Update on IV chemo of paclitaxel, traztuzumab , pertuzumab treatments for triple positive metastatic breast cancer . After progression on Ibrance and faslodex injections . Mets present in bones , lungs ( small ) liver 3 Mets and a few active lymph nodes.
Round 1 is completed!
So far not too bad . I had a little too much energy after the paclitaxel infusion no sleep wide awake for about 36 hours straight . I took a couple anti nausea meds and a few extra strength acetaminophen for some weird random radiating pains this started about the 2-3 days after infusion and lasted about 3 days ( but I was still able to carry on with life and taking less acetaminophen than before new treatment ) I have starting using CBD a oil for pain and this maybe helping , I understand it takes a few weeks to see results .
My hair has not started to fall out yet but my scalp is sensitive so I figure it will start soon , I am on day 15 since my initial paclitaxel infusion and have had 2 treatments , Any ideas on the expected hair loss ladies ? I picked up my wig yesterday , I might have it trimmed yet but wanted to play with it first . I am hesitant to shave my head just yet but I did have it cut super short in December so it won’t take much. I wish I was brave enough to rock the scarf head covering or just go bald ( too cold in Canada eh ! In the winter) but I can’t handle the “ looks” from people . It is so silly at my age . I don’t hide my diagnosis from people but I also don’t share with everyone .
Long post but I thought if I could help someone else feeling anxiety about having to switch from hormone therapy to IV a chemo it might be helpful . I am only 1 round in but I actually feel better than I have in about 12 months. I am expecting as treatments go on it might get a little harder but we will see. I have a CT as an scheduled for Feb 1 ( which I thought was a little soon ?? ) I will have only just had my second round on Jan 27 . But I am tired of questioning and I am sure lol they are tired of me questioning them also .
I have added a picture of my with my new “ Do” I think I will call her Beatrice after my grandmother , she wore a wig and loved my wig from my first round of cancer 18 years ago .
Hope this long read can help someone else out there.
I feel,so much better after going off Ibrance & Faslodex and hoping like heck. It stays that way.
Thank you for this! I am still on anti-hormone pills, otherwise known as Letrozole. I was supposed to have been taking Ibrance but have not done that. Letrozole is bad enough. It really takes almost all of me down. Your message is enlightening. I will be going on to my next line of treatment, hopefully a long time from now, with much less dread.
Letrozole was really hard on my hip and leg joints . Faslodex was better but ibrance and faslodex quit working . I hated to admit that the wonder drug of ibrance wasn’t working for me .
Loved reading your post, Luann! Your loooooong stretch of cancer free life was similar to mine. I was cancer free for 17 years before it reared its ugly head in November, 2017. Nothing will compare to the shock of that MBC diagnosis. If we survived that, we can bear whatever lies before us, yes? God bless you! XXOO Linda
Dear Flower lady. You asked about a time line from hair to baldness. It took two weeks for me. I didn't mind losing it but what I really did mind terribly was the loss of my eyelashes. You'd think that a woman of my advanced age would not worry about the lack of eyelashes but I went to great lengths to camouflage it.
I am thinking about getting magnetic eye lashes lol . When I had hair loss 18 years ago due to chemo it was my eye lashes that bothered me the most . I think I had about 3 eye lashes let before they started to grow again . Thank you for sharing the 2 week info .
We are who we are and if we can do things that help us along why not !
Even though I was diagnosed de novo in July, my first oncologist went ahead with the initial chemo plan. (I have a new oncologist now, after a second opinion... and have been on Ibrance/Letrozole since late Sept.) Anyway, that means I had chemo FIRST... which makes me more a rarity on this site.
My (biweekly) chemo regimen was AC. My oncologist warned me that my hair would start falling out after the second treatment, and she was right. For me, I got tired of hair on my pillow (and in my mouth while I tried to sleep), all over my hands during the day, and the itchiness it caused around my neckline as it started falling out. So, I bit the bullet even before it fell out naturally (all the way)... went into the backyard, sat in the sun, and shaved it all off myself. Scalp was sensitive before I did this, and continued a bit. So, I slept with a cap on for a few nights.
