TRIPLE POSITIVE GROUP
Comments
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Hi Omaz! I just saw your post, I'm doing good. Right after TX # I was down for about 3 days. Really exhausted, minor thrush that was gone in 2 days (eat greek yogurt & take probiotics & drink Kombucha) overall yuckiness and then the bone pain and some mouth sores... But I have been feeling "normal" for the last week or so. I am up for round 2 in Monday and I am scared because lightening never strikes twice and I am expecting worse. I think I got off lucky the first go round, also I have not lost any hair yet as I am doing cold caps but I "elsewhere" either but I have noticed a rapid decline in growth..I used to shave every day now its every 5 days but very little.
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nmoss - I am so glad it wasn't too bad! It took a while for my non-head hair to 'disappear'. I used the elastogel caps, not as good as penguin caps I think. I never had the hair falling out in clumps or anything. I thought round 2 was my easiest round, if you can call any of them easy.0
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Hi Omaz I am using the elastogel caps/helmets too. Glad to hear no clumps!! I really don't think there is a difference between the 2 brands other than aesthetics. Both reach the desired temps and in the end that's all that really counts.
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Hi nmoss - My elastogel caps did not fit tightly at the top and that is where I lost the most hair. I contacted the company about it and they said they were in the process of revising their instructions for chemo to include an ace bandage wrap to bring the cap in closer contact with the scalp. I think the penguin caps have a more contoured fit, but I could be wrong. Also, for me we were not able to keep my head cold during the first infusion because we only had 2 caps and it took longer than we thought. I think this lead to much of my hair loss. Best thing though was that my hair came back in pretty quick. That was great. Glad you are using the caps. Are you icing your fingers and toes?0
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Hi Omaz your right but I used the chin strap to wrap around the helmet. It did make it tighter. I am icing Fingers and toes and it is HECTIC. So far no reaction there but again my first round so it's all downhill from here. I am using 6 caps in total. I get 45 min of Carbo & 1 hr Tax & 1 Hr Herceptin, so 4-5 caps during TX (Tax & Carb) and 2 prior. How long beforehand are you icing them down to reach the temps? Also my eyes keep watering is that what is known as Taxotears?
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nmoss - Yes, taxotears Use natural tears, and sometimes place a cool damp cloth over your eyes for a few minutes. I didn't do anything during the carboplatin. I probably should have done my head. I just did icing during the tax. I don't think carboplatin affects the nails so I don't think you have to do the icing during the carb for the nails or did you read otherwise? I did not have any trouble with my nails.0
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The icing is for the taxotere nor the carboplatin.
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hey everyone, today is day 6 post op and had one drain removed, 3 to go. My incisions look fab and basically my PS is a miracle worker. Tummy from DIEP is amazing. New foob has a ways to go to get into shape. Had reduction of other side and am so thrilled not to have to lug that thing around anymore, do not need a bra, got a nice perky c cup. My DH said they were 18yr old boobs. I dont think that good......ha ha... but i will go with it
I am getting this funny visual of all you guys sitting around with the cold caps, like waiting for the alien ship to beam you up. Wish I had tried them. When I woke up from surgery I asked my DH "what is on my head" they had taken a green sterile towel and wrapped it like a turban and taped it. Wish I had a mirror to see that!
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Thanks for the warm welcome, ladies!
Windlass: My daughter wasn`t a newborn, she was 18 months old when I was diagnosed. She never took a bottle and was relunctant to wean until then. Luckily, I started weaning the week before my diagnosis and the transition went well. No, I haven`t had surgery yet. I was diagnosed on 8 March and on 10 March, I had my first chemo treatment. My doctors want to shrink the tumor with chemo before surgery. The current plan is to have 6 chemo treatments (Taxotere x3, FEC x3), then have surgery and radiation. How did your first treatment go? I hope the cold caps work for you. I'm just learning about those now. I don`t think it's an option at my centre.
Lago: My daughter was 8lbs. :P Pretty average size. My surgery will only be later this summer. Hopefully, now that I'm done breastfeeding, and with chemo, my tumor will shrink.
Kriskat: I also just turned 36, about 2 months before my diagnosis. I hope your 2nd chemo went well. I had my 2nd last week, and so far, I hardly have any SE.
Saralmom: I'm having chemo first. Wow, that`s a lot of variation for your tumor size. Did you have chemo before surgery, that is why the difference in size?
I have a question. Has most of you gotten a port-a-cath? For some reason, I'm hesitant about it. If you have one, is it painful when you put pressure on it? I have a 3 year old and a 19 month old, and I'm afraid they will hit it by mistake or even just rocking my youngest will put too much pressure on it?
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youngmama everyone is hesitant regarding the port. The idea that this thing is in your body and accesses a major vessel for blood is freaky… but I'm glad I got mine. You should discuss your concerns with the surgeon who will be doing the surgery. I do believe every case is different. I happen to be very petite (small frame) on top with no body fat so there weren't a lot of options as to where it should be placed. Since it sat right on top of the muscle my surgeon didn't want me doing any kind of stretches/exercises on that side for a while. I even had to get the kiddie port (juvenile port) I was so small. I don't think this is the case for most women…
that said I am so glad I have it. You do get used to it. You might be able to choose which side you want it on.
