Starting Chemo January 2015

PMR53

Hi Spookisgirl!!

I am so happy to hear you are Cancer Free and that surgery is over!! I completed Herceptin last Monday! I will complete my fills this month and have exchange surgery in the spring. Are you still dancing? Merry Christmas to you and will be glad to leave 2015 in the past. Not my best year!

Hugs

Patty

spookisgirl

HI PMR53,

I am not dancing right now as I recover, but the PS tells me I can return back to full dancing at 8 weeks, so I can't wait. I am hoping to be able to do very basic posture exercises next week. Up to the PS!

Merry Christmas to you!

Jenn

jlstacey

Congratulations Jenn!

Two questions: 1) Does anybody else have curly hair now that didn't before chemo? I do and I love it!

2) Does anybody else still have severe chemo brain?

spookisgirl

I have curly hair now.

chemo brain is hard to tell....I am still really fatigued and recovering from surgery, so it could be anything at this point.

RV6gal

Hello and Merry Christmas to all!!

I returned to work full time in mid-September. It was good to go back and try to get back to normal. Still trying to find normal though. I have some residual issues that I am trying to overcome. I joined Aquasize and cannot say enough good things about that form of exercise. It has helped me tremendously as I regained a range of shoulder motion and overall core strength. The frozen shoulder is still there but much easier to live with. I definitely have chemo brain -frequent loss of words. My new thing is saying "What am I trying to say".. Drives my co-worker nuts, I think. I too have curly hair. Never even had a kink before chemo. I do like it too as it is way easier to manage short hair this way.

Wishing everyone well and looking forward to a much better 2016!

Tennisfan

Bonsoir beloved January sisters. Can youbelieve it will soon be a full year since we started this journey together? And how many times we thought we wouldn't survive, yet we all did!!!

This year has taught me that anticipation/anxiety is harder than the real thing, so I keep working really hard at not crossing any bridge before getting to the water...

I started taking Curcuma in pill form just as an anti-oxydant and it has done wonders to reduce my liver enzyme levels AND joint pain. The rhumatologist said it's normal after all the chemo and that curcuma has notable anti-inflammatory properties - I did not know about any of these properties but I am now going to take curcuma for the rest of my life lol. My liver enzymes dropped dramatically back to normal after only taking curcuma for a few weeks... A friend who has hep C recommended this to me and it worked!

Started tamoxifen maybe two months ago - I was expecting (again) the worst but funnily enough, since I was already in menopause, induced by my oophorectomy, the tamoxifen has no impact on me -YAY. In other words, I am already hot all the time so no difference, really...

Playing tennis 3-5 times a week (my revenge for all the time I could barely play one hour a week lol).

Like LCH033 still have 5 herceptin treatments until March 18, at which time I hope to fit in all my shoes again (my worst side effect so far is truly foot swelling). Thanks to tennis I have managed to keep fitting in my clothes despite the weight gain and the menopause ;0)))

I also died my hair for the first time about a month ago - I had grown accustomed to bleach blond peach fuzz, then gray hair so much that after colouring I was in shock and almost did not want to go to work. It faded a bit after a week of course and I am definitely now enjoying the new me. I have never had so many compliments since sporting ultra-short hair: I look like a mix between Betty Boop and Josephine Baker, as I flatten my short curls vintage style, for fun, using gel. I am trying to grow my hair back but I might just return to this ultra short hair - no more fuss! The other great news is that hair on my legs and armpits has not come back just yet (herceptin slows down hair regrowth).

I too will have to be monitorerd for 10 years, on Tamoxifen for 10 years, etc. but I am so grateful to have a wonderful care team. The follow up appointments on the clinical trial for Herceptin get a little heavy at times but I feel lucky to be monitored so closely.

Well it's now time to say happy holidays to all of you, and HEALTH in 2016. Keep us posted on your final miles of progress... And maybe even show a picture of your new hairdo?

Also, try to find the time to say hello to the December, January and February girls... Remember how scared we were of the unknown, back then?

Au revoir, les amies!

Marjorie aka Tennisfan

LCH033

Ok, I know I've been gone for a while....I thought I found my light at the end f the tunnel.....that BIG reconstructive surgery that gave me my new "Normal;"and this will sound seflish but....they had to go smaller because cancer took sooooo much, I didn't have even have enough skin and tissue for the implants to fit.

