TRIPLE POSITIVE GROUP
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twinmama i had neoadjuvant chemo - no nodes that they could see on imaging but i did A LOT of research on neo chemo. I was only "felt up" to determine if my tumor was shrinking, and it was every single time. As for the nodes - from what i understand its harder for chemo to get to them -doesnt mean chemo is not attacking them though -What you may be feeling is scar tissue and not actual tumor. I felt a hard ridge at the end of chemo and yet i had a complete response. I also stressed bigtime about the neo chemo route and whether or not the cancer was spreading, i was assured MANY TIMES that if your primary tumor is responding (which it looks like yours is) then its working. My center didnt do u/s to monitor progess ( they are number 5 BC center in north america) precisely for the reason you are stating - not very accurate - so i would trust how they FEEL first - my BS/MO are part of the neo adjuvant clinical trials for her2 and they did not do any imaging during neo adjuvant
question for all I am really struggling with the decision to stay on the lupron/zoladex shots to shut down my ovaries (my period came back 1yr after chemo ended - im 44) my QOL sucks the big one right now. My joing/muscle pains are unreal. I have to take ibuprofen almost daily - i feel like im trading one issue for many others. so my question is how many of you had your periods return after chemo and did your MO recommend shutting down your ovaries or do you continue on tamox without ovarian suppression
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Cami, you are so right--I guess the reason I'd like to know why I got this is to change my behavior, not so much beat myself up...I'm working on taking off the pounds, have lost 3 so far.
The FDA doesn't review OTC supplements, but they watch the companies for any off-label claims (like "this stuff will turn you into Hercules") The manufacturers also have to operate under very strict regulations for good manufacturing practice. The FDA warning letters for different companies are up on the FDA website and you can see who is constantly in trouble and who isn't.
Shasha, I'm a little over 2 months into Arimidex and I have no side effects, except for some hot flashes. Not many though and they are mostly warm flashes. I did have a headache for about a week straight after about a month of taking it, but that went away. So all in all, no big deal ;-)
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Shasha10 ,
On Arimedex...anastrozole..for a year now. It wasn't too bad in the beginning . The biggescomplaint I had early on were sleep issues and joint pain ...hips, hands. I was very stiff and achy but that has improved enormously with exercise especially yoga. At the 9 month point I started having hairloss issues. Lago suggested minoxidil that I started about a month ago and Nicky suggested a shampoo that seems to be helping my hair look thicker at the moment..it's too early to notice real growth.0 -
Heather, I am so sorry you are so stressed about all of this. I had 2 palpable nodes and another one that was on the PET but could not be felt. As chemo went on, they got smaller and by the time I had surgery all the nodes were clear. I did not have any kind of testing during chemo and the only way they found out I had a complete response to the chemo was by the surgery. Don't worry about venting here, we all understand and "get it". I know it is not wasy to be patient and wait, but try to hang in there until the pathology come back from the surgery, that will give you the complete picture of how the chemo worked.
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Thanks Bren. I know that I won't REALLY know anything until I have surgery, but I think that's part of what has me worried because it seems so FAR AWAY! :~) So, at the end of your chemotherapy, prior to surgery, had the nodes shrunk aways to nothing? Meaning you couldn't even feel them anymore? Or were you not like me and didn't try to feel the damn things every day? haha.
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Thx everyone for the input on Arimedex. Will see what happens
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Heather, I did not feel them everyday
, but I did feel for them and the MO checked them everytime I went for chemo, and the surgeons checked them when I went to see them, so someone was feeling me up a couple times a month! Yes, by the time I went for surgery they had "shrunk away to nothing".0 -
Shasa,be sure to fheck out the two arimidex boards, choose one, they're both pretty similar. I'm a year on arimidex, hot flashes. Cold waves, sleep problems and joint pain were there, but all are a bit better now. The cold weaves are far fewer and now last just minutes, (at first, they lasted for an hour or so, where I just could not get warm, then id get a hot flash and then be normal)the hot flashes are less often. the sleep is better, and my joints hurt before the A. So id rather stay on A than try a new drug. That's just me though.
