Calling all ladies in their 20's

Alicia-Rae

Hi ladies!

today I was my 17th round of radiation. I only have 13 more to go! The process is nothing compared to chemo for me and I am getting used to the routine. I drop the baby off at my parents then go to the hospital come pick the baby up and go home. Its my routine its easier that way. Saw the nurse today as I do every thursday and the skin under my armpit (because they are radiating my axila) is getting really sore. I put the glaxal cream they told me to get on it but its not really helping. Today they told me to use saline compresses. Is there anything else that might help? Other wise radiation is going well.

 My hair is growing back and thats very exciting. Texasrose thank you for reassuring me. I felt like they were never going to come back but I am learning to be patient I guess! All other hairs are growing back as well!! some of these do not please me lol. I just want my eyelashes back!!

 Also Mel I'm glad that your period came back! and a little jealous!! i am still waiting for mine to come back! I wish for it every day! haha. which I NEVER thought I would. Heres hoping!!

NannaBaby

Hello ladies!

I'm having a bad day today Yesterday I got some fabulous professional boudoir photos taken I had a blast getting preparred for the shoot... buying sexy lingerie, getting a spray tan etc. And had lots of fun during the shoot!

But today I feel sad... It feels like a just had a farewell memorial for my breasts! I am very sad today

  And I get my first infusion of taxotere tomorrow, so that is freaking me out too!

I am going to miss my breasts and my nipples How can I get over this! and how can I cheer up?

Diane

MelBell07

Diane,

So sorry to hear of your sadness. I can (and I'm sure everyone will agree) certainly empathize with you. I also took pictures before my surgery (although not professional! that would be really cool though) to try to "remember" the ladies.

Sad days do happen. But now, 6 months out of my surgery, they are far less. I only occasionally miss my old breasts. I just keep thinking about the reconstruction and how much "better" (hopefully!) they will look. We'll be the only ones in the nursing home with perky breasts!

The nipple loss was hard to take as well. BUT...the upside is that you don't have to worry about "peeking" through clothes. I have come to absolutely love this. I don't wear a bra either. And no one knows! Although I feel like I will get new nipples when the reconstruction phase starts, I did consider possibly not even getting any because it's pretty great not having them to worry about.

I don't think it's something that we will ever "get over"...but the only thing that got me going was just trying to look at the positive and focus your energy on that. You really can only go one day at a time. Sometimes it's one hour...sometimes it's one minute.

Good luck with your infusion tomorrow. I remember my first day was terrifying for me as well...but just think of it as the first steps toward a cancer-free body. You will do great! I am sure

This too shall pass. I'll be thinking of you. 

texasrose361

I really had thought about doing a glamour shots type of photo shoot to remember my before body, boobs, hair ect... but everything moved so quickly! I had the port placed not even 2 weeks after dx!

Diane, I also felt really sad, its an extreme that no one wants. But hey its will save our lives right!

I am on taxotere too and herceptin... My first tx went good, just a little nausea and if i remembered to keep taking the anti-nausea pills and eat small amounts of food it wanst even noticble. Good luck! You're in my prayers!

shiramg

just wanted to say hi and introduce myself.  i was diagnosed on my 26th bday which was less than 2 months ago.  i've been doing pretty well, had my lumpectomy, been trying to stay strong.

i am sort of breaking down now.  my onco score was 19 - so frustrating!  tomorrow i will consult an oncologist and i'm extremely nervous about chemo.  my surgeon gave me the impression that i wouldn't need it but i'm beginning to think otherwise.  i'm so stressed that i made yself sick (like i feel fluish).

 anyone have an onco of 19 and not get chemo?

