Sept 2012 chemo

Cocobean

Timbek, beautiful, heartbreaking, and truthful....thanks for sharing.

Melrosemelrose

Sending each of you lots of gentle virtual HUGS and positive healing and calming prayers, thoughts and energy!!!  I read every post here and remember every feeling and emotion I felt while I was in chemoland.   My heart aches for each of you when I read of the physical side effects and emotional ups and downs each of you feels.    I also see a group of very strong courageous women here taking control over their lives and health and doing this time in chemoland together as one and never leaving anyone behind. 

I am now 3 months PFC and it seems like eons ago that I was just beginning my chemo.  Yes..... there is life after chemo and one day you will feel good again and recover from all of this.  Meanwhile, please try to stay positive and remember that as everyday passes, you are one day closer to being finished with this part of your treatments and one more day on the road to recovery. 

As always, moving forward, and trying to find a little peace, a little calm and lots of good conversation, laughter and smiles.  No matter what, it is all good. 

jojo2373

Becki, thanks for sharing! So personal yet so familiar.

jojo2373

Melrose, glad to hear from you! You have given us so much support and we are so grateful.

Cindi74

It must have a happy ending. 
Waiting with bated breath.

aic

Jojo, I must say I never saw you with hair but your new pic is stunning... you wear it well, girl!

jojo2373

Aic, your most kind. That was last Friday when I got the BGB (big girl bed) for my first Taxol.



Question, is anyone doing any research trials other than chemo? I am giving extra blood each time for a project to find better methods of separating CTC's (circulating tumor cells) from other blood cells. They feel by identifying how many CTC's you have early, you can forgo or add certain chemos.

Mariposa123

Hi there!

  I am in three clinical trials:-)  I figure, I might as well use what I have for research:-)

1. The first trial involves the surgeons tattooing my impacted lymph node so they can tell which one it was when they go in for surgery after chemo (since the hope is that the chem will have gotten rid of the cancer). 
2. The second trial involves chemo-brain.  They did a brain MRI prior to chemo and made me take lots of cognitive tests.  They will do it again after chemo, and then again one year post chemo.  They will supposedly give me lots of tools I can use afterwards to minimize the impact.  I got a very cool picture of my brain though:-)
3. The third trial involves sleep and chemo.  I have to keep a sleep diary, give blood every three weeks, and wear a watch that tracks my circadian rhythm.  I also am given time each week with a psychologist who is teaching me cognitive behavioral techniques to help my sleep improve. 

I am not in any other trials.  I wanted to try to get into the vaccination trial for Her2, but I won't be done with treatment in time:-(

Feeling super sick today... tired, and the neuropathy seems to be getting worse.  I hate this.  Today is one of those days where I can't imagine doing this three more times.

patriciahurtado

Timberk2 thanks for sharing !!!  Melrose missed you so much!!!!!!..........i had and awesome time today!!!! had my girldfriends take me out and bought a wig...i have 5 wigs and they are all long and black with highlight and some just black..but i love short hair and i got one and they fixed all my wigs and added some shine and all kinds of stuff.....OMG ....i really love all my friends and family and i love you guys cause you guys are so strong...so lets take it day by day!!! it was a great Sunday!!!!!!!!!!!

NO SE for anyone please!!!!!!!!!!

patriciahurtado

i wish i can posed my pics here!!!! ladies show us how to!!!

kidsandlabs

Past week was pretty good. I got a 5K in yesterday, now with daylight savings over it is dark at 5:30 so I'll have to run on the treadmill like a rat in a cage. Chemo this Wednesday, so the next few weeks will be blah, trying to get as much good stuff in the next few days as possible.

bearcub

JoJo and Mariposa I am wondering if you were asked to participate in the trials or did you seek them out? I think it is honourable to be a pioneer in the trials and help our future Daughters, granddaughters and all those that may end up with BC. I just want to say Thank You for all you are doing to help. JoJo you look great in the new avatar.



Patricia that's great about the wigs, I could never find one that fit or felt natural.



