TRIPLE POSITIVE GROUP
Comments
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Hi ladies. Does anyone know why some of us are receiving weekly taxol and some get 21 day cycles of taxotere? I have 21 day cycles of TCHP. This regimen was suggested by my surgeon and MO, so after 2 agreeing opinions I didn't ask many questions (at least about drug choices). I understand different drugs are suggested based on pre- or post-menopausal and that some can only get perjecta if it's given before surgery. Just curious in the difference.
Robin 1234, I too hated taking any meds and haven't had any except vitamins and supplements in years. So when I was given a list of Otc things to purchase to off set some possible side effects and then saw the list of pre-meds they give you just to get through the chemo infusions, and the prescriptions for steroids and anti-nausea meds, I was a wreck. But, I had to let it go and decide to follow all their guidance. We are in a huge battle that must be won, but I look forward to the day when my medicine cabinet is empty again! Wishing you the very best!
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kmjb - Taxotere is a stonger med than Taxol, has more potency, and would be too toxic given weekly, while Taxol given every three weeks would not be strong enough. I am not sure whether being pre or post menopausal is a factor, as Taxol used as a single agent is prescribed generally for smaller tumors - 1cm or less, or when combined in a regimen with an anthracycline drug like Adriamycin. Combining Taxotere and Adriamycin in the same regimen is pretty brutal, and it is used together pretty rarely (TAC). Some oncologists prescribe Taxotere because they want to avoid using Adriamycin and Herceptin due to the cardiotoxicity, even when not given concurrently. Taxotere is more commonly used with a tumor usually larger than 1cm. Pejeta is currently FDA approved for neoadjuvent administration only, some oncologists have been successful in giving Perjeta after surgery, but this is considered an off-label use for early stage patients right now.
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Kmjb,
It depends on stage and oncologist preference. My tumor was big (5 cm+), so I did four doses of Adriamycin + Cytoxan, then 12 Taxols (with some Herceptin and Perjeta thrown in there). If my tumor were much smaller (say less than 1 cm) and I had no nodal involvement, I might have been able to get away with just the Taxols. (Taxol is supposed to be the gentler cousin of Taxotere.)
I could have done TCHP, but, in her experience, more of my MO's patients tolerate AC + T than TCHP. A good number of her patients have tried to quit half-way through TCHP due to gastrointestinal issues. It should also be noted that MO's patient population appears to be older and quite fragile. (I swear, I'm always the youngest person in the infusion room, even now when I get my Zoladex, and I'm in my late 40s.) So, I went with MO's recommendation.
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Special K and Elaine, thanks for the info!
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Robin1234,
Here is my treatment and experience:
I did Taxotere, Carboplatin, and Herceptin every 3 weeks August - December. Now, I am on Herceptin every 3 Weeks thru 14 August.
My husband used gel caps on me and saved my hair.
I took every pre med, after med, whatever my Oncologist recommended to help me.
I worked to walk for at least 2 miles 6 days a week. I think that did more to get the chemo thru my body than anything. Even on those days when I would be tired, I still get on the treadmill walk for 20 minutes.
Finally, I made up my mind that chemo would not beat me and I would win this battle. I have several sayings that I would read and reread to keep me positive. I also journaled and blogged. This help me deal with my feelings and see my progress.
Most of my SEs have been from Herceptin but they are not that bad. I have a constant running nose and swelling in my hands and feet. So, I take a diuretic and potassium when ithe swelling gets bad. The best news is that my Roseaca has cleared up! My Dermatologist thinks that the Herceptin killed the facial mite that causes the inflamationfrom Roseaca.
You can do this! Best wishes.
Coach Vicky
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Glad to hear you're doing so well, Coach Vicky! I worked during chemo, but I can't say that I walked two miles a day.
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I am so impressed that you managed to work during chemo. Also impressed about your walking and exercising. I am a bit behind in all that just trying to hold things together here for now. Waiting for results for scans and trying to get organised with paperwork etc.
