Calling all TNs
Comments
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cc4npg, Well said!
MPJ, Bless your heart darling.
Heidi, thanks for the article.
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hi Ladies, haven't been here for a long time. very active forum !!! Hard to keep up with all the postings. Im finally thru with the Chemo part of my treatment and now in my 4th week of Radiation. So far im doing okay.. no skin irritation or anything... skin has gotten browner and have a bit of sensitivity in the area where they give the rads. Do any of you still have numb feet and hands after the chemo ??? anyone with ugly brown fingernails with strips of brown going across them ( my nails only the last three fingers of each hand )? how ,ong does it take before that all goes away ???? Oh by the way my Dog bite has finally healed.. took over 6 weeks !! the first 3 weeks i was at the hospital everyday to have bandages changed, after that 2x per week.
Now I just have a nasty scar on my hand..... once again please take care not to get any kind of animal bites while your on chemotherapy... it can get infected and that'll put you in the hospital like me. Was almost what would have killed me not the cancer.
hope yolu ladies have a wonderful day......
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MBJ - We have been having a few springlike weather here in California which kinda brought about a little bit happiness in my heart. Although I was going through a lot, it still brought some smile and a feeling of joy. I hope the spring which is just around the corner will bring happiness and joy to your heart, too. How are you feeling today?
Monisch -I was wondering how much time did you have in between your chemo and when you started radiation? Did your doc tell you how much is the maximum time before someone should start radiation? I have to do my genetic test which will take 3 weeks, plus I have already wasted 4 weeks just waiting for this and that. I am afraid my radiation is getting late.
I still have numbness in my feet and hands when I am asleep at night, trying to get up I have to first wake up these parts. My fingernails are still black/brown (finished chemo on 12/28/10). The thumbs are blackish, but the other fingers have brown lines going across at the edges.
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Woo hoo - I have a surgery date! March 10th. The countdown begins...I'm even starting to see hair back on my head!
Monisch - I have been lucky in that my nails only got a little brownish from the AC, and they are half grown out. I only have a smidge of numbness in my fingertips, still have three treatments to go though, so we'll see. I hope it grows out for you quickly!
My big problem right now is heartburn, ugh. I am taking Zantac, Prilosec, AND some kind of liquid, and it is still killing me. I am hoping that I don't get an ulcer from all this, and I'll be seeing a gasteroenterologist just to be sure, but man this sucks.
Lovelyface - oh, I would love to see a hint of spring. We just got hit with another 8 inches of snow last night. We have 2-3 feet on the ground now. Send some of that weather out my way!
MBJ - I hope today is a little brighter for you. I totally understand taking a break. Take care of yourself, everyone will be here when you are ready.
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MBJ: Hope today is good for you. Definitely take a break, but don't stay away forever. Pls pop in once in a while to say hi.
Lovelyface & Suze35: I'm worried about the neuropathy (will likely find out about my chemo regimen onMonday at onc appt.). I already have issues in both hands, esp. at night, from carpal tunnel and what I think is an impinged nerve in my right shoulder.Are any chemo drugs worse for causing this? Is it said to be permanent or do they say it will go away?
Of course, I trust my docs but it seems often we get the real, first-hand truth here, from each other, so I appreciate any info.
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Michelle - Taxol is the culprit for neuropathy. It happens more frequently with dose dense I believe. I am doing weekly Taxol, which is more gentle, and some studies suggest more effective for TN, although not by a big percentage. If you are worried, don't hesitate to talk with your doctor, maybe even suggest the weekly doses. Also, if it starts to get bad, they can switch you to Taxotere I think. It can be permanent
. Just another crappy risk we face when fighting this $@&!. I notice the numbness for a few days after treatment, then it resolves, so I think I'll get lucky I hope.0 -
Michelle:
I got instant neuropathy of all my fingers and all my toes after just the first Taxol. I saw the onc the next day and she was alarmed. I was on the DD 4 xs Taxol. By the time my second round was due, neuropathy was still the same - hadn't lessened or worsened at all. She didn't care - she switched me immediately to Taxotere for the remaining three doses. I was leery, but she did say taxotere is nasty, very strong, but is easier on the neuropathy. She was correct - it never worsened at all on the taxotere. took about 6 months after I was done for my fingers to come back (I would say about 98%) but my toes still feel like little cocktail franks sticking off my feet. Oh well - it could be worse I suppose, just hope all this crap works!! Good luck.
