TRIPLE POSITIVE GROUP

shelabela

tld, sorry you are joining us. Also sorry the nurse scared you. The first day is scary enough alone but to have them say that. You will find strength you didn't know you have.

I am going to spend my time going on weekend trips, so far i have 4 planned. A girls only weekend, a weekend wth just hubby, 1 with family and the last is with my sister's.

Hope all of you are having a great weekend

Blownaway

I posted this before ..... I had my port put in, accessed while still under and first chemo all in one day. Because of having anesthesia, I was pushed in a wheelchair to the infusion area and in a daze which probably took away my apprehension. It was very doable.

coachvicky

Good article, Hap. I still get on the treadmill. Yesterday I did two 15 minute miles. I know that is not great to "real" walkers / runners but at diagnosis I was lucky to survive 15 minutes on the treadmill!

I found this in another forum and thought of you:

https://www.accessdata.fda.gov/scripts/medwatch/in...

Vicky

deni1661

tresjoli, so glad to hear you are focusing on yourself these days. I think that is so very important to our long term wellness. I hope the counseling enhances your marriage; it has helped me and my husband many times over our 33 year relationship!

Shelabela - awesome that you have those trips planned! Much deserved after everything you have been through. Getting away from our daily life is always very good idea 😊

Excellent article Hapb, thanks for sharing! I was walking 3 miles five times a week prior to my revision and shoulder surgeries. I love the serenity I feel while walking and it helps me to put the chaos of my life aside. I took my first walk earlier this week, 20 minutes only but it's a good start. It is going up to 40 degrees today and the sun is shining, that article inspired me so I'm definitely going for a walk today.

Have a great day everyone

SpecialK

hap - this was originally the FinHer study which was undertaken initially related to cost control, and now some additional studies are being done regarding effectiveness. Here is some additional info. Note that the Herceptin was given with chemo, not on its own.

https://am.asco.org/shorter-duration-trastuzumab-may-reduce-cardiac-toxicity-costs

SpecialK

hap - my take is that the DFS/OS is pretty similar between the short and long groups, but that the data showed the longer term Herceptin with chemo was better for the subset of the groups with stage II-III, and node positive. Those who are stage I and node negative may be more suited to shorter term Herceptin with chemo.

moodyblues

Hey everyone, I have been away on a mini vacation, hope everyone is well!  Hope 'V' Day was good for you as well.

I am approaching the anniversary date of my 2/22/17 diagnosis, I cannot explain my feelings but I am overwhelmed.  It is also the date of my mammogram for 2018.  At my support group I was told that the initial diagnosis is/was my earthquake and that the anniversary date combined with the mammogram is like an aftershock.  I wasn't sure at the time if it was/is the estrogen blockers making me so very emotional -crying, feeling overwhelmed and wanting to run away or what it is.  You cannot run away from your mind or body now can you?     *manufacturer changed on my Letrazole, I wonder if the ingredients changed?  My pharmacist said no, she said it was the same drug.  hmmm?

Hapb how was the Herceptin?  You had that correct?

tld,  You can do this!  Shame on her for making the comment about 911, negative comments like that from staff should be banned.

Anonymous

shelabela, I've had a runny nose for nearly a year. I started chemo, with Herceptin in April of last year. I finished chemo in August but started Herceptin maintenance in October. I have 2 more Herceptin treatments left!! Maybe my runny nose will finally go away!! It has been driving me crazy!!

SpecialK

moody - the active ingredient letrozole is the same in each generic, but the inactive filler ingredients are not - and many of these are what contribute to side effects. It is totally possible to experience differences depending on the manufacturer. Hang in there, you will move past the anniversary dates and the mammo, into a year with far less treatment oriented assault. You can do this!

deni1661

Moody, Praying your mammogram is clear and sending hugs for serenity this week. Hang in there and please know we're here for you!

Photogirl81

Hi Ladies,

Today I had a gynecological ultrasound, and I was a bit scared. My mum has ovarian cancer, and I haven't been on a screening for quite long... when I was diagnosed with BC, I asked my oncologist (who was also a gynecologist) if we should check everything "down there". He said it was not necessary. In the midst of everything, it was easy to kinda accept that. But I always had a little fear in the back of my mind... today it was cleared. Everything seems to be fine, nothing suspicious. 8 months of Tamoxifen did not cause any troubles. So today way a happy day!

Moody, crossing my fingers for you! I'm going to have a mammo, an abdominal ultrasound, a chest x-ray and a big blood test on the 28th... Which will be the one year anniversary of my first chemo. So yep...

oh, and stupid hormones make me very emotional... Just yesterday, I bought some food for a homeless guy who was sitting outside the supermarket. After I gave it to him and sat in the car to come home, I started crying... I have always been sensitive to such things, but I did not cry this easily..

PoseyGirl

special K, I somehow missed your wonderful reply regarding what you e changed. Your outlook is amazing and your desire to help others makes you an angel.

