Chemo starting in December 2010

MS Jag - I have taken the Ambien CR (ambien regular put me to sleep but didnt keep me asleep).  The Ambien CR gave me nasty nightmares which can be a side effect.  Other than that nothing noticeable, but the nightmares would wake me up and then I would be so groggy I would fall back to sleep just to start them where they started.  So no more Ambien for me.  Benedryl and the compazine seem to do the best and none of it is great.  I have just decided that I will take whatever sleep I can get and be grateful for that.  I have certainly gotten caught up on a lot of things at 3:00 in the morning.

Last DD AC this Thursday and dreading it badly.  I like the rest of you should be relieved but not feeling it.  I was the one who tried to get everyone on board thinking this was part one and we would be done and now I am the one that can't get the thought of another 12 weeks of this crap outta my head.

Still in turmoil over the rads and not sure what will make me turn the corner.  The RadOnc of course is going to be an advocate of it, its his lifeline.  Lets face it honestly he gets to count his stats based on whether I am alive in 5 years or not.  His stats will not refect if I die in 12 due to heart failure.  I don't mean to sound so pessimistic, just realistic.

Good luck to all this week who are going through treatment.  Congrats to us that are on the last round and to those of your between treatments I hope the SE's are wearing off and you can enjoy the week.

Leigh

I was just on facebook, looking at pics of my beautiful friends, with their beautiful hair, and beautiful bodies, and I started crying... I know it's not true, but I feel like I will never be that again, I have all these friends who are my age, and gorgeous and full of life cause hell we are in our 20's and 30's, and I'm rocking a hat or scarf, and i just don't feel all that pretty right now. I know part of it is nerves about chemo tomorrow, but I just want my life back!! I want to have parties, and have my awesome hair back, and not have painful hemmorhoids, and pee in my sleep. I just want to be my young self again, and I feel old and tired. All the time. This is not a good night.....

I complete my last round of E and C yesterday and the usual trepidation of going was softened by the knowledge that it was my last one.  In two weeks I'll be on Taxol, once a week for 12 weeks. My onc said I wouldn't need Emmend because the Taxol does irritate the gastrointestinal lining like the first drugs.

I will soldier through the next two weeks with the patterns and pills with which I've learn to cope but then this part will be over.  In the last number of months, there are few things that I have accomplished or gotten a sense of accomplishment from. But I do have that sense about going through part I of chemo.  It was one of the most difficult things I've ever gone through.  But is times like these that we have the opportunity to see a honest reading of the measure of our inner strength and courage.

The first round was the most difficult because of my reactions to the nausea drugs.  I felt like the nausea was always around as constant as the air.  I also felt it breaking me.  But once I got the drugs rearranged, I was able to handle the occasional nausea, the Ativan caused great tiredness and drowsiness but it was a willing trade.

Not that I go out hunting for challenges that will help me grow, but when they present themselves so profoundly like this, it would be a wasted opportunity to not use them for learning about myself, how to make myself emotional stronger, and how to reframe my life that I don't waste as much of it as I feel I wasted between my 20s and 50s.  

I'm sending healing thoughts to  you all as your go through your treatments.  Best-

Maria 

     

Just got done with FINAL DD AC TREATMENT! YES!!!

just one question though, on the taxol. has anyone heard of using it weeklyx8 instead of 12? my onc said they only do the weeklyx12 if you have herceptin. I am er/pr+ and her2-. So it was my choice to do it 4 doses at every 3 weeks, or, 8 lower doses given every week.  The doc said the weekly will definitely help with the side effects of nerve damage and other SE's.

any thoughts? getting kinda excited cause that means chemo is cut off by one month!!!

Eban-there will be many, many prayers and healing thoughts coming to you tomorrow so that your numbers will be high enough to do your chemo.

Hi All - got my second dose of Round 2 today - parp on Thursday and then I am 1/3 done with the trial.  Got more encouraging news today re: response - lymph node is so small now she can barely feel it (was 1.5 cm) and the tumor is smaller, and now getting so soft it's harder to find the edge to measure...both good signs.  Feeling hopeful tonight after spending the last few days convincing myself that it was getting bigger....asked my onc if she would mark her edges with a sharpie so I have a referenve for when I'm checking.....she thought I was joking....I'm bringing a sharpie to my next appointment.

