TRIPLE POSITIVE GROUP
Comments
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ashla, I am also stage 1 her2 pos, and wonder often if chemo was the right decision. I sometimes wish I was ballsy enough to forego the chemo and all its SE and rely on surgery and Herceptin to win the fight for me. But ultimately, I went with my MO's recommendation for chemo too because I wanted every opportunity to be around for my kids as they grow up. Even if that meant dealing with the SE and after-effects of chemo.
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40% chance I didn't need chemo or AI. My gut says I'm probably one of those 40% but I wasn't willing to gamble. I'm fine with my choise and my SEs. Don't look back. Keep looking forward because you are here and can!
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I called my dr and she called in a prescription tablet. This can be from se from the steroids.
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When I met with my onco she told me that radiation begins after chemo is over and is a daily treatment for 6 weeks That I should plan to meet w the radiologist before my chemo ends. Any input what I should ask need to know. I'm hoping se will be over and the radiation will be the end run.
Happy weekend to all0 -
shasha, I learned a lot from a lady from here screen name omaz. She suggested that I ask to see the plan. They plot your radiation while you're in the ct scan and then tattoo (small little dots) to mark where they are to aim the beam. So after this is done you can see the plan. I'm glad I did, because the first Radiation Onc. I went to was less then honest with me about how much lung would be in the beam. So I got a second opinion and the second one was able to develope a plan with no lung in the beam. He did however say there might be some scatter that would effect other organs (i.e. lungs, heart, esophagus). I could live with scatter and went with the second doctor. If you can find an RO that does the prone position (on your stomach) there is even less radiation to other organs. No one around here does it that way, so I had to go with the supine position (on your back). Ask what skin care they suggest. My Ro only wanted me to do Emu oil. I had no burning with the Emu oil.
edited to add: emu oil does stain, so I bought some undershirts that I could wear under my bra. Also that helps with comfort.
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Shasha
I used pure aloe after each tx and Acuphor don't know if I spelt that right but used it at bedtime...your RO should make some suggestions on what to use ...I was only pink on the colar bone no burning else wear just looked like I had a sun tan on the right...0 -
Thanks for that great post, GrandmaV. I just took a screenshot of it to save for future reference.
I had a radiation consult this past Wednesday. The radiation oncologist was supposed to call me back yesterday but I didn't hear from him. I'm guessing the pathologist he wanted to meet with was on vacation or something because he seemed very reliable (he's at the Disney Cancer Center).
I found out an interesting tidbit about the pathologist who did the second opinion pathology report. He is apparently a breast cancer expert and was involved in the development of the oncotype test. I mentioned that to the oncologist and he said he was involved in the oncotype development as well. I was a combination of happy and nervous when the second opinion report came back with the micromet at .5mm versus 1.0mm but knowing his background I feel very good about that now.
I asked him about radiation to the axilla only. He said he wouldn't rule it out but that the hazard is whether or not there's a recurrence in the future and if radiation is needed there could be an overlap(?) problem. My tumor was near the nipple - far away from the chest wall - and I have a mitral valve prolapse so I would really prefer to keep the radiation away from my chest area.
He left the room and put my statistics (as they stand) into an MD Anderson node calculator. Here's the link in case anyone else is interested:
http://www3.mdanderson.org/app/medcalc/bc_nomogram/index.cfm?pagename=nsln
The link may have been posted here before and I missed it.
Also, here's a link to several of their calculators:
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Sasha GrandmaV put down a great post and the hospital gave me aloe and that was fine for me. but I'm still all dark in that whole area, it really ruins my playboy bikini look tho. OMG, don't I wish)
Anyway once u start u know u'r on the final ride of this awful clown ridden circus. So there's an up right there. And yes so many SE's and everyone gets some and some more than others so u'r in the stream of things. My absolute favorite was when all my skin, even under my feet peeled off, my skin was new and baby soft and I was just pulling it off by strips LOL, my grandson and I would do it together, the family that pulls skin together is a happy family. I still get strange side effects but nothing as good as skin coming off, in fact nothing good at all.0 -
GrandmaV
Thank you for the post. It was extremely helpful. I hadn't thought about the other organs. So focused on bc. I will definitely ask about the plan. Thanks so much0 -
Shasha, glad you're feeling better this time. I'm on day 9 of my 3rd treatment and feeling good too. It took a couple days longer this time to get on the upswing, but I got here! I had my RO consult last week also and am going to be on the 5 day/week x 6 week plan too. I spoke to a woman yesterday who said her mother had a port for radiation that filled a balloon like thing in her chest to keep the concentration of the radiation confined to the specific area. Has anybody heard of that? I definitely want to look up the Omaz skincare plan you all have referred to before I start. Thanks for everything!
