If you are not Stage IV but have questions, you may post here
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Hi there I am new to this and am hoping to find some advice or experience that would relate to my mother's diagnosis.
Mum (now aged 66) was diagnosed with Stage 3 HER2+ breast cancer in 2012, she had a mastectomy, chemo (Taxotere - Docetaxel), radiation therapy and Herceptin, and she has appeared to be cancer free until now. This week she has been diagnosed with metastatic cancer in the lungs, she is breathless and has lost her voice. She is going to have the fluid drained and then the oncologist has advised that the usual treatment would be another 6 rounds of the chemo (Taxotere - Docetaxel) and then Herceptin every 3 weeks for as long as she is alive, possibly in combination with Perjeta - though we live in New Zealand and that drug is currently not funded here.
My question is about the chemo drug Taxotere (Docetaxel). When she underwent the chemo therapy in 2012, the Taxotere had a profound affect on her short term memory - causing severe "chemo brain" (she can go and see a movie and if you ask her on leaving the cinema what it was about she may struggle to tell you), and it has never really improved since that time. I am concerned that if she has to undergo another round of this drug it will cause even more brain problems, leaving her unable to appreciate or enjoy the time that she has left.
Has anyone decided to fight against a metastatic cancer using JUST Herceptin and/or Perjeta and NOT done the chemo drug? If so what has been the experience/success? Or does anyone know anything about the Taxotere (Docetaxel) causing these memory issues and if there is an alternative chemo drug that they believe is better? Any insights much appreciated
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OK thanks I will try the Stage IV forum, appreciated.
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Jen, these threads might be helpful:
"HERCEPTIN and/or PERJETA Threads"
https://community.breastcancer.org/forum/8/topics/...
"mets to lung"
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Hey Jen, if you're still reading here, I just heard today that Perjeta has been approved by Medsafe in NZ now!
You can read about it on the Breast Cancer coalition website. So ask the oncologist again when it will be available. I hope your mum can get it soon!
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Hi Ladies,
I had a bone scan in Sept for lower pain on my ride side. Earlier this year i had a MRI of my lumbar which showed modic and disc dissection in L1 to L5. My bone scan was clear except for uptake in L4 which per the report states "most likely consistent" with MRI results. I have read many stories of women being told its just DDD and it was mets or a friend was told it was mets and then biopsy revealed DDD. I almost want another opinion - anyone else have a bone scan similar and it was nothing?
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Hi all,
It is exactly 3 years since diagnosis and surgery for me. Today I noticed a bit of soreness/pain under my arm and when my arm is stretched up I can feel a very very small lump. I am pretty sure it is scar tissue but what would be some signs for concern?
My original lump was unmistakable, I could feel it from every position. This feels different, very small and can only feel it slightly in certain positions. It is right in that space not quite in the underarm and just next where to implant is. I am worried that it's an infected lymph node?
Anyone have input or experience?
I don't want to rush to my doctor for nothing..
I have had a double mastectomy with reconstruction.
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Hi Steph. I know we all go to dark places when we find a lump of any sort. Your first instinct could well be right but I'd just watch it for a couple of weeks just to monitor if there are any changes. If nothing is different I'd leave it until you are next seeing your doc and then bring it to his/her attention.
Keeping everything crossed that it is just scar tissue.
Love n hugs. Chrissy
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Hi,
I am hoping someone can help me. I was dx'd with IDC ER- PR+HER2- (but treated as triple negative) Oct 2015. I had a CT scan in January 2016 before I started my chemo, and I had a 9mm nodule at the left lung apex, and a follow up was requested. I had the follow up this month (after my treatments were over: AC+T and rads). The new CT scan shows that the nodule grew 2 mm. My oncologist is now sending me for a PET scan, and he has sent me for a referral to a respirologist (lung specialist). From there I will see a surgeon since a biopsy will probably be necessary. I am freaking out. He said it could be bc lung mets, or lung cancer, or maybe nothing. Can anyone who has lung mets help me? How were your lungs mets found? Any advice or info is greatly appreciated.
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Citrinetiff - I can't tell you how lung mets are found, but I can tell you sometimes it isn't mets. It sounds like your oncologist is doing all the right things for you. I just had a CT scan & then a PET scan. I was in a panic & then in a funk. There were spots on my bones; they turned out to be just spots, not mets. & it seems the spots in my lungs are not worrying the doctors. (They are going to re-check them after some times passes.) I hope all your test results bring good news. If not, your medical team and the people on these boards with experience of mets will be able to help you cope. You are not alone.
Sending hugs & looking for those with more experience to answer your questions.
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I just found out that I have a new 1 cm nodule in my lung and they aren't even looking into it! See you in 5 months my onc said!?!?!??!
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Barbie, Citrinetiff, lung nodules are very very common. They just sit there. So long as they don't grow, they're not cancer. I have one that has been unchanged for 8 years. Infections can cause them, all sorts of things.
Lung mets are usually found either by accident, or because one has symptoms -- shortness of breath and the like. Accident is that they were doing a scan for something else.
Citrinetiff, that 2mm your nodule grew is really in theory. Each scan is different and is read differently. The nodule might have been slightly bigger to begin with. Your docs are doing all the right things. Could it be cancer? Yeah, maybe. But it could just as easily not be cancer. My [absolutely layman's] view is that if it were cancer, the chemo would have shrunk the nodule. Chemo does kill cancer cells.
