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KimCee,
I never saw hair regrowth while on Taxol. My hair didn't really start to grow back until the February after I'd finished Taxol (early December). But, I still have less hair overall on my body. My eyelashes are still sparse, too sparse for mascara. I don't really have any armpit hair, and my legs are smooth with only a few random hairs popping up, now and then. I miss my eyelashes, but I really don't miss my leg hair! Fingers crossed for you that you start seeing some regrowth on your head.
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GodsWithMe,
Even if you have your ovaries removed, your body will still produce estrogen. So, an oopherectomy is not considered to be the entire solution. However, if you do get an ooph, you would have the opportunity to take an aromatase inhibitor (AI) instead of Tamoxifen.
Both Tamoxifen and the AIs have potential side effects. But, remember, the people most likely to post about these medications are those who suffer from those side effects. Those of us who are doing OK on them don't really post that much about them. (From time to time, I do post on the Aromasin thread about how I'm generally doing OK on that drug.) I often advise women to at least try one of these meds; they can always quit if the side effects become too onerous.
It is easy to get scared when you read about all the negative side effects. Moreover, for some women, the costs of these medications outweigh their potential benefits. For someone like you who is Stage 1, you may not see much benefit to doing hormonal therapy. However, I was diagnosed at Stage 3, so I'm looking to get all the benefits I can from hormonal therapy.
Talk to your oncologist about hormonal therapy. Ask her about the benefits you'd receive from taking Tamoxifen or an AI, and then make your own decision. Good luck!
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Thank you ElaineTherese... I am glad to know it might be too soon. Last time, it grew back much thinner. Then two years ago, after hysterectomy, it got worse. I am not happy at the prospect of it being even thinner. I would definitely have to wear a wig forever. That I totally don't want. Then MO is putting me on Aromasin...I read is another med that will thin it even more.
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KimCee
Try this on your head at night:
Use a mixture of:
1 cup coconut oil
1 cup jojoba oil
1/2 cup castor oil.
Apply all over the head and thru the hair at night.
Oil source: Amazon: Jojoba Oil Golden Organic 100% Pure 16 Oz by Dr Adorable
This is what my barber recommended.
Your hair is going to grow back! Just think about how little you had when born and how long it took to grow. It is the same thing over again.
I am with you Elaine! I just pluck a few armpit hairs and there is little leg hair. WHAT A GREAT BONUS!!! I use to have to shave my legs everyday.
Vicky
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Godswithme,
I had taken Tamoxifen in the past for 4 years. The only side effect I had was weight gain. I had an oopherectomy, only because surgeon would not do full hysterectomy, and got off Tamoxifen and went on Femara. Weight fell off, no side effects from Femara. Then hysterectomy two years ago, new breast cancer in July. My oncologist is putting me on Aromasin because he said Femara was a fail. I would have preferred Femara again.
I am fortunate, a lot of women experience joint pain on the AIs. I was lucky.
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Elaine, thanks! I do need to keep reminding myself that I won't necessarily experience every SE. Reading these posts are a blessing mostly, but can do a doozy on your fears as well.
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HapB, thank you for the article, another thing to worry about although they did state this type is extremely rare. As far as Ashkenazi Jewish is concerned, this part of Ukraine around Chernobyl had an extensive population of Askenazi Jewish prior the disaster and even large before the World War II.
I also read all the posts but do not have so much time anymore bow when I am trapping up on my running and starting rads next week.
I have a question, when do you feel the SEs of Tamoxifen? I have been taking it for a few days and I feel weired emotionally, like I do not care about anything, like a flatline but mostly sad and I have pain in my feet, the PT said it looked like inflammation, especially in my left heel. When I get out of bed I can hardly walk but after some walking or running it goes away until I sit for a while, get up and then can hardly walk again. I started while on chemo back in November but no it actually got worse and I am almost four weeks PFC. And even general bone pain I had after the wbc shots will not go away, it is not as extensive as it used to be but sometimes rolling in bed I feel like I am very old. Could it be because I rushed into running? Is it Tamoxifen?(
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Dear Cherry, Dear Ladies,
This is my first post, I only have been reading all your stories, gaining strength from your amazing willpower.
But now I have read one thing that nobody mentioned before and it's been bothering me so much: the foot pain. Cherry, I have exactly the same feeling that you described! I can barely walk out to the bathroom in the morning, but 3-4 minutes later I'm okay. My heels are the worst. I have no idea what exactly causes this: herceptin? Tamoxifen? Anybody else with any info on this kind of foot/heel pain? Thank you ladies, you are all a blessing for me, you inspired and keep inspiring me in my darkest hours. Hugs to you all
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Hi, Photogirl81, welcome to this thread, I am sorry you have this pain. I know another lady in my chemo group who has the same problem. When did your pain started? I had some pain in my heels even prior the diagnosis because I used to run and was thinking about buying some better shoes for running. But that pain was nothing compared to what I am having right now. When I stopped running a couple of weeks after my diagnosis the pain has subsided and in the end of my Taxol treatment it came back and got worse. During EC it got better right after steroids intake and then subsequently got worse again. Now I am not having any steroids and 2,5 weeks PFC I run for the first time. I cannot tell whether it got even worse. My PT says that to her it feels like calcaneal spur and that I should be stretching twice a day. My nurse at the center says it must be chemo induced, I have not talked to my MO about it yet. Have you talked to your doctor? I wonder whether soaking in Epson salt might help, will order some online. I would be interesting to know what others have to say about it. I have only been on Tamoxifen for five days
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Photogirl and Cherry-sw, what you are describing sounds like plantar fascitis. I have had this on and off for years. there are a lot of things you can do to help with the pain, but if it's being caused by a medication that you are still taking, it may not help too much. A podiatrist or orthopedist can diagonose and give you options for treatment. PM if you'd like some addtl info on things that have worked (and not) for me.