I started Femara during my radiation and I think my body is starting to feel the effects of the medication in form of slight headaches and body aches and suffering from "chemo brain" or just regular stress and worry about it all.
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Thank you so much Ladies for your help. I wish all you the best and God bless you all.
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ladies do you know if Taxol is also better as far as reflux is concerned? i have bad reflux with TCHP.did 2 cylces of TCHP already.second was bad with reflux issues that i had to be admitted to the hospital.
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Elaine There and Kattis894
I was just so scared something would happen to my heart with Herceptin that I walk. Frankly, I hate exercising.
My Plastic Surgeon wants me to work on my upper body strength. He asked if I had a trainer. When I finally finished laughing, I shared a that I had an exercise room filled with nice, slightly used equipment.
My next MUGA is Monday. Praying for a great number.
Coach Vicky
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Kae,
Taxol is "supposed" to be gentler than Taxotere. It gave me mild diarrhea and fatigue, but that was about it. However, Taxol can contribute to neuropathy, or the loss of feeling in your extremities (fingers and hands, toes and feet) that can be irreversible. I had mild neuropathy in my fingertips, and still struggle a bit to open those plastic bags at the grocery store to store produce and meat. (I sometimes ask the store employees for help with those bags!) Some women use ice during infusion to avoid neuropathy. Otherwise, I found Taxol/Herceptin/Perjeta to be kinder than Adriamycin and Cytoxan.
Hope you feel better, Kae! That must have been some awful reflux to send you to the hospital. ((Hugs))
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yes, i have delayed gastric emptying too Elaine. my Mo thinks 4 cyles will do me PCR since we cannot palpate it anymore as it was close to skin. doing everything to atleast get 4 rounds if reflux is bad plus the delayed gastric emptying...thanks.hopefully reflux will clear up.
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Elaine Therese,
I am noticing you are taking different hormons than me and it makes me curious to why. We seem to have about the same size tumor to start with. I getting treated in Sweden so protocols might be different. Instead of AC I received FEC for example. Do not know the difference but mine contained 3 different chemo medications that made me loose my hair in 10 days after the first infusion...I am suppose to be on letrozole (same as Femara) for 10 years and getting Zoledronic Acid for my bones every 6 months for 3 years, as well as pills for calcium and Vitamin D.
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Kattis,
We are both on AIs, which are intended for post-menopausal women. Aromasin and Femara work in similar ways, but their formulas are different. Because I am pre-menopausal, I also receive monthly Zoladex shots which shut down my ovaries. My doctor chose Aromasin because the SOFT study (which shows that AIs can be more effective than Tamoxifen for pre-menopausal women) also used Aromasin. She figured that the insurance company would be more likely to approve of Aromasin for me if we followed the SOFT study protocol.
As far as chemo goes, I'd think that our doctors may have prescribed different regimens because they operate in different medical universes. In the United States, medical oncologists follow the national standards devised here. For HER2+ cancer, patients usually get either Adriamycin + Cytoxan then 12 Taxols (with Herceptin and Perjeta if tumor is over 2 cm) OR Taxotere + Carboplatin + Herceptin + Perjeta (if tumor is over 2 cm). Your doctors may be following Swedish protocols, which have been developed in that medical community.
Hope this helps!
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I'm bearing down on my two year cancerversary. MO next week, and mammogram two weeks later. Feeling the anxiety start to creep in. Sigh...I'm sure I'm fine, so why do I get so worked up?
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tresjoli2,
Praying for good results!
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Tresjoli,
Time to dip into the Ativan or Xanax! Seriously, I just had a mammogram, and I always feel different from most of the clientele in the waiting room. They have a special post-scan room for those of us BC veterans. Our scans get looked at by the radiologist immediately. If there's a problem, we get ultrasounds immediately. Everyone else just goes from scan to dressing room.
OY. Hope your appointments go well!
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It is interesting to compare the different approaches. Yes, they are following the standard national treatment plan here. I am not pre-menopausal and not receiving the Zoladex shots but infusions of Zoledronic Acid every 6 months, planned for 3 years to protect bones together with Femara.
