Calling all TNs
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Laurajane. The neuropathy started after the 3rd taxol and has progressively gotten worse. I have done 7 so we shall see what next week holds. Day by day. Sorry about your boyfriend but I think it is a guy thing. My husband has not wanted to be intimate with but twice since lumpectomy in April. Makes me feel less than a woman and not very attractive. Its hard but I have to keep reminding myself that this is a hard situation for him to but needless to say it still makes me very angry. I have told him how I feel but it seems to go in one ear and out the other. I wish you the best with your situation, it is a hard one to be in.
Jen
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Stay strong LJ Perhaps he's just trying to deal with it all in his own way. If he truly loves you for who you are, he'll bounce back. (((((HUGS)))))
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I got my drains out today! Yippee! I was so blasted sick of them. I had surgery on the 8th, so now I see the surgeon on the 23rd for the 'official' post-op wrap-up and he tells me whether I go on to radiation next, or if I'm done until the prophy MX in 6 months.
The nurse practitioner that pulled the drains let me have a peek at the final path report, which confirmed the 2 nodes they took were negative and that they had gotten deep clean margins with the mastectomy. Also, the tumor had shrunk to 1.1 cm from the 4-4.5 cm it had been before chemo. But the nurse practitioner did say not to be surprised if they recommend radiation anyway, just because I'm TN and the original tumor was so big. Whatever. I can deal with it.
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I ordered sopies of my complete chart/record from my onc. yesterday. The file is about two and a half inches thick. It will be interesting to see what I get. I wouldn't mind if they jsut put it in pdf format and sent it on a disc. I have three other medical files from other drs. on my desk right now.
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LJ- I hear your despair. Do you have any family in the area that might be more supportive? It sounds like your bf may be getting ready to bail, or perhaps just having his own struggle with your illness.
Either way I know it is a sad & lonely time for you. Are there any support circles in your area that you might benefit from? I'm not one of those girly girl types, but being able to connect with someone in your area (to have lunch, see a movie, whatever) might provide you with some needed distraction and emotional support.
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JenC : Have you asked your doctor about taking glutamine to help aliviate the neuropathy symptoms? It worked for me ! I had no symptoms at all. Check it out.....
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MonikaV. No I did not know about the glutamine and he did not suggest anything. I will check with the PA when I see him on Friday and see what they say. Did you have the neuropathy bad?
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WOW is this board busy!! Gone for a couple of days not feeling well at all and have 4 pages to read!! ;-)
LJ - if he leaves then you know it was never meant to be - I know that's not what you want to hear and hopefully he is just dealing with it in his own way right now and needs his space. Tell him you love him and see what he does from there. I hope you have others in your area to show you that support and love you deserve. Join a support group if need be anything to help you out right now because it should be all about you right now!! ((HUGS))
It was so good to hear all of the wonderful news taking place on here!! Congrats to all and have a SE FREE and wonderful weekend.
Kelli
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HEY TNS ladies! I finished up my TX around May I was Diagnosed Sept 22 2009 so I am getting ready to celebrate my 1 YEAR AS A SURVIVOR DAY ! WHHOOOOO AND IT FEELS GREAT! I haven't started any reconstruction but. If your in treatment and I see I am pretty close to alot of your DX I will do my best to answer any questions. So many ladies on the site helped me.
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We'll celebrate with you, Tiffany.
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My Laurajane! Those drugs must be good! Ha Ha...I think I read your post in 5 seconds because I could tell you were talking that fast!...Glad things went well for you and I think I like your Dr. Cross and the radiologists at your hospital..they sound very optimistic for you!
Way to go Tiffany on your one year out! That is great! On Monday I will be celebrating 18 months..
Thursday there was a tornado in my town...it set down 2 miles from where I live...was 200 yards wide and was down for 12 miles...devastating...luckily no one was hurt....
