TRIPLE POSITIVE GROUP
Comments
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but for Hallowe'en I went all NAshville and I loved wearing a long, red wig lol.
Anyhow, that's my hair journey. Love to all of you; we know how daunting this is.
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Thank you, Posey Girl, for sharing!!! This was me at diagnosis.
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All - nope, still no return of hearing, but I'm still on anti-virals. ENT says this can be a slow process, or, this may be it. Should know when I see him again in 3 months.
Posey - you look great at each stage of hair/not hair! I looked like Gollum, lol! Could not pull off the bald thing. Like, at all.
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Then I cut it short to prepare.
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specialk — You can’t hear because of a virus? I missed that. :
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dannajae - yes, likely a latent virus in the chickenpox/shingles/herpetic family - not something I came in contact with recently, but something I was carrying around - possibly for years. This can cause SSHL - Sudden Sensorineural Hearing Loss, which is sometimes reversible if caught early enough and treated with massive steroids and anti-virals.
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SpecialK, I'm so sorry. Is it connected to your treatment? I had a very mild case of shingles when I was 38.
Tess, Thank you for the tips.
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dannajae - No, not connected at all, just a random occurrence.
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Hi Danna, it's so interesting to see peoples' original looks; hair can really change appearance, can't it? I think you can look great with several cuts.
SpecialK, I have several pictures where I look like Gollum. There is one I can't look at; I look very old, my new hair was white stubble coming in (which became mostly brown), my skin tone was bad... of course I am only posting better photos lol.
I am so sorry the hearing isn't improving yet. With viruses, it can take months for bizarre symptoms to go away. So let's hope your meds start to help and that you see improvement. But question...can meds really help anything viral?
Hapb, I did nothing to assist my hair. I've always had a ton of hair...thick. So that's just how it went for me.
Question off topic of hair...do any of you wake up some days and just struggle with darker and scary or depressed feelings? Some mornings I will feel that awful pit o used to feel constantly. Tomorrow evening I have an MRI which I'm sure is a possible trigger. I just feel constantly vulnerable
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posey - there are a limited number of anti-viral drugs available, but they do work - they are the reason HIV is now a controlled disease for many. The particular anti-viral I am taking is effective against the family of viruses they think caused this. On the scary thoughts - it does get better with time, and yes, imaging and appointments trigger those feeling for most. Hang in there!
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HapB - Please search my older posts to read my experience with Herceptin and heart failure. My normal EF before treatment was 56. After 7 infusions of Herceptin, it was 35. It has recovered to the low 50's. I'm surprised your onc has given you a choice of continuing treatment. Mine simply said, "You are banned from Herceptin for life. We should not challenge your heart with Herceptin again." I only read your last few posts so I don't know how your situation compares to mine.
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PoseyGirl, you look amazing and all this new hair, if I can half of its growth by the time I can no longer justify going out in a hat I will be thrilled. I do not count on it much though, for the first time here I rejoyce that springs are so cold in Sweden, i can probably wear a hat throut May. Unfortunately I will now lose all my 1 cm long new hair on EC. But how did you manage to stay that skinny?! I gained 10 kg and cannot look at myself in the mirror, all this fat is in my way.
SpecialK, I wish you get your hearing back. This is no consolation but one of my best friends in high school became deaf on one of her ears while being pushed and fall on the water surface with her ear. I just remembered always keeping myself on the right side when I talked to her.
This EC is kicking my butt, I felt nauseaus throghout the day, last night I woke up and felt that I was about to vomit but I did not because I hate it and after some time it subsided. It is nothing like Taxol, it is a real deal chemo, how did everybody else do it.
Cherry
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Poseygirl,
Regarding dark days: this morning I showered for work and got back into bed and started crying. I knew I had an important meeting, and it wasn’t physical, but I just didn’t want to go. My husband has been so wonderful. He kept telling me what “a good job” I’ve been doing and asked if I needed to go to this meeting. He said he’d be at home tonight to take care of me when I get back. I forced myself to go, thinking there will be worse days when I’m not physically up to going, and I feel so much better here at work than if i stayed in bed feeling ugly and sorry for myself
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Cherry did you also do FEC which seems to be the normal protocol over here or did you only do Taxol to begin with?
I had 3 rounds of FEC 3 weeks apart in the beginning of my treatment and then they moved me to Taxol. Just wondering because perhaps I got this due to the size of the tumor considering it was much larger than yours.
