Taxotere, Carboplatin and Herceptin
Comments
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Thank you all for the support. I was bleeding quite a lot last night but knowing it was from superficial tears rather than something wrong in some inner organ somewhere was very reassuring. The nurse told me this - there is something called Replens which is good to use on the delicate tissues down there. I bought some and so far it does feel good. I have something called "Slippery Stuff" for sex (comes in a tube- the physical therapists office recommends and sells it to their patients for sexual use) and it is GREAT - nothing like KY or anything sticky. So she said to keep using that for sex (although no worries about that right now! I told DH I was putting yellow caution tape around me.) So that is my plan for now. She also said that wearing a pantiliner (b/c of the discharge from the Tamox) is irritating to the delicate tissues as well, so to put some Replens on the outside of me - the part that rubs against the pantiliner. So far, very little bleeding today so maybe I am starting to heal.
(And thank you for the admonishment about saying "TMI." I usually don't write stuff that is this personal and it is hard for me. But you are right- this is an anything-goes forum - we are here to help one another. I needed to be reminded of that.)
Hope everyone is doing ok. This is a tricky walk we are walking. Thanks again.0 -
hi ladies,
So glad you gals touched ont he sex topic, because I too been having issues, very dry and no sex drive at all...whats happening isnt it bad enough we have to deal with this cancer! My husband is soo supportive and he wont ask or bring it up, doesnt want to pressure me or make me feel obligated. Since my diag in Sept, we've made love a total of 3 times and that was with a tank top on because I dont want to be completely naked and have him touch my expanders by mistake! I know he wouldn't cause he's soo carefeul, its more about me! He tells me all the time I;m beautiful to him and he loves me no matter what, but I want to feel like my old me when we have sex and I just sont right now! UGGH!!!! Also on a more personal level, the handful of times we had sex, I havent been able to enjoy it at all and forget about orgasm! It's upsetting because before this all happened we had such and active and enjoyable sex life and now I just feel like I cant connect that way with my husband and I feel quilty that I dont have the desire to have intercourse, Hope the feeling comes back real soon! Thank you again for opening the door to this topic because although I have plenty of girlfriends I can discuss this with, I havent because they are not going through it soo they can only understand till a certain point so its comforting to know I can come here and vent.
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I hope I don't offend anyone but......... I
use a Martial aid. It helps me sooooo much get in the swing of things and it makes it really much more likely for a happy ending. Talk about your TMI huh? Yikees. I hope no one reports me and I get kicked out of here. I would miss you all terribly. 
. But it is a challenge to our new normal. Also my DH is much younger than me (cougar). His needs should not be completely ignored. It is my humble opinion that the more you have it the easier it gets. Or so it seems. We have to learn to love ourselves as we are. I doubt our husband would think they were perfect. I imagine myself young and fit (and my husband as Johnny Depp) (just kidding) Hey whatever works. Ok how about that.. this is the man who loves you and that is what its all about not some playboy fantasy. 
Better? I'm trying..... We have to keep our sense of humor right? 
My goal is to not take myself to seriously. Lets make our lives all they can be!!!! Or try anyway.X0
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Hi all, I just had to report in that my hair is now falling out. Today is day 16 so Friday will be 18... I had a huge clump come out in the shower this morning. and just major shedding all day long. I have my appt for Friday to get my hair shaved down. Oh well. It is just hair.
On the sex subject, it is double hard for us. I am going thru this plus have the newborn!
I have my 2 tx in one week.
Have a great night everyone!
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BOLD - I love your post. "Marital aid" - what a discreet phrase! I have to say that after dx (back in march/april), I had a really hard time with sex. My husband used a 'device' to help me as well, and while it wasn't the ultimate in romance, it did make things easier. With everything I was going through, if I had waited until i was in the mood, it would have been NEVER. But once started, it got easier. I don't know if we ladies will EVER recapture the carefree elements we had sexually, or in other areas as well but that doesn't mean it can't still be good. Maybe there is a 'new normal' for sex as well as for other parts of life.
I do remember at one point, I was uncomfortable about how my body looked and came up with the idea of blindfolding my husband. that way I could be more relaxed. Well, I suggested it and I have to admit
he LOVED the idea. And it made me feel less inhibited once in a while.I do think that time helps a lot. I also went to another thread where the women discussed this issue a while ago and one woman said "That is what pretty lingerie is for." I haven't gone and bought any yet, but that is an idea worth considering.
My true feeling is that the guys don't care about any of these changes nearly as much as WE do. But if lingerie or candlelight or a blindfold or a battery operated implement make US feel better and make it easier, then it's worth trying.