I was so excited, I thought this was "IT"....mu light.....but I woke up and it still dark.....what is wrong with me??????????????? All I do is cry now....I feel like the cancer took so much there's no normal to be found

signed...

sadness within darkness.....and pathetically defpressed and lost and confused

Tennisfan

LCH033, sometimes they can "inflate you" periodically to stretch the skin (it doesn't hurt) until you reach the desired size - can you ask if that is a possibility or have they confirmed that this is you "final" size? Do ask...

Marjorie

RV6gal

Oh Lara, I'm so sorry to hear you are struggling with this. To be honest, I have not pursued reconstruction because I want to avoid further pain and disappointment. My skin is so tight and sore, I can't imagine having anything further done right now. I just don't know what normal is anymore anyway. I seem to be struggling more with widespread aches and pains which make me tired all the time. I can function well at work but seem to lose steam once I get home. Really hoping for improvements for 2016!

When did you have your reconstruction? Maybe it will just take a bit longer to feel better than you expected? That's what I keep reminding myself. If you are really in darkness though reach out to your doctor. A little help is well deserved as we have dealt with lots!!

Wishing you a better 2016 too!!

Wendy

Tennisfan

Ladies,

To the topic of aches and pain, I got so worried that my onc got me an appointment with a rhumatologist-everything hurts, in particular the bones of my feet, but also joints in ankles, knees, and even my hands, in the morning. I have a hard time getting off a chair. It mostly goes away when I get going but I feel like an old lady... Anc my first few steps are... Wonky.

The good news is the rhumatologist said that it is quite common to have arthritis in some shape or form, following chemo. Physio also reminded me that it takes at least a year before chemo and rads side effects go away.

So don't give up too soon, we are in the middle still of our healing journey, but the best is yet to come for all of us.

I wish you all a healthy and pain-free 2016.

Marjo

RV6gal

My doctor did tell me it takes at least a year too and to not be too hard on myself! I do see some progress. It just seems like go like a turtle and I want it to be the hare...LOL

Here's a quick snapshot of my new hair! Ready for a trim now..

Wishing us all better health and good fortune for 2016!!

PMR53

Thank you all for checking in ! 

Wendy- your hair is beautiful! It feels good to have hair again. Thanks for reminder, I get frustrated because I still have all these aches and pains. 

Marjo-- you described my exact problems!! To the T.  I am not alone. I was thinking I felt so old and you have same symptoms. I know you play tennis too!! I got a Fitbit and am trying to up my steps. 

Lara- I am so sorry you are struggling with this sadness and depression. I wish I could give you a big HUG!.. My reconstruction has gone okay. Definitely not normal. My right side is Frankenboob. I have a bra that hides a multitude of problems.  I am done with getting fills.  When I lay flat my Tissue expander slides under my right armpit. Ugg it's weird.  I will live with this until exchange in April.  I have just come to the conclusion it is what it is and I can't change a darn thing.  I will never feel the same or look the same. It's hard some days. 

Xoxo to all of us January 2015 Chemo gals. I still have my port. I want it out!!

Patty

cubbieblue

Hi everyone! Just curious if anyone else is still hanging around BCO or if you all have gone on with your lives.

RV6gal

Hey Cubbieblue, I am still here mostly lurking. I feel like I am still in recovery so I come back to BCO often looking for information. How are you doing

JustKeepSwimming44

Still here 😊 and also feel like still recovering. Getting on with my life is proving a little more difficult than expected!

Tennisfan

Bonsoir and so nice to hear from some of you!!!

I certainly hope this finds all of you well? would love to say I have resumed normal life but... i am still waiting for my reconstruction... They apparently have so many mastectomies to perform that my surgery date keeps getting posponed from one month to the next. However putting myself in those ladies shoes, I so remember how I wanted the cancer to be out of my body that I am willing to wait as it helps others...

Playing tennis more than ever, shedding the weight gained thanks to chemo at the gym, and sailing with a buddy - this is the summary of my summer. I also just finished reviewing my scuba recertification theory as I am going on a sailing/scuba trip in september but coming here is reminding me that I should check to see if contra-indicated for foobs...

Would love to hear how everybody is doing - I finished herceptin in march, its been ok for the most part, except for the lovely hot flashes of course, and a few more secondary effects from tamoxifen. I have been going to acupuncture to diminish the hot flasshes intensity and frequency (there is a lot of serious research about positive results online, if, as in my case, you had to go thorough oophorectomy (ovaries removal) as well.

