Calling all TNs
Comments
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"Siesta Time" on the Sassafras River. Shot from the stern of our little cruising sailboat. Bald eagles soaring overhead... this was a great day. Both pups were still sleeping their sailing & float time off today. Brady likes to eat the seaweed as it floats by. Gives new meaning to "dog-tired"...
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Very Cute!!
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Sugar: I love that book. I follow most of what he advises, I just like the Perricone Diet because it tells me what to eat, how often and I don't have to think about it. I kind of mix it up though. BTW: My hair now looks like yours, as I dyed it back to my natural color. It's so dry though it looks like animal fur, not hair at all.
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Heidi, Are those French Bulldogs with you? If so, glad to see they have their life jackets. Very cute.0
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Heidi, I just saw your post saying your dogs are Boston Terriers. I had wondered if they were Frenchies or Boston Terriers. You certainly have a cute black and white theme going.
I had my sixth Taxol yesterday, with six more to go. So far, except for not having as much energy and tiring more easily, I can pretty much lead a normal life on Taxol, including exercising and riding. My eyebrows are falling out, but the hair on my head is growing.
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mitymuffin- I worked out regularly and continued to drive my pair during chemo and radiation (albeit less frequently) . The fact that I was able to do most of my usual stuff (hubby took over barn chores though, as a precaution) might have been one of the reasons I overdid it after tx ended (in other-words, resumed my typical schedule of activities, plus more).
Just tuck that little tidbit of information away. I was dismayed by how easily I tired after tx ended. I *expected* that during tx but, despite reading about fatigue after tx, I think I fooled myself into believing it wouldn't be too much of a factor in my recovery (since I got through chemo and rads so easily).
As I mentioned earlier, I think pushing myself to regain my normal high-energy lifestyle was the reason I had that seizure. BTW, forgot to mention that 10 minutes before the seizure I inexplicably passed out (alone, so this wasn't witnessed) in my bathroom, hitting my head in the process---hard. I was out for about 10 minutes. For some reason the doctors all refused to "connect the dots" and view the blow to the head as a possible cause of the seizure that followed moments later (which my husband witnessed). Go figure.
Funny you should comment on the "black & white" theme. Silly as it sounds, that did affect my decision to get Bostons! We are Patriot fans and my father/son home-bred (and trained) pair are, of course, black & white. I wanted to do Carriage Dog classes at some of our local shows. Sadly, only one dog per turnout is the rule.
For now though, I am just happy to be alive and able to enjoy my horses on a pleasure basis-- no stress of competition.
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mitymuffin: You are half way there! Yay!!!
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Hello everyone I'm 34 and 3 months ago I found a lump in my breast. I never thought it'd be cancer. I waited to see if it went away after my menstral cycle and when it did not I did call and schedule and appointment with OBGYN. He tried to aspirate it in his office and failed. He recommended a mammo and ultrasound which was done the next day. They told me right there that the news was bad and I needed a core needle biopsy. Following the biopsy it seemed as though the tumor started growing like mad; it actually had a horn after that and was pretty painful. I decided to have a bilateral mastectomy which was done on 8/9/10 as the tissue in each breast is really, really dense and I was told that it'd be impossible to detect any lumps in the future while small. 4 out of 30 nodes were positive. I've had a PET Scan which shows possible metastatic lesions on my liver; two of them being 2 cm each. Thursday I go for a CT guided core needle biopsy of my liver to make an exact diagnosis. If it is not cancer than I will be starting the TAC regimen promptly. I'm not sure what I'll be doing if it is positive. Are there any others that have the triple negative cancer and are or possibly are stage IV?
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Dravastorm- wow, I am so sorry for what you have been through in the past three months and what you have yet to go through. It's a lot to get your head around.The gals on this thread are really supportive, but I'm not sure any are Stage 4 on this thread (others will chime in, I'm sure).
I noticed this is your first post. There are topics in BC.org strictly for Stage 4 BC, and I do believe some of those gals are also triple negative. I suggest you peruse the Stage 4 forums and hopefully you can find others there who share a similar diagnosis.
Please continue to post in this thread also, as you are able. We are all in this together, for better or for worse, and we care.
