Is There A September 2011 Chemo Group?

CJRT

Belle- So glad you had a great time at the wedding. Congrats to your daughter!

Kimberly- Good to hear from you. Glad you are doing well and happy for your good results!

Mags- Great to hear from you. Thank you so much for your kind words! Wow, you have been through a lot with your recon. Hope you are healing well and feeling good. Enjoy the summer.

I'm hanging in there and hoping the status quo continues. I will have another scan mid-July, so keep me in your prayers for good news. We have a family vacation planned for the week after the scan, so I am hoping we will be able to celerbate the good news on the trip. Think of you all often and wishing you all well. XOXO

belleeast

Cjrt,in my prayers,hope when you go on vacation,you'll be "dancing in the streets"

Kimberly,good to hear from you ,glad you are doing well.

Mags,you've had a rough go,I've been able to keep up with you,I check out the triple neg thread every day or so. Did the lymph surgery help with the lymphdema?



I am upset and at the same time hopeful. I think I've said how slow and thin my hair has come back in.well, I found out my cholesterol med-zetia causes hair loss/thinness,I started taking it during chemo. I guess other cholesterol meds do,too! I am going the natural way from now on no more meds. Apples,onions,carrots,oatmeal,garlic,beans etc found a list of foods that will lower cholesterol . I will keep you all updated my hair progress lol Hope everyone has a good summer...

Kimberly1961

Belle, dumb to talk about hair but the Arimidex (Anastrazole) has thinned my hair so much.  Also dumb to say, but I think I miss my head of hair more than my breasts.  It used to need thinning at every haircut for my whole freaking life before cancer.  Glad I am not bald anymore but it's so thin and it breaks off...I guess I am just getting used to it.  I picked up Nioxin kit today from hairdresser and really think I need women's rogaine, which is more targeted to cutting testosterone off at follicle level.  I feel so stupid for complaining, cause I'm alive, Right?  Weird, it bothers me more than the missing breasts thing.  First thing is to do everything to survive, then try to fix the other pieces I guess.  I guess I should feel blessed because some people react to chemo and really have alopecia, forever.  I will let you know if any hair products help with this.  Let me know if you have had a problem and have seen any results with products or supplements. 

CJRT:  Dear, I am so sorry you had met.  You are so young and your children need their mother.  I hope they blasted it out.  You know the youngsters like you and the young mothers are always especially in our thoughts and prayers, let them overcome this and see their children grow.  Thank you for sharing your situation and letting us know.  The good news, the bad news.  It's not all rosy news with breast cancer and we know that.  It can be mets for us at any doctor's appointment.   I hope we each feel support going through it, especially here, where we started.  I hope it helps a little that you are not alone wrestling with breast cancer. 

I think we all live in fear of that tap on the shoulder that the damn thing is back, I don't care how long someone is out.  We all fear what might be the next step with this for us and those we know.  We learn how to wade through it with others going through it.  Thank you all for being there.

Kimberly

belleeast

Kimberly,I know exactly how you feel. My hair has always been thick,now thin. It just sucks,I know it seems silly in the grand scheme of things but it really bothers me. I posted on my Facebook that the next person who says "at least you are alive" when I complain about my hair,I was going to bop them upside their head!!!! They have no idea how it can affect you!!! I am hoping since I quit taking the zetia, it will thicken up ))

On a really good note ,I am finally getting my energy back. Everybody including Drs always said just think of it as a year out of your life. I think the reality is really 2 yrs,before you start feeling almost normal and that is if you are one of the lucky ones with no recurrence or mets. For those of you taking the meds for 5 yrs,it might be different,I don't take any with the triple neg bc.

belleeast

Cjrt,I hope things are going well with you. In my thoughts and prayers.

Hope everyone is enjoying the summer. I started walking with my nephew's wife,tonite was 2nd day,did 2 miles. We walk late in the evening,they have 15 month twins so after their bedtime. So glad to have a walking buddy to keep me on track,I had really slacked off on exercise.

The triple neg bc group lost an amazing lady,I don't post there often but I have read that thread almost every day since I was diagnosed. She was an inspiration with her humor,wit and fight against this awful bc. I felt like I knew her even tho we never met.

She will be greatly missed,fly with the angels,Dawn!!!

I think about you girls a lot and the journey,we have been on. Thank you for being there for me. All of you are in my thoughts and prayers. Stay strong and healthy!!!

