TRIPLE POSITIVE GROUP
Comments
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In New Zealand we don't have access to perjeta either through our public health system. Maybe privately it can be accessed but it's very expensive. I signed a petition earlier this week to enable this important drug to become openly available. Herceptin has only been publally funded for for a few years. When I first found out my diagnosis I asked omg do I need to start fund raising. Thank goodness no I don't.
Take care
Helen
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Hi Kattis894:
The studies that led to the approval of pertuzumab (Perjeta) in the neoadjuvant setting included several different types of regimens. As a result, several different neoadjuvant regimens with three to six cycles of Perjeta are included in the current FDA label (March, 2016). The number of cycles of Perjeta appears to be linked to the other components of the regimen. One such regimen from the label is:
"Three preoperative cycles of FEC alone followed by 3 preoperative cycles of PERJETA in combination with docetaxel and trastuzumab as given in Study 3"
". . . Following surgery, patients should continue to receive trastuzumab to complete 1 year of treatment."
For the neoadjuvant component, our local NCCN guidelines for breast cancer (Version 2.2016) include examples of FEC-first regimens in which three cycles of FEC are followed by three cycles of Perjeta, plus trastuzumab and either docetaxel or paclitaxel, more generally summarized as:
• FEC followed by docetaxel + trastuzumab + pertuzumab
• FEC followed by paclitaxel + trastuzumab + pertuzumab
BarredOwl
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Tresjoli,
I'm 45. I just finished Taxol and have had one Herceptin treatment. Eight more months to go. I am fairly certain thatnext week when I go for treatment, I will get my Tamoxifen script. I'm terrified! I don't want to feel old or look older sooner than I should. Cancer sucks! Can we take vitamin e, fish oil, and vitamin d to help?
Bird
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I don't know Bird...the side effects aren't truly that bad...don't let my post scare you. It's well worth it and I'd never stop. I think I'm just tired. I had my port out in June and immediately started a new job at a new company. And once my port was out and it was "behind me" the exhaustion has set in, like I had run a marathon, and now it was over but gosh am I tired. Did that happen to anyone else here? I just feel worn out. My six month scan is next week and I had the dumb cyst thing going on...I don't know. I have to re-findmy pep in my step. My get up and go has got up and went lol..
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Tresjoli, I'm sending love and joy your way. I cried my last Taxol, which was weird. I couldn't understand why then. It's not like the journey was ending. This week I see the PS about the exchange and have my Herceptin infusion. I loved having the last two weeks off! However, I'm tired of being bald 😒. I wish you happiness 🎈.
Bird
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Tres and Bird, I am also very tired. I ended rads on Aug 25, just had my (13th I think?) Herceptin infusion - I don't end until Feb. 2017. My diagnosis anniversary is coming up in a few weeks. Letrozole makes me hurt, I'm in PT for range of motion issues and shoulder pain, so the doc appointments are still going strong. This week it's a cholesterol baseline, a lymphedema check (that was this morning, all is good) , a DEXA scan and more PT for my shoulder. I work full time, I have two kids and am constantly juggling schedules. I never had any health trouble with anything until I was diagnosed. I think part of the exhaustion is that I don't sleep at night, and I am trying to go at a gazillion miles an hour like I did before. I remember last fall I had dark circles under my eyes, I blamed it on my body trying to fight the cancer. This summer they subsided, but I am getting that sickly look again.
So clearly, I am more than ok for complaining here.
In a few weeks I am going on an overnight hike with some dear friends who make me laugh, I am looking forward to just being outside and away. 0 -
Tresjolie
The exact same thing happened to me after getting my port out. I explain it this way. For a year I was running on adrenaline. Lots to do. Appointments galore. Run run run. Be strong. Then all of a sudden a huge let down. Crisis over. Exhaustion sets in. I could have slept 24/7. So you are not alone
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I have two questions regarding bone loss drugs, side effects, mets and AIs; I am 57 and was found to be osteopenic just before chemo began.
1) Is there anyone here who has taken AIs, was osteopenic at start, and has not taken bone loss drugs? I am particularly interested in learning about what alternatives I have to bone loss drugs. I worry, based on the rare side effects I got with Taxol and recently with an antibiotic, that I indeed may be one to experience the rare jaw and spontaneous fracture side effects of these bone loss drugs.
2) Does anyone know if the injectables work as well as the infused drugs for bone met prevention? Are all biophosphonates the same in this regard? What about the biologic Prolia, with respect to met prevention?
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Zoziana, I have no answer, but all the same question you have. I was mildly osteopenic before treatment and I've had a big decline since starting, although I'm still in the osteopenic range. My family dr. is worried that if I continue to decline at this rate I will have osteoporosis in no time. She suggested Prolia. I'll be talking with my MO about this next month.
Does anyone know if the bone loss is steady over time or if there is an initial decline and then it levels out?
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Zoziana,
I was borderline osteopenic when I began to take Aromasin in February 2015. I am taking Caltrate twice a day to stave off future bone loss. I will get another dexa scan to see whether or not that is working in February 2017. If not, MO and I may begin to talk about other measures.
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thanks guys. I so appreciate the virtual hugs and support!
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6 month follow up MRI tomorrow. Fingers crossed. I hate Mri's. The knocking!,,
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Ugh, Tres. I hate MRIs, too. PET scans are so much more peaceful! Hope you have a great outcome -- NED, NED, NED!