Alicia-Rae

Hello Everyone,

i was reading about Diane's sad day and I hope that you are feeling better now. I also hope that your taxotere went well. My first one did not go so great. i hope you have a different experience. I have been having my own down DAYS lately. I cannot get out of this funk. It seems like the effects of the cancer and the treatments are all hitting me just now. My appearance wasn't such a big deal to me before. the loss of hair, the loss of eyelashes, the port and the scar. But now its just driving me crazy. I see women with just beautiful hair and now i feel anger and anxiety about how mine is not there, about how long it will take for it to grow back in and be long. My eyelashes have STILL not come back and  its driving me INSANE! As well my radiaiton is in its final stages and my skin is getting extremely painful and its quite obvious that I am getting something done because my skin is burnt up around my neck and my breasts are different skin colours! Mostly the pain is bothering me and I think i just got fed up the other day and just wanted to quit!! But I am almost done and I can get through this. I just feel a little sad sometimes.

I am participating in the run for the cure in Mississauga on October 3rd and I am pretty excited about it! I wonder if I should participate in the survivor march. am i considered a survivor yet?

 As well, all of you are in my prayers. We can get through this.

Alicia

MelBell07

Alicia,

I can totally relate to you, as I'm sure many here can. I am soooo anxious to get my hair and eyelashes back. I started working again once I started my rads, and being around women all day is killing my spirit a little bit. There are a couple young girls I work with who have gorgeous, long hair and I'm so jealous. They play with it in front of me, not on purpose I'm sure, but it still stings knowing I can't do that. I've only got 10 out of 35 rads down, so my skin is still doing pretty good, but I'm very nervous to see what happens.

Sometimes being "strong" and "positive" can be exhausting. You ARE almost done and you CAN get through it. And you are ABSOLUTELY a survivor!!!

Much love to everyone! 

TreadSoftly

Hi ladies,

NanaBaby - sorry you were feeling miserable recently, we all have our dark days going through treatment but they definitely get less frequent as treatment progresses.  Hope the first taxotere went ok, I had an allergic reaction to it the first time I got it.

Shiramg - welcome! Sorry I cant help you with the oncotype score.  I didnt have one done, I think my tumour size etc made it a bit of a 'no-brainer' that I would have chemo.  Good luck with your oncology appointment!

Alicia-Rae - you are 100% a survivor!! Good luck in the race!  My skin turned pink for the last 14 sessions of Rads but it returned to normal fairly quickly after treatment, and now 5 months later, you would never know I had rads, except for 3 tiny tattoos...

MelBell - sorry to hear you are having a hard time with the whole hair thing back at work. I remember feeling completely the same way - looking around at everyone else and having such 'hair envy'!!  You will soon have a short sexy do that will make those girls jealous!

MelBell07

Thanks Tread! Can't wait til that day happens! Looks like our diagnoses are very similar, so that makes me feel better

Alicia-Rae

MelBell

Thanks so much! that made me feel so much better. and i totally understand where you are coming from! Its extremely frustrating to see other women with such nice hair..or to be honest any hair at all, I just have little fuzzy pieces! I just get this quick little annoyed sad feeling and then i try to get over it. but it can be hard. I can totally understand how it would be hard to be around those girls at work and I hope it gets better.

I have five more rads left and my skin is getting pretty bad. The skin under my arm is peeling away and hurts, but the skin just on my collar bone is the worst right now. I can't sleep at night so my doctor told me to take T3s but I don't really want to. However, I am hoping my sad mood goes away soon because my husband and friends are throwing me a "end of treatment party" this weekend. Its gonna be fun. I'm going to wear a pink wig haha.

MelBell and TreadSoftly, thanks so much for making me feel better. And yes you're right I AM a survivor.. YAY! I'm going to walk in that march with my mum!

Alicia

NannaBaby

Hello Ladies,

 Sorry I haven't been chatty lately.  Taxotere has been kicking my ass! I had the infusion 10 days ago.  I am finally starting to feel better each day, but still not well   I had terrible body aches that kept me up at night, diarrhea for a week with killer cramps, oral thrush that won't go away, dehydration, red crusty eyes.... general ikyness!  I had to go the hospital twice... the first time they didn't know what the hell to do! I'm never going to that hospital again! Stupid idiots and the place was dirty as hell!  Then the second time, I had to get my blood work checked for neutropenia - which I have.  I hope my onc. can reduce my chemo, because I don't know if I can continue like this!