Kidsandlabs I hear you about the treadmill, we just moved ours getting it ready for winter use..(in front of the tv in the den). I have been thinking about buying some ski equipment, I haven't skied in about 15 years but used to ski a lot. My granddaughters (5 and 4twins) are starting this year and it sure would feel great to get outside and get some exercise with them doing something fun.



Melrose, I am having my final chemo on Wednesday, is it normal to wonder if you have had enough?...I am feeling a bit nervous about the whole idea, which is weird because I want to be done with chemo....and onto rads.



I hope everyone has a SE free week!

bearcub

I meant to add that I have kept everything about my BC off Facebook. It was my one request to family and close friends. I update those I want to share with via texting, or e-mails or phone calls. It has worked well for me.



I feel very blessed to have you all, women that know and have shared what I have been going through. I will never forget and I cherish you all, you have been my lifeline!..(HUGS) to you all!

twinsplus1

Regarding the FB debate:

I don't have a blog so I have put everything out on FB from the very beginning. I'm the kind of girl that, when I get a manicure, I tell the whole world about it. I'm just a very open book, I suppose. To NOT say anything on FB would feel like a lie or that I was ashamed. That's just not who I am.

Not that my decision hasn't been without issues... An acquaintance of mine (our mom's are good friends), reamed me a new one in a private message because I'm not sick enough and am making it worse for the "really sick chemo patients." She has had a rough road (BC twice and Non-Hodgkin's Lymphoma). I choose to believe that no matter how bad it gets, it can always be worse - and apparently she just didn't want to hear that.

Just do what you want, share what you want and be what you want.

Hugs and prayers to all!

Toastiecat

Twins, I'm sorry you had that experience with your friend. I don't see how you sharing your story would make things "worse" for anyone else. I'm of the mindset that openness is always best in the end (with a dash of kindness mixed in there). I also hate that "buck up, there are people worse off than you" kind of thing. Yes, of course there are. Things could ALWAYS get worse. That doesn't mean that they aren't tough.

I wound up kind of halfway "coming out" on facebook today, when I posted about us offering hot meals, showers, etc, to cancer survivors in our city with no power, water, heat. Anyone who reads the note with a half a brain will figure out I've got something going on. We'll see.

As important as openness and honesty is to me, I had an experience with a friend this week where I really wished she hadn't been open with me. We got hit pretty hard here in Jersey City by Sandy. My newly pregnant friend couldn't stand her dark apartment anymore, so I offered several times for she and her husband to stay with us (we got power back on Thursday...thank god!!). She said yes, and we made plans to pick them up the next day after my chemo. Then, she calls me and says she's scared that being around me, all pumped full of chemicals, will be bad for the baby. I assure her it's not (even checked with my nurse the next day) and she says fine. Then she calls back an hour later and says they're not coming, because of the chemo. She was very apologetic, and she had actually been crying because she felt so bad, but it really hurt my feelings. It made me feel basically like a freak. I totally understand her moment of anxiety -- I might have had it too if I was in her shoes. But I wish she would have just said she was going to stay somewhere closer to work, or pretty much anything else.

Hope everyone is doing well, with no SEs...

xoxo

damiana9

Hello girls!  I still have my muscle pain, and haven't figured it out quite yet- I do my next chemo this wednesday so since I am still having some troubles nearly 3 weeks later, it makes me worry about round 4!  Also, my daughter came down with a terrible stomach bug last night- she is only 4 so I can't really stay away from her- I just wash my hands a lot. 