I will remember you guys FOREVER. You gave me strenght, courage, a venting space, a place to know that I was not alone, and for all of that I am forever grateful to this group.

Best,

Marjorie aka Tennisfan

P.s. Approaching 50 and cancer-free, I have decided to make some bold moves, including dying my hair blond, as a salute to Rio olympics - hope this makes you smile, as it is quite different from my last picture!!!

cubbieblue

Nice to hear from you RV6gal, JKS44 and Tennisfan! Radiation was easy enough and I'm tolerating the AIs pretty well. But I wish I could get to a point where this feels like a bump in the road that I'm now viewing in the rearview mirror. I still think about BC every day. I had one clear mammo since finishing radiation 6/2015, but anxiety is building as I approach my next mammo mid-September. Tennisfan love the hair! It looks nice and thick. Mine is thin and wirey but I'm thankful it came back at all after reading about TC causing permanent hair loss for some. Hope we all attain our physical and emotional recoveries that have alluded us thus far. Take care ladies.

spookisgirl

HI ladies,

I am not around too much, but thankfully most things seem back to normal for me. I had a bumpy ride starting tamoxifen, but thankfully it finally started to settle down. I started back full time at work two weeks ago, and have my medical assessment for work next week. It should be good news and I should be finally at the point where I am only going to be waiting for my file to be reviewed to put it all behind me. While I wait for my career to move forward, I have decided to start moving it forward myself, and am applying to do my masters starting in January.

I am dancing up a storm and getting ready for my first competition back in October!

So glad to hear from others that things are going well,

Jenn

cubbieblue

Hi Spookisgirl! Glad to hear you are doing so well. Good luck at your competition in October.

PMR53

Hi Cubbie, Hi Jenn, Hi Marjorie!. JKS44,

Good to hear from all of you!!

Cubbie- I feel the same. I haven't been on all summer I have been so busy. My Right side is a Frankenboob and will never feel right. I get a mammogram in 2 days for my yearly. It's scary.

Marjo- you look healthy and beautiful ! I hope you hadwonderful summer and get this recon completed And get this behind you!

RV JK-

It's good to hear your hanging in there. Just keep swimming right.! I struggle with getting tired fast. Do any of you? I was not successful with ALs. I feel like I am still recovering in a way. Outwardly I look normal but I will never be the same inside.

Xoxo PMR53

cubbieblue

PMR53, Frankenboob!! Haha love that. What a great description.

Hope your mammogram went well.

SweetHope

So good to hear from all of you. I came back to BCO to look up some info about trigger fingers from Femara and was so happy to see ya'lls posts. I stopped thinking about myself last December when my oldest son was diagnosed with advanced Multiple Sclerosis. He was misdiagnosed six years ago as schizophrenic and was on very debilitating anti-psychotics when just some corticosteroid injections would have worked. Now he has numerous lesions in the brain, brain stem, cervical spine and thoracic spine. A simple MRI would have revealed the correct problem.

As for me, I'm fatter, stiffer, and trying to enjoy every day. I thank each of you for your contributions to my sanity when, each day of chemo, I could laugh, cry, and empathize with you. Please keep the pictures, dance videos, and posts coming. I truly am emotional right now, thinking about how much you mean to me.

XOXO, Becky

LCH033

Hello Ladies,

I know, it's been a LONG time since I've been on here, sorry. Life is a whirl wind every day! My radiation was complete August 2015 and I finished up my Herceptin March 2016. I have 1 minor surgery coming up in November; more reconstructive stuff. Trying to make my patch work art boob job a success. LOL!!

I am wondering if anyone else is experiencing EXTREME fatigue?? I can barely get to and from work without falling asleep behind the wheel; it's quite frightening to be honest. I am sleeping like a rock and getting about 7-8 hours of sleep a night. Even now sitting at my desk at work writing this my eyes are crossing and I actually have a head ache from fighting the sleepies.......Is this just part of it?? It's gotten progressively worse over the last 3 months.

My MO has ordered blood work for tomorrow so the results are available when I go in for my 3 month check up on Oct. 7th.

Anyhoo; hope everyone is well!!! I miss you girls and think of you all often!!

OH....remember my Healing through Art Class last October?? Well, I volunteered to help with the one this year and absolutely LOVE it!!!

Yesterday was "Super Hero Day" at the office.....attaching picture and Ben & I!

