Calling all ladies in their 20's
Comments
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I couldn't agree more with you Kita! I feel like with every decision I try and make in my life I have to consider the cancer as well. My fiance was planning on proposing to me when I was diagnosed (and did shortly afterwards) and now we are trying to plan a wedding but it is so hard. I also often wonder how all the treatments will affect me and whether I will be able to have children after all of this is over.
WarriorPrincess - I hope that everything works out for you and that your cycle returns to normal
For treatment I started wuth the A/C like you WP and just had my first taxol two weeks ago. It was Ok but not as easy as everyone made it seem. I did not experience any nausea but i had intense leg cramping a couple days after treatment that kept me up all night long. I am not sure if it was a aprt of the neuropathy they described but it was horrible and I hope it doesnt happen this next round. My feet also went tingly/numb on and off but nothing to horrible. My hands were fine though. I also had joint.muscle pain but I think that was mostly from the neulasta shot.
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Hello ladies!
I wanted to make contact with this group. I didn't read through all the posts, but hopefully will catch up at some point. I'm 26 and was diagnosed in Dec 1, 2010. I'm single and have no children so am hoping and praying that everything returns to normal at the end of my treatments. I started chemo last Tuesday and experienced about every side effect under the sun, but am now feeling almost normal again.
For chemo, I'm receiving Taxotere, Cytoxan, and Adriamycin. I joined a clinical trial, but got in the group with the standard treatment, which my oncologist was very happy with. I'll post more when I have time, but wanted to touch base! I'm glad there is a group here with people my age but sad too that we all have to face this at our age.
Melanie
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hi melanie and hi all!
its been a while since i signed on and i hope you are all doing well. melanie, i was diagnosed 6 months ago on my 26th bday and i am single as well, so i know how you feel. this is a great place to be and you can also try young survivor coalition message board.
so i am feeling great and "back to normal." i had a change of heart though. i decided to get a bi lateral mast as prevenative surgery even though i've been cancer free since september. my surgery is in a week from thur. i'm scared about the recovery period. any tips?
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Shiramg
Welcome.. Recovery tips. Be prepared to take it easy. I was not ready at all for my first time trying to get out of bed at the hospital. I didn't realize how much muscle strength it requires to sit up. We ended up just inching the head of the bed up little by little until I could swing my feet over..and even then that was tough. But my brother was there to help support (literally) me and my nurse was a God send. I actually knew her..so it was a bit of a surprise for her to walk in the door.
At home, find a cozy recliner or some good pillows to prop up on for the next few weeks. Even though sitting upright and returning to work felt good, laying down was painful. Not to scare you, but the first night I tried to sleep in my bed...the pain crept up on me and I couldn't yell loud enough for my parents to hear me so I had to call the house from my cell phone for them to help me get out of bed. Everyone is different, but laying in bed, even with tons of pillows, was not confortable.
Lastly, stretch! My right arm didn't have the same amount of mobility as my left arm did and I could feel whats been described as "cording"...felt like a rubber band, under my arm pit. I was worried that it would never go away, but now 2 months out, my range of motion is just about equal in both arms. So, even when you don't want to, stretch.
I hope all this helps. Again, everyone is different, but this was my experience. And I'll say it again and again, recovering from port placement was worse. hehe
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I had a dr's appointment today and got some good news and not so good news. The good news is that I am able to push my last chemo back a couple days so I can attend a family function without severe leg cramping from the taxol and that they have an OR time held for my mastectomy on April 14. I am happy that the chemo is almost over but I am very nervous about the surgery. I hope I can wrap my head around it and feel more comfortable that I will be having it by the time it gets here. I am also nervouse because I am the MofH in my best friends wedding which is exactly 4 weeks after the surgery. For those of you who have already had the surgery - do you think I will be OK for the wedding??? I realize I won't be in tip top shape but I am hoping that I will be able to make it through the ceremony and atleast the dinner of the reception.
