TRIPLE POSITIVE GROUP
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Back home with antibiotics
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Some of you know this info from another board but I am VENTING and catching ya'll up on my latest problems.
I haven't had too much to complain about other than normal SE's. Thank G-d. My daughter's (the one who came to visit me) husband lost his job 4 weeks ago. It was a complete shock as he had just had a glowing quarterly review. They are still sorting things out as to why he was canned so suddenly. Last week their 22 month old son was rushed to the hospital and has been diagnosed with Type 1 diabetes. SIL's prospects for a new job are good but might entail relocation which they really don't want to do because it would disrupt the kids. So far they are trying to get the baby stabilized and teach the parents how to care for him. He is home now but both parents are a wreck emotionally.
Wednesday my 92 yr old MIL had a lumpectomy for ILC. Probably that will be the only treatment. She is a feisty old gal who is legally blind and very hard of hearing but her mind is sharp as a tack.
Last Sunday my husband had a terrible gastritis attack. He gets them occasionally, usually when he eats to much fatty food. I think this one was stress from his mother's diagnosis. He was out of commission for 4 days which means he was not even able to go with me when I started running a fever Tuesday night. Went to the ER and after a bunch of tests they determined I probably had a virus and sent me home. The next afternoon I discovered my right arm (surgery side) was all red and itchy as well as a section of the skin on my breast. Dashed off to my family doc. who gave me an antibiotic IV. In the morning I went back for WBC test and to pick up mega dose Augmentin pills. This was day 8 of my last AC and felt like a dishrag. . Later that day the doctor called and told me to go straight to ER as my results were not good.
I was admitted and not only was the WBC low but I needed 2 'bags' of whole blood. A first for me and I hope a last! Every time they had to infuse or draw blood they had trouble with my veins. I had a total of 14 needle sticks including 4 in my feet and ankles. My left arm looks like I was in a prize fight. I have been resisting a port but I think my onc. might suggest one now.
While I was in the hospital my daughter who lives here in Israel called to tell me she was on the floor Saturday writhing in pain from what she thought was a badly pulled muscle. This is the daughter who has 8 children (youngest 3 are 4, 2 and 1) and she recently started working part time cleaning houses 5 mornings a week. Here in Israel that is a very well paid part time job. Today she is having a CT scan of her neck and upper back. They suspect a slipped disc!
I see my onc. on Tuesday to 'talk'. I'm supposed to start 12 week TX and Herceptin on the 15th. Since this is my second problem with low blood counts even after adjusting my dose I'm wondering if he will adjust the TX also. I don't want to have the blood issues but I also want to kill those cancer cells. Wouldn't it be nice if he tells me he will give me a break until after Passover. I sure feel like I need one.
I've tried to catch up on reading all the posts but my head is spinning so I apologize for not responding to individual posts.
Thanks for listening.
Peggy
PS I also get a bit aggravated by the "oh you poor thing" look people give when you tell them your diagnosis. I understand they mean well but It doesn't help.0 -
I went to a BC seminar early in tx.
They drew graphs on the overhead. I asked a lot of questions so the Onc and RO asked if I minded sharing my diagnosis. Of course not! lol So they plotted it out next to a mostly negative diagnosis.
I believe it was the HER3 line that declined after a few years, but not much. The ER line though stayed steady (at first, then went up as more women recurred over time). The end result, they told me, was unfortunately triple positive means that our risk doesn't go down with time.
Looking back on it...I wonder why they didn't chart the PR. I wonder if in 10 years we are gonna look back and say....why were we just ignoring the PR?
I'm anxious to hear what your Oncs say tho. So please share, and ask for references, (I was newly diagnosed and swamped so never asked)..so we can all look it up.
T
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Kitchenella: I am so sorry you are going through all of this. Just take one day at a time and it will slowly get better. I am the mom of six kids and two are type 1 diabetics. I know how scary it is but it can be done. They will slowly find their "new normal". If you have any questions, don't hesitate to ask me and I will try to help in any way I can.
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Peggy OMG what a rough time your family is having. Hang in there. Seriously, consider the port. I'm so glad I have mine.
moonflr They'll get rid of this infection. Hopefully sooner rather than later. Believe it or not it isn't that unusual for us chemo gals to visit the ER or be admitted. That was the first thing my BS asked me when I saw him after chemo. He was surprised that I did get LE though.
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Aw, Peggy, hang in there, Thats a lot of stress for you. I will be praying for you.
Lago, I know infections can be a problem, but I was only home from the hospital for acute renal failure four hours before I had to go to the ER, kinda depressing.0 -
Peggy, hope things start to settle down for your family soon - that's a lot of stress all at once!
Mooflower, I hope that's it for the ER/hospital for you - geesh!
NWArtLady, I like you attitude and will try to learn from it.
I did well socializing with acquaintences when I was feeling positive and could maintain the strong woman attitude. When I started having complications and was struggling, I found it harder to be around those who did not know me well, b/c I just couldn't put that act on any more. I have never pulled away from my close friends, though. They have been there by my side all along, and I am so, so thankful for them! 0 -
kitchen - acckkk - you are having a time! I am so sorry about the baby, but they will figure it out. Probably harder on the parents. My hairdresser, who has been a dear friend all through my treatment even when I didn't have any hair, has had diabetes since she was a very young child. She has done exceedingly well and is now soon to be a mother of two herself. Your blood transfusions may maise your hemoglobin enough to allow you to continue with tx. Are you getting neupogen or neulasta for the WBC?
moon - what are you doing girl? So sorry you had to bounce back to the ER, but glad they fixed you up. There is always something! Hang in there!
tonlee - glad your surgery went well - I guess it was meant for you to miss that first one so this one could be cake for you!