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Dravastorm, I saw recently that there was a TN who is a Possible stage IV over in the "Middle Aged Women 40-60-ish" forum. I'll go back and look her name up so you might communicate with her. Here is a heads up, when you are new to the boards you are limited to five posts in any twenty four hour period. If you use up those posts, you can always PM (Private message) anyone to ask specific questions. It can also save your posts for those general questions you'd like put out in the forum.
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Her screen name is cmkfloralbiz.
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Dravastorm: So sorry you are having to go through this. We are all here for you. Please keep us updated and let us know how you are doing. Hugs!
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Hi, all. Just cruising through the many posts over the past couple weeks and screeched to a halt when I saw a couple of you mention that you lost your eyelashes and eyebrows *after* you finished chemo and your hair started growing back.
Pardon my French, but ... WTF???
I have not heard of this before. Is this a TC, TAC or AC plus Taxol thing? I'm on TC x 6 and my last treatment is coming up in two weeks. I've lost hair in a lot of places, but not my eyelashes and eyebrows. I do have some stubble on my head, but it seems thin and it's not really growing very quickly. I'm so looking forward to getting all my hair back, and I'll feel so cheated to lose the best hair I still have after celebrating my end of chemo.
This leads to several questions. How long after your last chemo treatment does hair on your head start growing back? Is it the same time frame for the eyebrows and eyelashes, or does it take longer for them to grow back because they're the last to fall out? And did any of you use fake eyelashes?
Holli
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I lost eyelashes and eyebrows early on during AC, so I can't answer the timing thing. I tried filling in my eyelashes with the type that have three or so lashes separately. Does that make sense? The problem is that you have to glue them to real lashes, and as they fell out, there was nothing to connect them to. Eye liner helps, But it is funny, eyelashes and eyebrows seem to be the features that give us identity.
I remember sitting in one of my chemo tx's and the woman next to me was there for her very first treatment. She had beatiful dark eyebrows. I told her that if I had to go through this again, i would have my eyebrows tatooed before I started chemo. It would sure have sped up the daily getting ready for work. Trying to stencil brows on took skill and time.
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Hi, Drevastorm. My mother was diagnosed in July and told in Aug that its possibly Stage IV and is a TN. She is having 4 rounds of Taxotere & Carbo then surgery - just completed her first round week before last and today was the first treatment of round 2. I'm still pretty new at this but trying to learn as fast as I can! Please feel free to reach out to me. Good luck to you and I'm sending good thoughts and prayers your way.
Sharon
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Holly: I had the same as you 6 x TC and my lashes and brows grew in faster then my hair. If I hadn't shaved off the first inch of white "chemo hair" I would probably have more growth. I just trimmed and shaped my hair and the regrowth was 2 1/2" long--my last chemo was March 1st.
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Dravastorm - I have a friend who is triple negative and had a recurrence last year. She has mets on her sternum and possibly her liver (she not on the forum though). She is in the PARP trial. Have you read anything about the PARP trial???? It is specifically for triple negatives and they are only taking people with mets on the trial (phase 3). Anyway, I would definitely ask your onco if you can get into the trial if you have mets. If your onco doesn't have access to clinical trials, then I would look into it. Here is a link to the clinical trials website - I searched PARP Breast Cancer and got this: http://clinicaltrials.gov/ct2/results?term=PARP+breast+cancer
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MBJ, thank you for the encouragement.
Heidi, thank you for the warning about energy level. I can absolutely imagine myself doing just as you did, trying to go with the old full force energy and getting in trouble. Already, when I'm excited or feeling good, I tend to overestimate my energy reserves and end up coming to a screeching halt. I'm so sorry you blacked out, and it makes sense to me that a blow to the head would cause a seizure. Now take it easy..
Dravastorm, let us hear your results and keep posting.
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Dravastorm-Had my liver biopsy on Friday and find the results this coming Friday. Sounds like we are in the same boat. I am stage IIa right now but doc said that would change to 4 if results are positive and he would start me on a trial drug. probably the PARP . I hate to hear that you are going through all this so fast. Sending prayers that your results are B9.
