TRIPLE POSITIVE GROUP
Comments
-
Kate I am doing only taxol and herceptin. I have been able to work 4 days a week. I switched to a "summer hours" schedule and work 9 hours Mon through Thurs and then take 4 hours of intermittent fmla leave on Fridays (first 32 hours of that are sick time and then it will be vacation time). I have a very small tumor as well as a single focus of microinvasion in my dcis. All high grade with comedonecrosis. Due to my high Her2 score (FISH 4.8) ,based on recent research with Dana Farber, and being only 40 with two small kids I went with chemo.
I have found it easy to work. Day 3 (Mon) is my roughest day. My worst symptoms are really GI related..heartburn and diarrhea which for me sometimes cause nausea. My hair is thinning significantly but so far I have been able to just pull it back in a ponytail and go out.
Please talk to your doc if you would still lime to have children. Taxol puts you into chemo pause and damages your follicles. You can harvest before starting chemo and still have lots of options for babies in the future.
0 -
KateB, welcome. Sorry you too have joined the club. These incredible women will help guide you for sure. Please let us know how you are doing.
0 -
Hello all!
I tried to take a break for a bit but I can't stay away. Makes me feel disconnected! In the last month, I have been working with my nieces and daughter to plan a multi event shower for my son and his fiancé. Hers was Tickled Pink for. The theme with gold sparkly and pink. While that was going on , the guys had a Lucky in Love casino party at our house with a craps table and dealer, and then an I Do! BBQ family party . It was crazy amount of work thanks to all all the fun ideas on pinterest but so fun.
I've had some pain on my lower left side that wouldn't go away. Was going for the two week rule but caved at one. Doc thought it might be related to mild diverticulitis but ordered a ct scan. Did a lung xray and found a spot. PANIC !!! They think it may be related to a spot that was onn an X-ray any in 2008 so I'm getting copies for comparison. Heres hoping its the same thing! I haven't caught ups on all the past pages but, hoping everyone is doing well.
0 -
fluff - so beautiful!!! Hoping your spot is a nothing - DH just went through this - turned out to be diverticulosis and doc told him to eliminate the flax he was using in smoothies and limit nuts - pain went away. His abdominal CT inadvertently showed the bottom of his lungs in the CT field and there were numerous nodules in both lungs - eeek! Pulmonologist said watch and wait but he felt it was nothing. Scary though!
0 -
Fluffqueen Lovely photo. Here's my story. I was scanned before treatment. They found 3-4 suspicious. spots in my liver. Scanned after chemo then 2 more times in a total of 2 years. One went away and the others were unchanged. They assumed they were cysts. Home you have the same results. cysts come and go.
0 -
Thanks to all for the warm welcome and great information. My research brain has kicked into overdrive (and I have access to a university library and its vast databases, yay!); yesterday I spent some time reading about multifocal breast cancer, which is what I have. It looks like I'll likely be offered two different courses of chemo: AC-TH, or TCH. Given the cardiotoxicity associated with AC-TH and the relatively low (statistically speaking) chance of reoccurrence either way, I'll likely opt for TCH if it's offered. We'll see what the two oncologists say.
I did some research on the docs, too; one of these women has published pretty extensively on aggressive BC (which I have) AND on quality of life during treatment. The other is rated really highly for bedside manner. I'm thinking I'm going with researcher over nurturer, but we'll see. I'll keep you posted.
Out of curiosity, because everything I've read says something different: what kinds of pre-chemo tests should I expect? Given that my nodes were negative (thank everything holy for a small bit of good news in all of this), should I ask for a bone scan or a baseline brain MRI, or can we assume that there are no mets?
I'm not happy about my DX or the fact that this has happened to any one of us, but it appears that I've found my people. Thanks again, ladies.
0 -
Kate, you can also ask about adding Perjeta. Its typically being recommended for neo-adjunctive (before surgery) chemo, but some are getting their insurance to approve it adjunctively, too.
I did chemo in 2014. My MO was disappointed that I had already had surgery because he would have liked to have added Perjeta. It was very new at the time, so I said while I understood I could ask my insurance company to approve it anyway, I didn't want to. But following the TCPH thread over the last year, I see lots of good results, so it may be worth looking into.
I didn't have any additional scans to look for mets. I had a dexascan weeks before my cancer dx to check my bone density. I think my MO would have ordered this scan prior to my starting AI's to get a baseline, but I already had that. He said he'll order another in two years.
Good luck.
0 -
kateb,
If you end up doing AC, you'll get a heart scan. Your MO may or may not recommend the insertion of a port. (My MO wouldn't do AC without a port.) Otherwise, it's up to your MO as to what scans you get.
