TRIPLE POSITIVE GROUP
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Rozem :-)
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Linda 505
I follow someone on Twitter who posted these.. In the past few days..
She got a twitter reply from Aetna... They monitor these things.
"Thank u, Aetna for covering me during breast cancer treatment. Go to hell for all the stress u inflicted when I shldve focused on recovery"
": Cancer was rough. Dealing with Aetna denying claims all willy nilly was rougher. What an immoral company."
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Ashla yes I read that. If I didn't get the MRI then they would have never found the LCIS in the other breast and my BS would have recommended (and talked me into) an MX instead of the BMX. Women who have dense tissue breasts should get MRIs. If I had an MRI after my initial scare 4 years prior to diagnosis I bet my tumor would have been caught as DCIS and certainly not 6.5cm (including non-invasive part).
My survival might be the same but I would have certainly had a lot less treatment!
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I never had a Pet Scan & because I had neo adjuvant chemo I had two MRIs . The first on both breasts and nodes and second just on left breast and nodes after chemo prior to surgery .
With neo adjuvant they have to scan after chemo!
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Ashla - the bad thing is that when I get someone on the phone they are really trying to help me find the answers - you can hear the frustration in their voice in not being able to look some things up and give direct line numbers that reference the ruling. They are lost and admit that they have little confidence in what they are telling me. I have won two battles with them so far and lost one. I now have a big one - as they approved my brcaplus according to ambry the lab with a 30 copay. Now the claims says they are denying 3/4's of the testing as experimental and that I have a responsibilty of 4200 - and they are paying 1800. Now that 4200 is what ambry billed for the 3/4's not covered but since it isn't covered there is no agreed upon aetna rate ughh. However I did not sign anything saying that I would be responsible for anything about my copay for ambry - so I am not going to fight this - it is ambry's issue - not mine. My fear is that alot of providers may drop AETNA with this nonsense.
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it's very important that while moving beyond treatment with our lives we stay informed and engaged. There is a great twitter forum 9 pm Monday night eastern time #bcsm . That's breast cancer social media .I just lurk but this kind of stuff can be addressed by leading mds.
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thanks ashla - I will check this out next week - if I can stay awake that late - Monday will be one of my down days I think
Feel good today after treatment yesterday
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linda505
I read yesterday that more insurers are coming aboard in exchanges. but in Florida you don't have support for it.
I had BCBS of Florida throughout and they covered everything except my wig! No arguments no billing problems and all my treatments were out of state in NY!
They offered me all kinds of personal advisors ! They were great!!!! Never thought I would say that about any insurance company.
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Linda 505
Great you are feelin well!
My worst days were 4 through 7... When the side effects of steroids kicked in and the benefits of them wore off!
A few girls here got smart and cleaned their closets and all kinds of Wonder Woman stuff while on their steroid high!
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Thanks all for the 5 year wishes : )
I am not QUITE there, but getting close feels great. I am chicken to change much - if it ain't broke don't fix it. I think I do metabolize tamoxifen - I get hot flashes still! And my bones, especially my miserable bum knee, ache all the time. There is a comfort factor for me to stay on it instead of switching to an AI.
Ashla, I think you are right about medicine changing a bit. I have a good friend that is an oncological researcher, previous Harvard professor. He helps scientists design proper clinical trials. He lives in Europe now. Brilliant man. I had lunch with him this week when he was in town to arm wrestle with the FDA over some trial again. He predicts that one day we won't be calling it "breast cancer" or "ovarian cancer" etc. since we are learning more and more that cancer is a highly complex and multi-faceted disease that has a myriad of drivers and is also therefore highly individual. Even though we are all triple positive- our cancers probably all have many different drivers. He said that we will get to a point where we say, "Oh, she has a deficiency of xxxx", and a break in this epithelial cell chain, etc...and it also therefore causes, this autoimmune situation etc." I think he said it much more scientific than I just did, lol. But I got the point. One day all of these quirky things we had with our health prior to our diagnosis may make much more sense and in the future we will be able to recognize these health conditions as harbingers of future disease and therefore be able to address and hopefully remedy them much earlier.
Which is precisely, as Ashla put it...why it's important after treatment to remain informed and engaged.
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Geewhiz
Really is wonderful that you are doing well.
I remain hopeful and grateful that we her2 pos ladies have a huge improvement in our overall survival. So much of the progress is being made in the her2 pos arena .
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On the MRI study mentioned earlier - important to note that about 90% of the women in the study (both arms - MRI and no MRI) had lumpectomies. Lumpectomy has a greater risk for local recurrence than MX or BMX. I did have a pre-surgical MRI that failed to see the positive nodes, the ADH or the ALH.