Everyone is truly getting individual treatment plans within the country as well it seems, and in my mind it just means there is a lot they can try if something is not working so for me it means good news that there are so many different options in treatment.
Tresjoli keeping my fingers and toes crossed it will all go well for you!
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Tresjloi2- congrats on the 2 year milestone, praying for good results!
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is chemo side effects cumulative? is does it vary from cycle to cyle? i know every individual is different but cycle 2 was way worse for me than cylce 1 landing me in the hospital.. if its effects are cumulative then i cant imagine cycle 3. thanks!
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kae - some side effects are cumulative, mostly fatigue and worsening of blood counts. Other side effects are better mitigated with each round of chemo due to experience - knowing what to expect and how to behave accordingly. For some, new side effects will crop up, while others will discontinue. It is not necessarily that the same things you are experiencing with each round get worse, just that you know you will have them. If your side effects are cumulative, and worsening, your oncologist can also reduce your doses - this is very common.
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thanks SpecialK.will add that to my questions when i see her in 2 days
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kaemd99 - so sorry your last treatment is beating you down. I sent a reply to your message. I am praying your side effects get less intense and you're feeling better soon. Take care
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Tresjoli2, in my view, it would not be normal to not get worked up. Makes complete sense to me. Mammogram = bete noire! In a few days, you'll post a glowing report and breathe a deep sigh of relief. That's my wish for you
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Ok little late on response here !! Sorry been gone for a while. I just had to write in on the period issue I have not had a period since my first chemo back in Jan 2012 At the time of first chemo I was almost 44 years old Nothing not even light , Then Bam !!! 5 years later yes I said 5 years later at 49 years old, I just had bleeding from HELL !!! So much so I had to use 2 pads at once and it was still making me go through my pants I bleed for 5 Days like this !! SORRY to much info I know !! I am not on tamox or anything else. I quit tamox after taking it for 2 1/2 years. out of the 5 years. SO I know omg I freaked out and right away I go in to my Obgyn he does all kinds of test in office like right away and the next day gave me 2 different ultra sounds, belly then vaginal. 2 times of blood work then a D&C At the hospital days later.. Get this all this and they can't find anything wrong !!! great news
BUT he said it's real rare to just out of the blue to have a period after 5 years !! Even blood work showed Post menopausal So he is just as stumped. I told him I guess I will think that my body wanted to say No your not done and gave me one more before the good bye. Who knows But it sure was pretty scary . 0 -
I had my 7th treatment yesterday of Taxol and 3rd with Herceptin and Prejeta. This morning I am so shaky. Of course I always am the next morning.
My MO meet with me yesterday before chemo and she did a physical. She does not think the lump is getting smaller. So she ushered me to the ultrasound room. Nope it measures the same size as it was before I started. On the good side it is not getting bigger.
She told me that my side effects would get worse in the next couple weeks. Why? I guess I was a little upset after the ultrasound to ask that. So I ask here first. Why will they get worse? Is it the more treatments you have they cumulatively build up?
Hoping I keep feeling good.
Sending positive vibes to everyone else who has treatment today or yesterday
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I am confused about this newer categorizing of breast cancer. From Mayo-
"Doctors are increasingly using genetic information about breast cancer cells to categorize breast cancers. These groups help guide decisions about which treatments are best. Breast cancer groups include:
Group 1 (luminal A). This group includes tumors that are ER positive and PR positive, but negative for HER2. Luminal A breast cancers are likely to benefit from hormone therapy and may also benefit from chemotherapy.
Group 2 (luminal
. This type includes tumors that are ER positive, PR negative and HER2 positive. Luminal B breast cancers are likely to benefit from chemotherapy and may benefit from hormone therapy and treatment targeted to HER2.Group 3 (HER2 positive). This type includes tumors that are ER negative and PR negative, but HER2 positive. HER2 breast cancers are likely to benefit from chemotherapy and treatment targeted to HER2.