CJRT

love to check in and see the familiar "faces" and hear that everyone is doing well. you ladies continue to be such a great support to me. kimberly, i've missed your wit! thank you for the thoughts, belle. glad to hear you are getting back into the exercise routine. so sorry to hear about one of us losing the battle but inspired by the impact she must've made. i'm having a wonderful summer, and we spent a fun, super relaxing weekend on the beach. now the scanxiety is setting in. monday is my big day. thank you for the positive thoughts and prayers.

Kimberly1961

CJRT - Good luck on your scan.  It sounds very positive that your tumor markers were so low.  Hooray.  I hope the scan turns out just as well.  Scan results will never be available in a timely manner.  Good lord I am remembering how long to get the results of my MRI that diagnosed cancer and the pathology results from biopsy and how frustrating that was.  I hope you can enjoy your vacation and not get wound up with the anxiety of what are the darn results.  Easier said than done.  I remember.  You have me researching cancer medications again, the Xgeva and Kadcycla.  Did you start either of these?  You look so young and strong and beautiful in your picture with your baby.  Weird thought,  if I could put a line up of pictures out there like mug shots and say "Which of these people has cancer?"  No one would guess that picture of you.  Hugs.  I hope the Kadcycla does better than expected, that you tolerate.  My sister has done way better than anyone expected when she got Herceptin when it was new, and still the same as she always was, except the boobs.  She did not make it through the whole protocol, had to stop for low EF.  We talk about attitude towards cancer beating it somehow.  She said "I thought I was going to die."  My sister and I do not agree on much, believe me you, but we both think it is a slap in the face to those who do get sicker when they ascribe health to positive attitude.  She said "I thought I was going to die."  So did we all, who knew her diagnosis.  She had extremely large primary tumor (8 cm) and positive lymph nodes even after chemotherapy pre-surgery.  She did not have a positive attitude.  I can attest that she lived like she was going to die in 6 months.  8 years later she is nearly healthy as a hog.  New drugs do come out that change outcomes.  They really did not know how well that drug was going to work, but it did.  Here's to new cancer-beating drugs on the scene and many more.

Belle - You really set the bar with your energy to go out and walk.  I was kind of low energy before diagnosis and the vitality meter has not exactly revved up since.  I sure do enjoy hearing you take the bull by the horns, lose weight, get your butt out and walk and exercise.  I am more like that animal that hangs upside down from a tree and moves an inch every hour or two, if and when it wakes up.  I think it gets out of the tree every couple weeks to crap.  One good thing is that the chemobrain fog has lifted so much since therapy.  I kind of thought that might be forever and was not too pleased.  I still think it did damage, memory is not what it was, but time is helping me cope, do things differently to compensate. 

Maggie, sounds like you had a rough reconstruction, had to go back?  Well, how did it turn out?  As someone who did not have reconstruction, because I want as little pain as possible, I am curious how you feel about the result.  My sister had flaps, had early complication with second surgery, then went back a couple years later and implants under the flaps (some people are never satisfied). 

Karen, welcome to the missing parts club.  I have no uterus, cervix, ovaries, or breasts.  The gynecology appointments are over.  What would they check under the hood these days?  No more stirrups for me.  No more mammograms either.  Well, 2 days a year I should celebrate on the calendar, no mammogram day, no stirrup date.  I should personally celebrate that with no reconstruction, I really can throw my bras in the firepit if I choose because I certainly don't wear them.  Hollywood actresses take proactive measures and its all the news.  Ordinary people do this and WTF, do our pictures get in the paper? I think you are not on hormone therapy, but when some movie star announces her innards are a sahara, I will pay a little more attention. 

About the hair and the Nioxin, I have only tried it for a week so far and it is way more expensive than I would usually shell out.  I have to give it thumbs up in that my hair is softer than it has been in a long time, so I am hoping less brittle and less breakage.  The Anastrazole seemed to give me less hairs, thinner hairs, and the poor little guys were breaking in half and then breaking again I think.  It feels softer and more elastic, but maybe that is wishful thinking.

I hope some of the "old girls" come back and visit, good news, bad news.  You know I remember so many of your stories even though I met you during the worst of my chemobrain period. 

Kimberly

mags20487

CJRT--we will all be in your pocket with you on Monday.

Kimberly--recon....will let you know when its all done if it was worth it..still in the middle of it all now.  Glad that ladies blouses fit me again so that is a start.

Mo appt coming up in 10 days.  no scan this time just blood work.  approaching the 2 yr mark so a little anxious.

Belle--keep up that exercise.  I had been on doc ordered rest off and on since Nov.  blah!