The bad news that I got (and really made me sad today) is that my dr. suggested that I will have to wait 2-3 years for recontruction and it totally threw me for a loop. I know it is different here in Canada but I just didn't think I would have to wait so long for reconstruction especially considering how young I am!!!! The dr. explained that they want to wait that long because of the big R word.......reoccurence.......and that threw me for a bigger loop. I just hate thinking that after all this treatment it may come sneaking back at anytime and at that point it will probably be Stage IV. I hate even thinking about the future - it just makes me cry and have a pity party (which I hate)!!
Sorry to vent
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Bimmer Great to hear you will be able to attend your favorite function without those pesky pains. Sorry to hear about your doctor's suggestion to wait for reconstruction. I had hoped with your chemo before you might be able to do your mastectomy with immediate reconstruction. Are you doing radiation? Other than recurrence (which is a risk for all of us reconstruction or not) what reasons did your doctor give you for waiting 2-3 years.
Surgery healing: Every body is different, but remember chemo does put your body into slow healing mode. I would say as soon as your drains come out you could be part of the wedding and do dinner, but probably won't be up to dancing or staying up late. I started physical therapy exactly 2 weeks after my surgery and 4 weeks after surgery I began my chemo. My actual incisions didn't heal for months (my plastic surgeon said that was due to chemo slowing my healing processes). I'd hate for you to miss out on being maid of honor but you also are going to need to be careful with your body. You may not be up to caring for all of the bride's needs that shortly after surgery and will probably not be up to hosting a bridal shower or bachelorette party. Remember you will be on pain meds and muscle relaxers for a couple weeks so won't be driving, and will probably have lifting limits. As long as your friend is a patient and caring bride that can put your needs first I'd say go ahead with it just knowing and allowing yourself not to be the "perfect" bridesmaid.
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Hello Lovely Ladies!
I picked up copies of my medical reports today. It turns out that I did have some of my muscle removed during my mastectomy... that would explain the obvious dent there! Other than continuing my radiation, I'm pretty "normal". No break downs lately
A few days ago I noticed some spotting Maybe that's a sign my periods are soon to return??? Who knew spotting could get me so excited?!?! LOL So, having muscle involvement puts me at a higher stage right? Or has that changed???
BIMMER I'm in Ottawa Ontario. It seems like the Canadian standard for reconstruction is 1 year after all treatments are done. It allows for better healing and better results. I was upset when I was first told that, but now after my surgery, I realize that it's probably better. Missing a boob isn't really that bad... the prothesis are so real like! But, I don't know if you'll be able to wear one 4 weeks after surgery??? The fitters are not supposed to fit you for a prothesis if you still have scabs. It must be a hygienic reason. But, keep ur fingers crossed! I did get mine after 5weeks
Other than that you should feel fine! I had good energy a couple days after surgery, and barely any pain. -
Oh and I forgot. Your arms may not be moving well after surgery and you will still be sore. Your dress will have to accomodate that. For about a month or two after surgery I lived in shirts I could button up or zip up because it was too difficult to put my arms into them (my arm where lymph nodes were removed didn't have much range of motion). A dress that you can step into that is not too form fitting at the top would be a must, and you will need help dressing most likely. 4 weeks post surgery I was still wearing a post-mastectomy tank that was not very flattering, but it was the only thing that didn't hurt to have on that still gave me the support I needed. You also need to think about if you want to be standing in front of a crowd not looking your best and feeling pretty crummy. Even little things like having a visitor for a half hour made me pretty tired after a mastectomy. I had TE's in place too so not sure if that makes a difference. Good luck in your decision, BC makes everything tougher...I wish we didn't have to think so hard about every little thing, and that BC didn't weave its way into our decisions.
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Oh yeah... one more thing about surgery... Ask for the nerve block. It sounds scary, but it's so worth it! They inject 5 vertabrae in the lower neck to numb you. It lasts a long time! Like 1-2 weeks! So I didn't need pain meds and I was able to do my arm stretches the day after surgery. 2 weeks (or less) after surgery, I was able to lift up both arms to put on regular tshirts and sport bras.
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The nerve block is similar to an epideral...
