TRIPLE POSITIVE GROUP
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Wow Special K, I really hope this last round goes easy for you! I am going to protein like crazy!!!
Cotrinh76, good luck on your first TX the main thing is drink as much H2O as possible 2-3 liters if you can handle it. Also protein helps, ask you doc for Xanax to help with the steroid crash. Trust me it's better to sleep through it. 1-2 TX were not that bad but 3-4 were a doozy! Nausea with 3 and leg pain with 4 but everyone is different. Where were your mets? I am from Sacramento & one of
My bests is from Modesto! I wish you the best on your journey and your in the right place here for support and information. I would not have made it this far without the ladies on these boards.0 -
Cotrinh- I had #5 of 6 TCH yesterday!! It is no picnic but u can do it! I agree with nmoss- lots of fluids and protein!!!
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Hi Ladies:
Special K: You amaze me with your positive attitude and all you have been through. I'd probably be down in the dumps. Speaking of down in the dumps, any of you feeling all the teary stuff going on. I can't talk to anyone about happy or sad things or watch a happy/sad movie without breaking out the waterworks. Weird!
Waiting for the SEs of #4 to hit and glad this is the end of chemo. Arm getting better but now my feet are really swelled up. Onc said part of the arm swelling is possibly due to the port because it sometimes restricts the blood flow but she encouraages me to keep my port in as long as possible.
I was talking to a lady yesterday in the Infusion Room (me for my Neulasta shot and her Chemo #1). What a tale she had to tell. She has uterine cancer and it started out at Stage 1 but they operated on it without any CAT scans, xrays, biopsies, etc. By the time they got around to doing the other tests, she is now Stage IV and it has moved to the lungs. Boy, did I cry at that tale. This is her 3rd Cancer Center and I she has my doctor (a breast specialist) and will be in great hands even though my doctor specializes in breasts. Anyone see a lawsuit ensuing.
NMoss: Nice that you are done too. Hoping your legs begin to feel better soon. I imagine once all the chemo is gone, things will return to normal.
Day #3 post #4 chemo so tomorrow, my SE's should set it.
Have a great day everyone and those newbies, it will be over sooner than you realize now.
Arlene
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Does anyone know if you are highly positive Her2 positive, does that impact future occurence, or is it just a measure for what was surrounding the original tumor. I was stage 1, grade 2, but highly positive for HEr2. I can't find a lot of info on my question and forgot to ask the oncologist last week. One more chemo to go and then hercepting only!
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Arlene I hear sad (bad) stories everywhere. I really think there are docs out there that just dont take things seriosly enough to do the homework first.
When I speak with my children (who are on their own) and they ask how I am doing I get very emtional, mainly cause I just miss them, but also because I dont want to burden them with worrying about me. Getting teary just writing about it....gonna go take a nap.
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Just had my first taxotere to replace taxol and my fourth herceptin. Hoping for no really bad se's. Only2 more to go. My mo only gives 4 tx even though I am node positive. Did have 4 DD AC first though.
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ArleneA - I keep waiting to feel bad but it is not happening - I am just tired and a little achy but nothing too bad. I have just come off steroids, which I dragged out to make my PS appt yesterday. Maybe it will hit later, but this is 6 days post tx. Interesting. As far as being down in the dumps I was fortunate to be raised by parents with a pretty dark and ironic sense of humor - they could find it in the craziest stuff - it has really helped me get through this time. I have moments of sadness and frustration but I try not to go too far down the rabbit hole. I think it is time spent as a military wife too - makes one tough! I have an old friend, also a military wife, that battled BC 10 years ago and was diagnosed with a very aggressive uterine cancer a couple of years ago. She had treatment but it has recurred twice already. She has been so supportive during my treatment but told me just recently that she is now mets and stage IV but will be manageable for a while. Heartbreaking, and her gyn onc feels this cancer was caused by her BC treatment. Don't know why they didn't do a hyst on her years ago - she is a couple of years older than me. Her BC was aggressive too, all the more sad because she had to start chemo again and her oldest daughter is getting married this month so it should have been a joyful time.
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Rabbit hole is right! These reoccurrence stories are frightening! A person should not have to endure chemo multiple times. It breaks my hear and is scaring me to try to push myself through all 6.
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Man special k- did your friend have tamoxifen? My MD said that Arimidex doesn't have the uterine cancer risk (Nice to hear). I hate to hear that. Cancer is a brutal disease...makes me so angry sometimes...and sad alot.
