TRIPLE POSITIVE GROUP
Comments
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Thanks for sharing your great news Jack and Bucky!! Forward!!
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Jackaboo & Bucky, thanks for posting your good news. Its encouraging to read and helps remind me that there is an end to infusions in sight.
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Jack and Bucky.....now we can all join hands and have a yoga deep relaxation moment.....ohm....ohm....ohm.....i keep doing it and hopefully one day it will work.
Bucky...I answered your pm.
To whoever mentioned the support group. i have used this as mine. I have met a couple of the women in one of the groups close to me, and not sure it would be a real good fit, so I have mostly avoided them. I think I would be a little too irreverent for them, and they might drive eme crazy with the whole sisterhood thing.
So, you lucky folks get me!
Going to be checked tomorrow morning and then head back home for three weeks!0 -
congrats to you guys finishing treatment, i can't wait to be de-ported! i hate going to the chemo ward for H so depressing
bucky - can you tell me why your onc is saying no to metformin? i am thinking of entering a trial here in canada
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Bucky - my onc dropped the "you might be on estrogen drug more than 5 years" at our last appt. His reasoning was that the studies were done on node positive women, but that didn't mean that node negative women would not benefit too, from longer estrogen blocking.
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Bucky Yes I have read that extending EST (estrogen sucking drug) for more than 5 years be recommended for some women. Congratulations on being done. As I have posted before your chances of getting into a car accident are probably much higher than getting out of NED. You don't think about it every time you get into a car but you do put on your seat belt. Exercising, keeping your weight under control, reduce drinking alcohol if you drink a lot and taking your ESD pill are your cancer seat belts. Don't worry unless you have a symptom that lasts more than 2-4 weeks. This is the time to be excited about being done. I've been on ESD only since September and looking forward to Aug 31st… 2 years NED0
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Thanks for the congrats everyone!!! This whole journey has been so surreal...As for support groups, I hear what you say Fluff. You all have been my support through this and I hesitate on sitting in on one, but will try one out.
Wendyspet--Thanks for the info. I didn't ask him at that time, but I figured that they must have started or are doing some type of study on extended use of ESD.
Rozem-- As for the Metformin, at least for me...I have periods of low blood sugar which if I took Metformin, "not good". I would be shaky, irritable etc.....He also said that he hasn't seen enough studies that show benefit over side effects, even if I didn't have the episodes of low blood sugar. He said yes, there are studies being done on it, but he is "not sold" on it. His words exactly.
Maybe when more info comes out, he will change his mind. If I didn't have the "low blood sugar thing" I would definitely beg him to try it. Good Luck with the study and let me know how your doing.
Lago(life-coach) I am going try to keep reminding myself "your chances of getting into a car accident are probably much higher than getting out of NED" and Congrats on being almost 2 years NED!!!
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Hi everyone. very exciting reading about all who have finished up, but not so exciting reading about those who have had to come off herceptin early...
I'm 9 weeks into a weekly dose with Taxol and have my first MUGA since starting in 3 weeks time. My LVEF was 73 at starting so hoping it is still good. For the past few days I have felt very energyless and I think my lips are looking a bit more blue than pink. I have an appy with my MO next week and will be asking whether my symptoms could be heart related :-(
For those that did rads concurrently with herceptin through a chest port is there anything that you think I should know? Hints and tips or extra issues you wish someone had told you about? I will start rads in mid to late June.
Jenn0 -
Hi Jenn: I'm one of the early 'stoppers' of Herceptin. I did RADS and Herceptin at the same time and no issues with that...went to Herceptin (through the port) and then down for RADS. I'm hoping your heart is fine and it is just all the other stuff going on making you feel a bit draggy. Thoughts are with you!
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Hi Jenn,
I'm doing RADS now along with Herceptin. I have no complaints about doing the two together so far after 14 Rads. I'm just not liking the Rads. I seem to be the only one they bother though. No SEs whatsoever but I'm abit claustrophobic and I'm doing it face down.
Today was supposed to be my15th and the friggin tomography machine had a computer error and shut down in the middle of my treatment...AFTER I'd been started twice! Took all my composure to keep from freaking out...
Everyone else seems to think Rads are a breeze compared to the rest so probably ignore me ...especially today.0 -
Ashla - I hated rads. All mental for me, though - physically not bad at all. I had to talk myself into going every day. I broke into tears one time with the techs. So you are not alone! I did respiratory-gated rads which was a technique using deep breathing with a hold to protect the heart (just like the prone position is to protect the heart). I had some days I just couldn't do the breathing right and had quite a bit of anxiety with it.
Physically my skin did fantastic, pretty red at the end with a few tiny tiny blisters, but minimal pain with it. My skin returned to normal within just a few weeks. I only had fatigue the last few weeks of rads, and it wasn't horrible.
Jenn I did rads before chemo/Herceptin (long story, due to delayed diagnosis of the HER2+), so I can't offer any input on that aspect - sorry! Most people do great with rads.
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ashla - Radiation was strange for me. I had to trust that the machine would do things right. I would count every exposure from every position. I wanted to do it face down but they don't seem to offer it where I live. How many more do you have to go?0
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I'm not even sure what is going to ahppen with rads. In the past few weeks I have become aware that the high number of chest x-rays I had in my adolescence actually put me at high risk of BC and other skin and chest cancers. I should have been monitored for BC etc from an early age ie: in my thirties. But I did not know this and because I have moved doctors and countries over the years I have no medical records from back then.