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Melanie - glad you found us! I don't post very often, but I read the posts from my phone all the time, and I can honestly say that it's been a lifesaver. It's great to be able to relate with people going through the same thing!
bimmer2011 - 2 years for recon? I'd be asking for a second opinion. I'm in Canada too (Saskatchewan) and have a great surgeon. He said wait at least 6 months to a year, barring no unforseen complications. He did mention the "R" word too, but it seemed more in the context of "redo" if they missed any of the tumor in the first place. So, truth be told, I felt the exact same as you - soo worried about surgery. After having done it (modified radical mastectomy) I can honestly say that it was the easiest out of all of the treatments! I had no nerve block, but I went home with napraxon (aleve is the same thing if you don't have a prescription.) I needed it for the first few days, but by the third day out of the hospital, I was fine. They sent me home with stretches to do. If they show you any, do them! I had full range of motion in less than a month. I think that not doing recon at the same time means that we heal with less pain too. From the ladies I talked to here, and the ones in another thread that I belong, it seems that those of us who chose to wait for recon ended up with less issues.
The incision had healed nicely too, but it wasn't healed completely when I started radiation, which led to a NASTY infection/abcess. It's still not healed, and it probably won't be for a few more months. I have home care nurses coming every other day to change the dressing/packing (as there is a big pocket under my skin where the infection was.) The incision opened about an inch. But...I don't care because I heard another "R" word yesterday...remission
I guess they don't advertise it unless you ask, but when I asked he looked at me surprised and said "yes, you are in remission! Radiation is just the insurance to help stop it from coming back!" Whew, was that nice to hear WarriorPrincess & Kita, I had a period last month! Never ever thought I'd be so excited! Exactly a year ago I can remember being really disappointed that I got my period as we were trying for a second child (I have a 2 1/2 year old now.) How fast things change. I haven't had one since, which makes me think that my system isn't exactly back to normal, but it's better than nothing! I asked the onc. in Dec, and he figured that I wouldn't get one until 7-8 months after finishing chemo (I had my last one in Oct.) When I went to the fertility specialist before I started chemo, she said that we have some protection anyway because of our age. The younger we are, the less likely chemo will damage our eggs.
Are any of you on Herceptin? My nose WON'T stop dripping! I can't even bend over to put my shoes on without it dripping on the floor. Just curious if anyone else had this.
Oh yeah, and I just lost my baby toenail...four months after finishing chemo. So I guess this crap stays in our system for awhile!
Sorry for the long post ladies. While I lack in numbers of posts, I make up for it with length
Keep smiling, Jenn
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Thanks Jenn!
I don't mind your long post. It's interesting to read what everyone has gone through. I too, visited a fertility specialiast. I chose not to do anything and place my odds with God and my age. With everything he told me, I guessed I'll still have around 200,000 eggs. It only takes one! So I'm staying positive.
I chose to have a lumpectomy and axillary node dissection instead of a mastectomy. My surgeon gave me the choice. I had a signficant amount of tissue removed but she reconstructed while she was in there. I was so thankful, b/c I don't think that was really part of the procedure. My surgery was about 5 weeks ago and I still have some cording under my arm, like WarriorPriness was talking about. I need to get stretching! I was doing it religiously for awhile, until chemo knocked the socks off me last week.
I chose to enter a clinical trial. I'm not sure if everyone has heard about Avastin and how they want to take it off the market for breast cancer, but the trial included that drug. I however, did not get in that group. I was placed in the group with the standard treatment so I'm getting Taxotere, Cytoxan, and Adriamycin. It was a pretty rough few days but I feel much better today. Although, I got my lab results today and my WBCs are basically zero. So I'll be avoiding people for a few days. Anyone know a good movie I should watch?
Bimmer- I would suggest a second opinion as well. I didn't have a mastectomy, but if you aren't happy with their decision or fully confidant that it's right for you, it wouldn't hurt. It IS your life. If it were me, I would just want all the information before a decision was made.