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Welcome Dravastorm. Since you haven't had any chemo yet, you will likely get AC + something else as your 1st chemo. The cool thing is that you will get to see your liver lesions (if they are TNBC mets) literally melt away while you are treated. I also think that the PARP trial would be a good thing for you to consider. You *can* have more traditional chemo treatments 1st... some people like to *save* it for a recurrance. Just be sure to read the "exclusions" so that you don't get a drug now that will exclude you later.
{{{PauldingMom}}} Can't wait till Friday! Praying bor B9!!!!!
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Monisch: I had erythema nodosum when I was 21, the dermatologist determined that it was an allergic reaction to the birth control pill. I discontinued use and it went away on its own. However, that was 30 years ago. Just chiming in because I have never met or spoken to anyone who had it before. Good Luck with yours.
Regarding the Taxol/Carbo, I just completed 6 cycles on Aug 2nd. I lost my hair on days 13-17, then shaved it off, Eyebrows went completely around 4 or 5 cycle and lastly my eyelashes, had a few clingons (which I still put mascara on, lol) but now they are gone as well. On my hair I started getting the white sprouts somewhere around cycle 5, but it doesn't really seem to be growing other than the stray hairs that did not come out at all, I am trying to be patient but cannot wait to have my own hair back.
Ladies I am home from work today as I am going in tomorrow for Total Hysto, omenectomy and lymph node removal for prophylactic & definitive staging of my brca1 fallopian tube ca, wish me luck! Let's hope this time it is prophylactic (like the ooph and salpingo were supposed to be!).
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Everyone is different. I lost about half my eyelashes and my eyebrows thinned out but didn't loss them all. My hair started to come back after 3rd treatment. Just a little fuzz but something at least. I'm telling you, if it was cool, and normal to be bald I would be bald in a heartbeat. I loved the cool, clean feeling of my shiny dome.
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I lost hair on day 21 of AC, it started growing back as white fuzz around #6 of 12 taxol. I had a pretty thick head of hair, though very short, by 9 weeks PFC. Lost eyelashes and eyebrows while on taxol. Starting gowing in about 3-4 weeks PFC. On another subject, I lost my two little toenails about 12 weeks PFC, and a big toenail about amonth later. The SEs do linger!
PauldingMom: Hoping you get great news on Friday.
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Lynne3times, I hope the operations go smoothly and well. Keep posting.
PauldingMom, I'll be checking here on Friday for your results and my prayers are with you. BTW, I enjoy the feel of the air on my little bald head and like you, have not minded being bald.
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Paulding Mom..thinking of you! I bet you will have good news!
I lost my eyelashes and eyebrows after taxol also! It seemed like they grew back quickly though.
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Lisa - I won't be internet connected from Friday - Monday, but you will be in my thoughts as you get your biopsy results. We are off to Oregon for a wedding and I am planning to meet up with Joni (Eph...) from the July Jedi's. Hopefully she will have good news about you to pass on to me.
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Dravastorm: Ditto what kittycat said: I have a friend, also not on BCO, and she says she can already feel the PARP drugs working, She is TN with mets to spine and liver.
Lynn: You will be in my thoughts tomorrow and I hope everything goes well.
Pauldingmom: We are all here hoping for the best!
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Barbbasile. I had Neupegen shot for 7 days after my chemo with the first round. Did not like them at all! The new doctor gives me 1 shot of Neulasta which is equivalent to 10 doses of Neupogen at once. It is great!!!!Yes, you will feel achy for about a day , but that is it! The other benefit is that I bounce back very quick from my chemo. I hope that helps!
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By the way ladies, my hair is coming back! Next week will talk to the Surgeon about mastectomy and reconstruction. I don't know why I am freaking out about my decision. Everything will be ok, right? Have a great day ladies. 0
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MonikaV: I did chemo before MX, too. Go in with a list of questions and do research on BCO as to what you want. If you plan on doing implants, go to Implant Sizing 101 for help.
And, yes, you will be fine. My surgery was very successful (I had immediate/delayed recon). I just had my exchange to implants and in a fe weeks they will reconstruct my nipple. It's a long haul but I was ecstatic when the cancer was finally out of my body and I am thrilled that I am now so close to being "done" with recon.
Best of luck to you and PM me if you have any questions about reconstruction.
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