And, Heather, I just had one or two nodes removed that weren't cancer, but were fatty tumors. So maybe the cancer is shrinking, but the node is just full of stuff? So try not to worry yet. Much love to all.0 -
Hi all! I just skipped 20 pages since I was on last. I hope everyone is well. We just returned from our trip to Vancouver and Alaska. What beautiful country. Truly gives new perspective on the word "vast." I did dog mushing (so fun), walked on a solid ice glacier with a crevice on either side (scared the s**t out of me-probably get BC again from the fear stress), saw bears, whales, bald eagles, seals, salmon running and jumping upstream, ice bergs. All in all a pretty neat vacation. The cruise part was probably my least favorite.
I had an ultrasound right before I left to check a couple lumpy areas along my inner incision on the cancer side and area. Radiologist called day before I left as he knew I was worried. Said it looked like scar tissue, but to keep my appointment with my BS when I got back. That was not exactly reassuring, however, my NP friend and her physician husband were on the cruise with us and said that is all he would be allowed to say and to consider it good. BS app is Thursday. I'll see my ONC for my four month check up in September and I plan to start lobbying for a follow up pet scan in February at my 3 year mark. it will take me that long to convince him. See the PS in October for a 6 month check up. I'll have to see what i can think of for him, lol.
Moon....I love cold flashes. So much better than the hot ones.
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So, what happens when herceptin doesn't work? They recently found 3 spots on my spine and after a ct scan they informed me today that there is also a spot on my liver. I'm still on herceptin...
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TwinMamaHeather you are not a debbie downer. BTW I've been eating low fat for as long as I can remember. I have not changed my diet at all since being diagnosed. I ate healthy before and healthy now… and of course I cheat. Gotta live not just survive.
Sasha I've been on Anastrozole for 2.5 years now. I actually feel better than I did the first year. For many of us exercise really helps with the stiffness (but not everyone). I take it in the morning. I also find I sleep better with a sleep mask. I do have some receding hair but I had that before chemo… my hairline is actually better now but I am using women's minoxidil
Fluff keep us posted.
BethCon1 You might ask your question on the stage IV boards. I don't have any personal experience with this other than 1 friend but there other drugs they can try. Lapatinib & pertuzumab are two drugs that they can use with the Herceptin. Also Kadcyla was just approved this year for HER2+ metastatic disease. This seems amazing. I have a friend that started chemo just after I finished. She ended up with mets every where this January including her brain, liver, bones, lungs etc. She is doing awesome. She's been on a few chemos till they found the right one, plus herceptin. Initially she couldn't get Kadcyla because of brain mets. Not sure if she did get it. Also she is hormone negative.
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Just returned from my final chemo treatment. Yea!!! Meet with radiation onc on Wednesday. Question: I have very red breast (lower quadrant in wedge shape). Been on 4 antibiotics and visited surgeon last week who said that it looks like inflamation due to trauma of surgery rather than infection. (No evidence of fluid or pus on sonogram). The med onc said that radiation could inflame the area further. Have any of you had something like this happen? Does it make radiation symptoms worse (like worse sunburn type reaction or permanent discoloration)? Does it delay radiation therapy?
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Miss Karen...you really are my twin...I too have a pie shaped redness on my cancer breast side...this is my 3rd go round with antibiotic....ugh
CONGRATULATIONS ON FINISHING CHEMO !!!
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Karen & Dana, That's strange, I too had a bright red breast post lumpectomy. My breast surgeon was sure I had an infection. I was on three different antibotics which delayed my start of chemo by almost a month. I did not have an infection. It was determined that the redness was just my body's reaction to the surgery. My breast was still red when I started chemo-it was never a problem,the redness eventually went away. I had no problem with radiation..
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Thanks Miss Eileen!
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lagoo How old was Toni at dx?
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karenrm congrats!
Goutlaw I think she was in her mid 40's but not sure. Did you pm her?
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Bethcon, sorry I can't help. Hugs.