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Thank you everyone. I know the baby will be fine. They have made great strides in treating diabetes. I should be thanking G-d its is not something worse.
achpurple I worry about my daughter. Both parents are very well organized and things were going so good until he lost the job and now this. My daughter was in tears early this morning when she called the doctor (per instructions on her 'how to handle things' sheet) and he yelled at her for overeacting and bothering him during his morning ride to work.
Special K I did take neulastim. I had a WBC episode after my first infusion of AC and the doc adjusted my dose so I thought I was home free. I'm finished with AC now, Thank G-d, and supposedly the weekly Taxol is not as hard on the cells so I am hopeful this will be the worst.
Peggy
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Peggy....echo Lago. Get the port. It is wonderful.
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Tonlee....your info was what I thought. As triple positives, we have a lifetime risk, but triple negs are much more out of the woods if they hit three years with no recurrence.
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Fluff,
I glanced at some charts today for ER postive BC and the recurrence goes up as years go by...not down. DANG IT!
Sucks.
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hill - Good paper.0
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Kitchenella: Your daughter needs to find a new endocronologist immediately! I have our endo's phone numbers, email, etc. and I can call her anytime and have never been yelled at - and I've been doing this for almost 13 years now. She needs to be treated with respect and thoughtfulness because it is very hard to swallow all of the information thrown at you - not to mention that you are scared to death!
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I scanned the paper. I missed what the treament was (what chemo or Herceptin) for HER2+ This study was pre 2006 when herceptin was standard care for early HER2+
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I don't think they got herceptin. And it looks like they didn't say what kind of chemo, but I might have missed it.
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hi ladies
i recently asked 2 oncs the "reccurance question" - both her2 experts
1- risk is highest in the first 2-3 years after diagnosis (2 years after treatment) and that the her2 component trumps ER positive
2- risk is highest 2-3 years but is still there until about year 5 b/c of the ER portion
shore1/ton lee/jenn - i have also avoided social gatherings etc. One of the biggest reasons i quit work was that i am pretty well known in a small industry. I did not want to be "that girl" that people talked about at every trade show and event. Sometimes I feel like a failure because i got this - I know, stupid but I just feel like it was my fault somehow.
The other day the buses for my kids school were cancelled and I had to pick them up after school. First time since diagnosis - I ran like a mad woman to their class, grabbed them and threw them in the car so I could avoid seeing all the teachers, mothers etc. I just don't feel like talking about it and I hate that everyone is looking at how I am "holding up" - drives me crazy.
When I was getting chemo I met a lot of women in the infusion room - some newly diagnosed but a few with mets. I can't get those women off my mind, all young and they did all the "new" aggressive treatments.
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Herceptin call only improve our chances of long term survival. That article is a little meaningless to me if it does't consider Herceptin. It shows ER/PR-/HER2+ with worse prognosis than triple negative. I don't believe that is true anymore because of Herceptin.
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Rozem, you sound like me - I ran in & out of the orthodontist office with my daughter so fast the other day because I didn't want to run into anyone asking how im "holding up." It just sucks to feel that way on top of everything else.
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Roze,
I don't believe Her2 trumps ER. They are both different aspects of our cancer with different long term results. Her2 recurrence may decrease with time, but ER seems to increase. So I'm not sure how that trumps...??
Unless I'm reading this wrong, even tho this is a chart to show tamoxifens efficacy over time...it also shows the the rate of recurrence goes up with time....not down.
It's just one example of the many ER positive ones I've seen. (Taken from the Lancet study on Tamoxifen).
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TonLee - I think the recurrence rates are actually decreasing with time, the curve is going up because it is cumulative but flattening out. If you look at the table of Recurrence rates, for years 0-4 it is 3.74 and for years 15+ it is 1.75, so it is going down. They labeled things funny, the x-axis on the graph is labeled 'years' and the recurrence rates title goes with the table I think.0
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Lago, fluff, and NWArtlady-Thanks for the truthful albeit encouraging words regarding Taxol/Herceptin treatment.
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I saw this on a another tread about hormone therapy past 5 yrs, if you google " who should take extended AI therapy" you will find a slide show that clearly shows from the stats if your Her2 then your rate of recurrence drops at the 3 yr mark and extended hormone therapy past 5 yrs is not recommended for triple pos as the rate of recurrence is low past 5 yrs.
I'm not taking any hormone therapy even though my periods returned at the 2 yr post dx as my Onc dosen't think I would benefit more than a couple of percentage as far as recurrence goes as I'm 3 yrs past dx - for me he believes the her2 part trumps the ER my percentage was 40% PR 20%0 -
I know I'm going to ask my NP this question but I do know for sure that our risk of recurrence is highest in the first 3 years… that's why my onc prefers her patients keep thier ports for 2 more years after chemo. I also believe that the risk even before herceptin goes down for every one after 5 years. The amount of risk does vary… hormone positive does have a higher risk of long term recurrence than those that are not but then those who are not hormone positive have a higher risk for short term.
I'm not sure how the Herceptin plays into this. I believe the oncs have an idea but again this drug has only been standard care for early stage for 7+ years. Only time will tell.
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I am so thankful we have herceptin!!
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LouLou I am familiar with that study too. Here's the linky to the pdf
and it does state that us luminal B types do not get any additional benefit past the 5 years because we typically recur in the first 5 years. See page 22 This confirms what rozem's oncs say. Highest risk in the first 3, high risk in the first 5 then starts to flatten out (pg 19).
Remember this is only one study but it is fairly recent. Not quite a year old
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Omaz right now I'm so thankful I have a self cleaning oven.
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lago - You're a hoot! 0
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Now if they could only make self cleaning bathrooms and floors! (Rumba doesn't count. I hear it doesn't suck all that well. Vacuums should suck).
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i'm a lurker here and always read this thread. my question is, what is Luminal B?
thanks!
Liz
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