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Me earlier this morning at credit valley hospital. Round 2!!! One more round of FEC then on to taxotere and herceptin. Rock n roll!!
Love reading all of your posts and for all of the good news and milestones!!! Awesome!!
Now that I'm home I'm feeling weird. Tired and just funny on the head. My nurse gave me extra anti nausea meds this time round so hopefully no vomiting or nausea. In the chair the last drug of the FEC treatment went straight to my head and I started feeling queezy. Strange!
As much as I want to walk and do stuff I think that I'll eat then lie down
Have a great day all!!
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Linda505, wow! You are quickly becoming a force to be reckoned with!
Ashla, that is interesting what you said about neo-adjuvant and having to scan after chemo. They did want me to do chemo first, but i was afraid of infection! i really wish i would have found bco sooner, so i could have gotten an education sooner!
Footballnut: RADIANT!
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Hi everyone! I'm new here.
You ladies have been such an inspiration to me! Seeing all of you here and reading your links about the advances that have been made makes me feel so much better.
I was scared when they told me I had BC. My GS went over the pathology report from my biopsy. He seemed pleased that I was triple positive. He said it was good because they knew how to treat it. It wasn't until I read the pathology report from my MX that said my prognosis was poor due to being HER2/neu+, that I became really scared. Everything I read kept telling me if I didn't die this year, it was be in the near future. I became paralyzed with fear. The postings here that I read about Herceptin has helped me to calm down (most days).
I start treatment in about 3 weeks. My MO is doing ACT-H. The AC will be every 3 weeks for 4 treatments. The T-H will be every week for 12 weeks, then H every 3 weeks for a year. Is this the typical treatment? My MO wanted the first part to be easier on me.
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Congratulations GeeWhiz and Rozem. Great news!
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footballnut
You look like a little girl! Beautiful...
Welcome mommato 3
Her 2 pos has gone from one if the worst to one of the best prognoses in less than 10 years!
Lots of ammo in the arsenal and more coming. No walk in the park but all doable.
Cannot address your protocol . I had Neo adjuvant TCH
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kathec
Still thinking about the MRI stuff. I had my first MRI ... Both breasts and nodes the day I had my mammo and ultrasound of the lump I found myself. Had the mammo & US, saw my breast surgeon within an hour. Did a biopsy and had dx in the next half an hour. My breast surgeon is " the man" at this small hospital. He had the MRI lab stay open to scan me the same day.
This MRI was done long before it was decided I was having a lumpectomy. Again that was my only scan of that kind. No Pet for me.
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ashla - I also think that whether they PET or not can depend on nodal status. I had a post-surgical (BMX and ALND) pre-chemo PET, and a post-chemo PET, then another at one year post-treatment.
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special K
Think my dx happened just as the debate heated up on Pet scan pros & cons. At one point I thought I had fallen through the crack on it but MD said no.
I still wonder about whether I should have had it done.
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Welcome Mommato - your protocol was what I was originally given and then mine changed for various reasons - mostly my doing but it is a widely used protocol for HER2+ - it is either that or TCH if you are in the USA - Canada does alot of FEC . I don't see that anyone has started a June chemo thread yet but here is a link to the May one
https://community.breastcancer.org/forum/69/topic/...
- that way you can see what others with the same protocol are doing and how they are coping and share ideas and concerns. I started in late april so I participate in April and in Mays. Sometime in the near future someone will start one for June I am sure.
In the meantime ask away in here - these women in this thread are fantastic and are my go to experts in everything BC related. You will find them smart, helpful, funny and supportive and I am so thankful to have found them.
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Wow Ladies! My chemo brain is fighting with my ADD brain and I am overwhelmed, enlighten, and grateful reading all the posts. There is soooo much informationon this site while in my life I'm still trying to figure out what to serve with my new turkey burger recipe (that has feta cheese, red onions, & spinach). I also need to make plans to deliver the lifesize flat body cut out of Michael Jackson to a Special Olympic athlete while I drive 40 miles into Phoenix for a dentist appt for son #4 to get a crown.
Thank you all for answering questions I've had and for the general support and positive comments that just keep going on and on. I'm sure MOMMATO3 is going to feel right at home. Welcome! I, like ashla had TCH. ashla, I think we may have a lot of similarities in our diagnosis/treatment. However, I'll be trying Tamoxifan in 2 weeks, when I have my last Herceptin infusion... YAY!!! I've had a one week break for AIs and felt amazingly better for 5 days, then, wham, achey again! Go figure!
