TRIPLE POSITIVE GROUP

Taco1946

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

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

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

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

cherry what a beautiful pic!

Cherry-sw

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

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

ElaineTherese

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

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

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

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

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

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

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

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

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

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.

Anonymous

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

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

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

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

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

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

Cherry-sw

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

Anonymous

Everybody keeps asking me if I am going to grow my hair back out. It was nearly to my waist when I was diagnosed. It took me 8 years to get it that long. And that was growing it out from a chin length bob. I can't even imagine how long it will take to grow it from nothing!!

PoseyGirl

Cherry! I love your wig and you look lovely!! How do we post pics of ourselves? Will it be obvious on my profile page?

Cherry, you had me totally LOL with the comment about you becoming a high maintenance bitch. That definitely belongs in a book of quotable quotes - it is the best . I feel so much the same way. I feel like I have become a full time job!!!

I called someone about the possibility of hair extensions. She said she doesn't think it will work given how much hair I have. My hair started growing back (or I stopped shaving) in late October and 16 months later it's almost 6 inches long. But it curls up to look 3 inches, so it will take awhile until it's long enough to style. I figure another year to get it how I want. Thus the inquiry about extensions. But for those of you with straight or thin and curly hair, you could do this once you get a few inches. But it's pricey (but i feel worth it).

tld2017

So BCBS notified me yesterday that they will not pay for Perjeta. I'm incredibly disappointed because my oncologist said this is my golden ticket, the best treatment for me (along with Taxol and Herceptin). I'm seeing online that it could cost $10,000 a month if we had to pay out of pocket?! I'm not sure if I am looking at reliable sources though. My doctor will fight BCBS but it just seems ridiculous that there is a drug out there that can help those of us who are HER2+ but if we are not node positive and our tumors are not above 2 cms, we don't qualify. It is still HER2+! Has anyone else had these issues regarding Perjeta?

PoseyGirl

Hi tld, in Canada a patient doesn’t get Perjeta unless they are stage 4. I thought it was brutal.

tld2017

Wow, PoseyGirl, I guess I should not be surprised then. It's just maddening to me that there is help out there, a treatment out there, that can help us survive but it is not available to us...

SpecialK

tld- if you look at the data collected from the APHINITY trial of adjuvant Perjeta, those with higher risk - larger tumors and positive nodes - derived more benefit. Link below. Neoadjuvent Perjeta was approved for node positives or tumors over 2cm in Sept 2013.Adjuvant Perjeta was just approved very late in 2017, insurance may be reluctant to approve adjuvant treatment for disease that doesn't meet the FDA neoadjuvent treatment requirements, and may be slow to adopt coverage based on the study results. If I was treated now I would have received Perjeta, but it was not yet approved for early stage use. I hope it will make you feel better to know that I did not receive Perjeta when I was treated, but I'm still here.

http://www.onclive.com/web-exclusives/fda-approves-adjuvant-pertuzumab-regimen-for-her2-breast-cancer