TRIPLE POSITIVE GROUP

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Comments

  • cherry-sw
    cherry-sw Member Posts: 783

    deni, I took twenty pictures this day and could only use one)) and you are looking at me wearing make-up. Without it I am a fat woman with some salt-pepper-brown-sugar fuzz on my head. I cannot myself nbelieve how much I aged in these last six months. I also had terrible acne while on Taxol so it left some small scars and holes in my facial skin( But what can we do? I bet my neighbours are puzzled when they see me one day going out with some hair underneath my hat and some day without)) Good news is so cold in Sweden that one can wear a hat until the middle of May) for the first time in my life I am glad for that. By then I do expect some pixie in place! The wig looks like a wig without the hat( Hang in there, it can only be better, it has to. The back pain is common, I have been told by everybody, if MRI came back clean and your doctor is bor worried about your blood work then you are having the changes that come with age, that is what I have been told Cherry

  • cherry-sw
    cherry-sw Member Posts: 783

    Jumpship, yes, everybody keeps telling me about yoga and I am considering it but first I have to lose this weight because frankly I annot bend properly with all these calluses in the way.

  • moodyblues
    moodyblues Member Posts: 393

    Thank you everyone for your kind comments and encouragement!


  • Blownaway
    Blownaway Member Posts: 662

    moody - my mammos are every March. I start getting crabby in February and constantly "feeling up" my boobs for lumps. It's just stress...

    Hap - it took about 1 year to get my LVEF back to just below my own normal which is 56. Last echo was 49-50. It's only checked annually at this point. I only have abnormalbreathlessness when I bend over or ride my bicycle against the wind or uphill.

  • Blownaway
    Blownaway Member Posts: 662

    Hap - yes,an ace inhibitor ans a beta blocker.

  • Blownaway
    Blownaway Member Posts: 662

    Hap - I was told that I had to take them for life "to protect my heart". I still intend to ask my new cardiologist if I can exchange one or both of them for clonidine which will hopefully help with the hot flashes.

  • Taco1946
    Taco1946 Member Posts: 630

    ltd2017 - As we often say here, "welcome to the club none of us wanted to join." Stay close. I suggest you also look for a forum that says "starting chemo March 2018. My Feb 2017 group has really been a lifeline. We have a private chatroom on facebook which has allowed us to share both more pictures and more personal info. You didn't say what your chemo would be but looking at your diagnosis I'm guessing Taxol and Herceptin. I did both weekly for 8 weeks and then switched to herceptin every 3 weeks.

    Everyone's SEs are a little different. One of the things I discovered was that I had to get to chemo day with an empty gut, even if it meant a stronger laxative than usual. My center didn't suggest or assist in any icing and I don't think I saw anyone do it the whole year I was there. I have had artificial nails for years and years and switched from acrylic to gel. They looked great and I didn't lose one although I did lose two toenails. Hair went by week 4. Have to admit that I actually liked myself better bald than at my current curly and out of control short style. Although I had wigs from a friend, I was more comfortable in scarfs.

    It's hard to say don't think about it, when the date is staring you in the face but try to do some things for yourself. A mini-vacation, a massage, a good book. If people ask you want you need help with, tell them. Depending on how far your center is, you may need rides or coverage at home. Having someone deliver a meal, especially on chemo day or the next is special and takes that off your plate (I didn't intend that pun). I usually felt worse the second and third day so I'd advice seeing if you can get your chemo on Thurs. or Friday.

    Looks like you, like me, had an early diagnosis. I hope like me, a year from now, you will be getting your port out and moving forward with a new purpose and a lot of gratitude. Stay close.

  • suburbs
    suburbs Member Posts: 398

    Hi everybody. Cherry-sw, you are rocking that wig. I find that hats and headbands make the wigs look more natural and tolerable. It helps them stay in place. Yes, become high maintenance! You go.

    I have restless leg syndrome at night when I climb into bed. I shake my legs and feet and roll my knees from side to side. After a minute or two, I can rest. In the morning, my feet feel like bricks. I have to stretch and roll my ankles in order to move without pain. Since starting the Arimidex, I have pain. It's intermittent and unpredictable. Movement is the only cure. If I don't move, it does not dissipate. I feel ancient until I get the blood flowing.

    I am still struggling with the massive 25 pounds I gained during chemo but making progress. Eating clean and organic mostly plant based food. The weight loss is very slow but my energy level is returning. I no longer come home from work and take a nap. That's progress.