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Kattis, my oncologist and I have discussed it back in September, I told her that I was concerned about me being borderline for further treatment due to high KI67 and the presenceof LVI. She took it up at another disciplinary and first I was given a choice to either do all 12 Taxol or to replace 3 last with EC, then they wanted to discuss further on and I got to finish all 12 Taxol, had two phone calls with prof.Bergh and decided to go on with EC, so only epirubicin and cyclophosphamide. So it was optional but as they told me that one infusion of EC will most certainly not be of any good but will not either cause any harm, I decided that I will aim at least at two since I was already so worn out by Taxol, and two will be better than one. Of course I would like to do all three of them but so far this first is so tough on me, nothing to compare to weekly Taxol, I have been in bed the whole day, as soon as I get up my head starts spinning. What anti-nausea did you get prescribed on FEC? I got Betapred and they replaced Primperan with Postafen since I get restless from the former. Cherry
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PoseyGirl, I have chemo brain again, I intended to reply on dark days and then just forgot.
I am there very often but not as much as I used to be thanks to anti-depressives, I justgot so flat emotionally, they do not let me fall into these abysses of despair I used to fall. Then this upcoming MRI is bitvis doing you any good, you feel relieved when it is over. Let’s hope everything will be fine, it has to be, holding thumbs. Cherry
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HapB - As I said, my EF is not quite back to where I was before treatment which was a low normal anyway. I was on a b/p med before treatment but now I have to take a beta blocker and an ace inhibitor forever to quote "protect my heart".
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bjquilter, i had horrible acne when i had Taxol. It didn't go away no matter what i tried . When i moved on to AC it went away.
I also shaved my head at taxol #4. My hair was coming out by the handful. It was so much easier on me.
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Posey Girl You ROck ! You have a great looking bald head! Go for it!
I started #1 Chemo yesterday - So far so good. My Neulasta pod will go off tonight at 7pm
Anyone take Essential Oils ? my cousin gave me Copaiba. suppose to sniff it for Pain relief, skin disorders, stomach issues, UT disorders, sore throats, and anxiety.Blownaway - would perjeta make a difference?
Dannajae - your haircut looks smart and cute. it suits you!
What is everyone doing for itchy scalp while loosing hair?
Take care all
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Newly diagnosed and scared to death. Have a beautiful 10 year old girl and wonder if I'll see her going to college. First time met oncologist today. Suggested chemo every 3 weeks (ACT) with Herceptin and Perjeta. Probably total 18 weeks (not sure yet, another meeting scheduled to discuss details). Still need to see radiation oncologist. Previously in perfect health. Totally devastated and scared.
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Left, 2.2x1.8cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ (FISH)
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whywhy...
I promise ... it will get better.
I encourage you to embrace this journey and learn all that you can.
In the beginning it is a shock. No woman ever wants to join the BC Club. I will tell you that 17 monthsfrom diagnosis, I am in the best place I have ever been in life. It sucked for a while. (it sucked a lot) ,,, And then I got new-they-are-not-trying-to-kill-me boobs.
Ask ANYTHING you want. The women in this group were my life saviors. You will find love and support here.
And you will get better. It is just going to take some time.
Reread what the woman who started this group said ... it is YOUR body. You are in control. Long after all the medical people are gone you will be left with the decisions and you body. Ask us and all the women here will share how we made our decisions.
Vicky
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Interesting article, Hap although if it said what "high doses" of biotin were, I missed it.
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coachvicky
Thanks for kind words. Some questions. The oncologist recommended chemo every 3 weeks. He said dense dose damaging to heart that's not revertible (unlike Hercepton). He also recommended ACT. Still don't know all the abbreviation yet. More will be discussed with the oncologist tomorrow. Do people with HER2+ mostly do dense or every 3 weeks? I read it's better with dense dose for premenstrual HER2+.
Also what do you think about importance of the facility vs the importance of doctor. I like the doctor I saw. But he is in a very small location with several large chairs for chemo. Not sure about the nurses. Not too far away, there is a fairly new chain Dana Farbar satellite location. Have not met the doctors there but the profile is not as stellar compared to those from Dana Farbar main location. Should I choose doctor over facility? Or is this a pretty standard treatment no matter where I go. So I'll be better off with a new facility (possibly better nurse)?
My surgeon told me to leave all the jobs to professionals and try not to google everything.
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Hey all, Implant replaced the TE yesterday and everything went well. Have to say though that my reconstructive surgeon had me arrive at 7 am and after waiting and waiting and waiting, my sister went out to look at the surgery board (and ask what was up) and was told that although I was scheduled for 7 a.m. my doctor NEVER arrives till 12:30 for his surgeries. What an *** . He showed up right at 12:30, I wanted to hurt him. lol
Want a funny that was not so funny? While accessing my port they put a fish net sort of cap on me and almost immediately my scalp started to itch, and I do mean itch. As soon as she was through, I took off the darn thing and my scalp felt like I had rolled in poison ivy. I scratched like a dog with fleas....today I have scratch marks on my poor head. Envision a mostly bald headed 55 year old woman with scratch marks on her head, stitches and glue across her breast, black and blues from where they removed the monitors. My bottom hurts from the catheter and my throat hurts from what I guess was a tube down my throat. As I was driving back to my home today (1.5 hours from hospital) I got sick and we had to pull over so I could throw up. Hey, but I am still up and kicking!