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ROZEM- I only have a year or two on you I think. I was put on tamoxifen post chemo and after about 18 months, started having weird period type spotting. (Tmi..sorry) a hormone panel showed that I needed to stay on tamoxifen and not switch to an AI just yet. Periods never really returned and I opted against zoladex etc. I'm heading into my 5th year of tam and the plan currently is to just stay on it
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Karen Congratulations for the end of chemo. I would think the rad Dr, would make the decision about the rads and now it sounds like others have had the same thing.
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Thank you all for the congrats. I feel like I've accomplished something, managed to not get very sick. Lots of my chemo friends at the infusion room said I looked good. Just embarrassed myself by snoring through Benadryl! Can't wait for the chemo side effects (hair, fingernails, weepy eyes) to get back to normal. Onc said it could take several weeks or even months for some of them to completely resolve, but at least now I'm on that road!
My surgeon also thought redness was caused by surgery exacerbated by chemo. This morning (chemo yesterday) it is much redder and redness has crept to the top and up my chest a bit. Sounds like she was right. Still kind of worrisome, though. Gonna touch base with surgeon again just to keep her informed. And see what the radiation doc thinks too tomorrow.
Thanks again everyone for the congrats.
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shasta10 -- I lurk here since I'm not triple positive, but have had some changes in my echo (ejection fraction). I'm wondering how low yours was when they stopped the herceptin? I'm just starting my year on herceptin (couldn't find a 'herceptin only' board). TIA
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Bethcon,
Xoxoxo.... Every day I read about real progress in treating this dreadful disease. Fortunately for us triple positives much of it in the her2 positive disease.
best wishes to you and your family as you readjust your sails. with this disease we must always be ready.. And willing... to do that.
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Hi 6cats
My base line in Feb 2013 was 63%. In May dropped slightly. In July 2013 35%. The last one in Aug I'm up slighty to 45%. Not enough to resume Herceptin, but my heart ef is better.
No symptoms like swelling or shortness of breath. Age 61, I'm petite 5' and weight 99-102lbs, no cholesterol, low blood pressure. so no there's no history for heart problems. It was directly related to Herceptin. They put me on Coreg a beta blocker and Lisinopril- an ACE inhibitor.
The ef can drop, but it depends on the baseline.
Hope this helps and you don't have the same problem
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Thanks for your in put everyone
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There is actually something called Red Breast Syndrome that can happen during reconstruction. I had the red breast but it took them two months to get it to finally culture positive for pseudomonas. Didn't have the traditional symptoms so Ps was doing a lot of research on red breast syndrome until the ultimate diagnosis.
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Fluffqueen, thanks for that bit of info. Gonna research that and see how it may fit my situation.
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Red breast syndrome seems to be more related to reconstruction as you said, and which I didn't have, but I'll mention it to rads onc tomorrow.
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Thanks Shasta10 -- My baseline pre-chemo was 62%. It dropped to 53% after my Adriamycin. The good news is that after 8 weekly herceptin tx it has stayed at 53%. So they are monitoring me every three months and hopefully the herceptin won't cause any additional problems.
I do have shortness of breath, very slight fluid retention and am being treated for high blood pressure; I am a little overweight (BMI 28) and have a family history of heart issues. But the cardiologist has assured me I won't keel over dead! and that I just need to be watched. Thanks for the info.
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6cats - Here is the info from Herceptin's site for when it should be discontinued for a drop in ejection fraction:
"Assess left ventricular ejection fraction (LVEF) prior to initiation of Herceptin and at regular intervals during treatment. Withhold Herceptin dosing for at least 4 weeks for either of the following:
- >16% decrease in LVEF from pre-treatment values.
-LVEF below institutional limits of normal, and 10% absolute decrease in LVEF from pre-treatment values.Herceptin may be resumed if within 4-8 weeks the LVEF returns to normal limits and the absolute decrease from baseline is <15%. Permanently discontinue Herceptin for a persistent >8 week LVEF decline, or for a suspension of Herceptin dosing on more than 3 occasions for cardiomyopathy."
Most oncs count 50 as the cut-off for below institutional limits for ejection fraction. Your shortness of breath can come from a drop in hemoglobin caused by chemo action on your red cells, and the fluid retention can be caused by chemo, independent of the Herceptin. Many of us had this experience - it usually resolves within a couple of months PFC but keep an eye on it.
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