I also asked her about the study re: timing of the taxanes.  She had read it.  Guess it came of of MD Anderson.  For what it's worth, her thoughts were:

1.  It is based on somewhat older data, many of those patients weren't dose dense for example, and that change did good things for survival rates.

2.  She said that there have been no head-to-head studies comparing the different approaches and that's where you would get more clear data - head-to-head comparison of current treatments with MD Anderson's approach (aparently they tend to do taxane first followed by FEC)

3.  She didn't think many oncologists were going to be changing their current treatments based on this assessment of non-current data unless more info came out that was more relevant to what's being done today.

Note that my doc is Telli at Stanford and she pretty much focuses on TN so perhaps an onc that does more receptor postive treatment might have a different take on it.  I have a second opinion doc that will do my post-trial adjuvant treatment so plan to get her opinion also when I see her again.  

Wide awake, guess due to the decadron, so am going to take advantage of it and fold some laundry.  Took a campazine and those make me fairly sleepy so hoping I'll feel like heading to bed soon.  Hope everyone has a good week.  Hang in there nolaa  - love the HP analogy - we are huge fans here at my house.  Sammolisa - hope you avoid the worst of the bug you've been exposed to.  hdangelbaby- my onc also said that she would recommend the 12 weekly.  Apparently you get a slightly overall larger dose and you hit the cancer every week so it has less time to try and recover before the next dose.  But, it does increase the time and i'm sure we are all counting the days til the chemo is done!

Take care and hugs to all,

Dlcw

I did Taxol 3 years ago in 2008. As we know eveyones experience is different than others. The SE's for me were mild compared to the others especially with nausea and vomiting and  constipation.  I did experience SE's that bothered me. My fingernails turned brown and started breaking in the middle. I super glued them until the new nail grew back. I experienced nueopathy in my feet. My onc gave me Lycria which did help. My rbc were low so I did have to have two blood transfusions. They made me feel so good once I got them walked out like a new woman. From my rbc I was weak and experienced shortness of breath. The good thing is my hair started to grow back. Those are what I experienced from Taxol. I wish you the best!

Hi All!

I go in for my second round of TC tomorrow. Se's weren't too bad the first time...tired, a bit nauseous/acid reflux, "morning sickness!" 

My hair started to come out in handfuls last Saturday...I had to wear a shower cap to make dinner, so I had it shaved on Monday night. I had 2 bud lights before and 1 during. I was so glad a friend volunteered to drive me! I wore a wig to work on Tuesday...ugh! Itchy and just uncomfortable. Tonight I am going to the look good/feel better workshop. If I look like "aunt jemimah" in my scarf, so be it! It's soft and comfortable!!!

I've had trouble quieting my mind so I can sleep...with the hair loss and upcoming chemo. I took a vicodin about 7pm last night...went to bed at 9pm and slept till 6am!  My doc didn't suggest or offer any sleep meds...I appreciate knowing all the se's you've experienced while taking them!

 To those of you doing your chemo tomorrow, I'll be right there with you! (with bags of frozen peas on my fingernails and toenails!!!)

Make it a GREAT Day!!!

Hi Ladies....Sometimes when I feel sad about my hair I pop over to the Hair, Hair, Hair thread and obsess over peoples pics of their own hair growth post chemo.  It gives me hope! 

lindaa - soooo sorry to hear the AC isn't working.  Hoping and praying that the new one works.  Don't they say visual therapy works?  Sit down with crayons and draw pictures of the new meds killing the cancer cells!  My theory on this cancer adventure -- try everything!

Lindaa - so sorry the AC didn't work for you - hope the new stuff is what you need.

Joystars - I so admire your ability to just deal with all this - I can't imagine how I would have coped with this diagnosis immedately after the birth of one of my children.  I love your husband's idea of the hat party and I hope the plumbing issues are resolved quickly so you can settle back into your own home.

ebann - YEAH chemo!  I have a friend in the trial that has had to delay 2 weeks and she got started again this week too - we had a small celebration today in clinic for her.  

 I had the second dose of PARP today, finishing round 2 - 4 rounds to go.  Saw more shrinkage this week, not as dramatic as the first week but still trending in the right direction.  Feeling pretty good tonight and looking forward to 10 days off.  

hope everyone has a good night and weekend - I have to go scramble and get the house clean enough for the cleaning lady to come tomorrow!  Otherwise she won't be able to accomplish anything as you can't mop/vaccuum floors that are covered with cr@p and shoes and dog toys and laundry......

dlcw

Ladies I am so sorry for those of you that are struggling but so proud of how tough you all are.  This week has been an emotional roller coaster with a couple good meltdowns.  Just feeling pretty beat up and out of control.  I have always been the one to be there for everyone else and I am trying to not change that but don't think I am succeding all that well. 

