TRIPLE POSITIVE GROUP
Comments
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Yay Kitchenella!
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Congrats on finishing rads Kitchenella !0
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Soltantio, Thanks for the information. I know the more I read the more confused I get. All the detail about the various studies is overwhelming. Some research results scare me and others encourage me..
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Eileenohio what's true today might be rebuffed tomorrow. Unless you understand all the details some of these studies have flaws. This is why they continue to do studies before they will make a definitive statement of something being true… and at times they get that wrong too.
Don't let the studies drive you crazy.
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slousha - i will ask about that thanks! i would like this even if i stop tamox just in case
jenn - your surgery is a few days before mine -i need to clarify this tamox issue beforehand . Did they say how long in the hospital? i was told 2-3 nights
yes the studies are all very confusing, and i agree that some lift you up while others pull you down...my BS said to be careful when reading/researching these because some are based on a very small sampling of patients.
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Kitchenella--Yay for u now settle into herceptin and sit back some.
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rozem - my surgeon says 5-7 days in hospital and that most of his patients are drain free when they leave with the occasional woman leaving hospital still with one drain. He doesn't like to send women home with drains. His patient that I contacted and spoke to said she was in hospital the full 7 days after a small bleeding problem.
I know that here in Australia there are quite frequently small differences in normal practice to what happens in the USA. Insurance companies only cover hospital stays and procedures and have nothing to do with drug charges and have no say in clinical decisions like length of stay. I think that is why there are sometimes differences...
Jenn0 -
I know this is slightly off topic...but, while I was watching CNN this morning I saw a news report on Johnny Imerman that created Imermans angels after battling testicular cancer at the age of 26 2x. He could not find a support group with young survivors so he created one. It is an organization for anyone, any age, any cancer, any stage, and it does not matter if it is during treatment or after...it is even for caregivers. It can be short term communication or long term depending on what you want. There is even a medical staff listed on the website which I found interesting. I was so inspired by his story and his efforts to create this organization that I thought I would share it on a few of the threads. I love this website (BCO) and especially our thread and find so much comfort in it...but, sometimes I just want to talk on the phone with someone or skype.
Imerman's Angels is a good resource to know about and share with others if they need it or for us if we feel the need to reach out even more.
here is the link to the cnn report if you are interested...there is a tv ad first.
http://www.cnn.com/2012/08/23/health/cnnheroes-imerman-cancer/
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Ironically I applied for a job with them this spring. They turned me down (I think I needed more marketing background). I havn't officially become an Immerman Angel because I do so much of it here on this site and on the Illinois Ladies thread. I've met so many women of all ages here in the Chicago Area. Talked a lot of women off cliffs, sat with a few during chemo, visits after surgery. I'm already doing it… but this is a great grass roots organization.
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Ah Lago...I am sorry to hear that they did not snatch you up. They did not realize what they were missing out on:) You are always a great sense of comfort to everyone here. I know you are for me personally.
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It wasn't to be an Angel volunteer… it was an actual full-time paid position. I'm sure they would snap me up for any volunteer stuff but right now too deep here and with the ACS Strides Walk Committee.
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Lsgo u'd be worth any price they needed to pay, but I'm sure glad u'r here, that's for sure.
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Lago, I hope your Making Strides event is more organized than the one in Indy was last year. I did that one and then the Komen one this spring, and the Komen one was far more coordinated, organized, and fun, touching.
At the Making Strides, no one could tell us where to go, some of the sponsors weren't on site, very chaotic, and when we crossed the finish line, virtually everything was torn down and it was like thanks...move on.
The other thing that bothered me was the incessant emails telling me to raise more money and keep contacting people. I didn't get that with the Komen one. Had a couple.
Even after the race, I continued to get fundraising emails. I finally blocked their emails. also, filled out the survey, and went through point by point areas they could work on.
Kitchenella...congrats! I hope you continue to improve, but don't overdue it. Take it easy and build your immune system back up.0 -
Getting back to the pCR discussion. I am enrolled in a trial that is monitoring and assessing the long term effects on survival of neo adjuvant chemo . You ladies will be among the first to know MY prognosis.
It's called NBRST.