I was diagnosed with locally advanced cancer (stage IIIA). So, before chemo, I got an MRI and PET scan, and after chemo, I got an MRI and PET scan. But, I was doing neoadjuvant chemo (chemo before surgery), so the point of my scans was to discover whether or not my cancer shrunk enough during chemo to allow me to have a lumpectomy instead of a mastectomy.
Some MOs are big on scans. I call my MO Dr. Scan because she orders them all the time (I'll be getting a PET scan in August).
0 -
Hi Kate,
I got the best of both with my MO-research and good with patients. We talked research and traded articles often.
Three years ago just about now I had MRIs of my breasts, bone scan, PET scan, brain MRI, punch biopsies, MUGA, heart ECHO. Not everyone does PET scans and brain MRIs @ the beginning but I had really crappy aggressive cancer with a mega mass that just kept growing. And symptomatic. I felt like a pin cushion and was certain I was glowing in the dark. I did a whirlwind of tests in 4 days and then headed for port placement to start toxic waste infusions (AKA chemo).
Ask for what you want. When tests come back negative make a check-mark and move to the next step. Dig deep for a sense of humor. Really. It helps. I told the breast MRI group--after my 3rd go-I felt like a porn star dangling my breast (breasts at first) in the holes while they almost were on the floor adjusting me. And told the radiation tech-after about 20 days of him telling me to strip to the waist, put on a gown, and meet him in the back: that it would be nice if just once he had flowers and a really nice old bottle of single malt scotch. After his double-take he laughed.
We will laugh and cry with you. Any time. Day or night. Really.
s
0 -
Fluff-I LOVE the picture. And the description of the parties.
0 -
I agree with Susan, sense of humor, even if warped helps. It feels so good to smile and laugh.
Last week walking into treatment room I said "I'm going to the electric chair, I like them better" The nurses got a kick out of that, probably more so because I didn't realize what I had said until I sat down. I am still blonde even with no hair.
0 -
rosesrx I used to call the treatment room the crackhouse!
0 -
I referred to it as the lethal injection room, but my MO calls it the filling station, but you have to be old enough to appreciate the reference. My infusion room did a lot of non-chemo stuff because of the hematology practice, so there were people getting iron and some other concoctions - lots of people connected to "gas" pumps.
0 -
ladies, I am new to this group. I am stage 1, node negative, 1cm, triple positive, and will start 6 cycle of Taxotere Carboplatin, Herceptin every 21 days.
I wonder if there is data showing recurrence and survival rate for our group?
I've read hundreds of threads from another group, some has recurrence within 1 to 3 years. I am nervous about the future. Any information would be appreciated.
0 -
Alice12 I was stage IIB. Really big tumor. Diagnosed exactly 5 years ago last Monday. I am still NED (no evidence of disease). The first 2 years are when most recurrences occur. That doesn't mean you will. I would also ask about Perjeta (for HER2+). This was recently approved for early stage to get before surgery.
Finally your oncologist should be able to give you statistics based on your medical history, age etc. with and without treatment. I know for me with treatment I had a 84% chance of remaining NED the first 10 years. (Note they didn't even consider Herecptin in that number because it hadn't been around for early stage 10 years at that time so my odds are probably even better).
HER2+ used to be one of the worst diagnosis. Now triple positive prognosis is one of the best.
0 -
lago: thank you for your encouraging information. I read so much from googles, i think I got information overload. some articles said survival rate is lower for triple positive, compared to other type, and some said triple negative is worse. Being informed that you have cancer is life changing experience. I am nervous and scared about the future, especially about the recurrence.
0 -
Alice12--I completely understand. Stay away from Dr. Google. He's often wrong and sometimes guilty of malpractice. I've been doing a lot of reading about this kind of cancer, and I have to say . . . the prognosis is good. You're stage 1 and node negative. Those are both really good things that bump your likelihood of DFS (disease-free survival) up waaaaaay high.
Here's something, and forgive me, because I really do understand your worry: every day, we have something to think about. Worrying about the future--even as hard as it can be to STOP worrying about the future and stay in the present--doesn't change what the future holds, but it can make the present unbearable. Take care of yourself, in the moment, whether that means taking a walk, having a hot bath, calling a friend, or posting on here. I just got some adult coloring books that are a lot of fun--you might check them out. And don't forget to breathe!
I agree with everyone who has mentioned sense of humor. Fortunately, I have a very dark, very dry sense of humor, and keep finding things to laugh about. Add to that a strong sense of irony, and I think this could be one of my more entertaining years.
I also really appreciate the stats. I'm meeting with one oncologist on Friday and another next Wednesday; I'm thinking of this as a collaboration--2+ brains are always better than one. And, as of right now, mine is working pretty well. My big questions are about my hormone receptor status and how that'll work (both ER and PR were 80% on biopsy), whether I'll need Tamoxifen and/or ovarian ablation, etc. I welcome any and all info.
Thanks again, ladies!