Had my last dose of DDAC today and should be celebrating but keep thinking of 12 more weeks.  I am also all about visualizing and put my Mike Dooley "Notes from the Universe" in my car CD player the other day to get me focusing on the good things and the future of happiness.  It does make me feel better and if I can just commit to taking 10 minutes to myself and just close my eyes and see myself in the things I want for my future whether it be material things or just "happy places" it will make a huge difference.  Kinda like meditating but focused on something specific rather that just floating.

I had a talk with my RAD ONC clinical trial team and I am attaching what they emailed me at my request.  I don't know how much it helps me but maybe it will give you gals some relief.

Leigh,

Please see Dr. Sawyer's response below. I also followed up with him in person and asked him to elaborate. He said heart damage was a problem in the past because they technology at the time did not allow them to direct the radiation precisely. So the heart received radiation. But the technology has improved vastly over the past ten years allowing him to only treat the targeted area and avoid the heart and lungs completely. He stated there are no studies evaluating cardiotoxicity with the current radiation technology because current therapy does not treat the heart. In regards to the Varian radiation machine in Washington, he said is essentially the same machine. We have a Varian which is only a few years old. He said it is the software for planning that allows the Varian machines to be so precise and the software here is updated regularly. We just had a software update this past summer. The technology referred to in the article that monitors the breathing is present in our machine as well. He emphasized to me that he would be more than willing to sit down and talk with you in person should you have more concerns.

Hope you all have a great weekend.

Leigh   - Sunny and 56 degrees...there is hope

linda, my heart is with you. Please stay strong woman... hopefully trying something new will help. Big hugs your way!

hopefortomorrow, how did the appointment go? hope everything is fine your way

dlcw, thank you for your kind words:)  Actually I got diagnosed BC one day and the next day I was supposed to have an MRI scan early in the morning when surgeon called to stop us. After a blood test that was taken the day before, it showed I was pregnant! Since then our whole world changed, that week was craaaaaaaazy! Mixed feelings from an inmense happiness that we were pregnant and a deep sorrow and sadness as we were not sure we could keep the pregnancy because we were not quite sure yet what stage of cancer we were fighting with....... And here we are now, almost 9 months later, I have my lovely Vida in my arms!  I might be bald now... but ooooh yes it worth it

About the hair... I found the wig quite good to go out but after long periods of time my head gets a bit sore and started to get dry skin. Found that using my baby's hair brush is an amazing massage supplier! (of course I got a new one for her now)  Seriously, try it! Is just amaaaaaaaaazingly good! I feel like in a way activates the blood circulation on the scalp and also removes the dry skin and rest of hair... a bless!
Also I had an appointment with general doctor today and commented about my new baldness and dry skin and he recomended NOTHING! He said, "hey your head has never been bald before, right? So of course is taking time for your skin to get used to this. If you want,use some aloe vera and that's it". So I bought a 96% Aloe Vera gel that I used on my scalp to fight the itchiness, it works good too!

Hope everyone is having a good Friday and wish you all a very nice weekend!

doing ok on this new drug.  Just a little tired so far.  Slowly getting my appetite back from the AC.  I finally managed to lose a few pounds from it all.  I'm going to try and use it as the boost I needed to keep my weight going down and not up!

I was reading through posts - for those worried about taxol, it should be a much easier ride than the AC.  I really had almost no issues except for a little bloody nose from the avastin. Take l-glutamine powder to help prevent the tingling fingers.

On the hemmoroids - be careful that is what it is and not developing a small tear.  Don't ever push too hard if you are constipated.  remember your skin is more tender now and that includes down there.  I take Colace - a stool softener - which makes sure that pressure doesn't build up.

On the hair - i really don't care for wigs.  I wore one once for a wedding.  Scarves don't seem to be for me either.  I have settled on baseball caps - DH calls it the Janet Jackson look, and also on these little fleece skull caps.  Lands End sells them. They carry them at Sears now.  They were on sale last week for around 6 and I wear them all around the house.  I have been so cold since losing the hair.  I sleep with one too,.

congrats to all those finishing their ac and moving on to the next phase!