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dizzy - here is the page link for the "omaz method" of skin care for rads -
http://community.breastcancer.org/forum/80/topic/764183?page=142#post_2810892
The radiation technique you are referring to is brachytherapy. Here is some info below.
The main benefit of breast brachytherapy compared to EBRT is that a high dose of radiation can be precisely applied to the tumour while sparing radiation to healthy breast tissues and underlying structures such as the ribs and lungs.[53] APBI can typically be completed over the course of a week.[12] The option of brachytherapy may be particularly important in ensuring that working women, the elderly or women without easy access to a treatment centre, are able to benefit from breast-conserving therapy due to the short treatment course compared with EBRT (which often requires more visits over the course of 1–2 months).[4] Brachytherapy has demonstrated excellent local control of breast cancer at follow-up of up to 6 years post treatment.[12][55][56] A study is underway to compare patient outcomes of APBI in comparison to EBRT at up to 10 years after treatment.[57]
There are two methods that can be used to deliver breast brachytherapy:
- Interstitial breast brachytherapy using multiple catheters
- Intracavitary breast brachytherapy using a balloon catheter
Interstitial breast brachytherapy involves the temporary placement of several flexible plastic catheters in the breast tissue. These are carefully positioned to allow optimal targeting of radiation to the treatment area while sparing the surrounding breast tissue.[4] The catheters are connected to an afterloader, which delivers the planned radiation dose to the treatment area. Interstitial breast brachytherapy can be used as “boost” after EBRT, or as APBI.[54]
Intracavitary breast brachytherapy (also known as “balloon brachytherapy”) involves the placement of a single catheter into the breast cavity left after the removal of the tumour (lumpectomy).[4] The catheter can be placed at the time of the lumpectomy or postoperatively.[4] Via the catheter, a balloon is then inflated in the cavity. The catheter is then connected to an afterloader, which delivers the radiation dose through the catheter and into the balloon. Currently, intracavitary breast brachytherapy is only routinely used for APBI.[58]
There are also devices that combine the features of interstitial and intracavitary breast brachytherapy (e.g. SAVI). These devices use multiple catheters but are inserted through a single-entry point in the breast. Studies suggest the use of multiple catheters enables physicians to target the radiation more precisely.[59][60]
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Steiner18
The woman Her2 pos woman I met who didn't get chemo was in her early 70's ...a very, very young looking 70....and had other medical issues. As is my usual experience with BC ladies I meet in person, she wasn't very well informed on the issue . Didn't seem to want to know too much. Are we in this forum a rarity?
DIZZYmom
Didn't know you needed a port for it but my breast surgeon uses intraoperative rads and believes intraoperative radiation is the future for many BC patients. Size, location stage et al are factors. unfortunately for me, I wasn't a candidate.
There is a study on the long term effects and success record called TARGIT.0 -
I went for a second MO opinion on Friday and was presented with three options for chemo:
Option #1= AC+T+H
Option #2= TCH
Option #3= Taxol weekly x 12 + Herceptin
Has anyone heard of this third option? The MO said is it very new and is a successful treatment but there isn't any long term data supporting it because it is so new. I thought it was interesting, but I'm not willing to lessen my defense against a reaccurrance without long term data.0 -
ashla, I was wondering the same thing. I was talking to another BC sister last week who was recently diagnosed with DCIS, had a lumpectomy and was meeting with her RO this week. She didn't really seem to know a lot about her cancer and was happy to just do whatever they told her to do. I told her about this site and all the great encouragment and info available on the rads boards, but she didn't seem very interested. I really don't understand the blind trust people put in their doctors and the fact that they just don't want to know the details about their disease and treatment. As for me, I am so thankful for these boards and all the wonderful ladies here! I have learned things here that I never heard from any of my doctors and things that have helped me ask (hopefully) intelligent questions when I do meet with them.
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Speedy4 Yes I have heard/seen the third option. I know I met someone on bc.org who is doing it… I think on this thread. Has your onc told you what the long term SE might be for each?
This is what I know granted some of these are very rare. There are others I just know know them all.
- Option #1= AC+T+H Increased risk of heart issues, into the future. Not sure how common
- Option #2= TCH Very rare risk of hair not returning or partially returning 3-6% risk due to taxotere (Note: I was on this and my hair returned and is as thick and shiny as it was pre-chemo)
- Option #3= Taxol weekly x 12 + Herceptin. Although you can have neuropathy issues with option #2 (taxotoere) Taxol has an even higher risk of neuropathy. If you do experience issues your onc will lower the dose. If it's really bad you might have to move to a different option.
