Starting Chemo September 2015; join us!
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Does your MO Southern say NED because you haven't had sx yet on the tumor and she can't feel it anymore? Or is there a test we can ask for at the end of chemo or rads to know? I hear NED in stage IV forums and wonder how they know this as I haven't heard of any tests that can say no cancer in your body anymore.
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thanks everyone on the heart scan question.
Cajun, I qualify for a herceptin trial. The trial includes herceptin with a possible protien that works with our immune system to prevent HER cancer cells from coming back. It's a coin flip whether I get the immune protien or a placebo. The catch is only the drugs are covered, any scans or administering costs are out of pocket.
I'm a HER 1. We haven't decided. We are compiling a long list of questions.
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MnLisa, Carolina , Lila Claire. - yay! So close to saying goodbye to Taxol.
Cajun - so pretty! What a joy to hear the bell ring...9 times! Hoping your side effects are minimal this time.
Exercise- thanks for the helpful info on the ooph v hyst. I met with the surgeon and learned a lot. She will do the robotic laparoscopic procedure. Says uterus removal is a personal choice. Still considering but leaning toward removal. I hope your recovery continues to go well. Pesky drains! So nice to be rid of them.
Tessu - hope you are doing well. I appreciate the core exercises. I'm feeling inspired to get moving. I have my pet scan on Friday. They said not to do anything strenuous before so I will wait until after its done.
Artists - I'm 52 and was also premenopausal. Doc says AIs are better than tamoxifen and wants ovaries out. Will put me on Femara going forward. Must be post menopausal to go on AIs.
Southern - happy you are hooking up with Ned. He sounds wonderful!
I'm 4 weeks + pfc. Still having taste issues and fatigue but overall feeling well. Still fighting neuropathy but am told it may take months to clear. Hair growth is minimal and eyebrows/lashes are ghostlike. 😕
Does anyone pfc and still having mouth issues? I have a white tongue and gross mouth. Especially in the morning. How long does this last?
My best to everyone!
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Shelly, thanks for your info. What compelling evidence did your doc give you for having the ovaries out since you are also close to menopause, presumably, and other parts of your body produces estrogen too so it would only help some. Just throwing the book as hard as you can at it? Benefits outweigh the sx and possible extra SEs if there are any besides the hot flushes which it seems with get anyway with whatever med we take. Thanks!
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El Tigre: Please, what is the name of the Herceptin plus immune stimulating protein study? One of the younger oncologists already told me that I can't get that in Finland (like I couldn't get Perjetta during my chemo --- "we'll give you that when you get your mets" --- I kid you not, those exact words
). I'm wondering if I could contact the study group directly and beg...0 -
I guess I celebratd too soon: my hot flashes just stopped after my firs dose of FEC chemo. But guess what re-started a couple days ago. I guess they were just away on vacation. Oh well, the break was really nice while it lasted!
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tessu cute comic. I love auntie acid. So funny.
Shelly mouth issues went away after 2 weeks. Sorry you are still have icky mouth.
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Shelly, that sounds like thrush. Maybe give your doc a call?
Still feel yucky. Have decided to give myself permission to stay in bed this week when I can. I figure since my mom will be leaving soon and I'll be heading back to work, I need to rest while I can. The fentanyl is really knocking out the pain but I feel SO sick. Hard to say which is worse, but I can sleep through quease and not through bone breaking pain.
Tiger, what does it mean to be Her1?
Tessu, you can always contact them directly, but I think you would have to find a facility willing to get onboard to collect the data to send to the study.
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Hi all....sorry I've been MIA on this thread but I do read it every day...I love Auntie Acid too and just popped in to say: Tessu, at least it is hot flashes during winter, not summer! They weren't chemo induced but when I was going through menopause I had hot flashes on and off for several years (!) and yes, they'd come back after breaks, which drove me crazy. You have my sympathy and sending hugs!
Yay for NED, Southern! Love that guy...
Shelly, my mouth issues went away fairly quickly. If you haven't tried it yet, try gargling twice per day with baking soda and water. It really helped me.
Yay for all who have finished and hugs to those still slogging through! You've got this.
Octogirl
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Shopgal: good memory! I'm starting 6 weeks of rads on Monday.
Lila-Claire: my feet are more tingly than numb, and the riding I did this weekend was really flat and easy on car-free bike trails. I've ridden a little throughout chemo, and muscle/joint weakness and shortness of breath were my main issues. There is no flat in my neighborhood. I have to get off my bike and walk is occasionally.
Arista, doctors never say any of us are cured of cancer. It can come back decades later. NED is all we get. With Stage IV folks, NED is great, but the general feeling isn't if the cancer will return, but when. For the rest of us, it's an if. You are correct that Southern's complete response to chemo will be confirmed when she has surgery. That the tumor is no longer detectable is fabulous!
Southern: yay for NED!
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So happy for you Southern. I was so happy when my BS called to tell me that my cancer couldn't be seen anymore on the MRI. Just praying that surgery confirms it. So glad your Herceptin SEs are gone. I was worried about SEs since my Herceptin infusion is 3 days before my surgery.