FB- Yea, I came out on face book pretty early on.  I have gotten so much kindness and support- it has honestly been very nice, and if I don't post for a few days someone gets on there and asks how I am doing since they notice I am not around as much. 

trials- I am on 2 studies/trials.  1 was a genetic test thing- I was negative for BRCA and BART and since I was under 40 they are very curious about that, I guess and they have many MANY other genes that they are looking at- some they are sure are connected to BC, others they aren't sure yet- so they took a lot of blood and said they would get back to me in about 6 months.

the other one I am in is for chemo- it is for her2+, so on top of the herceptin, I also take Pertuzemab (or the placebo), and then my regular chemo drugs (which is why it takes about 6 god forsaken hours to do my chemo infusions!)  I did not seek any of these out- people came to me and asked if I would do it.  I like that I am doing it and really hope that information gained from my experience helps save lives.  I sure hope I am getting the real drug and not the placebo though- that would really be a bummer!

damiana9

Toastiecat- sorry about the situation with your friend   I will say- I was completely paranoid of many many things while pg, plus those crazy pregnancy hormones(and chemo really is some scary shit!).  I think I may have been worried about something like that as well.  It suck to feel like a leper sometimes, I know- but it is nice that she thought enough of you to just be honest   SO glad you had power on quickly!

butterfly14

twinsplus1 -you have the great inspirational attitude, even going without scarves and wigs to me shows great courage. I am constantly covered up and miss my hair so much, even harder then the BMX.

toastiecat - I am so sorry that you had to deal with that. I know that some people, that aren't even pregnant, that I know swear that I can "contaminate" them because of the chemicals in chemo. 

I am not in a clinical trial, but there is a study where I gave them access to my pathology reports, blood work, tissue samples and on going medical treatment for the five years so that they can monitor how well the cancer responded to the treatment that I received.

I hope everyone has a great week, 4th and final AC on Tuesday, almost halfway there.

Mariposa123

Hi All!

Damiana:  That is so cool you are in the study combining Pertuzemab!  I actually just read an article about that study and was going to ask my oncologist next time I go in about it.   It looks super hopeful!  Good luck staying well with the sick little one.  I know it is so hard to keep from getting sick when the kids are sick.  Maybe you can talk to your oncologist.  Mine has me on some prophylactic antibiotics - which so far has helped.

Twins:  That is so awful that someone would get mad at you for not being sick enough!!!  People are so odd.  I just try to remind myself that all of this has more to do with them than it has to do with us.  I am sure your attitude is one of the reasons why you are doing so well. 

Toastiecat:  Sorry about your pregnant friend.  It is so hard not to take these things personally.  My best friend's partner wouldn't allow her to bring their son around me because of the chemotherapy.  I couldn't tell if it was because I was contaminated, or they just didn't want their son to know about suffering, or what.  It pissed me off.   My kids are around me all of the time.  I feel like although this isn't what I would choose, my kids are going to be okay... and they will grow because of it.   

bearcub: For two of the studies, they found me:-)  For the brain study, I found them:-)  I am super worried about chemo brain.  Unfortunately,  I can already feel it happening.  I mess up words and I am so forgetful.  It sucks! 

Thanks everyone for helping me feel connected during these days when I feel like I am disappearing.   It has been such a yucky day.

Melrosemelrose

Bearcub- After you have that last chemo.... ring that bell so that we all can hear that you have finished chemo!!!!  As with the completion of every phase of treatment, we each wonder if what we did is enough.   All we can do is our best and just continue to move forward with our lives.  For me, I chose not to contemplate the what if's too much and instead focus on the here and now and living everyday to its fullest in the most positive way I can.  At the time I started my chemo, I kept thinking that I was getting more rounds of chemo than anyone else and I'd be the last one to finish on the chemo thread I was on.  It turns out that I was not the last to finish and others who had the same chemo regimen asked the same question that you are asking....." is this enough chemo?"  Your doctors have done their best to determine the best course of action for you and the amount of chemo you need to receive.  You know there are no absolute guarantees with anything in life.  With each of our phases of treatment, we are doing our best to lessen/minimize the risks; we cannot make the possibilities of reoccurrance become non-existent no matter how much we want that.  You've done your best here with the chemo--- taking care of yourself---- helping yourself through the side effects and the chemo itself.  Be easy on yourself and not second guess yourself now.  You are ready to complete your time in chemoland.  You will get to take a short break before your rads.  Take that time to rest up and regoup for the next phase of treatment.  Sending you lots of encouraging HUGS and lots of positive healing and calming thoughts and energy.   I'm still with you holding your hand and giving you whatever support you need for as long as you need it, no matter what phase of treatment you are in.

