Stage 2 Sisters Club
Comments
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I am not as lucky in the hair department to begin with. I have very thin/fine hair already about shoulder length. Wonder if I would even have enough hair to have something made like you did. I will look into it for sure. I do think my insurance will cover part of a wig so I will look into that as well. I worry about the wig being its summer but I think I will be like you and not want to leave home without a wig. Being a 'normal' as possible is what I am hoping for. I love to wear ball caps on weekends so never know I guess until it happens. Maybe my hair will come back fuller/thicker after all this.
Thank you for all the information. I truley appreciate it. 0 -
jenisis - they have human and synthetic hair to supplement any hair you send them, or you can have a piece made by them completely out of what they already have - can't recommend them enough. They happen to be located here in Tampa and I had the pleasure of meeting the folks behind the site - they are great and perform a great service for anyone who suffers from hair loss for any reason. Also important to note that for some, Herceptin can slow the return of hair. I did not experience this but many notice that once Herceptin is complete their hair grows faster. Some who are Her2+ end up having to wear a wig or head covering longer than those who don't have Herceptin. I ended chemo proper in June and ditched the wig/head covering at the time of my birthday in early October. My hair was very short but it was hot and I was over it! I used a lot of gel and spiked it up in front and smoothed it back on the sides and wore red lipstick and big earrings to compensate, lol! I am one who did not get chemo curls so it grew like a Chia Pet - I went through a lot of hair product!
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I will definitely check into them. Maybe they can use mine plus some they have to make something nice for me.
Well I have to do Herceptin for a full year. Wow....to think how long I could be without hair is crazy. I have a feeling I to will look like a chia pet when it does come back. Ha!! As long as the cancer is gone in the end it will be all worth it right. 
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jenisis - Herceptin won't keep the hair from returning but could slow the rate of re-growth. My hair has always grown fast, and I noticed no impact from my year of Herceptin. I lost my hair and needed a wig starting mid-March and went without head covering mid-October, so 7 months total. There was so much going on during that time I was pretty distracted, and the whole thing was a blur. I got used to popping on the wig or underhair and proceeding about my day, and honestly, not washing/drying/styling hair was a timesaver - not to mention not coloring and cutting, lol! And, yes, the important thing is to be alive - with or without hair!
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Welcome jenisis! Have you joined the summer chemo group? What about the triple positive group? You will find some great support out there from ladies like SpecialK!
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molly - thanks for the shout out! How are you feeling about your upcoming surgery - all ready?
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Hi SpecialK, thank you for asking. I feel almost prepared, unprepared (LOL), scared and also confident that I will do fine. So I am a mixed bag of emotions! I truly am ready to let go of this breast though. I am trying to look ahead past this surgery to exchange surgery and am telling myself that I will treat me to 3 D tats when I am completely healed!
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SpecialK - I do hope the time flies with distractions and such. Never thought I would wish a year of my life away.
Must say the thought of not having to pay to cut & color my hair sounds VERY nice. Also no shaving for awhile. WHOOP!! Hi Molly- I have joined the triple positive group. I will go look into the summer group as well.
Thank you ladies for welcoming me!!
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I did 4 rounds of AC dose dense. My hair lasted through one round. But when it came time for the second, it felt 'dead' and I started shedding. I had already picked out a wig, so went right from chemo to my wig lady, who shaved my head & fitted the wig. Mine really looked natural & no one could tell the difference (one friend who knew I was doing chemo but didn't know all the gory details, remarked when she saw me at a reunion, "Well, at least you didn't lose your hair".....which was quite gratifying to me). They do get hot though, so if you have a cute head you might want to consider scarves, hats etc. (some hats have attached bangs). That didn't work for me because I looked like an escaped convict without hair!
Two weeks after I was DONE with chemo, I lost my eyebrows & eyelashes. They grew back very quickly though. Eyeliner, drawn on eyebrows & pulling my wig's bangs down low helped with camoflauge until they grew back.