 I'll keep in touch and let you know if these SEs subside... until then, I'll probably be in bed.

shiramg

What kind of chemo are you getting?  this just made me really nervous, as I decided today that I'm getting 4 rounds of TC...

Alicia-Rae

NannyBaby,

I had ALL the same side effects! As well I also had neutropenia, and my onc did lessen my infusion and it got a bit better. Also they prescribed me stronger pain killers for the joint pain. it really worked. I hope he can do something better for you! once it lessens it will get better!

 Alicia

MelBell07

Alicia: Way to go! You are SO CLOSE to being done!!! Part-tay your butt off, you deserve it. The pink wig will look nice and sassy

Nanna: I was on Taxol, but had extreme joint and muscle pain. My bones ached, and the Neulasta shot made it worse. I told my docs and they prescribed me Vicodin, which really helped. They even offered to give me something stronger if it wasn't working, but I didn't need anything else. Dehydration was a problem for me too, basically because everything tasted shitty, esp water. I used those little Crystal Light packets that you can pour in water bottles, and it made it more bearable to drink. I also found sweet things tasted better in my mouth than any other flavor. Try eating some fruit (pineapple, apples, watermelon) because that has a lot of fluid in it and you get vitamins too. Really hoping you feel better soon.

Soooo why is it that my leg/underarm hair is coming back in full force, yet my head, brows and lashes are still spotty and bare?? Go figure! 

DancerMel28

shiramg - I had 4 rounds of TC and overall tolerated it well.  I had a reaction to it during infusion the first 3 times but once it was stopped and then restarted after more premeds I was fine.  THe last time they started it slowly and it worked a treat!  I had basically one week where I was pretty tired and just generally felt crap. And apart from some 'minor' things felt well enough to do stuff weeks 2 and 3. 

Everyone has different reactions to chemo it's just a matter of monitoring your side effects (and reporting them to your onc team) and taking whatever meds they give you to help.  Don't be scared of the negative things as lots of people tolerate TC very well. 

Oh and I"m 10 weeks out form last one and have hair covering most of my scalp - not enough for a style or anything but it's definitly coming back, and hair everywhere else is pretty much back to normal, except for the eyelashes and brows - didn't lose them during chemo but they just all fell out about 7-8 weeks after last chemo, very weird but they're on the way back now.

redninrah

countdown begins- Monday is the big day for me....

I was feeling a lot confident about the whole thing until a cold hit me 2 days ago. So im pumped on cold meds- what a friggin time to get a cold. 

NannaBaby

Hey! I've got positive news girls!Although I still feel mildly shitty... I can't stop feeling my boob! The TUMOR IS TOTALLY SHRINKING since before the Taxotere infusion! I am starting to think that all I'm going throught is starting to pay off :O)

NannaBaby

Oh Yeah! I've discovered that beer tastes good to me ! (Unlike everything else) YAY! Cheers

Mariposa109

Hello everyone!!

I am 27 years old and was diagnosed in February. I wish I had been given the option of chemo before surgery to shrink my tumor, but everything happened so quickly the surgeon told me I needed to have surgery ASAP and so I did (not knowing any better). Since my tumore was 4.5 cm (and I had to have a re-excision to get clear margins) I now have a scar that takes up half of my breast and a big concaved area. Anyway, I had 4 doses of AC which I didnt too well thru. I had sooo much nausea I was taking phenergan for it, but that would knock me out!! I have a 3 year old son and I felt like such a horrible mother because I couldnt do much with him. I like Mel, also had 4 doces of Taxol and had Horrible boin and muscle pain with that! (Not to scare anyone). I was given morphine for it which I didnt find very helpful, and they changed me to Naproxen. I had several moments I wanted to give up, but now that its all over with I am so glad I stuck to it! I've heard of people that have been able tp keep exercising normally thru it all and I am just amazed!