--kate
0 -
kate: thanks for the tips. I have been good in handling this cancer up until today, when all of the sudden I felt down. thanks to reading too much info from Dr. Google.
lago: I did not get perjeta since I already had my mastectomy last month and will start Taxotere Carboplatin herceptin next thursday. My oncologist did not even mention about perjeta before the surgery. I wonder why.
Thank you ladies.
0 -
Alice - I am betting that your on oncologist did not mention neoadjuvent Perjeta because it is currently only FDA approved for rumors 2cm or larger, or node positive
0 -
KateB79 The statistics you read online include all in that category:
So say you look at the prognosis for stage I node negative. That includes everyone who did all treatment, some of the treatment or no treatment at all. There are other factors that are specific to you too that needs to be considered. You need to ask your oncologist your numbers.
0 -
I just got back final pathology report today. Had lumpectomy last Tuesday. I am cancer free no lump node involvment. I am ER Poitier
my surgeon said maybe chemo??? I have appointment with oncologist next Tuesday hope I can. Last that long
0 -
How big is your tumor? Most HER2+ cancers get chemo and herceptin unless it is very very small.
0 -
SpecialK - I find this interesting, because I seem to be an exception. I had adjuvant chemotherapy - my lumpectomy was 12/15/14, followed by 6 rounds of TCHP even though my tumor was 1.5 cm and I was node negative. I didn't realize at the time that my oncologist suggested this chemo regimen that the P was fairly new.
Is it possible that he chose this route because of my age? (I'm only 27) I know that we're being pretty aggressive in my treatment for this very reason.
The variations in our treatment from person to person, and doctor to doctor, fascinate me, even though we may have similar diagnoses.
0 -
Kate, I interviewed three oncologists. Two had the same treatment regimen, so I went with the one who was closest to my home. Turned out to be the exact fit. Very caring, but very smart and didn't always work inside the box. Indian guy who was a yoga master. He taught classes to his patients twice a week, and they were small classes, so it was like having 3 appts to talk with him every week. Kept me sane. My PS next door was a dry sense of humor like mine, so I had a great blend . My ONC passed away last summer in a freak medical thing, so I had to start over and find someone who I felt would still care and be proactive even though I really had nothing to treat at the time. He's a great guy but not the same.
Ran all over today getting my old lung X-rays all the way back to 2008 when they first saw something. The pulmonologist is going to compare them and then decide if it is something he needs to see me for.
Totally agree on the sense of humor. When I ended up with pseudomona infection and was going in to surgery, I took in a box of Clorox wipes to the surgery room. Whipped them out and said everything needed to be wiped down, hands rehashed, and if anyone wasn't feeling well to get out. Cracked them up. My PS came out and told my husband that he left a wipe in my foob for added protection
0 -
wpmoon I'm sure your age is a big part of the equation.
0 -
wpmoon - I agree with lago that your young age has to be a factor, but you are not the only one I have seen receiving Perjeta adjuvently. Some oncs have been able to get insurance to pay for it adjuvently - not sure if they have to do a peer to peer to convince the company that this is necessary, but I am glad you are getting it! Perjeta was approved in the fall of 2013, so there are a number of us who still post on this thread who were not able to take advantage of Perjeta due to the timing of our diagnosis. There are also variations among the choice of chemo regimen, type of surgery, and recommendation for rads (for those who has MX or BMX, automatic for lumpectomy), it is interesting! Area of the country, training and philosophy of the doc, size and orientation of the practice, individual characteristics of the patient and their preferences, etc., can all combine to contribute to the differences in choices.
0 -
Have anyone used L-glutamine during chemo? If yes, May I know the dosage that you take? I read it from another group posting, they said it helped with neuropathy.
Thank you
0 -
alice - I used it, along with Vitamin B-6. I took 30g of powdered L-Glutamine daily, in three 10g doses. I dissolved the powder, which is pretty tasteless, in a cold non-acidic drink, like apple juice. Don't mix it with orange juice or hot drinks - it will denature it and it won't be effective. Don't mix it with soft food, it will taste chalky. I also took a 100mg capsule of B6 daily.
0 -
special K: does L glutamine help with neuropathy? How many days after 1st chemo does the neuropathy start and how long it will typically last?
Thank you
0 -
alice - there is no real way to quantify whether it helps. I had tingling in hands, feet and mouth right after each of the first three infusions, but had resolution prior to the next infusion. After the midpoint the tingling and numbness stayed. It took about 3-4 months for it to go away once chemo was done. Would this have been worse if I had not taken the L-Glutamine? No way to know. Each person reacts differently - some get neuropathy right away, for some it goes away, others it doesn't, some never get it. There is no way to predict who will have neuropathy or how severe it will be, so I decided to try the L-Glutamine rather than do nothing.
0