I had asked earlier about PET scans and was probably misunderstood. I have NOT had a PET scan but was curious about those that may have gotten one. I felt like it could put "closure" on things and make me "feel" like I really have progressed to NED. It's funny how BC causes you to think things out differently. I know that my health today is NO guarantee as to what my state of health will be tomorrow, I still need to remind continually remind myself just take things a day at a time. Life is a blessing and I just need to enjoy.
Footballnut I loved seeing your smiling picture. I need to get a pix up, it just is so much more personal.
SpecialK and Kathec you two have been a joy to follow on the boards. Thanks everyone for all the sharing!
Happy Hump day!
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very informative read on neuropathy & lack of info on it!
On Being a Cancer Survivor: Patient Experience of Peripheral Neuropathy
http://medivizor.com/blog/2014/05/21/cancer-survivor-patient-experience-peripheral-neuropathy/
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more on that discovery of a powerful new treatment for her2 pos breast cancer at Cold Spring Harbor Labs. Sounds like this a moving pretty fast...
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Footballnut Yay happy photo, Boo New York shirt
Mommato3 when I was first diagnosed back in 2010 I kept reading "worse prognosis" for HER2+ too. But the newer information wasn't flowing to the top of google. Now 4 years later there are so many different ways to treat HER2+. BTW August 31st is 4 years NED (no evidence of disease). I'm going to be around for a long time.
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thanks, i guess we are all over the place, as to what tests they really decide to run on us! i only had pretreatment pet. Just wondering what happened to the right renal uptake, and nodules in lungs. and really my pelvic floor and ankles(???) were lit up like downtown at night, just incidentalomas? i was just wondering why my docs werent as curious as me, as to what happened in there? especially with lymphovascular invasion. my tumor itself was behaving itself, but my nodes went CRAAAAAZY.
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My treatment started in the Los Angeles area and went like this:
mammogram
ultrasound
biopsy
mri (pre-surgical)
bmx
herceptin loading dose - december 12, 2012
pet scan - late december (2012)
regular chemo
remainder of herceptin
My oncologist (in Arizona) acts like there will be scans but I've had surgery twice since finishing Herceptin and he thinks there's still too much trauma to the chest wall to do a scan right now. He seems to be a compulsive blood tester compared to my California oncologist.
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Hi LeeA,
I'm in the Phoenix area and was diagnosed and treated here. After my routine mammo it was all a blur. I had a biopsy to confirm the suspected cancerous tumor and was diagnosed with IDC. Tumor under 2cm. The initial surgeon I was referred to suggested surgery within 4 weeks. I sought out a second opinion. The new Dr. ordered additional test on the tumor from the existing biopsy, then suggested chemo first to shrink the tumor size before surgery. I wonder if I may have presented with positive nodes if I would have had the surgery and sentinel node biopsy prior to chemo. That in turn may have caused a different decision on lumpectomy vs. MX or BMX.
MO routinely does bloodwork every 3 weeks, along with the chemo or hercepton. I don't know what is standard regarding when surgery is done.
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Hi livin-in-sunshine,
We're in the Phoenix area as well (about 45 miles from downtown Phoenix). We recently moved here from the Los Angeles area.
When I had the MRI it showed clean nodes and even when they were removed they showed clean (preliminary testing at the hospital) but upon closer examination I had a micromet in the first node removed. I bring that up because had I gone with an MRI and then done neoadjuvant chemotherapy I might have been a stage IIa versus stage IIb. Since I was more interested in a mastectomy (and a prophylactic mastectomy on the other side) I just went forward with surgery and didn't seek a second opinion. I think there have been studies on this but I've wondered how many cells start spreading after a biopsy. My tumor looked fairly compact in the first mammogram but looked like a dandelion that had gone to seed after the biopsy. My surgery was about four weeks later so who knows.
I guess we're about to find out just how hot Arizona gets in the summer in the next few weeks or so. We moved here in late September but we were here looking at houses in July and August and got a taste of a monsoon storm as well as 110 degree (plus) weather.
During chemo and Herceptin my blood work was done every three weeks but my California oncologist never tested CEA or CA/27-29. I don't think he tested LDH on each test. The oncologist I'm going to here started testing LDH after I started on Anastrozole. I don't know if there's a correlation or not.
I see you've switched from Arimidex to Femara. Can you see/feel a difference in the two?
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LeeA - did your doc test LDH before or after the liver enzymes were tested?
Livin - hi and welcome!
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