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Thanks for the positive thoughts, everyone.
I have a copy of my CT and it states: Increased size of the left upper subpleural nodule, which also appears more irregular than before. Short-term radiological follow-up recommended.
I have an appointment tomorrow for a PET scan, so that should show more. From what I understand, lung nodules can grow very quickly, so perhaps this started growing once I finished chemo the beginning of July? I don't know. I know that I just want answers as quickly as possible.
Barbe, can't you ask your onc for a follow up CT or PET before that?
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My nodule is brand new since May. I have to get my pacemaker switched out for an MRI compliant one and then get an MRI. I have no idea how long it will take to get the switch done.
Keep us posted Citri
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I will, Barbe. I hope you get your MRI as quickly as possible.
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Citrinetiff, I am glad they are giving you a Pet scan. Hopefully it is a combo CT/Pet, it is the gold standard for determining . wishing you the best outcome. Keep us posted.
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Bevin, thank you. I will keep you posted.
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Bosum thanks for letting us know!!! Here's to tears not mets.
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Hello Everyone! I am concerned for my mom- she had breast cancer with lymph involvement 8 years ago - had mastectomy, chemo and radiation and then NED for 8 years. We have follow-ups with Onc every 6 months - we have an appointment coming up this Friday so my mom did a blood test and some of the results are 'off' - she also has congestive heart failure due to chemo therapy. My concern is are these numbers off due to her hear condition OR possible mets? We also have an appointment with Cardio tomorrow so will discuss with Cardio and with Onco on Friday. But my mind is very restless. Please shed some light if you can. I like to go prepared at all of the appointments.
LDH is 260 (normal is <180) - in May 2016 it was 207
RBC, Auto 3.83 (normal 4.2-5.4) - in May 2016 it was 4.6
Direct Bilirubin 0.2 (normal < or equal to 0.2) - in May 2016 it was 0.1
AST 31 (normal < or equal to 30)
ESR - 53 (normal 0.30)
Immature Reticulocytes 0.42 (Normal is 0.20-0.40)
Calcium 8.9 (normal is 8.5-10.7) in May 2016 it was 9.6
Ferritin 35 (normal is 20-400) in May 2016 it was 38 - in 2013 it was 67
Pleas HELP! Thank you!
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np, I don't see anything in the numbers you posted that are overly concerning. The test results to be most concerned about because they could portend a possible metastatic recurrence would be a CA27-29 (tumor markers) and a full liver panel including an AlkPhos. It that one is high, it can possibly be due to bone or liver mets. The ones you shared do not normally have anything to do with breast cancer, nor are they even high enough on my layman's opinion to be concerning for other serious issues, although some (like the calcium) probably should be watched, as it may relate to her decreased heart function. Also, if she is on any meds, they can often play a role. Hope this helps. Try not to worry.
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Thank you Deanna. My mom's Onc never runs CA 27-29 tests - has NEVER DONE IT. Her AlkPhos is 74 - In April 2016 it was 158 - then May 2016 123 and now down to 74 which is where her numbers have been all these years. She was little concerned last May when ldh was little elevated (at 207) and now it is even more so that is why I am concerned. All the test I posted were ordered by her Onc and NOT Cardio.
Thank you for your response - appreciate it.
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LDH and ESR show tissue inflammation and damage. That could relate to her heart problem. Is her ESR 53 or .53? Could be she has an infection or the result of one somewhere in her body. Does she have arthritis?
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Barbe - ESR is 53 (normal is 0 to 30) - sorry for the typo above
Yes she does have some arthritis and no infection.
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Hi everyone,
I have had parasthesias for over 2 months now (tingling like pins and needles) on the back right side of my head, back left side of my head and down my spine. Did anyone have this as one of their symptoms for Stage IV? Thanks in advance
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Thank you so much, Bosom Blues! I have had neck surgery and the doctors thought that the position of my head during radiation aggravated my nerves. Thanks for sharing your experience and calming my fears
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Hi Everyone, I'm about to start radiation and my MO ordered a bunch of labs. One was to check Vitamin D level...anyway...mine came back VERY VERY LOW at 9.7 when the normal range is 30 to 100. I googled this and read that low vitamin D is associated with metastatic breast cancer and/or poor prognosis. Now I'm wondering if it's only a matter of time before it metastasizes or maybe it already has but did not show up on the scans?!?!? I *hate* this disease.
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Hi Scared, deep breath lovely, having a very low vitamin D seemes to be very common in women with BC and it doesn't seem to matter if it's EBC or ABC (early or advanced). Please do try not to stress about it as you can raise your levels with a simple hight dosage supplement and it doesn't necessarily mean that your status has changed in any way.
Love n hugs. Chrissy
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Thanks again, BB! Since I have metal screws and a titanium plate in my neck now, I unfortunately can't see a chiropractor anymore. I used to love mine
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Thanks Chrissy!! I really appreciate your very kind words!!!
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Scared - I take 8000IU of vitamin D per day. Some people take 12000. It's a cheap supplement and cheap to have your Vitamin D levels tested periodically. You don't want them too high either. It is good to see a naturopath with cancer experience to advise and monitor on supplements.
>Z<
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Thanks Z! Do you, also, take Vit. K2 with this? I read on the internet that it helps absorption of Vit. D.....
Also, do you take Vit. D3? (I read it's more effective than D2 - so I'm guessing that Vit D3 is the one to get)
Thanks again! :-)
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