    I have been here for a year. During treatment and post Diep surgery, I could not get myself to follow the sage advise of many further along - eat clean and exercise. I now realize that this advise is the key to getting beyond treatment side effects and building back strength. It's easy to dismiss when one is dealing with so much at the same time. Yep, I keep saying, I can do this!


  • suburbs
    suburbs Member Posts: 398

    Photo girl, now that's a random act of kindness. Good for you. I am sorry that it made you cry, but that's ok. Sometimes a good cry is a needed outlet. It happens. If you need an anti-depressant during treatment, then there is no reason not to ask. From reading your posts it sounds like you are very brave and dealing with your diagnosis with grace a quality I do not possess but admire greatly in others.


  • Photogirl81
    Photogirl81 Member Posts: 35

    deni, thanks for your kind wishes! I do hope that all will be fine. I (we all) deserve that! 😁

    Suburbs, thanks for your words. I really try my best to act as if nothing happened... sometimes I can be really fine for a week, then I have a bad day or two... but working on it hard, not to let this BC get the best of me.

    Cherry, you look stunning. Thank you for sharing your pic with us. You rock that wig!!! I know it can be hard to feel beautiful. For me it is really diffucult, too. But as a photographer, please take it from me: you look fantastic, and you are truly beautiful. No matter what the mirror might say on our bad days. :)

    Hugs to you all!


  • Tresjoli2
    Tresjoli2 Member Posts: 579

    cherry what a beautiful pic!

  • cherry-sw
    cherry-sw Member Posts: 783

    Suburbs, thank you! When I get all that dressed up, put some make up and looke at myself in the mirror it is almost like I recognize myself, but when I come home and have to take off my hair (!) reality hits me, I cannot believe I had this bc.

    What you describe are my symptoms exactly, so I assume they there to stay and can be attributed to Tamoxifen. I keep exercising and stretching every day, exercise helps even for the restless legs, O also do have this feeling when I go to bed.

    What you eat is so important when you want to lose weight, I am trying to eat less and count my calories but sometimes I just cave in and have a piece of cheese or a slice of jamon, which is my weakness, I can leave without bacon or pork, but this jamon serrano is hard to resist. I bought it today and wrapped it around fresh figs, drizzled them with balsamico crema and .. licked my plate clean. Oh, well, as one of the ladies on So, what’s for dinner thread mentioned yesterday, no one on their death bed ever regreted they tried tiramisu, and she was absolutely right. I intend to eat some good stuff in moderation when these calluses are gone


  • cherry-sw
    cherry-sw Member Posts: 783

    Photogirl, thank you! Especially when it is coming from a photographer

  • elainetherese
    elainetherese Member Posts: 1,635

    Cherry -- awesome picture! I also allow myself small treats. For example, I'll eat carrot sticks as a snack, but with a small amount of Lite Ranch dressing. I am trying to eat better, but you have to allow yourself some slack.

  • cherry-sw
    cherry-sw Member Posts: 783

    Thank you, Tres! I really miss my long hair and this wig with the hat on top of it really looks like my hair. It took four years for them to grow to this length from a short. Sometimes I tell to myself that I will keep them short for some time and then it hits me that it will take a while until I can call it short. Bc is so ridiculous.

  • cherry-sw
    cherry-sw Member Posts: 783

    ElaineTherese, thank you! Carrot sticks with any dressing sounds like a healthiest snack to me. I like crunchy food so once in a while I have to have these Doritos, cannot help it. I also found lentils chips, they have both lentil flour and corn starch, a small amount will not heart, but you feel so good after eating the things you like

  • cherry-sw
    cherry-sw Member Posts: 783

    Thank you, Hap! I am so sorry you have no energy, this Herceptin stuff is very sneaky.

    I had my 6th injection yesterday and the nurse kept asking me about shortness of breathe and so on and I told her that so far so good, I even run on my thread mill every day. She said then that I was probably ok but they will be doing echo towards the end of rads. I man almost half through with those too and now the skin starts getting red.

    The wig looks still like a wig without the hat( I want my hair back

  • deni1661
    deni1661 Member Posts: 425
    Hapb, your new hair sounds like mine. I have curl in some places, straight in others, and all is extremely dry and brittle. I did get a haircut today so it was nice to have my hair look reasonable for once since I haven't been able to do my own hair since my shoulder surgery!

    I use Palmers coconut oil and Aveda hair paste to soften my hair and control the direction of my hair. Maybe your hair will fill in and become all curly at some point?
  • specialk
    specialk Member Posts: 9,261

    I found I had to cut mine, even when still very short, to make it look intentional. I had no curl, mine grew in as it had always been - fine and straight, no body

  • shelabela
    shelabela Member Posts: 327

    Special K,

    My hair is so wavy now, it's crazy. Never had any body. I love it. I'm sure it won't stay this way.