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molly - you will be fine - I don't think there is a way to feel 100% prepared! The good news is that you have had enough experience to know what to expect. I found that somewhat comforting with all of the surgery I have had - I knew there would be a period of meh followed by ok-ness, followed by normalcy. 3D tattoos are the bomb, wish I could have them! They are the cherry on top!
jenisis - weirdly, I had to shave my legs all through chemo, which was super unfair, lol! Then when hair started growing back the first thing to appear was a post-menopausal mustache! Um, what? Waxed that thing off asap!
Like ruthbru - bald was not a good look for me!
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Ruthbru.....Escaped convict without hair.....bahahahahahaha!!
Hilarious!! That is probably what I will look like. My kids may run from me. I think they eyebrows and eyelashes falling out is what really bugs me. I can cover my head but like you said....I can camouflage. SpecialK.....no no no......if hair is falling out I don't want to be shaving my legs still. Ha!! I am sure I will be like you and ruthbru not pulling off the bald to well but who knows. Guess we shall see. As of now I am not noticing a huge change with my hair. It is a little dry but that is about it. Been about 10 days I guess since round 1 chemo treatment. I already get a little blonde mustache going on....no tellin what will happen after all this. YICKES!!
As for the 3D tattoos.......HECK YES!! I will so do that if I end up with double. Which is likely!! No nipple reconstruction for this girl.
Molly50 I am having trouble finding the Summer Chemo group. Can you tell me what its called exactly?
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My hairdresser told me to use Nioxin shampoo, conditioner & a scalp treatment (can't remember the name) for chemically treated hair (because your hair is being chemically treated from the inside out) all through treatment (wash your scalp on the same schedule as you wash your hair) and then switch to the Nioxin shampoo & conditioner for untreated hair once you are done with chemo and use it until your hair is back to full strength when you can resume using your usual products. This worked well for me and my hair came back really nice & is a full as ever.
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OK I will look into the scalp treatment and get myself some Nioxin. Hoping my hair will at least come back fuller. Has to be silver lining somewhere right.
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Thank you Molly50
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Hello Everyone. Welcome Jenn. Apologies for slow welcome. Hope your treatment is going well. I read tomorrow is your second infusion. Wishing you an uneventful day. My hair fell out 2 weeks after first chemo. I then wished I had shaved my head ahead of time. The way things went could have been avoided. You are so pretty, you will look great even with half head shaved 😉 SpecialK, I am back in FL. Wish you lived closer to Fort Lauderdale, where I am. How did last reconstruction go? Hugs to All 💕0
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Nisa, I'm thinking of you and your family. I know this is a difficult time.0
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nisa - Ft L is not that far - I would come and see you, how long will you be there and will you have any free time? I know this is a tough time for you. My recon went well, considering. I have two same sized looking things under my skin, both made of silicone - that is what I was aiming for. It is not pretty, but it is enough. I am more comfortable now that the implants are smaller, and mighty relieved that all of the biopsies were benign findings.
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Hopeful - thank you, thank you, my firend. I know you know. 💕 SpecialK, I am here till Monday night. Thank you for considering coming this way but we will see each other next time. Even if I could stay longer, my SIL asked me before arrival to dedicate all my time to being here with them and to visit with friends another time. "Of course" was my answer. Glad to hear you are done with surgeries! Yet a bit surprised about biopsies? I am sure I don't know more because I only read the last few posts before I posted today. Scary moments for you, I am celebrating with you in spirit!💥💥 🌷🌷0
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For Nisa and Molly ... My daughter's tribute
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nisa - having had this experience myself - I fully understand your SIL's request. We will catch each other another time for sure!