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Juanita- I'm glad all is good for you now. If you have signifigant bone pain from the neulesta shot ask your doc about Zantac and Claritan 1/2 hour before shot . It really helped me i didn't need the pain pills. I know we are all different with SE's.I was also taking Zantac for heartburn. I hope all goes well for you.
jennc- Man, so sorry you have the neuropathy so bad. If it started after the third one would Taxotere have made a difference? I am also taking the L-Glutimine. Someone else recommended Vetamin B-6 and12. I bought the B-Complex but was told I shouldn't take it because of the addition of Vit. C in it. Someone else told me I should up my C intake. Ugh! What to do. I just hope you get your nerve back soon. Pun! I just got my 5th all I've noticed is occasionally I feel like someone is sticking a needle in my toes I also feel like there is something brushing against my left ankle. Could be my whacky brain which is totally beyond whacked at this point. So sorry about your husband. We as women, I think in general are so compassionate and caring. What happened to "do onto other as you want to be treated" ha! or something like that. I understand your anger and I'm so sorry you feel it. I hope he comes around.
Paldingmom- Thanks but I think that HHfHeidi has it right. He's on his way to bail. He's doing everything he can to be coldhearted and other things hoping I'll say "Adios. I guess I don't fit his nitch anymore. Anyone that knows me considers me to be a confident, strong and self reliant woman and I haven't been that lately. Time to get back to the person I was before I was diagnosed. I've never really been a needy person and like MBJ I've too have kind of been a gypsy as far as making new friends easy. I think this has all been a test. WE WILL ALL BE STRONG! Kad22- You are right what is mean't to be ??? Funny I went to the local support group three times now and no one else has been there. I had some great talks with the counselor though.
I should mention that my daughter and son are fabulous. I raised two caring souls and I am grateful to have them in my life. I feel limited as far as what I want to share with them because I don't want them to worry. My son's dad passed away 8 years ago and I know he really worries about loosing his mom too.
I think it's time for a vacation. how fun to just pretend like none of this is happening.
TiffanyF4- Congratulations. Cheers to you! I love hearing this. I'm so happy for you. Yeahhhh!!
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(((LauraJane))): Sorry you are having problems with the boyfriend. I have to say, my husband and my sex life went in the toilet after the diagnosis--it wasn't him it was me! I was so knocked flat by it all I don't think we had sex or kissed or anything for months. We tried a few times and it was so off, and then we finally started to get our groove back a few weeks after the MX/recon. We are still trying to get back but we haven't lost it, but it has not been easy at all. Sex was a big part of our life and so was kissing I just didn't feel attractive in the least and that's a big part of it for me. Know this: some of your friends are going to fall away, some people you hardly know will come forward and there isn't any right or wrong, but reach out--join support groups (I went to 3 or 4 for awhile). Cancer is difficult for you, for your loved ones for strangers--it is just really a scary thing. When I was still in college, I was in a band and my guitar player, a young 32 year old man, died of breast cancer. I couldn't be there for him when he went permanently in the hospital at the end. I was in finals, I was overwhelmed I cared so much for him, but he was dying, and I didn't know how to deal with it. We are only able to give what we can when we can and I am a much more compassionate and giving person now then I was then. I was just really scared. Reach out, you will find so many other people who are so worth the journey and the meeting just like the women on these boards.
Tiffany: Wow, CONGRATULATIONS!!! Funny, I just realized that I just missed my cancerversary of survival! Yay for us WE CAN DO IT!!!!
Titan: I am so glad you are okay! Kind of humbling a tornado, I imagine. Very frightening thing that I have only witnessed on television or in movies.
JenC: I still have a bit of neuropathy and I started taking glutamine after the fact. It should help!
Also, I didn't finish my very last Taxotere treatment, had an alergic reaction. My onc didn't even want to give me the extra 2 doses but the former BS insisted.Riley: Yay for you!!!! I had no node involvement and it does slightly improve the odds so they say. Love to hear good news. Hate the darned drains!
Jwaterlily: Glad things are finally started for you and you were able to take care of business without any hassles! Look Good Feel Better was fun--always love free makeup!
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Laurajane: I am sorry about your boyfriend. I hope other people will come into your life to help, if he can't. I am also going thru neo-adjuvent chemo and it is difficult always wondering about how much the tumor is shrinking. I have had a MRI, mammogram, and ultrasound recently and they each showed something a little different. I am seeing my surgeon tomorrow morning so we will see what she says.