I had one really bad day - one week out- a headache and backache that wouldn't quit. I think it was neulasta. Now I am feeling better. 8 days out from last TCH. I expected worse. The weakness is much worse, but overall way better than I expected. (If I had stayed like yesterday it would be awful- but 24 hours I can make it).
Thinking of you all. I am so happy TCH 6 tx are done. Onward and upward even one step at a time.
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Recurrence is a stressful thing. I was very afraid of that and the SE of all the different drugs. I originally was suppose to start Adrimycen 'red devil' but had alot of fears of it. heart problems,luekemia. But it has its advantages, its more aggressive. My old onc was all for it my new onc not so much. He said that my met was in one node out of 8 not 6 like i was originally told. It was a micro-metasis that was less than 2mm, which textbook lit considers node negative. He said my cancer is aggressive due to the her 2+ but like my old onc said also, as long as I get on herceptin she was comfortable with TCH. Also my new onc has had 20+ years at this and told me he has had 3 cases of patients he treated over 15 yrs ago now have luekemia from the' red devil and my old onc has had 7yrs exp so hasnt seen some of the results yet of her patients. They're both wonderful Drs. 'I'm finding the more opinions I get the harder the decision but the more info that I can use to base my decision on.
@LisaGH congrats on finishing your 6 rounds!
@nmoss1000, kriskat- Thank you, I have been drinking lots of H20. I've been eating as much as I can all day. I dont eat too much red meat due to all the research I did on how tough its on your body but I eat lots of spinach,broccoli, veggies and chicken, almond milk. Even when I don't feel like eating.
They gave me 2 days of steriods after chemo. Today is day after my treatment and I took a couple naps but I did an hour of tai chi. It was kinda hard, the movements are very slow compared to my weight training and kickboxing I did for years. But at least its something and its good after BMX.
Nmoss1000 I might know your bestie, I grew up here and its seems you either know someone or someone you knows someone
~ 'courage is not about the strength to go on, its going on when you don't have the strength'
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Hello ladies, I'm new here. I'm starting TCH on 6/30 and I'm so scared. I had a lumptectomy on 5/17 and the tumor was about 3.6 cm. I know people react differently to treatment, but what can I expect after chemo? how did everyone react as to hair loss, weight gain/loss, fatigue, etc?
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Aimska Welcome, but I'm so sorry you have to join us! This is an amazing group that has been incredibly helpful to me and I know we will all help you on your journey as well. I had a lumpectomy as well and just finished TCH x 6 on 5/31.
My hair came out in clumps on approximately day 16 but that varies somewhat. I had decided to be proactive and buzz it once it became messy and I had a wig picked out. In retrospect, I definitely think that was the right decision for me and although I was pretty emotional the day my hair came out I was really okay after that and adjusted very quickly. I've been working full-time through chemo and picking the right wig has been really important. If you use a wig make sure you get a good one that "breathes" on top. I can't tell you how much that helps with comfort. I notice that you live close to me-I'm on Long Island in this heat wave today with 98 degrees I'm wearing my wig comfortably at work. I only use the wig at work because I work as a professional in a hospital. When I'm off, I wear hats and at home I go bald...
The weight gain is frustrating during chemo but it's also misleading. I have had terrible side effects through every cycle and haven't been able to eat at times but the scales still show me up 10-12 pounds at the end of chemo. The steroids and taxotere combined seem to cause fluid retention and I'm told that some of this weight will eventually drop so I don't believe I've actually gained much weight in reality. I can definitely tell that it's swelling because my ankles swell and my abdomen is swollen at times. On the other hand, other than working I've been so fatigued that I haven't exercised so it's possible that the inactivity led to slight weight gain. It's definitely a challenge when you feel bad. I think it's really important to eat as healthy as possible during chemo but keep in mind that your taste buds will be altered and you will be really tempted to reach for sugary foods/carbs because they are the things that satisfy you when you can't taste anything else. I was able to avoid that and ate healthy during each cycle when I had an appetite and could taste things like fruits/vegetables. It was really easy at times to fall into a mentality of feeling sorry for myself and eating whatever I wanted but I kept telling myself that I was not able to exercise and was really going to pay the price in the end if I did that...