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I heard that the stuff on TV is good Ky something for her and him not sure no one has wanted to get near me accept one person and I divorced him almost 6 years ago. I hope I havent offended anyone on the site for some reason no one ever answers anything I say or comments me I guess its just me but I sure didnt mean to hurt anyone if I did and if I didnt I feel hurt at times just not being recognized at all its been a long lonely road being divorced and my family except my sons live away so I get kind of down and I am one of them who hasn't gotten the thick hair back I still have bald spots and its been since 8-08 since I ended chemo not sure if I will have to sell the house to get extensions to live a normal life I know boo ho but its a long road some days and most days I can just laugh it off not today
Maura
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Maura - I am so sorry you are having a sad time. I know that for me, I have felt occasionally that when I ask a question or post that no one answers it, but I think it is just the way the boards go sometimes. I cannot imagine ANYONE would want to hurt you (or anyone else) on here. I certainly never have and I am so sorry you are feeling this way. You are an important part of our TCH family - please believe that!
This whole thing is such a roller coaster, both in terms of the physical stuff, the emotional stuff, the medical stuff, the fear and worry, the hair stuff etc etc etc. If it isn't one thing, it is another. I can only IMAGINE that waiting this long for hair must really be a weight on you. I am so sorry for that.
Re the KY his and her stuff - my husband bought it and we tried it. But it does some weird 'fizzy' type thing when the two products mix. The packaging says it is an exciting sensation, but I felt like I was in a weird science experiment and didn't like it AT ALL. So that is my product review of the his/her KY gel. LOL.
Maura - please post that you are ok. I really hate the thought of this board making you sadder. We all struggle enough against sadness in other areas. I can't stand thinking that this place could be adding to your sadness.
With love,
Amy
ps. Bella Bean is adorable!
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enjoylife: Sorry that you have not felt acknowledged when you post. I understand the feelings, I think everyone is so trying to keep up on the posts that it is hard to reply to them all. Although I don't post often, I do read this thread and can relate to many of the women here and appreciate the input each bring. I am also alone and don't have someone special to go through this with and know how lonely this can be. I am sorry that you haven't gotten all your hair back as full as you thought it would be. I am just starting to get mine back, gray and black and coming in thick. It must be hard to not having it come in as you hoped it would. One more thing that you have to be reminded of with this bc journey. Know that there are people who care but like I said just hard to reply to all so for myself I just post occasionally because it is too hard and time consuming for me to keep up with replying to all. Hang in there! We all care!0
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enjoylife - sorry you are having such a hard time. This entire journey sucks. I hope we have not made you feel worse. I do not post to often either. I usually just read ..I need to make a better effort to respond every now and again.
I hope your day gets better. Sending good thoughts your way!
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Maura a BIG GROUP((((((((((((((((((((((HUG))))))))))))))))))))). You are a integral part of our journey. I guess every once in a while we need to be bit#ch slapped. You can go ahead and feel sorry for yourself. You deserve it. As long as you realize that you are... at the end of the day appreciated for your generous input. You can get those tiny hair pieces that they weave into your hair. They are not prohibitively expensive. Or you could try ovation. It has great post chemo results. So does regenicks. ( not sure of the spelling, but I never am. ) It a trip this cancer thing. Getting our needs met is rare. You look at someone like Allison just pretty much starting on this insipid journey with a new born. EYYYY CURUMBA. This just sucks. Even when your through the chemo the fear remains and an occasional bald spot and tons of other crappy SE. We can circle the wagons and be more supportive.
In deepest solidarity
Now back to sex! Just kidding
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Dearest Maura, You definitely belong with us! And I truly appreciate your writing to ask for acknowledgment. Good for you! Of course you could not possibly know how much I hate it that your hair hasn't grown back as expected or that I think of you often and pray that your hair will grow out fully because I never posted this to you. But, I do. In fact, I thought of you this weekend because I saw a hair growth product on television and wondered if it was a real deal or not. I wanted it to be real because the lady looked so very happy to have hair growth, but I dismissed the idea of sharing the information because I would hate to be the source of more disappointment. I agree with you about having days when you can muddle through it all and then there are other days when the only thing that will help are kind words. As the others have posted, we are all in this together and we definitely care about you.
Cheers!
Cloud
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I want to join in the discussion about sax. Oh brother, it has been so long since I've had any action I can't even remember how to spell it!
I asked my oncologist to check my hormone levels because I simply do not feel like a sexual being.
However, I really do like science experiments so maybe I should look into the His/Her KY stuff!
Cheers!
Cloud
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Sex? We can have sex? Not sure I remember how. Body image: Let's see, scars across both foobs, extra 25 pounds, big fat belly - not a good score there. Add to the the "Tamoxifen Desert", things are certainly not comfortable, much less enjoyable.
Fatigue: I think it is much more than fatigue, we have also got serious muscle atrophy. I don't think we realize how long it takes to get everything back. Also, other people seem to think that when the last tx is over - the struggle is over. That is not so at all. Time ladies, we need time.