Toastiecat

Thanks for all your replies. Glad to know I'm not alone, but sorry that you lovely people have felt the same.



Mariposa, were you talking about hot flashes a few days ago? I think someone was. They've been keeping me up at night. I found this interesting article about how to deal with them: http://womensvoicesforchange.org/ask-dr-pat-what-can-i-do-about-these-hot-flashes.htm



The doctor stresses that the immediate reaction many of us have, throwing off covers, running to open the window, etc, are probably not the best things to do during night hot flashes. Which makes sense....it makes it that much harder tofall back asleep, and probably even makes you feel hotter. She mentions keeping ice water near the bed so you can calmly and quietly cool down. I was talking to my mom about this, and she mentioned ice packs as a better, spill proof solution. The last couple of nights, I've focused on staying still in bed, and putting soft ice packs on the back of my neck, stomach, or wherever else. I think I'm getting a bit more sleep this way.



Anyone else have hot flash tips?



xoxo

damiana9

I have hot flashes all day and night. I POUR sweat when it happens- its so gross. The only bedtime solution I have come up with is unison. That way I sleep through most of it, and I feel much better being well rested.

florbo

Hi Everyone,

Has anyone been on a airplane since they started chemo?  I am getting on a plane to go to San Francisco and Palo Alto this weekend for a wedding.  My oncologist cleared me to go without any hesitation.  My breast surgeon told me to take my documentation for my port in case I get stopped by TSA for having some suspicious device.  The question I now have is should I wear my wig through security and on the plane so I will at least match my ID better?  I just hate to have to wear my wig for a long period of time.

Thoughts?  Advice?

EnglishRose75

Melrose, thank you for those sensible words regarding coming to the end of chemo.  I have one more round left, and like bearcub, am both looking forward to it and a bit nervous at the same time.  Chemo feels to me like a "security blanket" in some ways--as horrible as it is, I feel calmer knowing that I'm doing something to protect myself against the cancer.  I've heard alot of people say that in fact the post-treatment phase is harder to deal with psychologically, so I think it's a good idea for all of us to figure out our coping strategies beforehand. For many of us strong-willed ladies, the piece about coming to terms with the fact that there are no guarantees and things are not within our control is a difficult one.

I haven't talked about my cancer on FB at all, but I think that everyone uses FB in different ways.  I have alot of FB "friends" who are people that I don't know that well, or people from my past who I'll probably never see in person again (which is a bit silly anyway, but another debate entirely).  For that reason, I just didn't think it would be appropriate to use this as the forum to share my news.

Toastiecat: I understand that some people can behave differently when pregnant, but really, that's so hurtful that your friend didn't want to be around you because of the chemo. I'm sorry you had to deal with that.

I had my worst day ever since starting chemo yesterday, and for the first time since starting, couldn't drag myself out of bed.  This Taxotere is really tough (Mariposa and Damiana--you're having six rounds, I'll only get three.  Wow, you guys must be hard core!).  I actually can't ever remember feeling so physically bad in my life.  Like lead in my bones and joints, freezing cold, upset stomach. Yuk.  Luckily my Mum is here to take care of the kids and keep the house running. I feel much better today, thankfully, and will be able to function at least. Right now, I can't even contemplate doing one more Taxotere. Nasty, nasty stuff.

patriciahurtado

Can sleep so wide awake!!!!!



Toasti!! People have different reaction to everything dont let anybody or anything get you upset ... Safe your energy.... I'm from Miami and people have weird comments about it!!!!! And I just enjoy it cause they think they know what they are talking about!!!!... Like I said I love my chemo not the SE but what is doing for me!!!!!!