The fatigue is very real and builds up over time. It's interesting because I would feel wiped out during week one of every cycle and rebound during week 2 and 3 but there is an overall fatigue that builds throughout chemo and I am very tired overall now. Having said that, I'm still working full-time and have only taken a few days off during cycle 4-6 to deal with my worst days. If you plan to work, it is possible.
You will quickly figure out your specific side effects during your first cycle and will know what to do after that. It becomes very predictable. Everyone here warned me to drink A LOT of water and they were absolutely right. Otherwise, use the medications you are given to stay ahead of your side effects i.e. don't wait until you have nausea to take something. Also, if you will be given the Neulasta shot, a lot of us have found that taking Claritin in advance really helps lessen the bone pain and Aleve is helpful as well...
Didn't mean to be so long-winded:) You will find tremendous support here. So many of us have come through TCH and yes, it's tough but you will get through it too:)
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Hi Dragonfly, and thank you so much for your response. I appreciate you taking the time and telling me about your experience. Where on LI do you live? And where can I purchase a good wig from? I have very long hair (reaches my lower back), and when I went in to meet with the oncologist on Tuesday to go over the chemo regime I'll be starting at the end of this month, the nurse suggested I cut my hair short because it will start falling out in clumps... I nearly started bawling, but was very proud of myself that I was about to hold it together. I plan to get a really good wig that is similar to my hair now... hopefully people won't even notice it's not my hair.
About the weight gain, it's funny because I've always thought in my mind cancer patients on chemo would be thin and frail, but as I'm reading they actually gain weight?? This is not something I'm looking forward to!
Did you have the port inserted for your treatments? Are you nervous about Radiation?
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Hi Aimska:
Have you thought about using cold caps which many of us are doing. There's a cold caps blog here too that you might want to join. Most of us have kept our hair, not all of it, but enough we don't need wigs or scarfs. I had my last Chemo on Monday and still have hair, thin but it is mine and I'm happy.
Everyone doesn't gain weight...seems most do but I actually lost a couple of pounds, could be muscle loss since I'm ran a lot before chemo. Who really knows why I lost. I believe the steroids are the reason most gain weight.
You'll do just fine!
Arlene
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Aimska I live in Lake Grove, near Stonybrook
As far as the hair. I had hair just below my shoulders and was told the same thing-to cut it short in anticipation of chemo. I had mine cut just above my shoulders and then picked a wig that was the same style/length/color so that when it started falling out I just buzzed the hair off and went straight to the wig. People at work didn't even realize I was wearing a wig because the length was the same as the cut. As far as finding a good wig shop, I actually called my insurance to find out who they would allow with the prescription. The staff at the wig shop were amazing and helped to trim the wig for me and create bangs, etc. My wig is a Rene of Paris "monofilament" wig so the top is very breathable. It was about $350 and my insurance would only cover one wig lifetime so I had to pick the right one to get me through chemo and hair regrowth. People recommended to me that I should not pick a long style because it's hot. Mine is just above my shoulders and has been perfect even in this heat. I think a longer style would probably get fairly hot to wear 5 days a week. It's also synthetic but looks amazing and only has to be washed once a week and brushes right back into shape. It might be hard to stick with really long hair because you'll eventually have to transition from the wig to your new short hair...
Yes, I had a port placed before I started chemo and I highly recommend it to save your veins. Some people have complained that their port is uncomfortable. Mine is completely comfortable and I can even sleep on that side without any problem. I only had pain/discomfort a few days after the port surgery. I don't know if it makes a difference but I had a vascular surgeon put my port in...
I had the same idea that everybody loses weight on chemo but not these days!!! With taxotere and steroids you will definitely retain fluid. I've eaten healthy overall and even with the inactivity I think I'll end up close to my starting weight once I drop the fluid. I think the other problem is that chemo puts you into "chemopause" so some wacky things start happening with your hormones at the same time:( Your period will stop if you're not already menopausal and you'll start having hot flashes. I'm still adjusting to that part of it. I'm turning 42 this month so I wasn't ready for hot flashes. It's one crazy ride...
I'm not nervous about the radiation. After chemo, I feel like I can do just about anything:) I'm glad you found us. This is an amazing thread. I couldn't have made it through the last 4 months without it!