Lisa
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Hi Girls....today is my birthday and I get to pull my drain from my surgery! I can't wait to be rid of it. My dh is going to do it after he gets off of work tonight. Then we are going out for dinner. I hope I don't 'leak' out all over the place! That would be a weird birthday present!!
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Happy birthday! I didn't have drains, but I did have a fair amount of leakage... easy to manage, however, with a "light days" sanitary pad or two placed strategically in the sports bra. They're thin, absorbent, and easily changed.
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Thanks Writer! That is a good idea....I didn't have leakage back in February when I had my mastectomy drain, but this drain is coming from my hip, from my flap surgery, and I have a feeling that there may be more leakage there. I will dig out my sanitary pads....I haven't used them since my period stopped right after chemo started.0
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Happy Bday CC. You look beautiful!!! Go party girl.. Cheers!!!!
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Lisa you are soo flippin funny!! I have atrophied . Baby steps. Of small strokes fell great oaks. No lisa that was not a sexual coment. Love ya!
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Just thought I would report that yesterday was 1 year cancer free for me--date of my mastectomy. I have one more Herceptin to go.
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Thank you all I had happy tears come from my eyes today at work my student worker said are you ok and I said yes happy tears you made me feel so welcomed. I actually think getting the hair cut every 5 weeks will help it seems to be helping and I have decided when the time comes I will check into it to see where have to go to have extensions put in just to have it fuller like I said betweeen the hair and the arm blowing up it makes it so its hard to forget Cancer but we will get through it I am hoping summer I will have more hair or start shopping for a dealer who does extensions that stay in I dont want anything to do with a wig I want perement and nothing fancy just hair. Has anyone got hair loose down south I never got mine back there at all but I can LIVE without that and I am afraid I can live without sex dont want to but hopefully most men do it alot at my age 58 thank you for your sweet words all of you I feel so much better I will give Bella Bean a big kiss when i get home ha
I pray every night for all the laides dealing with this from the site and for some we have lost too and please god make it better for any grandbabies down the road...I feel like when we meet him he will have alot to tell us about this bad sickness and how he had nothing to do with it and I am usually pretty private about religion I am catholic italian we keep it hush hush ha Thank you again and again...
Maura
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Thank you all I had happy tears come from my eyes today at work my student worker said are you ok and I said yes happy tears you made me feel so welcomed. I actually think getting the hair cut every 5 weeks will help it seems to be helping and I have decided when the time comes I will check into it to see where have to go to have extensions put in just to have it fuller like I said betweeen the hair and the arm blowing up it makes it so its hard to forget Cancer but we will get through it I am hoping summer I will have more hair or start shopping for a dealer who does extensions that stay in I dont want anything to do with a wig I want perement and nothing fancy just hair. Has anyone got hair loose down south I never got mine back there at all but I can LIVE without that and I am afraid I can live without sex dont want to but hopefully most men do it alot at my age 58 thank you for your sweet words all of you I feel so much better I will give Bella Bean a big kiss when i get home ha
I pray every night for all the laides dealing with this from the site and for some we have lost too and please god make it better for any grandbabies down the road...I feel like when we meet him he will have alot to tell us about this bad sickness and how he had nothing to do with it and I am usually pretty private about religion I am catholic italian we keep it hush hush ha Thank you again and again...
Maura
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I actually googled how soon after treatment you can have sex without risking the transfer of body fluids yesterday. Don't like condoms at all. Found a fact sheet on an Aussie cancer web site suggesting at least 7 days. Well, that shouldn't bother us at all. I reckon once every 3 weeks just before treatment works for me. We've been using standard KY jelly (on him) since I went through menopause and it works fine.
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Has anyone ever noticed that their side effects are better or worse depending on the order the TCH are given, and whether the nurse took the full amount of time or shortened any of them? My last nurse changed the order of the drugs - H first, then T, then C and pushed the C in 30 minutes instead of an hour. My SE's are worse this time than the first two and came on sooner. I'm wondering if there could be a connection?
Thanks,
Lisa
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OH wow, did we get this SEX subject going or what ladies? I am soooo glad we did. it is a really important part of our lives. I will tell you that i have been sexless since April. partly due to the sorness i had for so many months after my flap surgery, but also the total lack of interest and as Lisa called it "tamoxofin desert"! That was perfect Lisa! lol
MAURA- We are all bonded and sisters in this together. if we miss something tha tyou need input on then retype it in BOLD! there are so many posts here i have a hard time catching up and i try to read once a day. I learn so very much from each and every one of you.
HAPPY BIRTHDAY CHRISTY!!!! Spoil yourself and enjoy being Drainless tonight! hate those pesky drains. You look gorgeous and it is all upward from here!