So, i have emailed this information to both my BS and my RO and I have an appt with the BS this coming Monday to now talk about having a full BMX since I only had a lumpectomy. I have an appt that is supposed to be my planning meeting with the RO the following Monday and I think they are now both going to have to have a chat to work out what to do with me...
Jenn0 -
Hi
Thanks to everyone who sent me congrats messages and of course big thanks to Tonlee for starting this thread. I had my final herceptin yesterday. Feel exhausted and have dark circles around eye area but other than that just glad to be done. I have a follow up breast clinic appointment next wed which is when I will, (am told), receive the "You are not being abandoned" talk. One frustration yesterday: Only saw a registrar, not my oncologist (Dr Ram). When I asked about my ER % he just said it was an Aldred score of 12 (pretty sure it was 12!) Also he said they dont test for PR so there was nothing on the path report about that. This doc couldn't answer "How long does H stay in your system?" and didnt get a definitive answer about when I can come off Ramipril. Hoping in a coulpe of months personally.
Jenn: I had 15 sessions of rads. I did very well. The worst part for me was having to travel to the nearest city with a machine. The clinic was super quick but I was on a charity pick up bus for patients within my county and I was travelling for most of the day. I did feel sore and red but didnt blister. Initially I was concerned about rads over my heart side but nowadays it is very much targetted and less risky. Im sorry you are considering a BMX at this stage of your treatment. This seems like a radical step but I'm sure your team will advise you. I was told that rads were essential for me because I also had a lumpectomy. However, in Uk Her 2 patients who have had mascectomies still have rads. I think it depends on tumour size, nodes etc. Keep us posted and best wishes to you.
Liz
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What is 'RADS'?
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Radiation
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Congratulations Liz and Bucky! It must feel great. I have two more and then can join the finished group. I am one who had a break in tx because of heart problems. It hasn't gotten better, but it hasn't gotten worse either, EF went from 65 to 45. I had no symptoms that I realized and was really shocked to hear of the issue.
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What do the numbers mean re: heart? I've been getting regular Echo's but they just say "Kol Beseder" (Everything is in order).
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Boker tov Kitchenella!
They're mostly looking at the EF...ejection fraction of the left ventricle. They compare it to the start of treatment.
Herceptin can cause it to decrease. Think normal is over 50 % which is at the low end of normal.0 -
ER positive(90%) alllied score 8/8, PR positive (80%) allred score 8/8, her2 (100%) 3+/3. What does this mean. Are the high %'s easier or harder to treat. ?
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Hello ladies. I am popping over from the Triple Negative thread to ask you all a question. My cousin has just been diagnosed with triple positive BC. Her husband told me her MO recommended TCH treatment. He said it stood for Tamoxifen, Carboplatin and Herceptin. I know the C and the H are probably correct, but I have never heard of Tamoxifen as a chemo treatment. Only as a five year follow up oral med. I asked if maybe he was mistaken and could the T be Taxotere, but he said he was positive. Could any of you shed some light on this for me?
Thank you, Tiffany
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TifJ....Probably he meant TAXOTERE not Tamoxifen0
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Yes, he meant taxotere.
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tifj - TCH is Taxotere (sometimes Taxol), Carboplatin (or Cytoxan) and Herceptin, but it will most likely be followed by Tamoxifen if she is pre-menopausal. This may be what confused him.
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Thank you. This is what I thought but wanted to double check.
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I see it has been pretty quiet here the last few days but I'll try posting and see if anyone comments.
After almost 6 months off Herceptin and my EF only back to 55, she wants to begin it again but only 4 more treatments which would take me to a total of 14. I'm really nervous but guessing I'll go for tomorrow's treatment and then consult with my cardio (who really knows nothing about Herceptin). I was under the impression that after 3 months, you couldn't go back on Herceptin but I called Genentech and they said that isn't correct and there is no timetable that they have established. All my blood work including another CTC (circulating tumor cell) is fine and she even said ...."do I think your bc will return, well no"...so why put me back on Herceptin. I'm nervous and even more concerned that she would say she didn't think it would return.
Looking for opinions here, please.
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ArleneA - I also had to stop for another reason after 12 doses. My MO would not restart it as she said there was no data on 'gap' treatment. She also said it is not know how long tx. should last, a year is just a guess. My EF was 65 at tx start and 55 one year later. I was not tested in between. I wish I could have stayed on the Herceptin for the full year, as all my research shows that is perhaps the best chance for no recurrence. I think I would ask her why she wants to continue, as your stage is very early and no positive nodes. I think I would ask for another cardio opinion, someone familiar with Herceptin. (My immunologist is very up on this drug!) Having been off it almost 6 months, I would gather more info and not rush into anything. You have a weighty decision; I wish you well.0
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I went to California earlier this month to be with my best friend who lost her dad suddenly. We were driving from San Francisco to Sacramento and as we drove through the Vacaville area to stop for a bite to eat guess what we drove by? One of the locations of Genentech - I rolled down the window and yelled THANK YOU!
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k i need some help in deciding to get a port put in or not. Im mostly afraid of getting a infection as the doc said if i get a infection while on chemo is a bad thing. what do you think port or no port
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wasgij96 - How are your veins? I think that might be something to consider. I had a port and I also saw people getting chemo without a port. The nurses at my center were really good at finding veins. I think with the chemo in my opinion the port was a good thing because I was worried about damaging my veins. Hope that helps. I didn't have any infections from the port.0