Oh and on the period front. I of course was on mine at my first chemo appointment and it held on all 7 days. When I was first diagnosed, my doctor talked about my period and how it would stop when I went through chemo. Then he said, unless the shock of the diagnosis didn't stop it before. I told him...NOTHING...has ever stopped my period. I have been regular since day 1. I had it after surgery and before chemo. I wouldn't be surprised if it were stubborn enough to hang in there through chemo. In that case though, I wouldn't complain.
Did anyone try cryotherapy during chemo to protect their nails? I put ice packs on my fingers and toes at my first treatment and mine haven't changed in texture, color or anything yet. Although it's only been a week. I'm going to keep trying though.
I have lost all my toenails before. After I ran a marathon. I ran my first marathon on January 31, 2010 and started my first chemo on Feb 1 2011. It was so strange. But my goal is to run it again next year in 2012. I'd rather not lose my toenails again though. It's a little painful.
Ok, I've been long winded too. Have a great day!
Melanie
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Thanks for the surgery tips ladies! My best friend has been super supportive through all of this and isnt expecting me to be a super bridesmaid - realizing that I won't be 100%.
NannaBaby - is the nerve blocker put in while you are awake? I am desperately scared of needles but it sounds like it might help with getting the range of motionnn back in my arm quicker. I will ask my surgeon when we meet!
As for the reconstruction I am definitely going to push for sooner than 2 - 3 years. Many of the people I have discussed this timeline with say it is too long and that the average is 6 months to a year. Heck I think I could even handle 18 months!! The dr. who told me this timeline was not my main oncologist but fills in for him often. I am not really a fan of hers as I often leave her feeling sad and uneasy unlike my regular onc. So the next time I see my usual onc I am going to discuss it with him.
Also any of you ladies have problems with your arm swelling while getting neo-adjuvent chemo and before surgery? My onc is sending me early to a lymphodema specialist because I have had swelling in the arm on the side of tumour. I thought lymphodema didnt occur unitl after surgery.
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Hi BIMMER - The nerve block is done when awake... barely awake. They give you stuff to calm down. It's great stuff
I am more terrified of needles now than ever before, and I was FREAKING out about the nerve block, but it was a piece of cake I didn't have arm swelling during neo. Sorry to hear that. But, it means that the chemo is kicking cancers ass And it's killing off whatever cancer you have in your nodes. When I had my nodes removed, they were all matted together like mush because chemo destroyed the cancerous nodes - at least that's what my BS told me. They could only count 3 nodes because the others were so messed up.I wish you all the best ladies! And stay strong!
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HAPPY VALENTINES DAY LADIES!!
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Thanks! Happy Vday to you as well!
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Sorry been away (on the mend from my bmx) DOING AWSOME NOW
Nana- i am not sure if muscle invlovement bumps you up another stage or not. At my dx they knew the tumor was attached to my pectoral but they didnt stage me yet. they waited for all the other tests to come in... If muscle involvment meant stage 4 then they would have told me so...
Shiramg- For peace of mind doing a bmx is worth it. All the previous tips were right on. I know i posted on the feb mx board this and i didnt read it above. When they bring you things to drink (like hte juices with the foil lids) ask for them to be opened even if you're not gonna drink them right away. The motion used to pull the lids off was just too much for me the first few days.
Bimmer- I agree it sounds like 2-3 yrs is a bit much to wait for the recon...
BELATED VALNETINES TO ALL- HOPE Y'ALLS WAS FILLED WITH SWEET PEOPLE AND SWEET TREATS!
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Texasrose~ Glad to hear you are doing well
When did you have your surgery?Bimmer, Shiramg,~ What type of reconstruction are you choosing to have? Just wondering. I had a skin sparing bilateral in October and had immediate recon with DIEP flaps.
Melanie~What types of movies do you like?? I recently watched Eat Pray Love, and I loved it (although I think most people have already seen it)..