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Amaska everyone is different. I had 6tx of TCH. Never had any nausea. Still have all the pills. I did get some fatigue but never like the flu. Just more tired at the end of the day. Initially I didn't have any taste changes but toward the end I had if for a week. Thinks like pepper/spicy and nuts tasted bitter. It wasn't too bad. I did get some of the rare SE with my nails lifting but as you can see I survived. I did get a little neuropathy in my left heel. Its just a little numb especially when it's cold or very humid. When that first happened I started to take Acetyle-L-Carnitine 500 mg daily. I also found it helped with my memory so I never stopped taking it.
I was also a bit strange with the hair thing. I know it was going to happen so I wasn't freaked out. Just more stressed about getting a wig. I never really liked mine and only wore it one weekend for an affair. Here is my hair transition. As you can see I actually looked better on chemo. I think the steriods popped out my wrinkles: linky
I started going topless (sans scarf) 3 months after last tx. I colored it then too. My hair came in more gray and black. I had dark brown hair before. I am keeping my hair short for a while granted I still need the bangs to get longer. OMG this is so much easier. Hope in the shower run a comb through hair and I'm done. It even costs me 1/2 the price at the hair dresser because no blow dry and he uses less product.
Also for the first 3 TX I worked out the day after.
Good luck. You will find that the first tx is so scary but for most women it's very uneventful in the sense that bad nothing happens.
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Amaska I have to agree with Lago's suggestion on the Acetyl-L-Carnitine. I started taking it at the very beginning of chemo and I'm still taking it. It must have done something because I have had no neuropathy issues and I never seemed to get "chemo brain" so maybe it helped my memory/concentration as well-definitely worth considering. I buy it at the Vitamin Shoppe.0
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I had 1 treatment with TCH then switched to 3x AC chemo. Never got that sick, just would feel icky the day of treatment. One of my suggestions would be not to eat your very favorite foods during chemo, especially the day of treatment. Sometimes you'll not be able to eat that food either forever, or a very long time afterwards. I still haven't been back in a Subway because it was close to my treatment center and my sister would always go get us a sandwich from there. I still feel queasy just talking about it. The Neulasta shot that some people get the day after was what I didn't like. It causes bone pain - never horrible for me, but irritating. First one wasn't bad, but each time was worse. Just remember, all of us here have different cancers, size of tumor, mets or no mets and all of our bodies react differently to each drug. Some breeze through and others don't - so just because it's written here, doesn't mean it's destiny for you. As far as hair, everyone suggested getting a wig before my hair came out and I got two - now that my hair is gone, I've only worn them twice. I got it cut shorter than usual for me about two weeks after my first chemo - it bothered me more when it started coming out all over than it did once I just shaved it off. I'm now several weeks out and have the baby orangutan look! I did wear hats alot when it was cold out, but then graduated to handkerchiefs for a couple of weeks and for the last two days have gone "all natural." I've never had anyone say anything negative to me, only people who have been through it before and tell me I can do it. Most people are afraid their kids will say something, but we have six kids and I also teach first grade religious education classes and the kids are all so great. Our kids' friends range in age from 21 down to 8 and they all have been just wonderful. I think being up front with everybody really helped me to feel like I didn't have to "hide" anything. Welcome to this site - it will be a Godsend during treatment.
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aimska--It's true that every one of us has our own unique set of side effects. It can still be useful to know what others have experienced so that you might recognize it if it happens to you. It does help to be able to say, "Ah! Side effect." and know whether you should call your onc or just deal with it.
I have the port and would keep it forever if it didn't need to be flushed regularly and if more medical people were trained to access it! I have never had an easy time with giving blood or getting IVs and the port is sooooo easy. I don't notice it at all.
I generally have good days from the day of treatment to day 4. I don't need the anti-nausea drugs, nor any of the anti-constipation drugs. I have a wonky GI tract to start with and usually have to attack the Big D. My first tx was the worst and it's been manageable since. Most other side effects are what I call annoyances--my taste goes off, my mouth feels weird, I get twitchiness in my eyes, heartburn can be bad, and I get minor nosebleeds. None of it is serious and I deal with what I can. Salt and baking soda rinses, Biotene mouthwash rinses help with the weirdness in my mouth and prevent full-on mouth sores. I have never had a problem with Neulasta the way a lot of the ladies do. I don't take anything to head it off. I also don't have more than a day or so of fatigue. I still schedule empty days from day 1 to about 8 or 9--no social events or non-essential appointments. If I happen to feel good, it's like a bonus.
