TRIPLE POSITIVE GROUP
Comments
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deni1661, I hope you will recovery from your surgery soon
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deni, hope your recovery starts going better.
I am not the best at responding individually sorry ladies😏.
I do check in daily.
To the ones who have gone through chemo, surgery and rads.... did you have a spacey feeling some days? I swear some days i can't remember crap. My MO said it should get better but it is so hard I've always been so good as the one who is on top of things.
I had some far grafting done a week ago and so far i love the results.
Happy Friday ladies
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jumpship-I had a squamous cell skin cancer removed. The skin cancer doc said he didn't believe it was related but who knows. I tanned and burned a lot in my younger days. I'm surprised I don't have a lot more.
deni-hugs that you feel better soon.
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shela,
my kids tell me i have amnesia! that is how affected my brain is by all the treatments. for example,i just opened the fridge but did not know what to get and yesterday i switched the twins' lunches! second time it has happened since BC..
deni,
will be praying for your recovery..
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shelabela,
I'm 3.5 years out, and I sometimes still draw a blank. My husband's insurance forced us to switch pharmacies, and I was applying for one of those Awards Cards. For the life of me, I couldn't remember my phone number, a number I have had for the last 20 years! Also, I often rely on my students to come up with names that I've forgotten.
Glad to hear that fat grafting is working out well for you!
deni,
I didn't realize that you were having problems with one of your shoulders. Hope you heal quickly!
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HapB glad your scans are behind you. Relax over the weekend.
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Good news, Hap.
Deni, hope all gets better.
Shelabela .... Oh the stories I could share! Here is one. I am in the office with DH working on lesson plan. I am looking off in space trying to figure out a word. DH asks if I am OK. Sure, I respond. I say that I am trying to remember that word when you advance at work but it isn't a promotion; it has to do with money. DH says, "Do you mean a raise?"
It has gotten a lot better. The Nurse Practitioner on my MO Team told me last September that my energy would be back by year's end and I would begin to notice it. She said after a year the chemo side effects will diminish, again, to the point I would recognize. Everyday I find my strength better and energy higher.
I think what keeps some of the side effects continuing is my daily use of Arimidex. I have tolerated the drug well but I can tell that I take something. I saw the Physician Assistant at my Dermatologist's office on Wednesday. I have noticed that my hair feels thin. She said I have no balding and although not listed as a prominent side effect of Arimidex, she believes (as does the two Dermatologist she consulted with) that thinning hair is an Arimidex side effect. She continued to say that they would not consider giving me any Rx for this because it would interfere with Arimidex's purpose. And then ... she said "we want you to continue with Arimidex" to make sure my cancer does not return. I felt both understood and supported by her words and the depth she went to in consulting others. She shared that in her experience, once a person has chemo their hair NEVER returns to its original state. That does not mean worse; just not back to original. She recommended men's Rogaine stating that the women's formula was weaker than the men's. Unlike using Rogaine for non chemo-related balding or thinning, once off Arimidex I can stop using it. Right now, I have started on a biotin shampoo. BTW, looking at me no one would notice my hair is thinner. I just know the difference. I realize that I am fortunate to have the hair that I have.
Happy Saturday everybody!
Vicky
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Hi everyone one,
Forgive my chemo brain if I do not remember who posted what, lol.
Hap, so glad your tests are behind you.
Deni, sending hugs for you. Wishing you a speedy recovery.
Shelabela, I do get that spacey feeling and I am not liking that at all.
Vicky..your hair looks awesome.
Speaking of hair, I am concerned that mine will never come back. I read that a lot of you started growing hair back after AC and during Taxol. I only had Taxol this time and will be 4 weeks post final Taxol this week. Nothing, zero, head and other areas of my body feel like just smooth skin. I am getting freaked. I was on one of these boards where ladies are still bald two and three years after chemo. Yikes.
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Sorry for not checking in. Rljes, I hope you found the movie!
I just had my second Taxol/Herceptin infusion Thursday. So far, no major SE. I'm curious if any of you do these infusions without a port? I don't know why, but I really don't want a port..... is that weird? Treatment #1 no vein issues, #2 my vein is slightly swollen. So I'm doubting I will make it through the next 10.
Also, I know Tamoxifen is in my future, but after reading how awful that can be I think I would rather just have my ovaries removed. I already had a hysterectomy years ago. Is this not a suggested option with anyone?
So happy for those who have finished your treatment.... you give me great encouragement!
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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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