Mari
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Hi everybody... I am so happy to have come across this topic. I was diagnosed in Aug 2010 with stage IIIa IDC at the age of 28... it was and still is truly a shock... I did neoadjuvant chemo 6 cylcles of tac. I had a skin sparring mastectomy in jan 2011. I am currently on tamoxifen for about 3 weeks now and my oncologists wants me to do the zolodex injection as well.... I will consult with a rad onc in two weeks to decide on whether radiation will be required.... We are all fighting a battle that takes so much of courage and strength.... I feel like we are all great ladies and that we might not know what the reason is why we are put in this position, but i sure as hell no that we will all come out of this better people... Texas - I used to lurk on the chemo aug board, so know a bit bout u gals on their... just wanted to say hi and u are always in my prayers... god bless all you girls...
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Hi rae786~ Sorry you have to be here, but I'm glad you found us
Please let us know if you will need radiation. I am currently doing radiation have 7 more treatments to go Sounds like you have the hardest parts behind you!! Mari
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Mari- I had my surgery on the 31st of Jan
I also should start radiation soon- have my initial appointment next thurRae- I just saw your post over there! Thank you for keeping me in your prayers!
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Mari - yip im really praying that the worst is over... How has the rads been so far?
Texas - looks like we will be starting rads together... Partner in crime?
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Welsome RAE!
Good news y'all! My bone scan was clear!
10 more rads to go! No side effects yet, besides fatigue...
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Yay NannaBaby! When I did rads I didn't get really red & peely until the very last week, and it was so for that week and the week after, but then healed very quickly. Hopefully the same goes for you. I think our skin's young age is on our side as I shocked many nurses and rad onc & med. onc with how well I was healing.
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oops, meant to say "sore" not "so"
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Nannababy - good luck on the last two weeks of rads! I didn't really have any side effects except fatigue until the last week, and that is when S*** really hit the proverbial fan
I had oozing sores that developed into 2nd and 3rd degree burns...however I'm so incredibly fair and they told me that there was no way that I wouldn't burn. My burns took about three weeks to heal, but again it's mostly because of my ridiculously sensitive pale skin. Really. My dad used to jokingly call me his albino child. Albinos and radiation don't mix - go figure! Most ladies I know had the same experience as smile_on, and I'm sure you'll do great! Also, the fatigue is almost gone now, and I've only been done for a month, so I'm sure you'll bounce back too.Rae - welcome! Crappy way to meet, but that's life hey. Also, despite my bad experience with rads, I would totally recommend them. It was way easier than chemo for me (the worst part was that I had to drive 320km round trip every day to get them which really added to the fatigue.) It's six weeks of our lives, but the added benefit of insurance to help prevent it coming back was so worth it for me.
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Jen - Yip the rads will definitely be worth it and so has evry part of the treatments we have to endure...
do any of u ladies have kids? and how has ur diagnoses and treatment affected them? I have two. a boy 7 yrs old and a girl 3 yrs old. My son especially misses mummy just being mummy... being exciting energetic and always helpful... My daughter is quite funny... and she really makes me laugh a lot and see the brighter side of life...
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I have handled the Taxol pretty well. I haven't gotten nauseous or sick from it, just a little weak and tired the day after. I did get other side effects like hair loss, water eyes, and color change of my nails. I'm also on Avastin so I don't know which medicine to contribute the side effects to. I'll start AC this coming week and I'm hoping it doesn't make me sick. I still part time and when I'm not working I'm a full time mommy so I don't have time to be sick..
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Hi Ladies,
Welcome Rae even though it is under unfortunate circumstances!
Nannababy congrats on the clear bonescan!!! That is very exciting news
I have an exciting week coming up myself - going to my second to last round of chemo as well as meeting with the surgeon to make sure he is comfortrable moving ahead with the surgery which is potentially booked for April 14th. Also have a radiation consult.
Just have a quick question for anyone who has had DD AC/T. I did the AC first and am just finishing up the Taxol. Did anyone or everyone lose their eyebrows and eyelashes? I am really hoping that this doesnt happen and am crossing my fingers (even though I dont think it will do to much). I have started to notice my eyebrows are thinning and just wondering if it is my imagination.
Hope everyone is staying strong and doing well!
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my eyebrows and lashes started thinning by 2nd weekly taxol. didn't lose them on AC though
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