Group 4 (basal-like). This type, which is also called triple-negative breast cancer, includes tumors that are ER negative, PR negative and HER2 negative. Basal-like breast cancers are likely to benefit from chemotherapy."
I AM TRIPLE POSITIVE, ER 98.80%, ER 77.77% HER2+++, plus Ki-67 15%
So I don't fall in any of these 4 luminal subcategories. Is there a mix category?
BTW my stats above are AFTER my first round with BC in 2007, re diagnosed this year. So 2007 bilateral mastectomy and hyster/ oopher and still thus crazy high grade HER2+ and high % for both ER/PR EVEN WITH NO OVARIES FOR OVER 9 years! Adrenal glands production will be turned off soon on one of the AI's for post menopausal not sure which one yet!
I would like to ask this group which seems to have the least side effects?
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dani - these are the molecular subtypes of breast cancer, but the descriptions you included are less than fully expanded. Here is a better listing from this site, which indicates that someone who is triple positive would be Luminal B. If you measure at a treatable level of Her2, generally your Ki% is also high, as is your grade. It is a pretty reliable and common marker of the aggressiveness of Her2+ breast cancer. Also, your ER% percentage has no connection to your hormonal levels, but is measuring the number of receptors on the breast cancer cells. It is a measure of how available those cells are to any amount of estrogen your body may produce. I also had a 96% ER+ BC nine years after a complete hyst/ooph. As far as the AI with the least side effects, that can be tied to which works for you as an individual - I don't think there is much consensus on that, but finding the manufacturer with the least fillers and additives seems to be helpful. My MO feels that Femara (or generic letrozole) has a slight performance edge, and I take the Roxane generic brand, which is pretty clean. I have taken a variety of different brands and that is the one I have been able to stay on the longest (I have also taken Mylan, and Teva brands, and the Accord brand of Arimidex over the six years I have taken anti-hormonals) and I am still on it now.
There are five main intrinsic or molecular subtypes of breast cancer that are based on the genes a cancer expresses:
- Luminal A breast cancer is hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), HER2 negative, and has low levels of the protein Ki-67, which helps control how fast cancer cells grow. Luminal A cancers are low-grade, tend to grow slowly and have the best prognosis.
- Luminal B breast cancer is hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), and either HER2 positive or HER2 negative with high levels of Ki-67. Luminal B cancers generally grow slightly faster than luminal A cancers and their prognosis is slightly worse.
- Triple-negative/basal-like breast cancer is hormone-receptor negative (estrogen-receptor and progesterone-receptor negative) and HER2 negative. This type of cancer is more common in women with BRCA1 gene mutations. Researchers aren't sure why, but this type of cancer also is more common among younger and African-American women.
- HER2-enriched breast cancer is hormone-receptor negative (estrogen-receptor and progesterone-receptor negative) and HER2 positive. HER2-enriched cancers tend to grow faster than luminal cancers and can have a worse prognosis, but they are often successfully treated with targeted therapies aimed at the HER2 protein, such as Herceptin (chemical name: trastuzumab), Perjeta (chemical name: pertuzumab), Tykerb (chemical name: lapatinib), and Kadcyla (chemical name: T-DM1 or ado-trastuzumab emtansine).
- Normal-like breast cancer is similar to luminal A disease: hormone-receptor positive (estrogen-receptor and/or progesterone-receptor positive), HER2 negative, and has low levels of the protein Ki-67, which helps control how fast cancer cells grow. Still, while normal-like breast cancer has a good prognosis, its prognosis is slightly worse than luminal A cancer's prognosis.
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SpecialK
What does slightly worse mean in the Luminal B description?
Coach Vicky
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coachvicky - I wouldn't read into it too much other than a Luminal B cancer is more likely to need systemic treatment either due to the Her2+ status or a higher Oncotype Dx or other genetic assay score than some Luminal A patients, and thus be considered to have a poorer prognosis. Tumor size and nodal status certainly can be factors in survival regardless of molecular subtype, so broad statements about survivability based on subtype don't apply to us as individuals, but generally more aggressive cancers have a poorer prognosis.
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