TRIPLE POSITIVE GROUP
Comments
-
Rosee--not sure what regimen you're on, but my WBC stayed within the normal range throughout treatment. I increased my protein intake quite a bit and that definitely helped. I didn't get sick at all.
0 -
adult coloring books are wonderfull 🙂 it's sooo relaxing
Rosee it depends on your treatment. you will get checked for neutrophils and so they tell you, whether you are to be extra catefull. and if your count gets low, you may receive growth factors for boosting up the neutrophils, like filgrastim or Neulasta. I guess if you are not in direct contact with people, then you should be careful about washing your hands often and not touching your face (which we all do thousand times a day) - so like precautions during flu season. I bought sanitizing gel in a small travel flask and use it in town, after public transport etc. I was on dose dense AC (2-week cycle) and was getting filgrastim injections. my friend on 3 week AC didn't need them. We really are all different, so maybe just make simple precautions and wait for blood count.
0 -
adult coloring books are wonderfull 🙂 it's sooo relaxing
Coachvicky, great news, so happy for you! getting stronger and healthier!
Rosee it depends on your treatment. your blood will get checked and so they tell you. and if your count gets low, you may receive growth factors for boosting up the neutrophils, like filgrastim or Neulasta. I guess if you are not in direct contact with people, then you should be careful about washing your hands often and not touching your face (which we all do thousand times a day) - so like precautions during flu season. I bought sanitizing gel in a small travel flask and use it in town, after public transport etc. I was on dose dense AC (2-week cycle) and was getting filgrastim injections. my friend on 3 week AC didn't need them. We really are all different, so maybe just make simple precautions and wait for white blood cell count.
0 -
Coach Vicky: Sorry for the late reply... I have been using Biotene, and it definitely helps. So funny you say that, because my pubic hair was the first, and so far only, hair to go.. SCORE! LOL! Also, I really need to start heeding the advice about hydrating and walking. I managed one mini-walk since first infusion, and my water intake has been embarrasingly lacking.
I wanted to ask you all about the bloodwork. I go for infusion #2 on Friday, and nothing has been said about checking my blood counts. Do they usually check when you go for your infusion? Or an appointment in between infusions? I caught a nasty cold that my daughter brought home from school on Friday. She developed a fever over the weekend, but luckily I did not. Today I'm finally feeling a little better. My MO just told me to keep an eye on my temperature, and that I would be fine as long as it didn't go up.
0 -
My blood was checked right before every infusion to make sure I was good to go. I know some women have to go the day before treatment for bloodwork. If they haven’t mentioned a separate appointment my guess is they’ll check it before your infusion.
0 -
ingerp, thank you!
0 -
jbluesky - for my TCH infusions I had weekly CBC done, so, two between infusions and one done same day as infusion to determine that all could proceed. My oncologist routinely does a lot of blood work - even now and I am years out from treatment - so not all follow the same protocol.
0 -
Rosee - I worked through treatment and was also worried about catching infections from people. My WBC always tested normal (in fact they were higher than they have ever tested before while I was on chemo, I guess the neulasta worked), but they were only tested every 3 weeks, right before my infusions. According to the neulasta website, your WBC is lowest from days 6 though 8. I tried to avoid sick people those days, but the only time I wore a mask was on a red-eye flight from Phoenix to Ohio that I took on day 8 of my cycle, on the advice of my cancer center.
j_bluesky - I got bloodwork in the morning, the onc nurse looked over my labs and ordered my chemo and premeds from the pharmacy, and then I went to my infusion. If your center has a lab on site they will probably do bloodwork the day of your infusion.
I met with the radiation oncologist today. She did not do a great job of selling radiation. She said it gave up to a 50-70% improvement in loco-regional recurrence but only a 10% improvement in overall survival. She also mentioned a 3-5% chance of developing a secondary cancer. She could not tell me why a 50-70% improvement in loco-regional recurrence only resulted in a 10% improvement in overall survival. And when I mentioned that a 5% chance of developing another cancer seemed high when there's only a 10% improvement in survival, she tried to brush that off as happening mostly to smokers, or due to old therapies. It seemed like I caught her off guard by asking questions about benefit vs risks but I don't know why. Do people generally only worry about the risk:benefit with chemo and hormonals and not radiation? So now I'm doing my own research on radiation and what I've got so far is that my risk of lymphadema would rise from about 10% to about 25% based on this calculator that is based on a study done in Brazil (and I have no idea how reliable medical science coming out of Brazil is). I'm finding lots of data on locoregional recurrence, but nothing on metastatic or distant recurrence which is what I really care about. And I'm also not finding a whole lot of research on the benefit for women who had residual disease after neoadjuvant chemotherapy.