I did the bald boldness thing myself, regardless of "looks" I got. I even did video job interviews without a head covering. It may have made the other person more uncomfortable, but I felt I would be wearing a scarf or cap for them... and I didn't feel like worrying about their response. Since this was summertime, any head coverings, including baseball caps, just made my head sweat! So, it worked for me to rarely wear headgear, and I just didn't feel compelled to get a wig. (I did wear a baseball cap to the store, more so because I wanted to limit sun exposure to my hairless head.)
Wishing you the best! Nice pic, too! You remind me of Patti LuPone in that shot!
Mary
Thank you Sandra I actually called my nursing triage to question if the scan would include my neck area ( because I was hoping it would ) and it doesn’t include it , just the torso . I played stupid and said “ oh with the radiation treatments I had in Nov . I thought they might be checking to see how it is working and I was told” it takes 6 months for radiation to show its full results “ . I must have missed that info at meeting with radiologist but now I know. I had my last CT scan dec 14 , I guess I can’t say I am not getting attention . These last two scans are only 8 weeks apart .
I hope you are doing well ?
Luann
I think it is great when people feel comfortable rocking the bald and who knows maybe I will get the courage ?? Too much sun on the head is not good. Frost bite isn’t either lol
That is strange that your oncologist would treat your cancer so differently. In Canada I believe there is a standard treatment plan for each cancer diagnosis BUT a I could be wrong .
I'm in Canada (Saskatoon) as well. The standard treatment here for ER/PR+ HER- is letrozole & Ibrance. The Cancer Center team was not amused when I insisted on trying tamoxifen first (I'd taken it for five years after the first cancer bout and knew I could tolerate its side effects easily). It seems Luann is right that there is a standard plan for each cancer here, and the team is convinced that should be followed by everyone. It makes me wonder why we need to pay these people so much money if there is no thinking or research involved!
It's been 18 months so far, and tamoxifen still seems to be working. However, who knows what the future holds. The experience of almost everyone on this site seems to be that all treatments ultimately fail. Thanks for your uplifting attitude and the encouraging words about your chemo treatment.
I think you and Beatrice are made for each other! So great to know that Beatrice can keep your head warm in our cold climate.
My oncologist actually mentioned the possibility re introducing tomoxifen as a possible treatment. She said if the body had not had that medication in a long time it may respond to it again ?? At this point she has not mentioned it again and I didn’t jump on the idea. If my memory serves me correctly I had a lot of joint pain and hot flashes were brutal but that was at another time in my life ( 15 years ago ) I am sure my body has aged a little more since then ☹️. I am glad that Tamoxifen is working for you .
I was past menopause when I took tamoxifen, 2006-2011, and didn't have noticeable reactions. Triple-positive cancers may not react the same as the most common breast cancer but it may be worth giving it a try. I envy you your oncologist who clearly is thinking "outside the box". Warmest of wishes for the future! Cindy
Don’t shave your head yet! I almost did when put on IV therapy, but most of my hair remained, so I never needed the wig that I had gotten! (Your wig is much cuter than mine though, but I remember how annoying wearing one 23 years ago during my first go round was....)all the best with this new treatment!
I was on docetaxol last winter...it worked very well, but since then I’ve been through three other treatments....now on Xeloda, which I really like...it’s in pill form, and the side effects are not bad! Docetaxol was also pretty easy....I was also on herceptin and another IV that started with a p, but since then it’s been determined that I am not HER2neu +! I’m just ER positive at this point.
my mom is ER+ Her2 - she had been on ibrance and letrozole for about 2 years, then she started feeling body here and there, kind of comes and goes, unfortunetly some month later she got her CT Scan and it showed some progression for her pleural effusion and a lot more on her bones, they are now wonderign what to try next. In the last week I have started to read How to Starve Cancer and i have to say it has opened my eyes. I have tried to get my mom on some of these supplements but she has lost a lot of weight lately so she can't take all of them. I suggest all of you to read the book and find a natural doctor that can incorporate the supplmement with whatever ur taking. I was told by her current doctor not to take turmeric with ibrance but now i have read that it actually enhances ibrance.
We are located in toronto, canada and I am wondering what was the next treatment for you ladies?
also i wish you all well, don't give up hope, miracles can happen
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What next after ibrance and faslodex?
UTI and ibrance/faslodex treatment 
Anyone go on Verzenio after Ibrance stopped working?
To how much hair loss?
Lowering Ibrance dose 
