Starting Chemo April 2009

Titan

Betsy,,love Kool and the gang!

And we are all GOING TO DANCE ON THE CEILING! 

lollys

THanks Betsy!!you keep us going!! we will all get each other through rads too --on the Aug site as of now but maybe will do both aug and sept. you all are inspirations!! Laura

AmyIsStrong

 

Well I had my rad consult yesterday and it went very well. Met the doctor and really liked him. I did get a little tearful when he reviewed the (long and scary) list of possible side effects from rads but he was quick to center me on the rarity of the severe ones and I regrouped quickly.  I have my CT scan on Monday where they will measure/mark me and then one more pre-visit and then hopefully start next Mon 8/24.  I will have 25 rads to the general area and then 8 boosts - for 33 total. I hope to be done early October.  I'm not particularly scared of it  and feel (mostly) ready to go.

At 2 weeks PFC, I am feeling great. Very high energy and happy and strong. BUT somehow in the BLINK OF AN EYE, I gained 10 lbs. HOW did this happen? I'm not devestated, but am pretty surprised and concerned that it not continue. Anyone else experience this? Yes, I've been more hungry, but not THAT much more.

Anyway, I am going to go to the Sept rads group, I think, but still stick around here as well. Every time another one of us gets to PFC I am so thrilled and excited!

Wishing all of us a happy and peaceful weekend.

Amy

lollys

Hi Amy --I am going to get my ct and measures on monday too but will not start untilthe 31st since I am having my port out on the 24th--I also have gained 3 pounds this past week and half--I am not happy about that but not planning to diet but planning to try and eat healthy we need the good food to keep our body healing after chemo and rads-- good luck to you and we will keep posted -I am on the aug rads group but will probably start on the sept one also--stay strong--Laura

BetsyBuzz

Pam - we are all going to wait for you before we start dancing in the streets!

ljh58 -Congratulations! You are now officially PFC! Hope you feel better each day.

Amy -I'm a week ahead of you with rads. I start on the 18th. Reading the Aug Rad thread I'm starting to scale back my expectations. Sounds like fatigue may take us down one more time. I just can't image it's anything like chemo...so I'm staying positive. I have a total of 33 rads, 26 normal and 7 boosters.

Laura- I get my port out on the 25th in the a.m. and have rads in the afternoon. The 25th will be a long day.

Betsy

hrf

My chance of recurrence is 30% but the onc still ordered the port to be taken out. I was so glad to be rid of it although I did appreciate having it during chemo.

lollys

Hi Betsy--looks like you are a week ahead of me--I have to go to in-out surgery to have my port taken out under light anesthesia --he normally does it in the office under local but he tunneled it a little differently so cant do it under local--just another little hitch--apparently it is no big deal having it taken out normally but of course mine has to be a big deal!!anyway hope all goes well for you on that day --the sooner you start the sooner done!!! stay well--Laura

BetsyBuzz

ljh58 - here are the stats my onc gave me. 67% of 100 women -will have a recurrence after 10 years without any additional therapy, 48% (with anti-hormone therapy), 28% (anti-hormone & chemo)...in my notes he didn't include rads. I too had a positive SN, mine had also extended beyond the nodal capsule. My surgeon said they would not remove my nodes in a second surgery because the rads target the nodes. I was one of those who initially tested neg. in surgery then on further pathology they tested positive. Hence...I'm on to rads next.

Laura- sorry to here your port removal is more complicated than normal. Mine is going to be removed in my surgeon's office.

Dawn - I'm jealous that you can even color your hair. I'm just now getting peach fuzz. It looks all gray....but I'm happy with what ever comes in.

Anonymous

It is the happiest day when the port comes out!!   I had to go back to the surgi center for it, and even though it hurt the next few days (mostly tender where the port was in the body, not at the incision, they go in through the original one), it was all good!  congrats to all of our april sisters - is everyone finished now? 

Dawn - can't wait to see the pictures!  If you go on the hair hair hair thread, look at Lori's progress - she posted it on photo bucket and it's great - you get a good sense of where the hair should be.  her's is very curly - it's really cute.

Hope everyone is feeling good - and AmyIsStrong - yes, the energy surge is the best, isn't it?  You finally start feeling like yourself, raring to go and full of energy.  Rads is a piece of cake - you literally are in and out in 5-10 minutes, depending on if you are waiting for anyone before you, and how long it takes to change into your gown.  The actual treatment is very quick.  Remember, ladies going into rads - moisturize, moisturize, moisturize!!  Keep your tx area well cared for with aloe vera and aquafor (it's slimy, but worth it overnight).

lollys

Thanks Chelev about the post on your port--sounds like yours was placed the same way mine was--about 2 inches from incision site--so that is encouraging that it went ok for you--hope all are doing well --Laura

aris

Hi everyone, thanks for waiting around for me. I know Stephanie1 was also scheduled to finish  chemo this week! If you are out there, Stephanie, chime in! We want to hear from you!

