Nervous Wreck

Nancy, Glad the Pet scan was clear as well as the MRI and mammagram.  6 tumors hard to believe not found on any of the tests. We will all be with you as you go through everything over the next few months.

Hi Nancy,  The PET is clear, that's wonderful.  That this doesn't show up on any other imaging is not surprising considering how sneeky ILC can be.  If toomuch had not posted the link to Rational Therapeutics I would have sent it to you.  I was fortunate that Dr. Nagourney, who founded Rational Therapeutics, tested my tumor tissue and was able to direct my therapy.  Testing like this may provide your doctors a way to try out chemos in the best possible order, perhaps finding the most effective one(s) first and saving you from so much treatment.  Your surgeon could send a fresh sample of tissue from one of your tumors to them for testing.  There is a kit they use to do this, not difficult.   

You are receiving outstanding care from some very good professionals.  It's good to know they are taking such good care of you.  We are all with you.  Again, so glad that PET is clear and you're getting this plan in place.  Hugs, G. 

That is just so weird that nothing showed up on the PET.  Could it be that it's a very slow growing cancer and not much activity??  But it's great that nothing else lit up -- if you got a clear scan everywhere else and no false-positives then that is very good news.

I wasn't aware of the chemo sensitivity testing.  That sounds very enticing for your situation.  Another piece of advice that I would add is to take pictures of the skin throughout your treatment.  When you look at it everyday it gets very hard to recognize changes.  But if you have pictures to compare against it make it much easier to see any reduction.  I had a red rash on my breast that we were watching.  If I had a clue that it would hang around for 3 months then I would have started taking pictures much sooner rather than at the end when it finally reduced.

We will be here for you!!

Nancy, I haven't logged in for a while and am saddened to hear of your recurrence.  You and many of the sisters were here to support me when I started the journey a year or so ago. You will be my thoughts and prayers,. Try to stay positive and strong.  You can beat this beast. 

Marie

Dearest Nancy,

I have not visited this site in quite a while till I read your post and now check it daily again.

UGH...STUPID CANCER. Of course, we all secretly worry this could be ourselves...and a mosquito bite...aaaaaaaaaaaaaaaackkkkkkkkkkkkk. I commend your doctor for such clarity as to biopsy.

I wonder if any of us would even know to think this was something to consider "bad."



I am shocked you said the same thing I asked my doctor about "farming ground" for cancer if I left my boob or taking them all and being rid of it.

If you want MY opinion, I too can share it, but don't want to muddy the waters for you.

I hold you in thought and shudder at the thought of this BEAST rearing its ugly head again.

I hope you have strong family/friends to hold you through this.

I worry on and off and I guess the fear never goes away.

I adore my oncologist that I left behind in Wisconsin (I've moved to Washington State) but we still email and if there is anything you want me to ask him, I would be happy to forward it; it sounds like you have an amazing doctor network....but I worked for a wellness doc before we moved and have email connections...so just say the word.



I wish anything I said would make it all go away. My heart and mind is with you.......and for any of us having to revisit the STUPID CANCER!

Keep us posted.

We love you!

I too remember the posts you made when I first arrived here....we are all sisters walking and talking the walk.

Nancy,

I haven't been on the boards lately so it is with great shock and sadness that I read about this recurrence.  It is the fear all of us carry and pray that none of us have to go through it a second time.  When I was Dx nearly 5 years ago, it was the shock and intense fear that was the hardest part. It seemed that surgery and treatment pailed in comparison of the fears.  I pray this for you too...that the upcoming chemo and surgery will be so much easier than the shock of all this.  I have a T-Shirt that reads "Cancer Sucks" and THAT is an understatement!

I met with my oncologist last week for a check up and he said "well at nearly your 5 year mark, I'm about ready to say your cured."  Granted he said it with a smile and trying to make me feel good but I truly don't know that I will ever feel completely free of the fear that it can recur.  We can't be naive enough to believe it wouldn't happen again. 

You were so smart to have your doctor check these spots and do the biopsy.  You are a wise woman and will get through this crap.  We're here for you!!!

Kim

Hi Nancy,  You will be O.K. with the chemo,  it's no easy thing to do, but you are strong.  I hope you don't mind me sharing some stuff, here.  First of all a little info about the drugs you get.  The Dex. is a steroid.  This is a necessary potent anti-inflammatory that helps the chemo work.  It's like getting the biggest adrenaline rush you can imagine.  When I came down from that, though, it was quite a crash and I found myself to be weeping all the time over even insignificant stuff.  It made me kind of melancholy and sleepy the day after. The Levaquin is an antibiotic that will help fight infection while the immune system is low during chemo.  It also may help the chemo to do it's work.  There again, though, it can mess with your mind.  Some people become sad, have weird dreams, become emotional, etc.  I hope I'm not making you worry, but for me it would have helped me to know that all the emotionality was due to the drugs rather than me just going bonkers or something.  Another thing that helped me was when I found out that Compazine did not work well for me as an anti-nausea drug, they prescribed Kytril.  That was fantastic.  No more nausea.  Are you getting the anti-nausea drug Emend with your infusions.  For me it was in pill form and was taken right around infusion time.  It worked great, too.