Maggie

rjbaby69

Hello Ladies!  Been a while I know, but I've tried to keep up, not very good at that I must add.  Been a busy few months here at the house.  Kids are busy playing sports.  Grandson finished playing soccer this last spring and we had a blast!  I will be retaining him in Kindergarten.  After conferencing with his teachers, speech therapists and OT's, I've decided that he needs another year in Kindergarten.  I hate to do it, but if I'm gonna do it, it needs to be now.  He's just not ready!  Granddaughter is doing very well!  Learning her colors and learning to count somewhat!  We've had a great time in the pool!  It's so exciting and comforting to me to watch them growing and learning!  It's hard, don't ever think it's not, but doable!

Oldest daughter is still floundering around in this thing called life.  She's had several rough days, still no job and still no clear goals.  Sad.  She probably will be sent to PVC (for parole violators) for 60 days because she has violated her parole by not having a job and not paying her parole fees and fines.  Sad!  But I've done all I can and I have my hands full with the kids.

Youngest daughter has graduated college and had her pinning last Thursday night.  She is officially a Raiology Tech.  She takes her Board exams on Wednesday, which would have been my Mother's 91st birthday.  A very good sign as I told her that her Mamaw would be with her and I know she will pass!

Now, as for me.  I am doing okay except I have developed what I think is loss of circulation in my right hand, specifically my fingertips.  They have turned blue and are very painful.  I am supposed to see a vascular surgeon this Wednesday.  It's only on my right hand (which is my dominant hand) and I think I may have some scar tissue from my carpal tunnel surgery interferring with some of the veins that run to my fingers.  At least, that's what I am hoping!  Other than that, I am okay.  Just busy trying to keep up with my little family. 

I am a two year survivor as of July 20.  Hope I have many, many more!  I have scans on the 22nd and see my Onc on the 24th.  Gonna be a busy month for me.  I also am trying to get drivers hired and the school year ready for back to school on August 19th.  Whew!  It's a busy time but a good time of year.  I am still enjoying not having to get up so early and the dog days of summer!

Love and hugs!  Will update you soon on my hands.

RJ

belleeast

Kimberly,you are hilarious-hanging from a tree-have missed your humor! I hope I'm not giving the impression,I'm an exercise lover! Ugggh,I hate exercising,walking is the lesser of 2 evils and a lot easier!! Also an act of desperation, I need muscle not flab esp my thighs and belly,hoping the walking does the trick!

Rj,enjoy seeing pics of your grandkids on facebook,you are one busy mama!!

Maggie,that just sucks about the rest since NOV,if you are like me when you are told you can't that is when you want to lol

CJRT

love the updates and seeing you ladies doing so well and so busy with the happier aspects of life!

kimberly- thank you so much for your encouraging words and sharing about your sister. it feels good to have the support of you women, who helped me from the beginning. it's nice to get the support now rather than feel bad about coming back here with bad news. thank you also for the compliment! i do present an interesting dichotomy for some people i meet, which often leads to them saying some foot-in-the-mouth comment. though some days those comments upset me, they generally just make me laugh. we bought a new washing machine the day before my hip replacement and had a problem with it right from the start. the 50-something repair guy made some loaded comment about why was it that i didn't do my own laundry, and when i said i had a hip replacement about 4 weeks prior he then asked the loaded question about why, was it because of a car accident. my cancer in the bone response shut him up quickly. i should really write a book with some of these! i create quite a stir at physical therapy since it is near a retirement community. when i go in my yoga attire, i have all the seniors asking my mom or the other therapist why i am there. some 80-something said, "oh to have your body!" to me, to which i replied that i would trade her. as for the results, my MO is great. she had already set up a follow-up for tuesday afternoon so that i didn't have to wait more than 1 day for the results. we went ahead and planned the trip anyway and figured we have to go on with life. if the scan throws me a curveball, we will adjust.

Mags- Your comment made me tear up, and I will be thinking of you all on Monday when I get anxious. Will be sending positive thoughts your way this month as you cross the 2-year mark and become further out from this bump in the road. glad to hear the reconstruction is now going well, especially since it has been such a long road for you. hopefully the end result will make it all seem worthwhile and will make you feel better as you move forward.

RJ- so happy to see you are doing so well and that your grandkids are flourishing. sorry to hear that your daughter is still struggling, but what a blessing you are in her life. hope you continue to enjoy the summer.