I will be in the Sept. rads group. I start on 9/10 and will have 33 sessions. I had my planning in March, so I'm all tatoo'd and am really really hoping not to be hit too badly with the terrible fatigue that can happen. It can't be worse than chemo, but who knows, everyone is so different!

I am counting the days, only 9 more days until I'm done, but I do have to get through 2 chemo's!

 Hoping everyone is having a nice weekend.

Pam

Titan

My onc said with chemo and rads that I would be the same as the rest of the population (12%)..but you know what...I don't like stats...just like when I found the lump the stats are 80% that the lump wasn't malignant....someone has to be the other 20%...but anyway...I guess the goal has to be to do whatever they throw at you because it is the BEST FOR YOU  and then to try to take care of yourselves as much as possible and be paranoid about any little change..I had a "routine' mammogram on my left breast on Friday.  I asked them if they found anything and they said I wouldn't know until Monday..I said,,sorry, nothing is "routine" about me anymore...anyway.,,I still won't know until Monday,..The rad doc said he didn't find anything but I still think I should have been able to know on Friday.

comingtoterms

I think it is interesting that for many of us who are (were) - pre-menopausal before our dx, a mammogram was of no comfort in terms of detection.  I had a clean mammogram in Oct. of '08 and found three palpable lumps in December.  After my MS they found my BC was multifocal, DCIS, etc.- and I had been faithful with my mamms since I turned 40. - pre-menopausal women are in a VERY scary place when it comes to BC detection.  Our breast tissue is dense and often impossible to read.  I felt the same way you did titan - why on earth would we ever trust a mammogram again?  Not until our breast tissue is fatty - also known as: after we have been on tamoxofin for a while- could we possibly place any value on mammograms. There needs to be more press on pre-menopausal BC - we need to speak out on the importance of breast self-exam. I did breast self-exams infrequently and kind of relied on a yearly visit with my OB/GYN for that.  I never thought in a million years that I was a candidate for BC.  It was only after I had lost quite a bit of weight that I looked at myself in the mirror and thought, "Boy, Tammy, this weight loss sure did a job on your breasts!"  I palpated them and found the lumps.  -  I agree with you, titan - BC survivors should get their mamm results immediately - hang in there Pam and Stephanie 1,  you'll be there before you know it!!!   Tammy

tulipbebe

Hey Titan,

Thanks for your shoutout!  I've been MIA!  I was here more frequently during my AC.  Once I got started on T, my energy came back and I was drowned in work and caring for my 2 + year old.  Now I go for rads everyday and it's so tough (mentally).  Totally pain in the rear to stick to the schedule.  Just can't wait to be done with it! 

aris

Tammy, I was premenopausal prior to chemotherapy (I'm 45 now, was 44 at time of diagnosis) and my tumor was found on a routine mammogram. I had always been doubtful about the efficacy of mammograms on dense breast tissue too, and had felt there was too much room for human error in reading mammograms, but I had a routine mammo in January and was brought back for another one, an ultrasound as well, had a biopsy and then a lumpectomy. I am grateful for the technology, despite my earlier doubts of how effective it was. My tumor was only 1cm, and it was caught on mammo.

I do still worry about how effective they are, but thought I'd let you know that for me, it probably allowed me to have a small tumor without mets or lymph involvement. No one could ever feel the tumor because my breasts are so dense, large and the tumor was deep.  I'm grateful beyond words. 

For now, I'll have mri and mammograms every 6 months alternating. I'm hopeful that this will keep me closely screened.

Pam

hrf

I was postmenopausal and my breasts were not dense. Even so, the mammogram did NOT pick up a 2.2 cm tumor. Clearly, the technology is not yet as good as it needs to be.

AmyIsStrong

Hey ladies!  big day for me today - did my 2nd MUGA scan. I had them put the IV in to draw the blood and they left it there while the blood got mixed with tne nuclear stuff. Then they just put it back in through the IV and then took the IV out and started the test.  It was MUCH easier than the previous time. I also brought my IPOD and listened to it while the MUGA camera did its thing. Very relaxing!

Then I went over to the radiology dept and got my CT scan, measurements and tattoos for rads.  I have the practice run on Friday and start for real on Monday. I will have 33 total.  25 to general breast area and 8 boosts to the scar area.  It all went smoothly and the tattoos were no big deal at all. (Hey I admit I was nervous - I am a chicken about needles but it was nothing.)

So I am moving on to the next phase. And for the most part, I am ready.

First Herceptin-only scheduled for Thursday. I dont' think I will totally 'get' that chemo is over until I can go in there and come out and not be sick the next week.  Can't wait!

Amy

ps I agree about pre-meno women and mammograms.  Mine was clear but the u/s picked up the lump that I detected. And also, I felt the lump after losing a bunch of weight. I tell the guys at the gym that they may well have saved my life!  