0 -
ingerp - thank you. that is good to know. I will be doing taxol weekly for 12 weeks with herceptin every 3 weeks. There is hope.
0 -
hapa--the number I've kept in my head is from the first time I had rads--that it would cut my probability of recurrence in half. That's all I needed to hear to jump on board and not look back. With now three breast events under my belt (I had ALH 10 years ago), I kinda like the idea of zapping the shit out of my hooter. I really feel like if something else pops up in future I'm gonna chop them both off and that idea really bums me out, so I really really want this to be the end of it.
0 -
General reply to all:
I had blood work every time before chemo infusion along with vitals. My dosage was different dependent of blood levels, weight, blood pressure ... .
Don't worry about a mask if your levels are check and you get a shot for you white counts.
I think my first Oncologist started me on Arimidex when I was in chemo because of my high % numbers with estrogen and progesterone. He said to me that he over dose and hit me with all he had available. My cancers (more than one and in both breasts) finally showed up on MRI except for a lesion in the left breast.
I have tolerated Arimidex well. It takes PT and exercise. I will do anything so that my husband never goes thru this with me again.
If I failed to answer a question, ask again.
Vicky
0 -
hey coach Vicky thanks for sharing. I am surprise you were placed on hormone pills right during chemo. What was the percentage of ER and PR? Mine was 90 and 40% respectively and I finished chemo in mid February. Finished rad early June but only started letrozole in August as we had a hard time getting me into menopause even after the first lupron shot in May. Secondly, we seem to be the only ones who didn’t take perjeta with herceptin. My herceptin has been put on hold for now since August (had the 5th in July) due to heart function issues but I intend asking my MO about perjeta when I see him in 2 weeks. By the way, I had neoadjuvant chemo and the HER2 didn’t show up in my tests until after surgery and that was why I started herceptin in May. Almost 3 months after I ended AC protocol
0 -
Hi Rosee!
My Dr told me to watch days 5-8 after chemo. Those are the days your wbc can get low. I didn’t eat anything raw those days and peeled all fruit if I had any.
Good luck! You got this.
0 -
Just had meeting with my MO. She consulted my case with no. 1 cancer center in our country (I would go there for 2nd opinion, but didn't have to) and they recommended to add Perjeta. We'll se how that goes with insurance
0 -
Princess
My numbers were 90 and higher.
Sometimes I think my MO started me early to make sure taht I lasted the 5 years, LOL.
Vicky
0 -
I notice that a lot of you have had AC before TH or TCH. My MO didn't mention anything about AC. I did my first treatment yesterday of Taxol and Herceptin. So far so good, no headaches or anything yesterday. Didn't sleep well last night but that could have been the steroids. I feel pretty good so far today but am anxious about the following days. Thank you all for your words of encouragement and answers to everything. This really is a great group.
0 -
Many of us with early stage, node-negative, small tumors are doing only Taxol and Herceptin. I knew that's what my MO would recommend before I met her.
1 -
Rosee, the reason might be that your tumor is small and your nodes clear? (you don't have your dx in your signature, so I'm only guessing) My MO suggested AC chemo because my tumor was over 2cm and 1 node was involved and the tumor was fast growing.
0 -
Rosee - the more scientists learn about cancer, the more the treatments can be standardized and yet be personalized. Stage, size, hormone/HER2 status all help determine the chemo you get and the order you get things. Try to make your profile public and look at others profile. Go to "my profile" and fill it out. After each question, you need to make the information public. Being HER2+, we have a longer journey than some but actually a more hopeful one. Stay close.
0 -
thank you Taco1946. I did change my settings.