Belle- Thinking of you and hope that you are enjoying the summer. I've started walking myself, and beyond the exercise component, I know research has shown the relaxation component of walking is great for your health too. I see that you mentioned Facebook. Send me a PM if you want about how to find you, or I could do the same. Would love to follow any of you Facebook crowd that way.

belleeast

Cjrt, I hope you have big pockets,we all might get a little crowded.... Lol

I have a mammo coming up on the 23rd exactly 2 yrs to the day,I found my lump- hope it's not a bad sign... Also received letter saying I need to schedule a follow up breast MRI to the biopsy I had in feb.. I wonder if the mammo will suffice?

I am going to make appt with my primary mon,I've had dull back pain on r side for a few months,went to dr once thinking it was kidney,took antibiotics but pain never went away completely. Have put off going back for a couple months now I am having dull pain under my right rib cage and right shoulder,also feel bloated...

My mo is on maternity leave til sept,I go back on Aug 16, I will see her phys assistant. I met her once,when I was trying to snap my front closing bra,she kept staring at my boobs-weird...lol

Cjrt,I will send you a pm.

Hope everyone enjoys the weekend!!

CJRT

kim- forgot to comment on the treatment question. you're good! i'm on Kadcyla. xgeva was mentioned but i was initially told they would do one thing at a time so that if side effects arise, they would be able to identify what was going on. as of now, the treatment team and tumor board has not yet recommended it for me. i am also taking zoladex and will have my ovaries out. i feel so fortunate to have gotten kadcyla immediately after it became available, as it has been extremely easy to tolerate thus far, and I am praying it buys me healthy years with my family.

belleeast

Hi all, I have decided to wait on making a dr appt for my pain on right side and shoulder for a week to see if it persists... Although the way my shoulder and back hurts today,Might regret that lol. The pain under the rib is still there but I was taking a supplement (garcinia cambogia) and quit taking it,want to see if it was aggravating my liver. I've been taking it about 2 wks. It doesn't account for the back,which feels like it is inside not a muscle.. Truthfully,just don't want to go to Dr right now and have to deal with tests etc right now ... Taking my Dad to dr tomorrow ,next week mammogram and ultrasound,they changed it to a diagnostic as a follow-up to the biopsy. Said I would talk to the radiologist afterward so that's good. I think I'm feeling scan stress ugggh.... Will it ever go away????

mags20487

belle...I do not believe it ever goes away when it comes to scans and tests...huggies to you

cjrt...how did it go today?

Maggie

CJRT

Belle- Will be sending positive thoughts your way for your imaging. Hope your pain eases. I know how annoying it is to juggle additional appointments, but at least if you have to make one, hopefully it will alleviate any worry and give you PT or something to help.

Mags- Thanks for thinking of me. Scan itself was easy. At least I only have to wait til tomorrow to get the results. Part of me doesn't want to know and is enjoying living in the denial. Then I remind myself that it is better to know early anyway and come up with a plan. I will keep you all posted. Thank you again.

belleeast

Thanks,Maggie and Cjrt,I pray you have good news tomorrow ,Cjrt.

Still walking with my niece-in-law,7 days so far...I think I'm gaining weight instead of losing lol but hopefully it is water retention....

CJRT

Thank you ladies for being such a source of support and comfort for me. 

mags20487

Happy happy happiness for you cjrt! Have the best vacation ever



Maggie

belleeast

Yeaaaaa!!! I think your Dr makes sense and is pretty awesome and thorough... Enjoy your vacation,relax and enjoy!!!!!

belleeast

Well,I'm in the wait and see club.. Had mammogram ,ultrasound today,saw a few calcifications-weren't there last time. Near lumpectomy site,go back in 6 months to see if they change....

mags20487

so sorry Belle...6 months seems like a long time with TN??  Very well could be scar tissue.  Had nodule show up during a pet scan on my left lung and it was scar tissue from the rads.  We will be waiting with you!

Mags

belleeast

Thanks,Maggie! I know 6 months seems like a long time to wait considering how fast TN can grow. My next onco appt is Aug 16 but it will be with a phys assistant,my regular onc returns in Sept from maternity leave. After this appt I go to every 6 months,I'm thinking about canceling and rescheduling it for when she returns and discussing it with her. I know the calcifications could be because of surgery and radiation. But there is still that fear it isn't....

CJRT

Ugh, Belle, I know I responded to your wait and see status already on Facebook but now it appears I might be joining you in the wait and see club.