Thank ladies for trials to save our sisters..... I am BRCA positive... Im not sure If they would want any trials.... We need save our sisters

Melrosemelrose

florbo- I recently flew to Boston from Houston and back recently.  I did not have any documentation about my port to show the TSA when I went through the security checkpoint.  On the trip to Boston, I had a full body scan and also had a modified pat down on my upper body since something showed up on the scan.  This modified pat down was done right after I had gone through the machine and not in a private area.  The female TSA agent who performed the pat down was very kind and apologized the entire time she was doing this.  I told her that I had a port and being treated for breast cancer before she started the patdown.  I wasn't afraid or upset by the pat down because I expected that I would get one.  On the return to Houston, I went through a regular walkthru scan and had no pat down.  You can go to the TSA website to read more about going thru security: http://www.tsa.gov/traveler-information/what-expect-if-you-are-breast-cancer-survivor

I did wear a hat that I sent through the carry on x ray scanner and didn't think twice about whether my ID matched what I looked like.  However, I recently had to renew my license and get a new license picture.  (When I got that renewal notice letter, I just laughed because how ironic that my driver's license picture now shows what cute little semi bald self at 7 weeks PFC!!!).  The TSA may study your driver's license picture a little more closely but they should be able to see that your facial features match your photo id.  I do not wear a wig and wear hats/ knitted caps to help keep my head warm in the a/c and just take those off whenever I want to. 

FYI:  I don't have lymphedema (LE) but I did get on off the shelf compression sleeve and gauntlet to wear on the airplane as a precautionary preventative measure.   Although my BS said that I probably did not need one,  I got fitted the sleeve and gauntlet anyway.  He told me that he was fine for me to get the sleeve/gauntlet if I wanted to be extra extra cautious.  I wore the sleeve/gauntlet an hour before I got on the plane, during the plane flight and for an hour after the flight.  I went to a women's medical supply boutique and got fitted with a sleeve with the least amount of compression.  So far, so good.  

Have a wonderful trip!!! 

Melrosemelrose

EnglishRose75- I'm glad my words comforted you a little.  I know that it feels like you work so hard to feel good and stay well during the months in chemoland and at the end of chemo, the chemo project is abruptly over.  It does feel like "Now what do I do?/ Now what?"  Those emotions of feeling a little lost do occur and one may find herself feeling anxious and not knowing whether to be happy or sad.    It is like the mind is catching up with the body and really coming to grips with all that has happened during the fast paced grueling treatment plan.  I have several BCO chemo friends that are currently getting counseling post treatment to help them.  I think it is a good idea to get counseling whenever you need it, no matter what phase of treatment you are in.  Yes, it is hard and difficult to face the realities of BC and we all find ways to move forward and continue to heal our minds and bodies.

Hope you start feeling better soon.  The side effects of chemo are truly cumulative but one day you will feel better and move past this time in chemoland.  HUGS!!!

bearcub

Melrose thank you for replying to my question about it feeling a little strange about ending the chemo part of therapy. Hearing from English Rose having the same thoughts reassure me I am not alone. I guess it is like a security blanket, a sense of control in a out of control, no guarantee situation. I have been happy with all of my decisions this far and now I will move onto rads knowing I am adding another layer of protection.



I have noticed a lot of ladies are having issues with night sweats, I imagine the drugs are playing havoc with your systems as most of you seem to be younger. I went through the same thing in my late 30's until my mid forties...it was hell... The chemo must be throwing you into menopause. I have had some sweating but not as bad probably because I am post menopausal. Mostly my forehead and chest at night and that is with a fan going. I feel sorry for you girls who are getting the full blown sweats.....

Cindi74

English Rose,  My fatigue the 4,5,6 days after chemo was like you.  Lift a hand and felt like it weighed 200 lbs.  Every move, even breathing took total effort.

Starting the day before chemo the 3rd time I took ginseng with approval of Oncologist.  Less fatigue, but a sour taste in the mouth about 6 days.  Felt wrung out.  Hope you feel better soon.  Started to feel better on 7th day, and feel pretty good day 13.

MsTori

Thank you September chemo sisters. I'm on the October boards, but like to pop over to see how everyone's doing. And you are all awesome leading the way. I've started the chemo flashes. Although I'm still getting a off whack cycle. Bleh! I'v just completed treatment 2 of 6 of TCH. I will def use some of your hints.