- NOTE: There is also heart issues with Herceptin. This is why in option #1 A is given before H. Knowing all this I might have chose option #3 but I probably wouldn't have been able to continue. I had nueropathy with option #2. Not to bad but my left heel is numb now and it gets worse when its going to rain or snow (I can now predict weather!). Not a big deal righet now but I know when I'm an old lady it will effect my balance. It does now if I stand on one foot but very minor. I still wear heels (not spikes) but I do notice my balence isn't as good as before chemo).
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Speedy, I had 12 weekly taxol plus Herceptin. I know some others on this board had that as well, but it's not as common as the other treatments suggested to you. My invasive tumor was 5mm, and had I not been HER2+ chemo would probably not have been needed. My MO told me that I am the first patient for whom he recommended the 12 weekly taxol plus Herceptin, but that another MO that he highly respects (out east somewhere, can't remember who or where) uses that regimen for women with a similar diagnosis and he therefore felt comfortable recommending it. I really didn't want to do chemo and asked about Herceptin alone, but he (and most MOs) wouldn't do that. After all the reading I've since done, I'm glad of that. In the end I had very few side effects from the weekly taxol. I did use cold caps to keep my hair. I don't know if age enters into it - I was 60 at diagnosis, and maybe for younger women a more aggressive chemo regimen is warranted. Long term - well, that remains to be seen, but my MO is very optimistic that I will have no further problems. I hope he's right!
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Ashla, I was 73 yrs old when diagnosed. My only health issue was that I have osteoporosis. Having never been sick,not even a cold or the flu for as long as I could remember I was terrified. I wanted to know everything I could. My MO tells me I read too much stuff- lol.. I ask so many questions that she laughs at me. This site was the best source of info. I would not have done chemo if not for all the encouragement by the ladies on this board. I want to know what to expect and be prepared for it.
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Special K thanks for posting the omaz link
And all the the info on rads
Dizzy mom did you see the post about reviewing your plan with the ro? Re: grandma v
It's very informative.
Glad you're feeling better0 -
Speedy4,
I had the taxol/herceptin 12 wk regimen. I believe if you are Her2+ then you must have herceptin. I can tell you the A/C chemo was much harder for me, the SE's worse. I didn't have too many SE's with taxol. They will monitor your heart during the herceptin usage.
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fluffqueen and pbrain also did the Taxol plus Herceptin option. I think it is sometimes recommended for people who are on the bubble from a tumor size perspective (the 5mm cut-off), or have multi-focal that are all under 5mm. It seems to also be an option for some who don't tolerate Taxotere, such as pbrain.
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Thanks so much SpecialK for that information. That method doesn't seem appropriate for me, assuming I no longer have any tumor. And I am definitely going to review the plan with my RO. Getting a sitter everyday for six weeks is going to be fun. It will be summer so maybe a teenager, but my youngest has Autism and might be intimidating to somebody without that experience. We've never had anybody but family watch him. My mom will come stay with me for as long as I want, but six weeks is a lot to ask......again. She stayed that long around my surgery. Oh well, I'll figure it out! Thanks everybody!
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And thanks for the information, GrandmaV and from Omaz. I saved both of those and will make sure I have the products on hand before I start. Thanks you Ashla for that study, I will check it out. I really appreciate you awesome ladies!
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DiZZyMom - ask if you are a candidate for the 15 day "Canadian" protocol for rads. Research has shown it's effective and so much more convenient in terms of time...
Jenn0 -
Sorry, I missed a few pages. Someone was talking about low potassium, magnesium. When you are trying to build those up, remember to be careful if you have diarrhea. Most of the foods high in those elements can make diarrhea worse, leading to loss of, you guessed it, potassium. So just be aware and take care. Ask me how I know this.... LOL much love.
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dizzy - brachytherapy is for lumpectomy anyway - you had a mastectomy, correct? The placement of the balloon is usually done at the time of surgery. This is what my BS was recommending for me when we were considering lumpectomy. I elected the BMX so this was not applicable for me, and I did not require rads afterward.
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Thanks Jenn, I will look into that too!
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Thank you for responding about the three options. I'm 42, have multifocal, 7mm, 3mm, & 2mm. I guess with clean nodes the MO wanted to present the Taxol + Herceptin as a possible option as well.
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Speedy...I did 12 weekly Taxol + Herceptin followed by 4 round of FEC. It is the MD Anderson protocol. Just another option if you don't want to do the A/C. It's a bit easier on the heart but adds in the 5FU (the "F" of FEC) which is a little extra punch towards the rogue cells.
I had chemo first followed by surgery and had a complete response to the chemo,hope that helps.0 -
I'm pretty sure I'm going with TCH. I heard very little about FEC but going for a third opinion to MSK this week and will ask more questions. Thanks!
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Re: the AC regimen - hopefully someone will correct me if I'm wrong but I think you can only have AC one time. Just throwing that out there.
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