Posey, you look beautiful!
whywhy, Vicky is correct, it WILL get better. Ask anything and everything, we are here for you.
Specialk, hoping your hearing will recover soon!
Melanie
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Hapb. He is excellent at what he does (very little scarring etc) but, he arrives very late for his office appointments as well as surgery. I stay because he is good. I wish I could charge him for all of the time I lost just waiting on him!!!
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moodyblues, 4,5 h to wait for the surgeon? No doctor is that good, I would have made a scene and wrote a bunch of complains, there is no way it could happen here, at least I never had such experience. Why is he behaving this way, totally disrespectful, what about all other people from the staffwho come on time, are they waiting for him as well, why does he schedule any appointments at 7.00 if he wouldn't show up until noon. I am sorry, I just got so upset for your sake. Hope you will recover soon. Cherry
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whywhy, sorry you had to join this group, I really am, but you will find a source of support and comfort here on these boards, it has been my lifeline since I have nymodern into it by accident while searching the internet. The diagnosis is over-whelming, you are in total shock, I recognize it completely, but it will get better you will find your new normal, you will simply have to in order to survive. I have an 11-year-old myself and it is heartbreaking to look at her and think that we have to go through it while she is so young but she is taking it well, I have to agree with everybody who told me before that children are resilient, she takes it much better than I thought she would.
Your choice over either a good doctor or re-known clinic is hard but both are equally important even though the former was more important to me because in the end you have to trust your doctor. Going to a smaller clinic and save yourself time is also a good reason to choose this closest facility. It is still s bransch of DF so you can always ask for second opinion. Not googling might help but it is hard to stay away from internet since it gives you a sense of control.
The regimen you have been offered is a standard of care for your tumor, I am doing it myself at the moment, done with weekly Taxol and am on my first infusion of EC that is equal to your AC in the US, I am in Europe. It is tough but manageble. I was concerned about EC and decreased heart function but my doctors have reassured me that It is reversable for the absolute majority of their patients. Please ask any questions here, I also been told that a lady who goes under Barred Owl gives very professional answers and here we have our SpecialK, she is a walking Wikipedia to me. Hang in there, it will get better. Take anti-anxiety or anti-depressives, it will make a huge difference, times like these call to extreme measures. Hugs,Cherry
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Why why, welcome and I am very sorry you have to be here. Rest assured that you are not alone and this group will support you. The beginning of a diagnosis and staging is tough. Once the treatment plan is in place and you start, things settle down a bit as you work through the steps and the side effects. As time passes and you get further away from chemo, you will barely remember it and marvel that you got through it. It does get better. I imagine these words may not reduce your anxiety. Many, including me, take anti-anxiety and anti-depression meds. Sleep is aided by these as the steroid pre meds can keep you up at night. Please feel free to complain and ask questions. We have all been there and are here to listen and support. I wish you all the best.
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whywhy,
My chemo was every 21 days. There are others on this board that understand the types of treatments far better than me. Take your time to decided what you want.
Couple of things that helped me early on was to always have someone with me at my appointments. They made written notes. If anyone said anything I didn't understand, I stopped them and made them explain. Ask here too. Words and terms will be thrown around like a foreign language in the beginning of this journey!
I selected the facility over the doctor and regretted that decision. I selected a facility that had privacy as oppose to the oncologist I liked with an open bay facilty. My husband used gel caps on me and I didn't want anyone watching. Looking back that seems kind ofsilly but I was at a different place back then.
I limited my research to the research on breastcancer.org and a couple of oncology research sites. As to your surgeon's comment about the professionals ... I am the professional of my body and my life. Just because someone is an MD does mean they are smarter than me. They may be an expert in a field of study but that is all. Also, call be me by my first name without my permission and I will call you by your first name no matter what your title. Make sure anyone touching you washes their hands. I can't tell you number of times I have told someone to wash their hands!
As Suburbs wrote, if you need something to cope, get it. Just ensure you are correctly diagnosed. My Oncology Team wanted me to take anti depressants. I was not depressed but I knew something was off. Dang, I was daning on my eyelashes to have the cancers removed and be alive! My Primary Care got me to a good Psychiatrist who diagnosed me in shock and gave me prescription drug I needed.
I hope you are feeling better today.
Vicky
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