TRIPLE POSITIVE GROUP
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Paloma1211, it took me a good ten weeks before I could finally say ahhhhh, it's coming back. I'm posting a pic 10 weeks out and where I'm at today, 7 months later. It takes forever but it does c9me back. I'm still drawing in eyebrows, not sure they are ever going to be full.
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Mactaz, you look lovely with that short hair.
I kept my hair very short after it grew back and I look better than before.
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My hair timeline was very similar to hapa’s - but it is important to note that after chemo is finished but still receiving targeted therapy the hair growth can be slower. You may experience an acceleration in growth once H/P are done. For some, the new hair can thin on anti-hormonals, which overlaps the H/P, so it’s hard to say what is causing what for some of us.
mactaz - you look so cute!!
Wc3 - yay
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Mactaz - you look great! Thank you for sharing your pics. Thank you to all who have shared your experiences. I guess I’ll just have to be patient. I’m starting rads in the next couple of weeks, and am still doing Herceptin infusions every three weeks, so...like all things, my hair growing back will just take time. Thanks again - I’m so grateful for this group
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I am one year out from Chemo and unfortunatly my hair isn't coming back. I guess because of the H&P and hormone therapy. I still have completely bald spots and where the hair is growing, it's so thin it might as well not be there at all.
Oh well, I'm here and really that's all that matters. I have amased quite the collection of hats!
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SpecialK--I never thought about the fact that targeted therapy-only infusions could slow hair growth, but maybe that's the answer! My hair is growing but it's only grown an inch in seven months? Mactaz, you and I were diagnosed the same week and I have a similar amount of hair but it wants to stick STRAIGHT UP--the thickest of gels won't keep it down. That's what made me choose my Avatar . . . my husband looked at me months ago and said, "You look like Dash from The Incredibles." And I do! My daughter is getting married in four months and I'm thinking about wearing an orange dress with a black mask. 😊
Edited to add a wedding fashion inspiration idea by Beesie:
I think the earrings and bracelet really compliment the mask--she added all those.
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MAKTAK,
Your hair is beautiful. I love the color too. My hair came back in all gray . I tried to keep it but one day my brother made the comment that "from the back I looked just like MOM". That was it. I am too young to be an old lady even if I am 61 years old.
Here is the first day photo that I went to church all grey. (2 1/2 years ago)
Here is how I look now. I take 10,000 micrograms of Biotin every day. There are parts of my head in the front that are very thin and so I comb my hair forward and wear bangs. I have to color it every 6 weeks and do a brazillian treatment on it because the left side grew back curly, and the right side is straight. You can see the curl that I tried to control with mousse.
Even when our hair grows back it has a mind of its own. I am still getting used to it.
Angelsgal
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Just re: hair--I started taking Biotin before my dx and am still taking it. I think my hair grows about the average 1/2"/month, even through Herceptin. Anybody have any idea when hair starts to return to normal? Like what it was pre-chemo? I have poodle curls that I HATE.
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Everyone: Thanks for the congradulations! I would give you all cake if I could!
LaughingGull:
It is unsettling but as I understand it, two years of HP is not better than one year. I figure that if anything is left then it is either dormant, HP resistant, or in my brain as the chemotherapy and Herceptin does not cross the blood brain barrier without radiation to disrupt it.
I sure wish I could get that HER2 vaccine though. I don't qualify due having had a pCR. I understand the necessity for such a restriction, however. It would be impossible to determine if lack of recurrence was due to the vaccination or the pCR unless they could look at the pCR group specifically, which I guess they don't have the resources to do.
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BigPeaches, I’m inspired by your attitude and it is funny how this disease continually challenges us. Hats are awesome, I wear mine sometimes because I miss that flair.
Bessy, your comment cracked me up, I felt like that about three weeks ago as my hair was sticking up also, it finally flattened out a bit but now I have to put all day conditioner in it so it will stay down. My DH also came up with names for me as I went through different phases, I.e., my Russel Jackson (Madam Secretary) phase.....
AngelsGal, my hair color was very similar to yours, gray and white. I also thought I would let it go but one day just couldn’t take it and the dye came out.
Ingerp, I love curly hair, maybe we can trade. I’m hoping mine start to curl but I’m thinking it won’t. I did read that it takes several hair cuts before the curl is gone.
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Mactaz--I've read one year, I've read two years, I've read never. I can see that *maybe* the curls would be kind of fun IF THEY GET LONG ENOUGH. I don't have near enough length/weight to have them not stick up. I'm keeping my fingers crossed that maybe I won't be so cranky/sad after I get it lightened up. I can't say I ever loved my pre-chemo hair (what woman actually likes her own hair??), but I just don't look like me. I haven't for over a year. <grumble grumble grumble>
BTW you look adorable!! I see so many women here who really rock the short hair look. I'd consider it if my hair straightened out, plus I've decided over the past couple of months that cute little pixies look better on. . . well. . . cute little pixies. I'm definitely not small, and have decided I need a little more up top to balance it out.
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Here is our Research News article on this topic:
Allergan Issues Worldwide Recall of Biocell Textured Breast Implants and Tissue Expanders
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does anyone know how I look up a Trail that's was done a few years ago, I really would like to know more about this ... in my online support group a lady wrote
"I participated in a clinical trial and received only Herceptin and Perjeta every 3 weeks for one year - no chemo or radiation. Had amazing results. I'm on Letrazole for 5 years. Cancer free 2+ years and only lingering side effect is muscle and joint pain from AI which is quite manageable....the trial was through cancer treatment centers of America. It was done at the Chicago location, as well as the Atlanta location."