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tres - fingers crossed for you
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We'll be thinking of you Tres!
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Has anyone experienced shortness of breath during the taxol treatment?
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I had MAJOR shortness of breath on Docetaxel...it went away after treatment was done!
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Kattis - yes; I was told it was because of low hemoglobin. And low hemoglobin is a typical side effect of taxol.
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Kattis, yes. I had shortness of breath and some chest pressure. The following week my MO switched it to Abraxane. Are you keeping your MO up to date on your side effects
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kattis - if you are experiencing shortness of breath during the treatment itself it may mean an allergy, and as musogirl suggests, it needs to brought to the attention of your oncologist and a possible switch made to Abraxane - it is also a taxane, but without the solvents that cause an allergic reaction. Some docs will try Taxotere first to see if you tolerate it better. Shortness of breath in the days/weeks after infusion is more likely to be decreased hemoglobin, but it usually takes a while for that to happen as your counts go down incrementally the longer you are receiving chemo.
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I could not breathe well at all on taxol. I suffered through seven treatments with high levels of steroids. I could feel my body fighting the medicine in the chair, and had anaphylaxis during my first dose. I switched to Abraxane after a hypotensive 7th treatment. Abraxane was awesome. I didn't have any trouble breathing when I wasn't in treatment.
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Kattis - Herceptin caused my LVEF to go from 56 to 35 after only 4 infusions which caused huge shortness of breath and edema in my legs. Ask for an echo or MUGA just to be sure.
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stalking my patient portal...sigh..why aren't my MRI results posted yet, and why am I so anxious? I had been hoping to find out then and there if I had the all clear (like I do for my mammos) but I didnt. then I thought..they just post the report to my portal...but they didn't ...sigh..tick tock
. .
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Tres if you're at DFCI they didn't post MRI results the times I've got them, they've always called first, and they'v all been negative. They seem to post after the call no matter what, so don't fret that it's a sign of bad news, because it's not
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zozinian, i had osteopenia before BC and drug, kept fracturing things, neck, ribs, elbow, shoulder, did the fozamax but all that did was give me gerd. Finally agreed to prolia shots, haf my 4th injection this past Tuesday. No side effects, hope to get bone density test soon to see improvement from the shots. I have also been doing yoga to strengthen and help with bone growth, I will let you know when tests are done. But feel good about this. Take calcium 2-3 times a week also.
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Thank you for your replies. I am going for treatment tomorrow and will bring up the issue of the pressure on my chest and shortness of breath to my nurse. I am also having a mammogram in the morning before the taxol treatment to see if the tumor has shrunk or grown or if it still remains the same. I thought perhaps the pressure in my chest is just due to nerves but of course I will bring it up after reading your advice here. Thank you!
Of course I am worried my body will not be able to take the planned treatment. Each week I am happy as a clam when the medication has entered my body and I am on my way home, especially with the cortison that keeps me "high" a couple of days. I am now only getting my 5th infusion of taxol of the planned 9. I am beginning to feel very fatigued on the 3rd day and like to stay in bed for a couple of days watching meaningless shows on television. I should be out walking every day but just seem to push that walk of to tomorrow.
I have decided to join a bc group for encouragement. I live alone so I do not have kids that keeps me going nor a caring husband for support.
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Kattis894:
It is normal for the weekly Taxol chemo to accumulate and you start to get more tired and feel more effects about at week 5, as you did. Don't be too hard on yourself. It's perfectly fine to watch lots of television, and if you like meaningless shows, go for it! Maybe walking everyday is too much right now, and though it is good for you, I was also told that if you hit the weekly "average" of time you should walk, it is fine to take a day or even a few off. A support group is a great idea.
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JenPem & ElaineThere --- A Port is supposed to be flushed every 4 weeks according to the manufacture. See this website. http://www.bardaccess.com/products/ports/powerport ... If yours is a different manufacturer, verify the directions on their website.
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Kattis, I joined a breast cancer support group. It helped me enormously as I also live alone and didn't have a husband. I ended up going about 2 years and really liked many in the group. I hope you find a group that you like. Please tell your onc about the tightness in your chest.
Good luck.
Liz
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Thank you again for your replies. It is so very helpful.
I have a port and they have flushed it out twice already before treatment to be able to get it going. Nothing major with that. So if you are keeping it but not using it makes sense that it needs to be flushed out regularly. The reason I have a port is that they did not managed to put a so called "pick line" in my arm due to small veins, a pick line needs to be flushed every week. I am happy with my port, it has a lot of advantages but hear it sometimes can get infected in rare cases so that is something to watch out for.
My nurse also said my shortness of breath is normal and might become worse as we go along. If I have shortness of breath while laying down and resting I should let them know asap. The mammogram and ultrasound today of my tumor shows no shrinkage but they will analyse it and let me know more in detail in a few days. I understand it might show up very late in treatment so patience, patience and taking an anxiety pill for a couple of days.
I have a friend suffering from lung cancer whom is so scared she refused treatment at first. I have managed to help her out of the fear and she is going to the doctors tomorrow. She lives in Las Vegas far from me. I am so happy I can support her and feel this is very awarding in the midst of all of this. Love is what it is all about.
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