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red332, my PT also believes it might be plantar fascit but since it started during the chemo when I stopped exersizing she wants me to talk to my MO. But I also have some bone pain a little all over, have no idea what to so about that.
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all I can say is that I had that foot pain. It was awful. For me, when I stopped Lupron the pain went away. But I don't think either of you are on Lupron?
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Hi ladies!
Deni, how are you today??
Godswithme, I had to have my port out after 4 AC and had the rest of my infusions directly into the vein...I was fine. I had no choice but to go that route as my port eroded through my skin.
PhotoGirl, I have the heel pain! I get out of bed and hobble for the first two minutes. It's not serious pain so I kind of laugh at myself. But just today I was wondering what the hell it is!!
Cherry, how is the exercise going?? Good for you for getting on that.
I can't comment on the hair thing as mine is ridiculously out of control. It's as it was before and I'm wondering how high it will go up before coming down. I must wear a headband at all times. I've attached a photo to give you all a good laugh. And in all seriousness, I honestly am not sure how you can address it (maybe Vicky's recipe will work?). I know hair growth formulations have helped a friend of mine, but as soon as she stops using it, her hair thins again. I'm sure it's very upsetting.
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Oh my Poseygirl! That's some head of hair. I'm one of those ladies with fine stick straight hair who has always yearned for big hair (and who had it in the 1980s). Mine came back the same, too -- fine and stick straight.
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HapB,
My hair was fluffy at first when it grew in, too. It took awhile to get back to my straight and stringy look....
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elaine-same here...I was so excited because mine came back in with some curl and texture. took about 18 months and straight and fine again lol. I think it is a little thinner on top but mostly the same.
Foot pain-yep, had it. took about two minutes to go away. Walked like a duck. Last year, while I was on arimidex and bronchitis, they put me on an antibiotic, levaquin. We went duckpin bowling for my birthday, and I don't know whether it was the antibiotic that can cause tendon rupture, the flat bowling shoes that we bowled in, or what, but the next morning after two days on the antibiotic, I couldn't walk on my right heel, it hurt so bad. It did not go away for over six months. I saw my ortho foot surgeon a couple times who said it was a form of plantar fascitis, but mine was more lateral and only my whole heel, not down my foot.
Extensive physical therapy didnt help, and after a month, the doc said it wouldn't based on where it was. It took special taping and constant massage with that butter knife thing that would help. But oh my gosh, it hurt for so long.
Body hair-eyebrows are not normal. sparse and some on the left grow straight up. So annoying. Pretty minimal everywhere else too. BUT...I don't know if I had peach fuzz on my face before chemo, but my complexion was great during chemo, and the fact that there was no hair made makeup go on smoothly. Now I have this light peach fuzz, that only I notice, lol, but it drives me crazy.
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PoseyGirl, I think your hair is fabulous. I wouldn't change it!
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fluff queen, I read recently that the FDA has come out with a warning about the levaquin family of antibacterials that identified disabling and potentially permanent damage to tendon, joint, muscle, nerves and central nervous system as side effects.
It sounds kinda weird to say it, but both of my husbands had a reaction to Cipro, which is of the same family!
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Tres, nope, I am not on Lupron, where I am Tamoxifen is the only option for me. I red about plantar fascitis and it seems my PT is right, it must be it, so I am doing the stretching exercises she show me and bought an ortho inlays that relieve the pressure of the heels so we will see. I also discussed it with my cancer rehab councelor who used to be an oncology nurse. I explained that I used to experience some pain in my heels before but it usually faded away on its own bu this time it is so bad and it started during chemo when I was not running at all. Her answer was that chemo is so hard on our bodies that it can cause inflammations of an earlier minor injuries. Maybe it explains why so many of us had it at some point. I am concerned about my running and threadmill exercising, in case of plantar fascitis another types of exercising is recommended instead of running, like swimming for example. I was laying in bed the other day thinking about swimming, do not like it in particular, I used to do syncronized swimming as teenager and the smell of chlorin just reminds me of hours of training but still thought I might give it a try until I hit me, where are you going, what pool, you are bald( Since I am trying to avoid attention it is not an option until I will grow some hair. And it takes ages it seems.