I finished my chemo July 15th, (still need radiation, tamoxifen for 5 years and surgery) and was supposed to start radiation late August. Now I want to get a double mastectomy (never want tot worry about going in for breast exams and what they are going to tell me!!) with flap reconstruction but I'm trying to find out if my insurance will cover it. Another thing is that I still have to have radiation, but I was hoping to have immediate reconstruction. The doctors that perform DIEP reconstruction have told me that I can do radatiation 8 weeks after flap reconstruction and that most women do fine with the flap being radiated... but the radiation therapist wants me to do the mastectomy, then radiation, then reconstruction (which I would have to wait 6 months for)... There are so many things to consider.!!! I wish things were more black and white!

My hair stated to grow back about a month and a half after chemo (just peach fuzz) and now I pretty much have all my eyebrows and some eyelashes. What I do is that I use eyeliner and people cant tell that I dont have eyelashes unless I tell them !!! I just got my period this past weekend! I was so tired of the hot flashes!! Does anyone know if you get those on Tamoxifen?

Nanna~ Congratulations on your good news!! I am so very happy for you! I think doing the pictures was really cool. I barely drank any water while I was doing chemo.. it was the most horrible thing in the world to me! lol... my husband would make me fruit shakes with milk (yummy) and if I HAD to have water, I would drink Iced tea and sometimes the crystal light packets added to the water, but never straight. I was told not to have any alcohol, so I didnt try beer! lol

I look forward to keeping in touch with my fellow younsters! lol

Red~ I hope everything went well for you today! Please let us know how you are doing.

Mel~ Don't worry about your hair, if its coming back everywhere at least  you know its coming back!!  all my body hair was back before my head and face as well!! hahaha.. Today was my first day out of the house with no hat, wig OR scarf!!! I was really afraid people would stare at me but I wore really big earrings that made me feel fabulous! and no one starred!!!! plus I got compliments on my earrings!!! I feel so proud of myself! LOL...

Shiramg~ I never had the onco test done. I lived in Texas when I was diagnosed, and was originally told that I was triple negative. I am now in North Carolina, and my Oncologist called the person who did my pathology in Texas and found out that I am actually slightly ER+! How crazy is that??? Thank god she called to get clarification! But don't be scared about the chemo.. it goes by faster than it seems, and the more positive thoughts and feelings you have, the better you are able to deal with side effects. I don't have any friends or family here and it was really difficult for me as I often felt very down, but I noticed when I had friends come visit, I didn't feel as bad physically or emotionally. I wish I would have found these forums sooner It would have really helped me! Just know we are always here for each other

MelBell07

Mariposa- Thanks so much!! I am SO looking forward to the "good" hair to come back! Now that I can't shave on the R side through radiation, I'm finding it annoying that it's finally growing back there. Plus I can't use any good deodorant, the Tom's of Maine has been sucking for me. I'm so glad to hear you got your period back!! I'm dying to get mine - never thought I'd hear myself say that. I also suffer from hot flashes, STILL. I wake up in the middle of the night several times because of them, and have night sweats too. I just met with my med onc last week, and will be starting Tamoxifen in 2 wks. She did tell me you get hot flashes with that as well - FABULOUS. Hoping it won't be as bad...I also got a bilat mast (prophylactic on the L side) so I wouldn't have to worry as much. Initially they thought I wouldn't need radiation, so they put in the tissue expanders. Now I have to wait the 6 months after rads to get reconstruction Bummer. I, too, wish things were more black and white, as I fell more into the gray category with radiation.

I'm also glad I've got you ladies to talk with. No one understands quite like us, right? Hope you're all doing as well as can be! 

NannaBaby

Hi Girls! 

I feel great today! Just thought I'd share some good news ) Next chemo is on the 28th.  Hopefully I feel this good all week!  And I'm starting to get my taste back! YEEESS! I made super yummy scalloped potatoes and ham for supper and it tasted awesome! Homemade cheesecake for dessert ;o)

Mariposa, welcome to the group!

