusion during chemo. Has anyone ever heard of doing that??
anyway thx & gold luck
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