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lago, thanks for sharing! I'm also petite, so maybe I'll end up with a juvenile port too. I'll have to ask my doctor. A smaller port sounds less scary. lol
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youngmama - I am glad I have a port but it does pinch at times and took me a while to get used to it. I have a power port. If you get one you can mark the area where you want it to go to that your bra strap doesn't cross over it. I still don't like the seatbelt to touch that area and I haven't figured out a good way to prevent it. I do think though that with the number of infusions we triple+ women have (the herceptin for a year) it is helpful to have the port.0
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Youngmama I'm so glad your chemo seems to be going well with minimal SEs. As far as the port, I was really nervous about as I think everyone is at first but it has been such as blessing with all these infusions! I'm very thin and I didn't get the juvenile port unfortunately so mine sticks out prominently but the surgeon placed it well and it has never hurt other than when it was healing during the first week. I have never had any pain at all even if I press on it, sleep on it, etc. and mine certainly gets in the way.
Here's a story about my port: right before going into the operating room my surgeon who is very serious asked if I had any other questions. I said, "yes I do have one more question. Can I go skydiving with a port?" He looked shocked and then looked at my DH and the anesthesiologist as if I had been kidding. My husband smiled and said, "she's serious-she goes skydiving for her birthday every year." I finally got a smile out of the surgeon and he thought for a minute and said, "well, I don't see why not". At my post-surgery followup several weeks later the surgeon said "I admire your spirit". I was feeling pretty bad that day (week after chemo) and didn't know what he was referring to and he told me that he had always wanted to go skydiving and had finally decided to take his son and do it! That made me smile. It really made me happy to think that we aren't completely limited and life doesn't stop even in the midst of treatment. I forget that sometimes when I feel terrible and depressed. I obviously won't be skydiving during chemo but I fully intend to jump out of that plane between chemo and radiation and it will probably be the best feeling in the world. I'll savor every moment and be thinking of all of us living for every moment:) Just felt inspired to share...
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Even with the juvenile port it will stick out. It's just not as big in diameter. Here's a picture of mine:
It's not a power port. I can get blood draws but if you need dye injected for CT scans you can't used the port unless it's a power port.
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Wow dragonfly! Skydiving? Bold move! I love it! I can just picture the faces when you asked that question. I asked my husband why he never got "jump wings" during his military career. Many of the other aircrew had them. His answer was that he didn't want to jump out of a perfectly good aircraft. I think he trusted the plane more than the chute! To this day he has never jumped, but both of my kids want to. They are adrenaline junkies to be sure. They are going to have to tell me about it AFTER they do it, I don't want to know about it before! My DS is a fireman and while he is noble and dedicated, I know part of the attraction and why he loves it, is going fast in the truck or ambulance, and running into the fire. How are you feeling today? I feel OK - just bummed about my counts, I feel like a prisoner and my DD came home with a hideous cold.
Regarding the port - mine was placed subclavian, right at the bottom edge of the hollow of my throat, during my BMX. I am thinking it must be juvenile (I am petite also) because the chemo nurses aren't sure where it is! The discomfort from it was post-op but it blended with the BMX discomfort so it is all a blur. I have had no problems with it and weirdly, I love having it. I can't imagine doing all 6 tx and then a lot more Herceptin without it.
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SpecialK I'm finally feeling better today. This is the day in each cycle when I can finally eat real food again and I start to feel human:) SEs knock me down for 10 days every time...
I'm an adrenaline junkie too I'm afraid. My best friend bought me a bumper sticker for my car that says "I'm not speeding I'm qualifying"... I did the first skydive when I turned 40 (I've done 2 jumps so far). I insisted that I wanted my DH to jump with me the first time so that someone could experience the thrill with me. He reluctantly agreed and said he would never do it again (he is a pilot after all and found it very alarming to jump out of a plane). Meanwhile, I can't get enough:) We also went whitewater rafting on class IV rapids in Costa Rica last year (he liked that quite a bit). BC has slowed me down but I'm working my way through a bucket list. I might not be able to dive with sharks this year but I'll work it in somewhere-I've got plenty of time, right?
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I love this board. Thanks for sharing ladies. Wow, skydiving! I would love to do it someday!
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Hello ladies, I have popped in here before but then I got busy and got way behind on all the posts. You are a chatty bunch!