Mariposa109

Mel, Thanks for the heads up on the Tamoxifen hot flashes!! can't wait! ;-) May I ask  you how the tissue expanders work? is it something inflated so it looks like you have breasts? Are they painful? My oncologist asked me to consider getting the mastectomy and having tissue expanders, but I dont really know much about them. I am in that gray category as well with radiation, but they belief I will benefit from it even with the mastectomy. I am using toms of main as well (the lemongrass scent) and thankfully its been working so far.. Sometimes I apply it twice during the day!! lol (just to make sure!)

I have been trying to find other "natural" products to use such as lotions and shampoos.. if anyone knows of anything thats good please let me know.. I like carol's daughter but I'm sure there are probably other products that are more natural...

~Mari

Mariposa109

Thank you Nanna! So glad to hear  you are doing well and getting your tates back! You're dinner sounds soooo delicious you just made me so hungry!!! (cheesecake is my favorite!! lol).

shiramg

hey girls,

did any of you have TC?  i'm trying to schedule my treatments around my friends schedules so that i can have help.  do you feel like crap right after or not til 48 hours after?  thoughts?

xo 

MelBell07

Mari - Sure! After the mast, they put in the expanders, under the pectoral muscle. It's sort've there to hold a spot where the implants will go. There are 2 ports under my skin my plastic surgeon would inject saline into every week or couple weeks to "expand" my breasts. So every time I'd go, they'd get bigger That was the cool part. Painful? Umm..maybe the first or second time I went it hurt a little bit, just because it was stretching the skin and stuff. But after that, I got more used to it and it didn't hurt as much at all. She over-expanded me on the R side, since that's where the radiation is aimed and I guess radiation shrinks the skin or something...so that's fantastic. Haven't had any problems with that yet though. I chose to do expanders because I didn't want to have to heal from another part of my body.

Nanna - Yay!! Sounds delicious! I LOVED getting my buds back into gear! I ate everything in sight just because I could finally taste it and it all tasted great!

Shira - I had Taxol and Cytoxan, not sure if that's the same? Or do you mean Taxotere? I had my infusions on Thursdays, and by Saturdays I was feeling crappy. Did fine on Friday, just tired. 

NannaBaby

Cyclophosphamide made me feel nauseated but nothing a pill couln't fix.  I had it together with adriamycin, so I'm not sure which one to blame for the fatigue!?  The fatigue lasted only 5-7 days, and it really wasn't that bad. I could take care of myself, cook, tidy up etc. 

The taxotere I'm on now, is hard on me.  It took 2 weeks before I started feel ok, although the first 3 days after the infusion I felt fine.  I had terrible aches and pain all over my body, diarrhea+++, cramps, oral thrush+++, and pink eye. 

The important thing to have is someone you can count on incase you need to go to the hospital.  Check your temperature at least twice a day.  Just this past week I realised how easy it is to catch an infection! Plus I got dehydrated, almost passed out.  My husband had to take me to the hospital.

 I remember seeing a thread for "cytoxan and taxotere"...maybe thoses ladies can offer a btter idea?

 Take Care,

shiramg

did you give yourself the neulesta shot?  any pre-chemo advice? i'm super nervous.

NannaBaby

shiramg - I am going to ask my onc for the neulasta shot for sure!  Pre chemo advice is to relax.  Getting the actual chemo infusion is no big deal. The battle is on! And you will do great! Make sure you have a nurse to contact in case side effects get uncomfortable. 

redninrah

i had chemo this morning- and no se at the moment............ only time will tell

Mariposa109

Mel, Thank you for explaining the expanders to me! I'm scared to get implants because I'm scared of how they will do with the radiated skin....so much to think about!

Shiramg, I had the nurses give me the Neulasta shot just because I HATE needles, so I would not be able to do it myself!! lol (I'm such a baby!) Also, like Nanna said, if you have any side effects, let them know immediately, because they have so much they can give you for almost anything! (except for fatige) No need to suffer needlesly When I had to go by myself I would take my Ipod, Nintendo Ds and sometimes a book... it's actually not bad while  you're getting infused. Don't be nervous!!!