Has anybody had a magnesium infusion? My labs were down yesterday so I have to go in tomorrow for 3 hours of magnesium. Maybe that's why I've had leg cramps. They did give me something for this cough so hopefully I'll get that under control so it doesn't interfere with surgery. I know it's crazy, but I'm paranoid about cancer showing back up before my surgery on the 29th. I want it done already!
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Cajun - HER 1 is when i have a some presence of the HER cells in my tumor but not enough to be classified as HER + so they would classify me as HER -.
Tessu -
The study is ML25749 it is the herception with the possibility of E75.
"Combination immunotherapy with Herceptin and the HER2 vaccine
E75 in low and intermediate HER2-expressing breast cancer patients
to prevent recurrence"
Yes we WANTED the herceptin but our insurance would not cover it, but with this we get it but still costs $$$. The study is being conducted at multiple facilities and we just happened to be at one of them. we have not signed the complete consent but did do the blood test necessary for it. The blood test was to see if I had certain proteins that are required for the study.
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ok ladies today is 6 weeks pic and here is my hair growth...southern I am finally brave enough to to post a pic..
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I'm jealous
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The Fuzz Awakens. A New Hair. Revenge of the Strands. Return of the Tresses. 6 weeks, eh? Looks great! And it gives me hope I might not be too weird looking by April 2 (got a wedding to attend). Two week countdown till I finish chemo, but the fuzz is trying to make a showing.
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thanks southern and ElTigre. The brows are about 3/4 of the way grown back. The rest is a brow pencil I got at a look good feel better workshop. The brows completely fell out 2 weeks after chemo. That is when the new growth started filling in. And my lashes were gone when I started taxol. As of today the bottom lashes are back and the top lashes are about 1/2 of their normal length. More like thick baby lashes.
My head was 100% completely bald at my final chemo 12/9 and was still shiny gleaming bald at my deportation on 12/21. Amazing how fast it grows back. I do feel like a speckled puppy with the grey. Too much at 45, but it's hair.
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DLcygnet cute fuzzies. I looked like that too at Christmas. I swear the 3000 mcg of biotin helped a lot.
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I just shaved my fuzzies Monday night. It seemed like everything had stopped growing for a couple of weeks, and given that some of you are having it fall out again after you finish chemo, I just shaved it and am letting it start over again. Hopefully without the odd patchiness and fuzzy friar head. I am LOVING your eyebrows, shopgal!!!
The girl we wanted to adopt has reached out to me, and apparently has changed her mind. She is begging to "come home forever" and I don't know why. The horrible thing is that I'm quite sure it's too late in terms of how long we are eligible, and now that my diagnosis is so obvious, we would be disqualified the moment they find out about the cancer. It's absolute hell.
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Oh I see. So happy for you Southern! Thanks for the info Scotland. That's always confused me.
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CarolinaAmy, that is just heartbreaking. I'm so sorry you've had to go through so much on top of this stupid cancer.
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I don't get this whole hair thing. Why did my brows decide to leave AFTER my final chemo. LOL. Two weeks final chemo and I have some hair on my scalp about an 3/4 inch long, but guess what? It's all gray! Yep the shorties are dark brown, but the long and plentiful are gray, gray, gray. And they stick up straight in the air. And to make matters worse, everyone seems to want to rub my head. My MO, the nurses, the radiologists. My brows are really weird because the middles are missing. Both ends are fine. Have I said lately that cancer sucks.
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Oh, how sad, Carolina. She sounds very confused. Let's pray that you can have peace in this situation and that God's love would comfort her.
How many of your doctors are doing tumor markers? If yes, when do they start?
I'm pretty sure I never lost 100% of my hair (hard to measure since I shaved it so early). Is that concerning? I thought Taxol was 100% hair loss. I guess I still could, after this 5th round.
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good question cajun? I am wondering that too
tumor markers
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My MO doesn't rely on tumor markers. She says they aren't always reliable so she doesn't use it. I've gone through 4 rounds AC and just had round #2 of 4 Taxotere yesterday. My hair has maintained at 1/3 left at buzz cut level.
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Heading out to first meeting with RO. Uuuuugh... I feel like I have the flu, a stomach bug, and I am bright red.
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CarolinaAmy...heartbreaking...;((
Fidget hair, lashes, and brows oh no! 👀
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Carolina - I'm so sorry about such a serious and devastating disappointment. I am praying you can find another way toward parenthood long-term. <<hugs>>
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HELLO ladies,
OMG I can't believe this happened to me. Every day I go on this site looking to see if anyone posts and I didn't see anything. So I thought everyone stopped posting. I had no idea, I was logged out. Damn chemo brain I hate it. I can't think, talk.
I started taking tamoxifen, it makes me anxious and hyper so I take it in the morning. I took it at night and couldn't sleep.
Hair is starting to kind of grow, not as fast as I would like it.
Has anyone changed their diet? Gone vegan? Anything drastic?
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Cajun - I was never told Taxol = 100% hair loss. My PA told me ages ago that hair growth would start during week 9 of Taxol - and it did. (Just peach fuzz, but still!) I never lost all my hair and those remaining stubbles seem to be growing a bit as well.
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Aga - I am on a Mediterranean diet. It's supposed to be good for cancer prevention. I've read about the alkaline diet as well. I'm not sure what diet is best but i can handle eating dark leafy green, fish, olives, and hummus
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