Love & Hugs!! Lara

PMR53

Hi Lara and Becky! Good to hear from both of you! I had a clear mammogram the first of September on my left side. I still struggle with slight swelling/ol underarm issues related to all the reconstruction I guess. Becky I am so sorry about your sons recent diagnosis/misdiagnosis. You have seriously had some challenges I am sending you a big hug and prayers for your family. You hair looks beautiful too. I am stiffer and gained my lost weight back too.

. I'm sorry Lara about your fatigue. I understand and have these issues too!! Some days are worse than others. You look great and you are a "Super Hero"!! I hope your fatigue gets better.

Xoxo

Patty

LCH033

Hi Patty,

I too have swelling and discomfort under my left arm from all the reconstruction and now Lymphedema; it's annoying. I had my "Survivor" appointment and am now making appointments with "normal" doctors; Lol. And I can finally see an Optometrist as my eyesight is horrible now; to the point where I can't drive at night. It's scary actually!! That and the falling asleep is just not good. They put me on Ritalin and it helps a little; but as I sit here typing my eyes are trying to close. But all my blood work came back good and there is nothing they saw that would enhance such a high level of fatigue. It's debilitating! Ugghh!

I am trying to lose the 25 lbs I gained during chemo and radiation but can't seem to get anywhere. I know the Tamoxifen isn't helping as I am holding water; but if I could just lose about 10 lbs I'd feel a little better.

Anyhoo, hope all is well!!

Hugs!!

Lara

mattiej

Hi, I'm new to this board. But your diagnosis sounds very similar to mine. I finished my chemo on 5/22/17 and had a lumpectomy and sentinel node surgery on 6/29. I only had one instance of vomiting early on. I used the Zofran and CBD oil (legal in 50 states). I had very little nausea with these two. I did however, have massive diarrhea. Some days going 15 times. I used Immodium for this and doubling up (2pills at a time) helped dramatically. I hope you are feeling better soon. Take very good care of yourself during chemo....let others do most of the work if you can.

mattiej

Marjorie

I have just finished Taxol, Carboplatin, Herceptin and Perjeta. The Herceptin will resume in August for one year. I just had a lumpectomy with implant exchange and sentinel node biopsy on 6/29, (waiting for biopsy results). I have peripheral neuropathy in my fingers and feet and am now loosing fingernails. You look so beautiful and healthy, I was wondering if you had any neuropathy or nail loss and if so, what you did about it. I am already taking Vit B complex and Vit B12. The neuropathy in my feet extends over my entire sole and causes stumbling and staggering. I am 65 yrs old. I'm looking forward to retirement.....My Oncologist said my Stage is 1C or 2A and there is a >85% chance of complete remission. Any info about the neuropathy and nail loss is much appreciated. TIA...

Mattiej

Moderators

Dear mattiej,

Welcome to the BCO community. We are so glad that you reached out and shared some of your own story. We hope that you will stay connected here and benefit from the support and information that is readily shared among our members. This thread has not seen recent activity. You may want to look around and find some other topics that have more recent postings. You may want to start your own topic. Let us know if there is anything we can do to help you to navigate your way around here. The Mods

Tennisfan

Bonsoir Mattiej!

Sorry for not responding to you earlier, it's been a while since the last post lol. So, I too had to take herceptin for a full year, with no side effects thankfully, so I did not mind (counting my blessings).

I defintely had neuropathy - I assure you it subsides, but I am unsure about if there is anything that can be done about it... except wait til it goes away... very annoying. I hear you.

About nail loss, AT MINIMUM for some reason nailpolish does seem to protect your nails from going blue and dry. I ordered a product from Europe (expensive thru Amazon but cheap if you know someone in Europe who can ship it to you or better, bring it back. It worked wonders for me but everyone's bosy/reaction to chemo is different. I cannot seem to find it but I am sure I mentioned it in one of my verbose posts from before...

I doubt that your nail loss is due to herceptin (I had zero side efects) but likely from the other chemo treatments - but who knows? I had all sorts of toenail issues so my best, boring advice is... it will grow back to what it was, eventually...

Did you register or talk ro other women in the same month you started chemo? It's been a life saver to all of us - do try a 2016-2017 chemo starting group - the bond is incredible and will carry you thru!

Hope this helps a little,

Marjorie

P.s. Be careful with natural products and supplements. For example, I found that yeast extract was completely contra-indicated for me, and decided to postpone every natural remedy/supplement untilafter chemo, for fear of interference (which occus sometimes).