I have neither gained nor lost much weight. I usually drop 5-10lbs after a TX but gain it back by the next one. I think it's mostly fluid.
My hair started coming out in handfuls on about day 13 after TX#1. I had it cut short in anticipation and then buzzed it. I never did lose all my hair and it thinned quite evenly rather than in patches. I keep wondering if I'd left it go would it now be very thin but still ok. However it has been one less thing to obsess about during a time when there's so much to worry about. I got a decent mid-range wig that fits very well and most people have no clue, even those who know what my real hair looked like. Because it's comfortable, I use it a lot.
I would agree with achpurple about associating foods with TX. I went for pad Thai at a favourite restaurant the day after TX twice and I'm not that excited about pad Thai anymore!0 -
aimska - I had long blond hair before beginning TCH and cut it short prior to chemo. My hairdresser ponytailed it and cut them off. I sent them to www.hatswithhair.com and they made me an "underhair" which I wear under hats. It is my hair and when I wear it I look just like I did before mine fell out. It is much more comfortable than my wig and cooler here in sunny Florida. Just a thought, wanted you to know it is an option.0
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Thank you all so much for your replies and suggestions!!! This is such a scary time for me and it helps to know there are soo many women out there who can share their experiences with me. No one knows more than what I'm going through than the people who have been through it, so for that I am grateful! I will keep you gals posted on my first treatment. Thanks again!
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Aimska welcome. As I tell my coworkers when they tell me what a "trooper" I am (blah). Chemo is not particularly fun but the alternative ain t pretty. You can do this and believe me when and if the hair loss comes you will be at a point that it doesn t seem so important. I bought a wig and finally stopped wearing it. Spent the rest of the time learning to wrap turbans etc, and wearing hats. Good luck as you begin your treatment, they to focus on the positives. Visualize the chemo killing the little rat b--&ard cancer cells. Last day for students today....can i hear a cheer from my triple positive homies. Cannot believe I have made it through the school year, had uncountable IV infusions, 6 chemise, lumpectomy and re excision, 33 radiation tx, started med to queer up my estrogen, gone bald. What a crazy year. Libraylil
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libralil congrats on the end of the school year! Isnt it amazing to look back and see how far you"ve come? I also cant believ that I am almost to the end of this crazy journey, it will be one year in Oct. Cant wait for everyone to forget about my cancer and stop the "pity"look when they see me. time to talk about the fun things were gonna do in the future.
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Librarylil Congrats!!! What a testament to strength that you worked in a school setting through all of your surgeries and treatment-that's a special kind of torture:) I hope you are planning to do something relaxing during your summer break!0
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dragonfly - Hey! How are you doing?
libraylil - OMG -"school's out for summer" to quote Alice Cooper! Good on you that you powered through all of that and still stuck it out and did your job! Congrats! I am proud of you.
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libraylil--three cheers, hip hip hooray! hip hip hooray! hip hip hooray!! Unbelievable you are an amazing woman!!! Kudos to you for making it through the entire year of school while undergoing all of your treatments!!
Now to get my lazy a@## off the sofa and get doing something!!
You are an inspiration to me!!
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SpecialK I'm doing great all things considered. I'm so ecstatic to be done with TCH:) I'm still feeling the fatigue and the weak legs but otherwise every day is a little bit better and all the other SEs are fading away. My taste buds still aren't back yet but I suppose it won't be long now:) I'm hoping I can fully taste food in time for my birthday on the 18th because I really want to eat my favorite Indian food after I go skydiving-talk about living dangerously:) Are you still having the swelling? I dropped several pounds with the steroids and now it's gone back up again and I'm having the uncomfortable abdominal swelling...What's next for you? I have rads simulation next week and start rads on June 20th...It's going to be a long hot summer.0
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I wanted to chirp in that at 6 months post final chemo I am getting up from a sitting position on the floor without trouble anymore most of the time. It took a while to get over the thigh/leg issues but I realized yesterday when I popped up like I used to that I was past them! Many of you will heal much faster but this was my timeline. Just FYI.
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Omaz That's so encouraging because sometimes it seems like my legs will never be strong again. Halfway through chemo I had to stop taking the stairs at work because it was just impossible. I figured it would take a few months to get back to any semblance of normal...just have to be patient and realize it will come with time.
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It's good to know that the "gumby" legs will eventually go away.
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