    Cherry, you are beautiful! I have horrible restlessnbess on Tamoxifen. Dr said it may go away. Been on it since October. I also have horrible headaches.

    Hap, i am praying that you do ok on Herceptin this time.

    And the rest of you lovely ladies I've missed, Hi hope things are going good

  • elainetherese
    elainetherese Member Posts: 1,635

    shelabela,

    I loved my post-chemo hair, too. It was wavy and fluffy. But, eventually it returned to its flat, stringy ways. Still, some hair is better than none.

  • Photogirl81
    Photogirl81 Member Posts: 35

    hi Ladies,

    Some of you are mentioning headaches on Tamoxifen. Gosh, the first week I started taking it, I had migraine every day, in the middle of the night between 2am and 3am. Sometimes in the afternoon, too. It was debilitating, and I was so scared... what if it won't go away?

    Luckily it did. But a quick tip, if you haven't heard it yet: taking pain killers with coffee strengthens their effect, and makes the effect faster. I used Voltaren Dolo and coffee (yes, even at 2am) and it helped on about 10 minutes. Hope I could help some of you with this idea.

  • Blownaway
    Blownaway Member Posts: 662

    My tamoxifen headaches came and went all day long. I was also on gabapentin which can cause headaches. So who knows. Currently not taking anything and no headaches unless my ponytail is too tight.



  • oceanbum
    oceanbum Member Posts: 3,644

    Gosh, I'm so glad Tamoxifen doesn't give me headaches. I've suffered from migraines since the early 90's. I'm actually shocked that it doesn't cause them for me. So far the only thing I have really noticed is hot flashes, night sweats and trouble sleeping.

  • cherry-sw
    cherry-sw Member Posts: 783

    shelabela, thank you! What do you do with this restlessness? It kept me awake last night, such an uneasy feeling like I had to get up and do something. So I got up and ate an apple, in the middle of the night, has been doing it a lot lately, so much for dieting( I decided not to buy any for a while. But I just wake up thinking, oh, a cold apple from the fridge would be so nice.

    I had no headaches so far but have bone and joint pain and then my plantar fascitis too. I will ask MO about the restless legs, have an appointment on March 6th.

    Anybody who runs outside and can give advice on the jogging shoes? Mine are 1,5 old and are only good for threadmill so I am looking for a new pair. I am considering Asics Nimbus but these are pricy, anyone who owns these and can recommend

  • Trisha-Anne
    Trisha-Anne Member Posts: 1,661

    I had wavy/curly hair before chemo, and it grew back with crazy ringlets after the first chemo lol. It eventually grew out and back to what I had before, but with one big difference - I had very thick wiry hair, and after chemo it was soft and a lot thinner. After my second bout with bc and chemo it still came back softer, but not as curly as the first time.

    Cherry - I had awful restless legs with chemo - the first time around I was able to mitigate it somewhat with magnesium. You need to find a dose that helps you. You almost can't take too much - the body just eliminates what it doesn't need. After my second go round with chemo, the restless legs escalated through the roof! And this time it didn't go away, so I'm on a drug called Sifrol - it's for Parkinsons Disease, but it was found to have the benefit of helping Restless Leg Syndrome. Mine got so bad my whole body was "restless". I couldn't sit or lay still - I'd pace the floor for hours. 

    Hopefully yours doesn't go on to be as bad as mine, and magnesium helps.
    Trish

  • cherry-sw
    cherry-sw Member Posts: 783

    Trisha-Anne, I am sorry to hear that, it sounds horrible! I really hope I can keep it at bay somehow. I have been told not to take any supplements at all so I do not know that about magnesium but I will ask MO, thank you for the tip

  • Tresjoli2
    Tresjoli2 Member Posts: 579

    I had to cut my hair every six weeks for the first 18 months to make my hair look intentional. It grewback unevenly and was crazy. My hairdresser just gave me the ok to wait 12 weeks for my next cut. It's all a process ladies..a crummy one, but a process nonetheless...

  • cherry-sw
    cherry-sw Member Posts: 783

    ElaineTherese, this is so true, some hair is always better than none

  • cherry-sw
    cherry-sw Member Posts: 783

    Tres, it is a process, but it goes so slow! If I could I had measured my hair every day, a device that works like bathroom scale would have been good. So far very little, but the scale has finely given up and budged a little after omg four weeks Cherry