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Primary Outcome Measures:- Chemosensitivity as defined by pCR [ Time Frame: Up to 6 months ] [ Designated as safety issue: No ]For neo-adjuvant chemotherapy patients the primary endpoint is pathological complete response (pCR) which is defined as the absence of invasive carcinoma in both the breast and axilla at microscopic examination of the resection specimen, regardless of the presence of carcinoma in situ. The response rate and corresponding confidence intervals will be presented as a proportion of all patients enrolled. Comparison of response rates between different molecular subgroups will be conducted using Pearson Chi-square test.
- Endocrine sensitivity as defined by partial response (decrease in longest tumor diameter or residual cancer burden category 1 (RCB1) [ Time Frame: Up to 6 months ] [ Designated as safety issue: No ]The primary endpoint for patients with neo-adjuvant hormonal therapy is partial response which is defined as decrease in longest tumor diameter. The response rate and corresponding confidence intervals will be presented as a proportion of all patients enrolled. Comparison of response rates between different molecular subgroups will be conducted using Pearson Chi-square test.
Secondary Outcome Measures:- Correlate chemosensitivity (as defined by pCR) to TheraPrint Therapy Gene Assay results. [ Time Frame: Up to 6 months. ] [ Designated as safety issue: No ]Correlation of chemosensitivity and endocrine sensitivity (as defined by pCR) to TheraPrint Therapy Gene Assay results will be determined using Pearson correlation and linear fit models.
- Assess metastasis-free survival and relapse-free survival in molecular subgroups, determined by the established MammaPrint, BluePrint, profiles. [ Time Frame: At -2-3 years and 5 years after definitive surgery. ] [ Designated as safety issue: No ]
Kaplan-Meier curves for DMFS will be calculated for the following eight subgroups
- Luminal subtype
- ERBB2 subtype
- Basal subtype
- Luminal subtype and high risk MammaPrint
- Luminal subtype and low risk MammaPrint
- ERBB2 subtype and high risk MammaPrint
- ERBB2 subtype and low risk MammaPrin
0 - Chemosensitivity as defined by pCR [ Time Frame: Up to 6 months ] [ Designated as safety issue: No ]
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Lago...
Going forward I would like to volunteer , organize and raise money for BC related charities. Where do you see the best use of my time and money?
I am asking all my mds and providers the same question.
BTW...an American Cancer Society volunteer called me the day after DX with offers of support. Komen is no longer on my list.0 -
Fluff AMC strides event hasn't been around in most communities as long as Komen. ACS doesn't spend the money that Komen does. So much of the work is actually done by volunteers. I will pass along your comment about the emails. I too get a lot but I signed up for the race using my spam/forum account. They are still trying to improve things but all in all I find the ACS is very careful with their money. They try to squeeze every penny so more goes to research and those in need. When I was diagnosed Komen had nothing to offer me because I wasn't what they called "financially in need" even though both my husband and I were unemployed when diagnosed. ACS on the other hand met with me and ordered me a wig. ACS also has a 24 hot line and people on staff that will talk to you or guide you with any issues like insurance, employment etc. I even know a woman that got rides to her rads appointments from ACS for free because she couldn't drive. She didn't have to turn over her tax statement to get that help either.
Ashla if you read what Fluff wrote (and what I wrote to Fluff) you can see that the ACS really needs help. This is a wonderful organization. I even like the fact they are written up as one of the best places to work for. I like companies that treat their employees well. Even if a strides event is over I will still find other areas to volunteer for them. I know my parents research where they send their donation money and ACS is on the top of their list. (maternal grandmother passed of colon cancer. paternal grandmother passed of lymphoma. paternal uncle beat stomach cancer… need I go on? Oh and of course I'm a breast cancer survivor). I have also donated to Livestrong. Also check out Gilda's Club. Gilda's Club also works with the ACS.
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Thx Lago...
Avon seems pretty good as well. Have to invetigate more but there was an Avon Suite @ the hospital where I had my lumpectomy. All the women's d iagnostic imaging and testing was done there. all done up in purples.
That's where I first heard from the radiologist that my cancer had melted away! I might just be partial...