I'm still on vacation and having a wonderful time with my family... Until I called to follow Up on scheduling the biopsy for that one questionable node. I didn't want to wait until I got back from vacation because I wanted to get the ball rolling. My oncologist called me back and said that she didn't bother calling since I was on vacation but that the tumor board thinks that there's two options. They went back over this again and there's a possibility that even though on a paper the lymph node appears identical in size and uptake that possibly it was just a tiny bit lighter this time. there could be a possibility that it could be the same type of cancer and responding to treatment but that there is a lag between the lymph node shrinking and the tumor markers declining. Apparently everyone is confident that the treatment is working but there is a debate about what to do with the lymph node. My two choices are to wait and see and rescan again in eight or 12 weeks Or to just proceed with the CT guided biopsy. Apparently it's very difficult to get to this axillary lymph node and we would have to speak with the breast surgeons to see the specifics. My MO said that if it were her decision she would wait and see and rescan and then biopsy at that point. However it is up to me. I see her again next week. I was caught offguard by today's call because I just thought it was gonna be about scheduling and Not about decision about whether to biopsy at all at this point. I'm conflicted and don't know what to do but would welcome any suggestions, questions to ask, or issues to address with her at my appointment next week. When I called one of the top cancer treatment centers about getting a second opinion they considered my treatment successful in this situation and do not offer second opinions in cases like mine. However, there is Another place that would see me if my oncologist referred me.

belleeast

Ugh,Cjrt,don't you just hate it. My first instinct is to tell you to go with your gut and get the ball rolling. But one question I would ask,if you do the biopsy and it is cancer,will they change the treatment or will they wait and scan again in 8 to 12 weeks to see what is happening. No 2,will the biopsy show if it is cancer that it is dying/chemo is killing it? If the biopsy will tell them whether or not the chemo is working then I would do the biopsy now!! I hate the wait and see,I would rather know what I am facing instead of worrying for weeks or my case months. Although,I am trying real hard not to think about it since there is nothing I can do right now. But you have a choice,I'd go for the peace of mind if it were me. I'm going to call and get a copy of my mammogram report,to see what it says exactly.

belleeast

Oops,just thought of something else,will the biopsy be able to remove the whole lymph node,it would be nice to be able to get that sucker out of you!!! Just remember,it's your body only you know what is best for you! The Dr's and we can say what we would do but whatever decision you make it will be the right one for you. Try and enjoy the rest of your vacation!!

CJRT

Thanks belle! I'm going to read what you wrote again before my appt with her but you have given me some important things to think about. Thank you! Hugs... Off to try to enjoy the last few days of vacation with the fam

belleeast

Cjrt,how did your appt go? Hope you enjoyed your vacation.

CJRT

Thanks for thinking of me, Belle. Had an incredible vacation and truly felt relaxed. The appt. went really well and I appreciate all of your thoughts. She explained why the board felt that waiting would be a good option, and she even said something to the effect, "Don't think anyone has written you off or is hanging you out to dry." She explained the reasoning in detail and basically said the options are (1) that treatment is working, the node is the same type of cancer, and it's just lagging behind other indicators (the TM, the hip being clear, etc.) or that (2) it is something benign and named a few options. Hypothetical option (3) would be that it is cancer that switched receptor status but she said that no one thinks this is a possibility because that would mean I would have had no treatment for 6 months for that type of cancer and yet the node didn't increase size or uptake and the TM fell and remained stable. Apparently the downside to removal is the location...deep within the armpit...and a high probability of neuro. problems in my arm and shoulder that could develop. She said if it were her, she would wait 2 months and then do a needly biopsy because because it is much less invasive. The downside to doing the biopsy without waiting is the risk of neuro problems when the PET in 2 months might show that it shrunk. She answered a bunch of my other questions too- including the excellent one you suggested. The biopsy will not tell her much about the treatment killing the cells. She says that she can see that better from progressive PET scans. I had also asked about vaccine trials if I am NED, but she said you have to be off other treatment to even be considered, which she would not recommend for me. Okay, that is enough my rambling! I have a PET scheduled mid-Sept with the plan to definitely biopsy without bringing it back to the tumor board if the node remains unchanged again. Thank you again!!

belleeast

Cjrt,I am happy you enjoyed your vacation and were able to relax. Sounds like you have a good mo,glad she answered your questions. Her reasoning seems pretty sound,the risk of neuro problems in your arm and shoulder is reason enough to wait. Will pray it has shrunk or disappeared by the time of pet scan. Good news is you only have a month now to wait . I have mo appt on 16th with her physician assistant,decided to keep it and tell her of my back pain,rib cage,shoulder pain. My daughter's reasoning is the last time my mo was on maternity leave,the sub mo(even tho I didn't like him) didn't hesitate to order test,sending me to ER to get complete heart work up. So am hoping they will order a pet scan or some time of scan to ease my mind on that front anyway. I am going to request I see my reg Mo in 3 months,again.