Anyway, I finally got caught up reading and wanted to jump in on the port discussion. I actually chose not to get a port, my onc said if I needed one the treatment nurses would tell me and they said they thought I would do ok without one. So I have done everything through the veins in my "good" arm. I was originally going to do TCH x6 but due to an allergy to Taxotere I ended up with AC x4, Abraxane x4, and now I'm on every 3 week Herceptin. My veins have held up fine, there have only been a couple of times where they had to stick me more than once to get a good vein. During the Abraxane I was also getting weekly Herceptin and near the end of that we started to have a little trouble with scar tissue building up in one of my veins but now that I'm on every 3 week Herceptin that seems to be giving my veins some extra time to heal. I also make sure to drink a lot of water the day before a treatment since that helps plump up your veins. So it can be done without a port, I recommend talking to your treatment center nurses and getting them to give their opinion since they should have a good idea of if your veins look good enough.
I'm currently in the rads phase, today completed #9 of 34. Tomorrow I get both Herceptin and rads so that will be a fun morning!
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Youngmama,
I have a power port. When I get a MUGA or need any dyes, they inject it right into this port. I get chemo and Herceptin through it as well. I workout and have no problems with it. Occasionally it itches, but other than that....it's no biggie. glad I have it!
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youngmama - I agree with jsw19 that you should talk with your onc about whether or not you need a portacath. The first oncologist I saw recommends them for all her patients, but when I changed over to a different treatment center, my new oncologist strongly recommended going without. I have good veins, and his experience is that the risk of infection and problems isn't worth it. I was dubious at first - guess I had adjusted to the idea that I would have one - but so far I'm really glad I don't. Once the IV comes out, I have nothing there to be aware of until the next round.
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Cindy,
Good on ya! I think we all hit those dark times. I'm glad you've decided to put yours away. If BC has taught me anything...it's life is tooo short to waste feeling sorry for myself. We gots some LIVIN to do.
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I do not have a port. My onc just didn't think I needed one. It was a difficult decision for me. I went back and forth, agonized and debated all the pros and cons.
I finished TCH #3 today and so far, I haven't had a single problem. I know that i have a long way to go and I figure that I will get a port down the road if i run into problems.
My onc was discussing new and upcoming things in oncology with me today - an oral pill that has Herceptin with chemo meds attached. And a study that may be coming from Europe that says that receiving Herceptin for 6 months is just as good as receiving Herceptin for 12 months. He said that if that is officially released, I may receive Hercepting for 6 months rather than 12 months.
I'm not sure I like that news at all. I feel better doing *somthing* rather than *nothing*.
He did say that he doesn't believe that research will release before July.
I want my one year of Herceptin.
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pejkug - I have been waiting for the results of that study to come out. Did he tell you any more about it? Thanks for sharing that info! Do he say if it was the study from France?0
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Youngmama - I agree with previous posts also... it is a very personal decision... one that swayed mine was my dad (who had great veins) was in treatment for lung cancer, and his IV infiltrated.. while getting chemo... he lost feeling in his arm for a long time... so, I too chose to get a port. However, I got mine in my arm beause I just didn't want it on my chest... not everyone is perfect (as a nurse, speaking of nurses) and I didn't want a needle being stuck there - I'm more comfortable at the possibility of a miss with it in my arm....
I think it would probably be mostly out of the way with cuddly babies there as well! 0 -
I am glad to have port. It was scary to me to think about it. The procedure itself was no big deal (glad to have that last IV out- those things really hurt me). About a week after it took some getting use to- I felt like my neck/chest was sore/swollen. Like I had a garden hose stuck in my neck.
Now, I don't think about it much at all. I can feel it if I sleep on that side, but it doesn't hurt. I love putting the numbing cream on an hour before each chemo- so I don't even feel the prick for the needle for the port. Such a nice change from being poked all the time before.
Mine doesn't stick out- but I do have a scar from it- it's about 1 1/2 inches- small. Now that I am probably getting blood from counts being down, glad I have the port. I was so sick of IV and venipunctures.
It though is a very personal choice.
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i have a scar on mine- where they did the incision.......about inch and abit........i notice some of u dont have any scars................how comes?
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My onc will order echocardiograms for me, instead of muga scan from now on. Thanks for the information on this thread. he said the cardiograms need a techologist to read it while the muga scan results can be easily calculated by using the computer.
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just had my echo cardiogram and my ejection factor is 60 no change from 3 moinths ago!! yay!!
ok question- i asked my onc about screening for any recurrences in the scar area - she said just feel it for lumps. Now if its lumpy already because of scar tissue from the masectomy, how do i know if its a new lump or scar? i dont want to assume.........what tests can be done at this stage to screen the masectomy site? anyone?
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Redninrah both your onc and your BS should be examining you regularly the first 1-3 years. I see my BS every 6 months and my onc every 6 months alternating so someone is "feeling me up" every 3 months to check those scars. I believe that is for the first 2-3 years. After that I think it goes to yearly with the BS & onc. I think after 5 years I may only be seeing the BS yearly.
Not exactly sure of the schedule since my onc told me when I first met her. At the time I was 2 weeks out from bmx and being told about my treatment. 1 year seem like such a long time away.
I would think they could tell the difference between a scar or a lump. I'm also willing to bet when in doubt they will do a biopsy. Now that we have been diagnosed the tend to be super cautious.
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Lago - How's your hair coming along??
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