But you confirm my instincts on the ACS....I never took them up on it but I was offered all kinds of help and a personal cell phone number of a volunteer. I remember sobbing with relief knowing that someone was there to help me if I needed it.0 -
hi ladies - question for you who have been through the herceptin alone. I finished my Taxotere/Carboplatin on July 27th. Had a herceptin alone treatment last friday, august 17. I think it made me tired that day otherwise ok. I started radiation on Monday, August 20. My question is, i still have quite a bit of joint pain especially in my hips. Not sure if it is from the herceptin, bone marrow recovering from the TC, still residual from the chemo etc. I haven't started my tamoxifen yet. I have the script though - just scared to death to start it. Also, i am still tachycardic around 90-96. Dr. says it is due to the anemia from the chemo. However, i read one of the side effects from herceptin is tachycardia. I think i do know too much being a nurse. My echo after 6 treatments of herceptin remains at 60%! I know i need to get my exercise groove back on. However, they said no step aerobics or kick boxing yet. So i am just gonna do walking and maybe a yoga,pilates, tai chi mix. Lord knows i could use alot of stretching after all this. thanks for yoru support!
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Cindy 68
I had 6 TCH treatments and have had 8 Herceptin alone treatments and did not notice a link between herceptin and joint pain. I do have that creaky feeling but it goes back to chemo days and just may be getting a wee bit worse on anastroole which I've been on for a month.
My noticeable SE's from Herceptin have been minor. Just had an echo yesterday. Will let you all know . I've had 14 Herceptins. Three more and I'm done.0 -
cindy I had a lot of stiffness from chemo. Week 5 I finally noticed it started to get much better. Once I stopped herceptin I became even less stiff but not that much. I'm also on Anastrozole (ESD) and it is also making me stiff but in different places.
Ashla I think Revlon was the one who got all the funding for Herceptin too. Without that funding there probably would be no Herceptin! Avon does spend a lot of money on their events but they also make $$$. I was talking to one of the guys at ACS about that this week. He said the return on their investment is well worth it. You'll have to check to see where the money goes. BTW I am so done with Komen. To many other organizations that spend the money wisely IMO.
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ACS was extremely helpful. I got a gas card for $100 to get to tx. Since it was over 45 min each way, it helped. When it was gone, they gave me a second one.(2 a year is the limit) I have a small car and a fillup was still over 40 $. So I was thankful. I called with questions and they are very helpful. I am grateful they exist.
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The money that went to Herceptin research was from Revlon but all that fundraising was spearheaded by Lily Tartikoff, whose husband Brandon was treated by Dr. Slamon. Without her that money would never have reached Dr. Slamon's project at UCLA.
cindy68 - how fast are you getting that Herceptin alone infusion? I got my first one without chemo in 30 minutes and had the worst aching I had experienced, literally couldn't sleep because my hips and legs hurt. Omaz mentioned slowing it down so I received the subsequent ones in 90 minutes as I had during chemo and it made a world of difference. What is your hemoglobin and did your tachycardia begin in conjunction with it dropping? Are you getting enough protein? Mine was low enough to flirt with a transfusion but it did make a rebound starting at about 6 weeks after the last chemo infusion, and continued to climb on Herceptin alone.
We have an ACS Hope Lodge here in Tampa on the campus of USF adjacent to Moffitt Cancer Center. It is a great facility. The DH of my friend that passed in March from breast and uterine CA asked for donations to ACS in her memory - I gave directly to the Hope Lodge. My DH also has ACS as the designee in his Combined Federal Campaign pledge.
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thanks Ashla and Lago - it is probably still the chemo hanging around then. it does feel that each day i get a wee bit better. i just want to have my energy back. I am 43 and normally have a high level of energy. Chemo and surgery has toned me down some :-( Also, i am feeling a bit depressed just because i have felt confined to my house since Feb. I eat, sleep, and go to work- come home and crash. Today though, i want to go to the downtown corn festival and get a corn dog!!! That is my goal. the finer things in life. A corn dog out of the box and in the oven just isn't the same.
i see your conversation about ACS and Avon. I saw a advertisement in Eatting Well on a slow cooker cookbook with over 700 recipes that will be available october 1. it is called fix it and forget it pink cookbook by Phyllis Pellman Good. For every copy sold a donation goes to the Avon Foundation for Women Breast Cancer Crusade. I think i may have to get this book. I hate coming home from work exhausted and need to find something for supper. plus it goes to a good cause.