I know others will come along to help with the chemo stuff.  It also helps to talk to others who are going through it at the same time.  I didn't know about this board or any groups, so I went through it alone.  It would have helped to talk.  

We are all with you.  Hugs and more hugs, g. 

Nancy,

I have 1 round of chemo left so this is all fresh in my mind. Here are some things that I wish I knew before my first round of AC.

Your scalp hurts before your hair starts falling out.

Ginger candies and sugarless mint gum help with the metal mouth taste. Have some on hand. Eating small frequent meals also helped. 

Taking Claritin daily starting on the morning of the Neulasta shot and continuing for 1 week decreases pain. Have pain medications on had in case the pain becomes intolerable.

 Exercise daily to help decrease fatigue. The fatigue with AC was cumulative for me but at the beginning it lasted 1-2 days and then I had good energy between cycles. It lasted slightly longer each cycle.

Take antinausea medication prior to feeling nauseated. I received IV Aloxi and Emend before my infusions and I took Emend for the next 2 days at home. I also received IV Decadron. I think that they are wonder drugs because I never had any nausea!  

Are you getting AC every 2 weeks? I did and the countdown until completion actually went pretty fast. So, while I didn't feel great every day, I did have lots of good days between rounds and so will you!  Hugs.

Nancy

I had AC as well- 4 treatments.  I am someone who gets nauseous easily and I told them that before we started.  I had the AC, all the steroids and the compazine.... and for me, the nausea was too much after the first treatment.  I was treated on a Friday, was ok on Sat/Sun, then on Monday and Tuesday I was really nauseous.  they adjusted it and I would take an ativan before the treatment and they added some to the infusion and the next 3 treatments were fine (or as fine as these things can be).

I gave myself the neulasta shot each time--one less trip to make.  I worked through treatment but was really careful to wash my hands alot and stay away from sick people.....

Your scalp will start to tingle--it was strange.  With AC you lose your hair fairly quickly--- within 10-12 days of the first treatment.  I had my head shaved before that happened and just wore the wig (I had a human hair wig--looked pretty much like myself).  

I did not exercise during chemo because I always felt slight nauseous---picked it back up at radiation--- but in retrospect, I would have tried harder to do a little something each day-but it was winter and I really was hunkered down-- home, work, kids, sleep.  That was my life.  But it went quickly.

they told me my hair would start to grow back about a month after the end of my last treatment.  It was more like 6 weeks--- and it was about 4 months after that when I felt I could go without the wig.

Other weird things that may or may not happen-- I lost my eyelashes and my eyebrows AFTER chemo ended-but they returned in about a month.... I also lost one of my big toenails, again AFTER chemo ended.  I did not expect these things so they were a shock to me.....

Drinking lots of water during chemo really helps--I thought of it as flushing everything out of my system.

The A in AC is administered by a nurse and they have to sit with you while they do it.... have them do it slowly---make sure you get a MUGA scan before they start so they know how your heart is working....

 None of this is pleasant, but you are right, in a year it will be all over...... we are holding your hand..... 

The best advice I got at the time from a friend was "do everything they tell you" related to steroids, drugs, etc.  they really do know what they are doing.  But, if something does not work for you, let them know-they can adjust.  I was so afraid to tell them about my nausea because I figured I only had 3 treatments left, I could tough it out.... totally unnecessary.  

Please keep us posted.   You will get through this.

Nancy - For some "stupid" reason, I have not checked this forum in quite a long time. I am so shocked and sorry! I don't have much technical advice to offer as far as the Pleomorphic issue, but you know I'm here for emotional support - ANYTIME! I do however think that the last time I checked my biopsy results from my orignial dx - 5 years ago - that my ILC and LCIS WAS pleomorphic. My docs did not place any emphasis of it, though. But all told me to have a Mast AND a prophyl. Can't help but still wonder...WHY they didn't place emphasis on the Pleo part of it? If you need a shoulder or an "ear"...let me know. And if you ever want to get together - for lunch...whatever...just holler! One thing for sure...Illinois girls - do know how to holler. Hugs to you, Nancy!