Thank you all for your personal replies on here regarding your own changes. Tresjoli, I think your focus on you and your relationship is truly inspirational.

Cherry, thank you for your lovely birthday greeting, and thanks to the rest of you too .

Moody, so bizarre! I was changed on my Letrazole at the pharmacy last week. I wonder if there is something going on with a manufacturer and if we had the same one? I hope to not experience any diffeee side effects.

Tld, chemo is just overwhelming no matter what. We don’t know what to expect at all. All I kept telling myself within that overwhelmed feeling was “this awful stuff is attacking my cancer” and I just wanted it. I saw it as a literal assault on the cancer.

I wanted to mention, ladies, that I have been given a few good books through all this. If you want some titles, let me know

coachvicky

Photo ... you got great news.

Moody ... I was due in June for a mammogram. I waited until August to avoid the anniversary. Like SpecialK wrote you can do this.

Oceanbum ... My running nose did not stop right away. I hope your does.

Vicky

KimCee

I did not see it Hap...guess it was bad?

KimCee

oh great...

tld2017

Hi Ladies! Hope everyone is having a good evening! I contacted Paxman for the cold caps and the gentleman who contacted me was very nice. He is going to try to get the system in my oncologist's office, even if just for my treatment if the office does not want to keep it there. So I'm hopeful about that (not sure if it's really gonna happen but a girl can hope)! I'm not sure if Paxman works better than the Penguin caps but it certainly seems easier to deal with, not only for me but especially for my husband! I have looked at the Elasto Gel mittens online but it seems as if everyone is saying that they only stay cold for 15 or 20 minutes. So, I'm thinking maybe just sandwich bags of ice for my hands and feet? Do you only put your toes and finger tips in the ice or your whole hands and feet? I saw online on a forum that someone said that they simply laid their hands and feet on top of the bags, rather than actually putting their fingers and toes in the ice. The nurse practitioner at my oncologist's office did not seem sure about it, saying that she does not see patients trying this often. But if it can help with nail loss and neuropathy, I'm all in! Thank you so much, everyone, for your input! I check this forum every day, multiple times, and it is so incredibly helpful!!

KimCee

Hi Tid

What I used was bags of frozen corn. I did it for 4 of the 12 Taxol treatments. I put the bags on top of my hands and feet. I got tired of it and stopped. I did it to ward off neuropathy. I have always had great nails and awful hair. I could care less about my nails, but of course, they remained beautiful and strong throughout Taxol and even grew! So bizarre. The hair...gone...no sign of regrowth. Wishing you no hair loss and no nail loss.

coachvicky

I have no idea about this ICE stuff. Glad Hap is a lawyer!

Vicky

SpecialK

The fake ID and passport ads appear periodically on this site, they have for years. I have also seen ads for RX drugs, believe it or not.

red332

tld, I completed my taxol/herceptin treatments 4 weeks ago today. i also coldcapped (there is a separate board here on coldcapping which i HIGHLY recommend, but also happy to give you advice on that over PM). i found the capping very difficult (especially when combined with icing hands and feet) but worth it in the end.

happy to talk with you in more detail over PM, but i did weekly acupuncture (ideally day of or day after treatment) + moxa at home (recommended by acupuncturist). used biotene mouthwash twice a day. i also iced hands and feet (my infusion center provided the ice but it was just ziploc bags with pockets in them for hands and feet (so your hands and feet rested on the ice). i started taking l-glutamine after the first week or two which is supposed to help with neuropathy but i was taking mostly because i had some problems with diarrhea/cramping (my main SE but subsided after a few more weeks). i had no nail changes at all (and like KimCee's my nails still grew during treatment) and no neuropathy at all until about halfway through and then twinges here and there. i ran everything by my oncologist and i also saw an integrative oncologist at my cancer center (after I had been in treatment for a month already, bc that was the soonest i could get an appt) and he blessed everything the acupuncturist had recommended, plus he added beta glucans (some VERY preliminary research that it can boost the effectiveness of herceptin) and vitamin d. i am also in an exercise study at my cancer center on the benefit of moderate exercise during and after chemo treatments, so that keeps me moving.

good luck to you!!!

Cherry-sw

Hi, everybody, I have updated my avatar, as coachvicky once said to me it is always easier to talk to a person when you know whom you are talking to and she was absolutely right. So here I am in my wig, on Jan 28, three weeks after my last chemo, some makeup too, we were going to IKEA, one has to look presentable)))) I have been trying to be anonymous because we still keep it all a secret but I just thought that chances of anyone who knows me to bump into some BCO threads are very slim.

tld, I used soaks and mittens my clinic provided and they lasted throughout the whole infusion but they were really cold in the beginning so my goes and fingers hurt, but then subsequently it became more tolerable when they got a little warme. Just think about that you cannot hold yourfeet and hands to the block of ice during the whole hour. The cold capping is a great idea and will keep you busy.