Also, have any of you had any side effects from radiation. I am using miaderm cream. My rad onc. said it really isn't about the cream it is more about how how the radiation is turned up etc however, most of the time the cream gets the credit if the skin stays in tact. So far so good but i have only had 5 - 28 more to go!! i looked at my ct simulation this week. I was curious about rads to my heart since my cancer is on left breast. The beam is missing my heart!! thank goodness. it does nick a portion of my lung but it is a very small area. i don't think the lung can be avoided if it is right or left sided.
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specialk - my herceptin infusion is given over 90 minutes. my hemoglobin last week was 9.9 i started at 12.9 so i am about 3 units low. My tachycardia started with the second chemo infusion however, when it was time for round 3 of chemo my heart rate was normal again. It seemed like the last 4-6 it went up to 120 and now it sits around 88-96. i am getting alot of protein and iron. I am drinking protein smoothies in addition. Thanks!
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EVERYBODY THAT JUST WROTE --PAY ATTENTION--First I actually know something. Lago u know how I don't. OK here goes. 60% for herceptin is OK doesn't sound like it but it is. (muga right?) Anything under 50% then they are concerned and usually stop. OK now ACS is absolutely WONDERFUL I know most are volunteers but they should have halos---when u get a hold of the main office out of u'r hospital they treat u with kindness and they do whatever they can to help u. When u need rides anytime for med. reasons they get everything organized and u've got u'r ride and I remember during chemo a lot of the older women used them and loved what they did for them. I needed rides to rads and they were never late and waited with me and alot of time they'd ask me if I need to pick up meds or anything else I might want. WONDERFUL If I could do things the way I used to I would difinitely go for the ACS without a doubt. This is funny my cat was sick and one of the volunteer's wife was a vet and she did home visits and she came to my home and took care of my cat and after she was fine. It's the way of the universe they were the nicest people every single one---So my choices of donations are St. Jude and ACS--just two --I can't do much more but those are the 2 I picked0
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Cindy, I needed transfusions twice on TCH. I dropped below 8 on my hgb. Count. After tx, I was just at eight and it took almost 8 weeks before it got up to 11. Still below normal at 11.4. But good enough for me to get my TE replaced in surgery. I am still tired. I am getting my third MUGA next Friday. I dropped two percent down to 57%. I also have a pace maker for low heart rate. So I guess its not surprising I tended to tire a lot. The things we learn with this disease.
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oh Moonflower u'r having a helk of a time with all of this. I'm so sorry that u have all of this to go thru. It sucks.
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My bloodwork is also taking it's good old time returning to normal. I'm 10 weeks post. Whites are slightly below normal and hemoglobin is 10.1. Both whites and reds have dropped a tiny bit each week over the last 3 weeks. Still battling the thrush, although it looks like I'm keeping it controlled at least with my dentists' recommendations. Oncologist thinks my salivary stem cells may have been damaged by chemo. Now last week I developed sharp anterior chest pain with deep breaths and laying down flat and had to have a CT lung arteriogram to r/o out a pulmonary embolism - fortunately, negative. Still have the pain, waiting for definitive diagnosis. We are trying NSAIDS (look out reflux), and if it responds, it is likely chostochondritis from the radiation. If not, will be exploring other possibilities like rad pneumonitis. I had to stop exercising b/c of the pain with deep breathing. It sucks pretty much, but at least I'm not in constant pain! I feel fine as long as I don't take a deep breath, sneeze, cough, or lie down flat. I'm back to work teaching and enjoying that and hoping I get these other issues to resolve soon! I'm anxious to get on with life and feel better, hoping for 100% better if that's realistic, LOL.
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cindy68 - sounds like you are doing everything right - you just need a little more time for your Hgb to go up. It really did take mine a while.
camillegal - you are too funny with your headline!
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Dance
I'm also having blood count issues....wbc was lower than when I was on chemo last week!
Both my mo and bs said it takes time for the bone marrow to bounce( if ever) and that I should stop looking at the numbers!
Just thinking about my hair, eyebrows, eyelashes, nails, belly bulge and all the cosmetic stuff on the outside that's fffed up ....can you imagine our insides?
Feeling better physically though...much, much better 2 mos post rads and 6 mos post chemo! Feeling much better....0