I may need one more fat graft to try to add some softness to my poor left side that has borne the brunt of all of this surgical intervention. The biopsies occurred because I had a PET with abnormal results. I had not had one for a few years, had reached 5 years and was trying to decide whether to continue on anti-hormonals, with confusion added from the results of the BCI test - high recurrence risk and low drug benefit. Because that test is done on the original tumor the question was whether or not I had ever received benefit - so wanted to do a check. The PET showed bi-lat issues, with a 3cm nodule with significant uptake right where my original cancer was, as well as uptake bi-lat at the sternum, and outside near the axilla of the other side. These results came just a few days before surgery and I could not have a MRI due to having an expander in place. After consult with my BS at the request of both MO and PS, we went ahead with the surgery but my PS did a bunch of core biopsies. The path report showed metaplasia, a plethora of suture granuloma, inflammation, and sclerotic tissue - but no cancer - yay! I am having the MRI next month just to double check. It was a scary few days, and I appreciated the opportunity for the PS to have a look see and do the biopsies as well as the surgery. That was a long-winded version of what happened, right?
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Jojo - Wow! Thank you SO much for such a gift. Your girl is amazing! So much talent, balance, strength and harmony in one young person... all the ingredients I lack in music and dance! No surprise she is in "national" finals, hurray! 💐0
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SpecialK - Not really long enough version as so many questions came to my mind as I was reading. So many scary things on that darn PET, But I get the main point is you are well and totally NED. Yay! happy dance here 🎶👠 I can relate to scary PET since my last one was positive too. I now wait until October tests. I don't know about the BCI test, a new thing? Please don't quit Arimidex unless it is hurting you. I say a "thank you" to Arimidex researchers every morning when I take my pill 😊 I will be starting Prolia soon and I want you to know that your opinion was an important factor in my decision to go for it. Forever thankful for that as well.0
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SK - so sorry to hear you've been through the wringer with the recent PET, etc. but glad to hear the biopsies were clear. Hope your MRI is also.
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Nisa glad you liked it... She always cheers me up... Her teacher did a great job of not making it pink and frilly
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hopeful - thanks! It was disconcerting, but thankfully only about 48 hours of panic, lol! I trust my BS and his review of the PET images was crucial to being able to relax a bit prior to the surgery. Also, having the PS actually look at the area internally, and then biopsy, was also good. The MRI is just a follow up - I am not expecting anything other than sore shoulders afterward!
nisa - scary PET scans are no fun! I am sorry you have to wait until October for more info - why the delay? The BCI test, link below, is a genetic assay test that has a two-pronged result. It shows prognostic risk going forward and predictive medication effect. Because this was done on my original tumor the question (that nobody seems to know the answer to...) is whether or not I ever received benefit from taking either Femara or Arimidex. I was compliant for all five years, but the question going forward from here, since I show low benefit from it, is whether or not to continue it beyond five years. This test has shown that less than 10% of breast cancer patients do derive benefit from continuing past five years, and I think many oncologists just leave their patients on as somewhat of a knee jerk reaction to the recent talk of extending anti-hormonals. I have not had an easy time with them - worsening bone health, night sweats, insomnia, fatigue, dramatically thinning hair, two trigger thumb episodes, a trigger ankle and toe, and ring finger, a knee that required a cortisone injection, hip pain that required a year of PT and is still not 100%, probably never will be, joint aching that exacerbates pre-existing degenerated disks in both lumbar and thoracic, and difficulty losing chemo weight gain despite exercise and calorie control - the list goes on. I have to weigh whether the possibly limited benefit of staying on Femara is worth it, most particularly in light of the test result. I had a month long vacation from all regular meds due to surgery and I wanted to switch manufacturers due to a new trigger - so did a washout - and I felt better than I have in years. I have been back on Femara for two weeks and feel like crap, lol! My MO has encouraged staying on if I can handle it, so I will suck it up for now.
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Jojo! Wow, your DD is really good. What a wonderful and powerful tribute! SpecialK and Nisa, sending both of you hugs.
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thanks Molly ❤️
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molly - thanks! I feel bad because I sound whiny in the above post, which is really not accurate - that was a laundry list over five years and not indicative of what I am currently experiencing. I don't want a stage II newbie to read that and be horrified. I do feel different on Femara than I do off, but I can live with it in hopes that it is having a beneficial effect. Because I am NED at the five year point I am a bit unwilling to abandon something that may have helped keep me that way.
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