Hap, I hope Herceptin will be easier this time and you will get through all remaining infusions. I had my 6th today, it is an injection here, and today it was not that painful it used to be maybe because the nurse kept me busy asking questions and listening to me. And today was the first time I got it while I was sitting. I was laying down during all my infusions, no chemo chairs, I do not know whether it has someting to do with my piccline but laying down was so depressing and I just felt like an object letting them to do all this stuff to me, getting this shot sitting was so quick and easy.

Tres, great to hear about you changing your priorities. I think we all have to start putting our needs first now, even though I still will do things for my family but I will focus on myself more from now on, because, well, it turned out no one can take care of you better than you can do yourself, so as long as I can I will. I told it to my nurse today, I said I did not know how I will go back to work fulltime, because now I have to exercise more, stretch a lot, maybe start taking yoga classes and in overall to become a high maintenance bitch, there is no way I will be working overtime I used to. And I want to stay at home until I lose more weight and grew some hair and I intend to persuade my doctors to extent my sick leave. I still work parttime from home.

I have a question to ask, anyone who experienced restless legs while on Tamoxifen? I have been talking to my psycological councelor, who used to be a treatment nurse too, about this awkward uneasiness in my feet when I was trying to sleep that I attributed to my exercising and swelling, trying address it with wearing compression stockings and Elea ting my feet. Once I was only able to fall asleep after an ibuprofen and an anti-anxiety pill. And the councelor told me it was due to Tamoxifen, anyone else who experienced it? I have been taking Tamoxifen for twenty days now and feel very sad sometimes and sometimes emotionless, the councelor booked an appointment with a psychiatrist in order to see whether we should change my anti-depressive med.

I have been exercising a lot, I see the scale starts to agree with me a little but the road is long, I intent to lose this extra weight even if I need to stop eating. What I cannot understand is all my joints and bones aching, I have to stretch and stretch in order not to feel like an old lady. I thought it was due to Tamoxifen but the councelor told me it was residue effect from chemo and the nurse who did the Herceptin shot today said it could be due to the latter. So, will it go away or do I have to live with this ache since I will be on Tamoxifen for many years from now

deni1661

Photogirl, congrats on the great news you received. Praying you have all good news when you have scans and tests on the 28th!

Cherry, I love your picture- you look great! Seriously, super cute.....I want to be as brave as you and others but recently saw pictures of myself from my grandson's birthday. I can't believe how old and rough I look compared to before diagnosis. I try not to put too much emphasis on looks but sometimes it gets me down. Oh well, enough of that negativity! I'm getting my hair cut tomorrow, maybe that will help

deni1661

Cherry, I get aches and pain too and find it helps when I exercise consistently. I still have terrible pain in my tailbone, going on almost a year now. Had an MRI but MO did not see anything significant. It bothers me that they can't find the cause or a solution. Not sure if Herceptin caused it or if it's from the Letrazole.

Don't give up on the exercise or eating healthy. You are seeing positive results for your hard work so keep it up! We can inspire each other to stay on track 😊

Jumpship

Cherry-yes to restless legs. Most days when I was on tamoxifen. Better on femara. Better when I would do my little yoga. Hang in there

Cherry-sw

deni, I took twenty pictures this day and could only use one)) and you are looking at me wearing make-up. Without it I am a fat woman with some salt-pepper-brown-sugar fuzz on my head. I cannot myself nbelieve how much I aged in these last six months. I also had terrible acne while on Taxol so it left some small scars and holes in my facial skin( But what can we do? I bet my neighbours are puzzled when they see me one day going out with some hair underneath my hat and some day without)) Good news is so cold in Sweden that one can wear a hat until the middle of May) for the first time in my life I am glad for that. By then I do expect some pixie in place! The wig looks like a wig without the hat( Hang in there, it can only be better, it has to. The back pain is common, I have been told by everybody, if MRI came back clean and your doctor is bor worried about your blood work then you are having the changes that come with age, that is what I have been told Cherry

Cherry-sw

Jumpship, yes, everybody keeps telling me about yoga and I am considering it but first I have to lose this weight because frankly I annot bend properly with all these calluses in the way.

moodyblues

Thank you everyone for your kind comments and encouragement!

Blownaway

moody - my mammos are every March. I start getting crabby in February and constantly "feeling up" my boobs for lumps. It's just stress...

Hap - it took about 1 year to get my LVEF back to just below my own normal which is 56. Last echo was 49-50. It's only checked annually at this point. I only have abnormalbreathlessness when I bend over or ride my bicycle against the wind or uphill.

Blownaway

Hap - yes,an ace inhibitor ans a beta blocker.

Blownaway

Hap - I was told that I had to take them for life "to protect my heart". I still intend to ask my new cardiologist if I can exchange one or both of them for clonidine which will hopefully help with the hot flashes.