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Michelle, Suze35, LRM216 - My neuropathy is very strange, although another BC woman has told me she also has had a similar experience. In addition to my fingers and toes and the bottom of my feet, I also feel weird sensations in my back skin. I feel my clothes touching my back skin, which I never really used to feel before. It is as if the skin has become sensitive all over my back skin. This happened with dose dense Taxol, which I did every two weeks. My toe nails are all still black.
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Lovelyface:
Neuropathy can hit anyplace in your body where you have nerves - which is everywhere! I have read of gals that have had it in their faces, or chin - lips, etc. While mine was very annoying - I am thankful I just had it in fingers and toes, but I did occasionally feel other areas either "burning" or very sensitive to touch, ie. clothes rubbing, but it was transitory. They say most of it goes away completely eventually,but there are others many years out that still have it, but much lighter than during and immediately after chemo. I'm still hoping mine will go completely too - but who knows! My toe nails started to lift (big toes) and I had to see a podiatrist that cut them really, really low. They have come in much thicker than they ever were and are hard to clip with a toe nail clipper, but he says that once the grow completely out, they should be good as new. Hope it happens in this lifetime!
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MBJ I love your postings you are always so honest and true to yourself. Please know that I care. Sorry you are feeling blue. Since you live in Los Angeles I was thinking maybe one day we can go out for lunch. Since I am about one hour from you...what do you think about meeting half way? Please PM me if you are interested .
HEIDI thank you for the article, as usual very informative.
Titan how are you ?
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How many TN's undergo chemo after surgery? My oncologist recomended going six times for FEC and I was wondering if anyone has done this treatment. Did they find it effective and how were the side effects
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I'm thinking about getting a massage this weekend. I feel all jacked up these days. Everything feels sore and achey. I still have numb toes, but my legs are so sore. I didn't feel like this while on chemo. Maybe it's a nerve thing. I don't know!
MBJ - please come back and post here. I love your comments!
loving mother - I think most TN's have chemo, mine was after surgery.
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Anyone have any feedback on FEC?
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Kittycat, did you have chemo before surgery also? I am about to have my 6th chemo of Taxotere, Adriamycin, and cytoxin on Feb 8, and then surgery sometime the end of Feb or beginning of March (date not set yet), and the BS and Onc are talking about more chemo befor Rads. I am just so tired of Chemo.
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MBJ - Hope you are feeling a little more like yourself. You are an inspiration to me and feel comfortable saying for alot of the woman on here to. Please dont stay away to long and if you need to vent you know we are all here and you can pm me anytime. Huge hugs (((((((((((((((((()))))))))))))))))))))
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I had chemo after surgery, TC. I would say that it wasn't fun but doable. 4 tx every 21 days.
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kelben: How are you? I've been thinking of you since you posted about the seroma. I hope everything's ok.
Titan: You've been quiet too....I hope you're out enjoying life! Thinking of you too...and all the TNs I've come to know & love on this thread.
Get my BRCA results in a couple of hours. Fingers crossed.
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I'm here Michelle. I am waiting for my biopsy on Thursday, next week. I am very afraid they are going to dx non-Hogkins lymphoma. Of course I have no idea, but the longer we wait on these tests, the more time we have to look things up. Who ever thought you could get cancer from chemo....not me thats for sure. The genetic people at the cancer centre is going to do the BRCA test. Good luck Michelle, I'll be thinking about you too.
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Awwh Kelben I have been thinking and praying for you constantly. Things will work out!
Also about the temps I am low as well 94.3. Wired what's the explanation for this?? Although I was cold before cancer especially at work. I always keep a small heater under my desk. Is anyone else working while going through treatments?
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Michelle- wishing your results are negative! I think waiting is worse than actually finding out the results!
Kelben- praying and sending you good thoughts as well!
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Kelben: Waiting is a bit$h, for sure, but PLEASE try not to torture yourself with thinking of what it may or could be. I know only too well that it's almost impossible not to do that to ourselves, but go as easy on yourself as possible and eat lots of ativan or xanax instead! We are all with you - right there beside you.
Linda
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MBJ: I follow and lurk you. LOL I value your advice.
I know how you FEEL. Hubby and me are going through a pretty rough patch right now so I cry A LOT over this and having cancer. I am crying while typing this. I am just scared and I just want someone to tell me everything is going to be okay, but they can't.
Sorry you guys for ranting when I am suppose to be uplifting.
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Loving_mother - I am having my chemo before surgery, and most likely won't need more, but it is still possible depending on my surgical outcome. Most TNs get chemo either befor or after. I haven't heard much about FEC, hopefully someone has.
Kittycat - a massage sounds heavenly! Even if it isn't a cure all, it certainly won't hurt!