Jwatrlily: Great that you got good news from your radiologist. I also use that cream on my port at least at hour before. It works good for me, makes the stick a lot less painful.
Riley702: Congrats on getting those drains out. Hope you continue to do well. They are telling me that if I get a MX, I will also do rads afterwards also.
TiffanyF4: Thanks for sharing and congrats to you!
MBJ: That's sad to hear about your college friend. I think it must be difficult for men with BC, they don't even get screened for it, do they? Hope you are doing well,
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This is weird--- I finished chemo Dec 2009 and really did not experience any major SEs. Lately, I've had tingling & numbness in my arms and legs, mostly at night when I am either reclining on the sofa watching TV or in bed. I'm not too much of a worrier (no more than the average cancer patient, I imagine) but this is a bit odd IMO. I'm not worried about what we typically worry about (mets) but I was wondering if anyone else has experienced this.
I hate my neurologist (the one I saw after my seizure) and would fire his ass except that he still holds power over my driver's license due to my state's yearly reevaluation (he has not checked the "no further treatment required" box on the DMV form). I have an appointment with my GP next week.
This is definitely not normal, but how concerned should I be? Anyone?
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Wow... no more alien speak after my post!
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PS- I am beginning to hate doctors. They hold too much power over my life, and I am loathe to add more "concerns" to my list of ailments. My "rap" sheet (history of conditions thanks, mostly, to BC) is too frickin' long as it is.
Pisses me off really, to read page after page of it. It's like a total reality check that flies in the face of my previous opinion of myself as a healthy dudette. Growing older is not for wimps, especially when one considers that, technically, I'm only at the halfway mark.
S*cks--- but still better than the alternative...
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heidi~ I am a world class worrier so I'm not the person to ask. HOWEVER, I've heard that the taxol SE's can show up later or change over time.
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laurajane - your post was very touching. I hope new (or old) friends step in.
I had an appointment with my primary care physician this morning who I had not seen in a few months. I started to cry before I even got to the appt. and could not stop the whole time. I could not wait to get out of there so I wouldn't cry anymore. She thinks I am depressed and gave me a prescription. I'll give it a try - beats crying.
Finally starting to feel human after my chemo. Food still does not taste good but not as bad as it had which is good since tomorrow I am going to a Bears game party at a bar. Maybe I'll be able to eat something. Go Bears!
Take care everyone!
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JennC: Because of the glutamine I never experienced the Neuropathy.
www.thedietchannel.com/Glutamine-Supplements-For-Peripheral-Neuropathy.htm
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MBJ- Congratulations on your cancerversary of survival. I thank-you for sharing such a personal situation. I think it is wonderful that both you and your husband are working on things. It sounds like your partnership is special I am so happy for you to have someone like that in your life. I'm so sorry about the loss of your friend in college. You are right. All of this has made me ,(I think?, when I am not being my narcissistic self, which is what someone told me recently) a much more compassionate person. I wonder if we all feel that way.
Lynn18- I hope your appt. with your surgeon went well.
Hhfheidi- Did you or are you taking supplements. I'm curious to know if they are after effects. I'm sorry it must be really scary for you. P.S. I kind of liked the alien post it made me smile every time I saw it, I visualized a montage of foul language expressing how you and many of us feel about this TNBC.
Swanny- Thanks! I almost always feel good after a really good cry, it is usually difficult for me to really let the tears roll, which is why it felt good the other day. Maybe it is good for you too! Here's hoping you have a great time at your party.
Teka- I'm so glad you are feeling better and had a good week.
Happy week-end everyone. I'm going to the Lotus World Music Festival and plan on dancing my arse off.
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Laurajane: That sounds like so much fun! Dance away!!!
hhfheidi: I didn't start having neuropathy until long after my chemo ended in 3/1/10. Try the glutamine and see if this doesn't help!!!
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Hi ladies, been away for a couple of days and so much to catch up on! Hugs to all those who are struggling through treatments or dealing with strange symptoms or loss of support from those we expect to be there. It's a long tunnel, but light at the end....