0 -
Hi everyone, this is my first post here and this seems like an appropriate place to make it
I am 38 years old and was dx in June with “triple positive" bc. I have two rounds of chemo to go out of six, and I am very anxious to get these last two over with. I am on Carboplatin, Taxotere, Herceptin and Perjeta. I am now looking ahead to surgical options for November surgery, and stressing over the differing opinions of my onc vs gyn on oophorectomy.
Anyway, I'm glad to have finally joined since all of my google questions always led me to this site anyway. :
0 -
Hello ComeOn,
I am 37 and was diagnosed in July with triple positive. I'm on the same chemo as you as well, just had round 2 out of 6. I don't know how I'm going to make it through 4 more at this point. As of today, I have blood in my urine and tingling in fingers and feet. Extremely fatigued and nauseous. At least you are almost done with this part! I'm not sure just yet what my surgical options will be.
0 -
blue sky, you CAN DO IT!! Round three was my very low point.. I thought I would be pumped to be halfway through but instead I felt defeated. That's not to discourage you, but to let you know you're normal! Round four I got back on my feet, and round five has come around SO quickly.
My biggest complaints are fingernail pain and taste distortion/loss. Oh God, they're miserable! 😩 My tastebuds usually straighten out the last week before my next infusion, thankfully.
0 -
CoachVicky oh yea! 5 years is a really long time. I am only on my second month and it feels like forever already. LOL
Princess
0 -
ComeOn and JBlueSky - - girls, we are the same age... but I see you have different chemo. I just wanted to ask, whether you already know about your anti-hormone therapy? I'm already on ovarian suppression, and am wondering what the next step will be in this department... probably after chemo. I am starting THP tommorrow....
There is also a group of "ladies in their 30s" where you could join, if you like
0 -
Hi Jaboo I clocked 39 in August. Was dxed last September just a month after my 38th birthday. I was premenopausal when I was diagnosed obviously but I was given Lupron (first shot in May) to suppress my ovaries before starting femara last month. Hope that gives you the answer you seek
0 -
Hi jbluesky I am 39 now. Was dxed last September at 38 so I think I can relate to how you are feeling. The blood in your urine might be spotting as you are premenopausal. I remember seeing that once when I started chemo. As a matter of fact, I had a period after my first chemo and periods came back in full swing 3 months post chemo. So watch it and see if it will continue and don’t panic. It is noteworthy to inform you that a lot of strange things will occur in this journey but that doesn’t mean it is a bad sign. I personally went through AC With little to no issues at all apart from hair loss and joint pain ofcourse then I had severe itching with taxol which didn’t get better with Benadry and the likes so I took only 2 and half instead of 4. Now, my herceptin has been put on hold after 5 sessions as it has affected my heart function (having another echo exam next Wednesday to know the way forward) so you see everybody responds differently. My medical team is surprised that I am reacting this way to herceptin. They thought it would have been easier on me as the kick ass chemo was literally a breeze for me.
For the nausea, am sure your MO can give you something to ease the discomfort.
Wishing all newly diagnosed best of luck as we all journey through this very difficult time.
Princess
0 -
PrincessMeg, thank you for your info. I'm just trying to see what may come next. I am getting the suppression shots from the beginning of chemo, so I think the pills will be added after chemo... I'm sorry you have such issues with Herceptin and had them also with Taxol! hopefully you will be able to resume H soon. (hugs)
0 -
Hi All. I’ll never catch up here so I will just jump in to the discussion. For everyone in the midst of chemo, the nausea is sometimes acid reflux. Check with your MO. Rather than take anti-nausea med to fight the nausea, I took a proton pump inhibitor. And if you have not heard this before, drink water and walk. Both help immensely. Post often and complain as often as needed. It’s a bit daunting being faced with so many pills and remedies. Keep a journal so that your appointments with your oncologist are helpful. Even a minor symptom can be troublesome. Many can be alleviated. Hang in there. It does get better. All the best.
0 -
In reading up the page, I see that some are on hormone meds during chemo. This is not the case with me, and both my ER and PR are at 90%! Like I said, I'm super anxious over surgery for that part of the issue.. I'm a runner and it makes me so nervous what early menopause might do to my activity/energy levels as well as speeds. And of course, other things like bone health etc. I wasn't running any world class times but I had numbers I was proud of. I'm hoping that reading around here will help ease my mind. 😞
0