BOLD! i am a cougar too! My man is 10 years younger than me. Thank god for his young energy!, someone had to walk the dog, do the dishes, laundry and shopping while i was in treatment!
Okay so I went to get my bandage off my new nipple yesturday and was HORRIFIED! it is HUGE! like a cow udder! they tell me that it is large at first and shrinks over the next couple months but Come on! I went home in tears. They told me they can fix it later so now i am looking at yet ANOTHER recon surgery in the future, and here i thought i was done!
HAS anyone here had a nipple reconstructed? if so how is your experiance going?
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BY THE WAY- at THEREASTCANCERWEBSITE.com - they are taking signatures for a petition to "URGE YOUR SENATORS TO SUPPORT THE EARLY ACT"
this is to promote screening and awareness for women under 45. I see that so many of us here fall into that category and so many stories i have heard where younger women are not considered a significant risk and therefore are not diagnosed until much later stage of BC. I personally know 2 girlfriends in my life who were diagnosed at 32 and 37 and both were told it was nothing and left for 6 months until the got the correct diagnosis.
just wanted to pass this along to my fellow SISTERS!
God bless!
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Lisa: I thought I was the only one with "serious muscle atrophy". Prior to diagnosis, I had been working out with a personal trainer 3 days a week--had lost 20 lbs and gained muscle strength. I finished TCH in April and herceptin in November and am so FAT AND WEAK. I gained all the weight back; and when I bend down (bending knees), I can hardly get back up. I guess I'm going to have to take the plunge and get back to the gym. Do you think there's hope?0
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Trish - I had "skin preserving. modified masectomy" on both sides. This means I kept my nipples. However, I had ten year old implants that had to come out and be replaced, so in order to get my nipples in the right place, my incesion is strait across the middle, direclty under the nipple. With the "skin preserving" procedure, I have my nipples, but they are PERMANENT headlights. It can be 100 degrees and I have perky headlights! It can be a wardrobe issue!
Now back to SEX! If you go back about 100 pages in this thread, the suggested lubricant is Astroglide - Yes! If you use this on you AND him, and take things slow, sex is doable. I think that the more you "do it" the better it will be. Even with the Astroglide, I feel some tearing, It probably would not hurt to self lubricate on a daily basis.
On another note. I was apologizing to my housekeeper today because we have become such pigs. She listened to me for a few minutes and then said "Sit down and Shut up!" "I watched you puke, I saw you bald, I prayed for you when you were trying to live a normal life. You cannot expect to be back to normal in the blink of an eye, you are great, your are NOT THAT great, you are not Wonder Woman, enjoy life and say F..K it"
So my note to all my sisters: We have fought, we are not yet 100%, but we are winning. Anyone who thinks we are not bouncing back fast enough can kiss our arse!
LOVE TO YOU ALL!
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Nope, you're not the only one with the muscle atrophy. I feel really weak, especially in my thigh muscles (I wonder why there) I find the same thing-- that when I squat down, I can barely support my weight to get back up. I gained a little weight on chemo, but not enough to make that happen! Gee whiz. What else do we have to endure?
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Hi All,
I'm wondering about Astroglide and Replens - products mentiond above. Are these over the counter in a drug store or do you need a prescription? I live in CA and while I haven't looked extensively at that section I only see KY, and I am not so fond of that.
I think sex toys (or maritial aids) would be a good change from the usual. And I liked the idea of blindfolding DH, I bet he would think that was fun. You all have great suggestions!
Happy Birthday CCBaby!
Had my 2nd tx today - I am 1/3 through!
Sue
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I hope to get a new nipple next summer they are going to tatoo on I am doing it that way because no matter how she idd it she couldnt match mine they stick out and I didnt want to go through anohter surgery at almost 59 I am going to be happy to have it done in the office and not be knocked out. I sure hope someday god brings the love of my life into my life but I ahve a big suit case with baggage with the BC I had but I feel like he isnt worth it if he doesnt take me on so we will see and sit back and watch it ...I use to also have terrible muscle pain and bending down was awful then I started to keep track each week if it got easier to walk up and down the steps at work to the bathroom and it did get easy it is so nice to bend over and not feel pain and you will all get there. I feel like I have a friend who is a good friend but she never had cancer but everything else just about in her life and my guilty of life is better than hers so we can all be thankful for that. I am going to get off here now and bake some choclate chip cookies for my sons...we just got abuot 4 inches of snow and it should be 22 below in the morning but its all good because spring will come again one thing cancer has done for me is 90% of the time I love living and my life now just get the hair growing and I will be hot to go ha Love to all of you thank god your all here for eachother since we have to be here
Maura i do promise pictures I dont knwo how to load them I can do People soft and all kinds of software but my camera gives me heck of a time .....ha
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