Michelle - keeping my fingers crossed that you are negative!
Kelben - thinking of you...it sucks to even think that what have to do NOW may come back to bite us in the butt later - but I will keep another pair of fingers crossed that everything works out for you. Stay off the Google!!
Fighter - don't feel bad for ranting! You have so much on your emotional plate, keeping it in only makes it worse. I'm sorry to hear you and your DH are struggling right now. Even though DH and I are pretty solid, we have scheduled therapy for us because we just seem to be ripping at the seams sometimes. On top of this awful diagnosis, well...rant away!
I'm feeling physically better this week, which I hope means no Neupogen shots next week.
Question - when did you guys have your port removed? I am leaving it in after my first surgery in case I need more chemo, but didn't know if I should leave it there until my reconstruction a few months down the line? Is it easy to remove? I had a fairly bad placement, and don't want to go through that again in terms of removal.0 -
Fighter- So sorry to hear you are having a rough time. I cry alot over the whole cancer situation too. I am done with chemo and should be feeling better right? Wrong- I still have an infection from my port (have been on antibiotics since 1-6), I have an open incision (very painful) where the port was taken out, and I woke up this morning to find myself covered in a rash. I feel like- why can't I get a break? Haven't I endured enough? There are just some days that we are not going to be positive or uplifting and we are entitled! Don't ever apologize for having a bad day, week or whatever!! The fear of the unknown gets to us all.
{{{{{{Hugs}}}}}}
Tiffany
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Hi everyone--still in quite a bit of a funk, so much so that I just cried some more after reading all of your wonderful posts. Just need to take a break for a few days, so that I am not just moping around on here.
Michelle: Get L-Glutamine 1000 mg to try and prevent neuropathy while undergoing chemo. I have it really bad in my hands and it wakes me up every night now and makes me walk like I am 90.
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Just jumping in here. There are so many pages to this thread, it is hard to follow. Dx June 2010just shy of 50th b-day, TNBC and IBC. As if having one kind wasn't bad enough! Started off ok on carbo, taxol, avastin, but then that course ended with things getting bigger again, but nothing new showing up. Off to dana farber and their IBC dept. Did only 3 of the 4 prescribed DD A/C. Breast swelled and then I got a small spot on rib while on AC. Now on xeloda pills, zometa, and lexmpra. Tomorrow I am going to funeral of friend who just succumbed to BC (she was ER+). She was 44 and leaves husband and daughters aged 11 and 13. I don't usually wear a wig, so with my caps I will stand out as the 'other' BC cancer patient there. Not looking forward to it.
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MBJ - I am so happy to see you here right now. I have a big bright smile on my face. Go ahead girl, take your break if you need to. Now I know that we will eventually have you back here. Everyone loves you so much, I hope you know. Take a break, have some sunshine today, get some air, have an attitude, vent it all out, cry as loud as you can, whatever it takes to get out of this mood.
Can you believe I am waiting for my mom to leave for New Zealand tomorrow, and then I plan to have a big huge loud cry when I am alone in the house? I have been keeping it all inside. My mom is 80, she came to visit me when she heard the news and now she has to leave. Not sure if I will ever see her again. She feels the same way, she is very sad to leave her cancer daughter behind and go back. It is the saddest thing ever to see a tiny little lost woman sitting in a transportation chair going to the airport, going alone, leaving her child behind. How can I not cry? Will I live to see my mother again? Will she be able to fly to me again? Will I ever be able to fly back to New Zealand in the future? What if? what if?
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MBJ: Take a break... we'll look for your return and will be thinking of you! Go out to the beach if it's a pretty day for me!! I don't spend a lot of time on the forum because I want to make sure to live the wonderful life I have, even with the not so wonderful things that happen sometimes! But I come here daily just in case someone posts something I feel particularly drawn to responding... I come to help if I can... give support when needed... and ask for help or guidance when it's "my" turn.
Michelle: So hoping for negative results! Just keep in mind if you turn out positive, it's NOT the end of the world!!
Kelben: Remember the waiting is the worst. A friend of mine had that dx a few years ago, she must have been in her mid to upper 30's, and she's doing well. Praying for you.
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thanks for the good thoughts and prayers guys, I believe they really do help me. MBJ please don't apologize for the funk. You are in a room with all of us, and you know we have all been there. Take the time you need, but know we are always here for each other.
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MBJ - so nice to hear from you.
Kelben: Thinking of you and hoping for the best.
Lovelyface: OMG - you made me tear up. I am so sorry. Please have a good cry, get it all out. I am sure you will see your mother again you will just have to make it happen.
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