Just wanted to say how useful a little meltdown can be now and then with the docs. I got word that my "annual" follow-up mammogram couldn't be scheduled until mid-December, and the MRI would be sometime after that! I tried not to get stressed out - just left a heartfelt voicemail with my onc's nurse saying how frustrated I was because I had requested back in July that scan requisitions be put in process but was told I had to wait for my (postponed) onc appointment in September. Who knows why. Then I played the Trip Neg card, and said how concerned I was, as trip neg has a high risk of recurrence in first 3 years, and shouldn't I be followed more closely? Finally, the sympathy card: "I am doing everything I can to stay healthy, and I'm upset that the annual scans I'm supposed to have aren't happening on time." Result: a phone call back within 2 hours, saying my mammo was moved up to Oct. 8 (MRI to be soon after). Gotta be a squeaky wheel sometimes.
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RE: Neruopathy SE's. I've been pretty faithful about taking L-Glutamine three times a day, and Vit. B-6, and I'm having neropathy pain in my toes (I'm on weekly Taxol). Sometimes at night the toes hurt so bad I don't even want a sheet touching them. On the positive side, it gets better during the day, and at night an 8-hour Tylenol helps a lot. Acupuncture takes away the pain for about 36 hours, but is expensive. Electrolytes keep away leg and foot cramps at night.
Hhfheidi, We will find our way back to being "healthy dudettes." Maybe it will just take a little more time.
Luah, good for you!
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LJ: I just read your post and felt like chiming in. BF may or not be checking out, but you are not responsible for him. Also---you didn't bring any of this on yourself (I'm not a big Secret fan). You can tell BF what you need/want from him, then it's on him. The "I could use some lovin" issue came up here at home, too. I think the stress of the dx & tx & fear have got to play a role in all our close relationships. I'm so restless at night (the melatonin didn't help), we're in separate beds for the time being. The puppy doesn't snore!
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Dang, I'm tired! Just got in from feeding horses after a long day of watching my son play rugby.
I will look in to the glutamine supplement. I take Glucosamine/Chondroitin/MSN (for my joints), garlic, biotin, fish oil, Vit. D and multi vitamin. Stopped taking other stuff once the TNBC panic subsided.
laurajane- just for you....
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Heidi - thanks for posting the secret alien code....I like it too! lol
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Heidi..I'm glad the aliens are back! Seriously...a post from you without the aliens.well..it just isn't a Heidi post! G
Oh..this talk about sex..When I was taking chemo the nurse gave me a booklet on "Sex and Breast Cancer"..still haven't read it yet..thought it was a major example of an oxymoron! I still have it though...maybe I should read it..I don't know..I guess we are getting personal here so I can tell you..well..I feel bad for my poor DH...he is very understanding..and I KNOW that being intimate with your significant other is a way to prove that you are ALIVE...I know all this stuff..but there is this HUGE barrier in my mind..It's not my body..its my BRAIN...
On another note..I had my hair CUT yesterday..it is very short..and I love it..I just didn't like it long..ok..long was maybe 5 inches..now it is about 3 inches..it is just so damn curly..it was curly before but now it is super curly..I'm thinking about having it "relaxed"...I don't want it perfectly straight...I just want something other than CURLS! Most of the color was cut out too so now I'm back to being a brunette...I went a little crazy after chemo..went to blond highlights...they were fun!
LauraJane..sorry about that BF of yours..I hope he realizes what he has with you.
Swanny..I have fear of white coats also..I think my BP goes up every time I'm near a medical facility..
And Heidi..about the tingles..hmmm..I still get them on the bottom of my right foot..I told the onc and he was like..whatever..guess it wasn't important enough.
I have heard but don't have scientific back up around that chemo SE's can last up to 4 years..my fingernails have some ridges in them now..that happened one year ago...sometimes I lose a few eyelashes and eyebrows..all at once! Sometimes my legs hurt for a few days and then I'm fine...it's weird..
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This is not an Alien... it's my cat: "Butt"
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This is not an Alien. It's my cat: "Butt".
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