Titan

BC sisters..I need your help..had a mammo on my  left breast on Friday..got a call back that said that I needed another one,..microcalcifactions..they were there last year...showed up brighter on the mammo this year,...I'm totally freaking out...how could I get cancer in my left breast when I just got done with chemo..hair growing back...rads soon...happy days are supposedly here again..anyway...one person said I had nothing to worry about...but then why the second mammo...I need your help.,.I'm freaking! I hate this anxiety crap....feeling so good and now I feel like I have been sucker punch..the next one is on Friday...what do you guys think!  and please be honest!  Two different machines..one was on a regular clinic type place last year..the other one was at a diagnostic center......I know that if cancer is there it is probably in situ but I'm still freaking...I want to be done with this....I was so happy for a week and now this

hrf

Titan, let's stay optimistic. It might just be the difference with the 2 machines where it's giving a different picture of the same thing. I just cannot imagine that it could possibly be something new so close to finishing chemo. Please keep us posted. We are here for you.

Titan

Thanks HRF..I'm thinking the same thing also about the 2 machines...the first one never detected the first breast cancer...I had a clean one..then found the lump 6 months later  I still wonder about that....the waiting really sucks though

hrf

Titan, unfortunately, we have all been through this type of agonzing wait so everyone here can emphathize........stay calm, think positive thoughts and I'll also send you lots of positive vibes.

JudyNaomi

Titan - thinking of you all the time, sending you positive thoughts! Please keep us posted.

 Hang in there! Judy x

Titan

Thanks Judy/!  I'm trying to hard to be positive..thinking different machines, the clinic just making sure that I'm Ok...because we are all so "special" now...thinking that a year ago they probably would have said come back in a year but because of circumtances they just want to take a closer look...I appreciate that.  I was the one who asked for the mammo because it had been a year...when I talked to my onc a few weeks ago about having a mamn on the left breast he didn't seem concerned at all.  he said just wait until you are done with everything.  ..even if it does come out bad...this means I have to go through more stuff...maybe another lumpectomy....maybe rads on the left.....I should be glad that there is no lump or evidence of cancer....we "special" people cannot let things go...remember that as you go through your journey..insist on things.........we have to maintain our care also..and not let things slip through,....even though we might feel that it would be better off NOT knowing!

JudyNaomi

We are with you all the way!!!

aris

Oh Titan,

sending you lots of positive energy that it's nothing. I would be really stressed, so I can't offer you any great advice other than to try to remain positive and hope for the best. If it were me, I'd take an ativan and wish the time away, not the best coping skills, but honestly until you know for sure that everything is okay, you are just too close to treatment not to worry, even if you aren't a worrier by nature.

Good luck, try not to stress and here's hoping everything is okay.

 Pam

AmyIsStrong

Titan- we are all pulling for you here. I wish you as peaceful a heart as is possible as you wait out the next few days. The waiting is so difficult. Could you call and push for an earlier appt? Even a cancellation might open up and you could grab it.

It is most likely that they scrutinize things more carefully at the diag. center than the regular place you used to go and they are just being extra vigilant.  I know that my regular mammo place missed my tumor. When I asked the surgeon about how that could happen, all she said is "You will be coming here for your mammograms from now on."  So it is probably just a routine double-check that they want to do.

You are in my thoughts. Please keep us updated.

Amy

BetsyBuzz

Wow Titan - no kidding about the sucker punch. But don't panic. All that worry is negative and just draws on the little reserves you have right now. You need all your reserves. The good thing is that you have already systemically treated the cancer cells in your body. Remember FC hit all your cells...

Like Amy said - call your Dr. and tell them you can't wait. Have you heard of a BSGI (breast specific gamma imaging)? It is a test my surgeon put me through prior to my surgery. It specifically tests for more cancer in both breasts. You might want to ask your Dr. about it.

Hang in there girl. You've got support here. Sending you hugs.

Betsy

lollys

Titan --I agree with Betsy--use your reserves to help you heal--sending postive thoughts--keep us posted--Laura

JudyNaomi

Titan, how are you doing today?

Thinking of you constantly! Judy x

stephanie1

Hello ladies - I am here! Last chemo is TODAY. I can't believe where I have been and now it is coming to an end. At least the hardest part of this journey right.

Pam - I saw my radiologist but didn't have my setups done. I am not sure when I will start radiation actually because I won't see my doc until next week. Sure it will be quick though. I was chosen to move on to the ARM D for the avastin trial so my days of getting infusions isn't over quite yet. Will do 30 weeks every 3rd week of Avastin. So my port isn't coming out yet. I was looking forward to maybe getting it out soon. I have been feeling so much better on the taxol I hadn't chimed in for a while. Always check in though and read how everyone is doing. I am going to need help with radiation soon I know it. The tips I have received here for my chemo was invaluable. I know that this site you and all undoubetly kept me sane!