Posey, that was a whole lot of hair, omg, how do you style them? I would probably go as is because I love curly hair. About my exercising, this Thursday will be two weeks since I started to run and I am four weeks and one day PFC. I have either been running 2,5-3 km or running on my threadmill for 20-25 min and I have powerwalked 10 km in 1,30 h and last weekend 12 km in 1,46 h, which I was very pleased with considering my extra weight. If I only could get this heel on the right way I hope I will be back on track. The scale would not show any difference so far and I think I am retaining water.
I also enjoyed wine a few times and I liked it so much that I am cutting it off again. If I am to lose this weight there is no way I can do it if I would drink some wine, because then I would want cheese and chocolate and here we go, I would need a new wardrobe.
fluffqueen, what was that butter knife technique you have mentioned? I saw something about taping, will ask my PT about it today but the butter knife was something new.
And my hair are shedding again, if I will not see any growth there soon I will make coach vicky’s mixture for hair. This is so strange that I enjoy cooking so much but am not good in mixing any facials etc.
Another question to those who enjoy kale, any recipies worth sharing? Chips I tried and it was basically the only thing I liked, SpecialK’s salad dressing is great but then kale is still sort of like chewing fabrics. I thought I liked the chips because the texture changed
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Cherry, ask about using tape for your pain. Use kenesio tape. Works awesome. I had that for awhile and taping it helped a lot. Let me know if you would like a like sent to you
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Posey, I can see you in a beautiful and colorful headband flying down the road in a convertible and some awesome shades. I see your smile, your head tilting back as you laugh and the scenery just flying by. What a beautiful head of hair and when it drops (as you say) I can only imagine how beautiful it will be on your shoulders.
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Today 1 year ago i got my first Chemo. And now I am getting my last herceptin! I can't believe i have been getting this drug for a year. So happy to be done with this part. Me today! I am not a huge selfie fan.
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Me 1 year ago
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Congrats Shelabela!! Awesome!!!
Can't wait until I can say I'm getting my last Herceptin. I've got a way to go.
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shelabela, thank you, how thoughtful, but I just got home from my PT appointment where she taped my left foot) I do not know what kind of tape she used but it is pink) She said it should make the difference and it feel like it USB already better. The neadekvat news I shouldn’t run on the pavement, the good news my threadmill should be fine. Cherry
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shelabela, did not see your pictures when I replied. Congratulations on your last Herceptin! And look at all this hair! Beautiful
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Looking good Shelabela!
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Cherry-here are a couple links on taping and the Graston technique. The Graston technique is the butter knife thing. It is a tool that works the soft tissue. It hurts like heck when they do it but feels so much better after. A PT used it on my plantar issues as well as when I had a small tear behind my knee. I swear it worked better than any stretches I was doing.
https://heelthatpain.com/plantar-fascia/plantar-fascia-taping/
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Hi Ladies,
Red332, I would love to hear what worked and what didn't for your foot pain. Not sure how to pm you, getting to know this site.
Shelabela, yaaay! Congrats!!!
Someone asked if anyone is on Lupron. I am on Lucrin (I think it is the same thing as Lupron) and Tamoxifen. I needed Lucrin to stop my ovaries, as even chemo didn't stop them. My doctor almost did not believe that during chemo my body worked as if nothing had happened... so I needed to start Lucrin during chemo. I will get it for at least 5 years, once a month as a tiny shot in my belly.
I honestly can say that apart from the foot pain, I am kinda lucky and really did not have to deal with severe SEs. I am 4 more Herceptin shots away from being done, well sort of done. Lately I get chilly a lot, that might be Herceptin. Anyone else experiencing that? Apart from the shitty hot flashes, I am mostly chilly.
Oh, and since hair regrowth was discussed... I was kinda lucky, as my fluff started to grow out before my last Taxol. And since my hair has always been a slow grower, I try to help it with two things: I use Alpecin shampoo every night and I leave it on for 30minutes. And I take a vitamin complex called Hair Clinic. My last chemo was June 20th, 2017 and I stopped wearing a wig in early November. By that time it looked as if it was like that on purpose (very very few people knew what was going on with me so I needed a "believable" length...
Hugs to you all
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Shelabela, yay on your last Herceptin! You look great, time to celebrate. Hope your healing from the grafting is getting better each day.
Posey - I love your hair! My hair used to have a similar texture like yours but now it has gotten so dry and brittle that it breaks off. My hair got really thin when I was on Arimidix but now on Letrazole it has grown in more but still thin due to breakage. I use Palmers Coconut oil to combat the dryness.
Thanks everyone for the kind get well messages, you made my day! I'm getting better at one handed typing lol
Photogirl, sorry you had to join us but welcome to this wonderful group where you will find unconditional support and helpful info.
I get the foot pain too; both feet and it's really bad in the morning. My whole body hurts when I sit too long and it takes a few minutes to loosen up. I haven't been able to exercise since my shoulder and can't wait to start again. I think any form of exercise helps with the pain.
Forgetfulness yes...my care team said part of the problem is HP, part AI and for me having multiple surgeries under general anesthesia for 3+ hours could also cause foggy brain. I think the last part is true; my brain is good for nothing since my shoulder surgery 2 weeks ago. I love to read and these days I can't retain anything and find myself reading the same pages over and over.
It's a long process getting through all this...hang in there. We WILL make it to the other side!
Hugs to all 😊
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