I have asked the name but no response. Thank you in advance. Kim
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deni1661, a member of BCO.org, was part of that trial. I haven't seen her around lately, but you could send her a private message to ask for the name of that trial.
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ElaineTherese, thank you ..
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This is the trial:
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SpecialK
Thank you !
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Kimm - the NEOADAPT trial is active but no longer recruiting. I don’t believe they met the enrollment goal either, which was fairly small for a Phase II trial, they wanted 32 and had 7. From what I can find the primary end date was Dec 2018, so I’m not sure they have published any findings yet.
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SpecialK, yes I seen that.. there was another similar PERTAIN .. I have posted Army of Women on a few FB sites so more women TPBC know about these sort of things as well and can get involved. I wish I had known about more before I rushed into treatment back in Feb 2019 ... I am my own advocate, as no one has told me about all this research that has been done. Trying to find answers as to why some TPBC get TCHP and others AC-T then HP, etc etc. I know alot has to do with each person's MO and their TPBC, but still see similar diagnosis and still different treatments and reoccurrence rates, etc ...
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kimmh012:
My facility does not use adriamycin containing regimens like AC with Herceptin due to the increased risk of cardiomyopathy with that combination.
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My MO does not routinely combine Adriamycin and Herceptin either. He follows the protocol favored by Dr Slamon, the Herceptin researcher at UCLA. I think there are a number of factors that determine the regimen decision for individuals - patient age, cardiac health, tumor characteristics and stage, MO/facility philosophy, etc. TCH/P, AC-TH/P and TH/P are all viable choices made for a variety of reasons - I think it would be hard to compile statistics that would determine which provides best outcomes in the absolute since there is much that is unpredictable.
The PERTAIN trial followed the typical path of most drugs for breast cancer in that the drugs are trialed first for metastatic patients in an effort to prolong a progression-free duration. This trial showed about three additional months for enrolled patients on anastrazole plus H/P. Depending on success trialed drugs are then offered to earlier stage patients. Important to note that most MO strive to treat metastatic patients without chemo initially and I believe this trial was an effort to find a combination to address both the hormonal and HER2+ aspects while limiting toxicity, ifpossible.
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Thank you WB3 and SpecialK especially on the Trial information... I read them and then look for the cliff notes LoL
Maybe I worded it wrong, chemo fog is real...
I first did 2 rounds of TCHP All in one 6 hour infusions if I stayed I would have had 6 cycles then 12 more just HP... Now that I switch MO I have done 2 AC. I will have 2 more AC, then 2 THP (taxotere) and 14 months of HP, whereas others I have read did 12 weeks taxol and then 12 HP... get confusing, I have pretty much given up trying to figure it out LOL...
Thanks again
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Kimm—it’s typically HP along with your chemo for as long as you’re getting chemo and then HP every three weeks for the balance of a year (so the number of HP only will vary depending on your chemo protocol).
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Kimm - your situation seems unusual because it appears that you have switched regimens in the middle to add the anthracycline based regimen, then will come back to finish the taxane portion in a dose dense manner. Taxol and Herceptin as a stand alone regimen is generally used for stage 1 patients, node negative, so wouldn’t likely be applicable in your case. I am guessing you won’t receive 14 additional months of Herceptin, but rather it will be 14 months total to make up for the time period of infusions of AC which didn’t include concurrent Herceptin.
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Ingerp and SpecialK, that's me unusual, hense why I so confused and finally frustrated enough to speak out... mpst everyone has done Taxol with AC, where I am doing Textotere. HP is 18 rounds total ... I did have Micromets in my Sentinal node but everyone I talk too say that's no big deal and I still have DCIS after 2 lumpectomy surgery. My first pathology said only 1mm clear margins and Radiology said they wanted larger margins so they went back in again and now say DCIS in every slice ... I have appt with 2nd surgeon and radiologist on the Aug 2nd, so we will see. Things are just not adding up for me, so I will continue looking ...
I have asked for explanation from my MO, and he just says this is the best regime for me.
Has anyone seen anyplace that let's you send in your pathology for second, third, fourth opinion online?
Things are just not adding up for me, so I will continue looking...
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kimm - Adriamycin with Taxotere is a legitimate regimen, here is the Her2+ chemo regimen page from the NCCN guidelines for breast cancer. I feel like it is not combined often because of the potential for more intense side effects.
Also, I believe Johns Hopkins does pathology second opinions remotely. Here is a link for that also under the chemo regimen page. Also Stanford and U of Colo.
http://pathology.jhu.edu/department/services/secondopinion.cfm
https://stanfordhealthcare.org/second-opinion/overview.html
https://www.uchealth.org/services/cancer-care/remote-second-opinions/
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I did AC alone - 4 rounds then 12 of taxol with every 3rd one with HP. I will continue HP for a year. I had mircromets in 2 nodes. My BS and MO thought the micromets were a big deal. With out that, I would not have had to do chemo - just radiation.
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Annie60, I was under an impression that, for her2+, no matter which stage it is, chemo is always needed, am I missing something here?
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All I know is my BS had said that with as small as my tumor was, I could do a lumpectomy and radiation. It wasn't until after surgery and had positive nodes (2) that she told me I had to have chemo. I remember how shocked we were. Perhaps I would have had to have HP anyway since I was Her2+.
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