Staying Sane During Wash-Out Periods
 

Hi, everyone,
I am in the process of selecting a new protocol and have a three-week wash out period. How do stay sane? I feel so naked! It's going to come down to staying at the same facility and doing Tykerb/Xeloda or moving and possibly getting the T-DM1 (50% in randomized trial). I should know by week's end. For now, I am coasting. And I'm not happy. I feel like these liver mets are going to dog me. They hurt! I started the Fentanyl patch and got so high I had to quit it! Took me a day to get over the queasy feeling.
Let me know some of your secrets of sanity while deciding...what do to next...and handling the burden of how important that decision is.
Thanks
Karen

Re: Staying Sane During Wash-Out Periods
 

I am sorry you are not feeling well.
I wonder if a nutritionist, dietician or integrative medicine doctor at Memorial Sloan Kettering can suggest a diet plan that will make your liver a little less angry or painful while you wait to see what is next on the agenda?
Everything we eat, drink etc. is at least partially processed through our livers during the digestive/elimination process.
Just a thought since you are having problems with the meds your doctor prescribed.
I hope this helps. Take care.

Re: Staying Sane During Wash-Out Periods
 

Thanks, Elaine. I've seen the nutritionist and I do everything right. It's more about what I think is going on without any medicine...the mind...if you know what I mean!
Karen

Re: Staying Sane During Wash-Out Periods
 

Karen,

You are in my thoughts and prayers. You are strong and smart. You are a survivor. You have proven it time and time again. You will choose the right path. The path that will allow you a very long life.

I don't know if it will help you or not, but every time I start to get "crazy", I say out loud "Thank you God for restoring my body to PERFECT health!" I smile when I say it. I "feel" perfect when I say it. Then "feel" the feeling when the doctors tell me I am in perfect health. I have it written on the bathroom mirror. I have written it on my hand...in sharpie... when I'm too stressed to remember what to do. Sometimes I just have to say it over and over again until I can breathe.

My friends and family are used to hearing me say it, but I do get some funny looks in public sometimes...

Re: Staying Sane During Wash-Out Periods
 

Karen,
Lots of ppl that enroll in these trials hate that 21 day wash out period. (Our minds get a chance to run wild.) Everyone that I've talked to that has enrolled in a clinical trial have all stressed about the wash-out period...so your not alone. It's a scary feeling. Believe me I do understand where your coming from on this. I was offered this same trial at UCLA and when the wash out period came up that was the 1st thing that really made me nervous.

The trial coordinator will keep you pretty busy with all the scans, labs and other things. Keeping your mind occupied is the secret. Watch funny movies, read,...do anything that's distracting. (Easier said then done.) Then just as your liver thinks all the drugs are out of your system it will get a sneak attack and be bombed with T-DM1 or T/X! It doesn't stand a chance. Time will fly by...I realize that's easy for me to say. Ask your onc for a different pain med. I don't like those Fentanyl patchs at all. Maybe a low dose of oxycontin. There is no reason for you to be in pain. Hang in there...you will get thru this. Those liver mets don't stand a chance.

Chelee

Re: Staying Sane During Wash-Out Periods
 

Karen
Think of the wash out period as a time to let your body recoup to be ready for the next assault. I'm sure your next treatment will be able to cope with any regrowth of the tumours during this waiting time. I remain very hopeful and I hope you feel better soon,
Trish

Re: Staying Sane During Wash-Out Periods
 

Dear Karen. I understand how you feel. You did well to post. I am sorry you feel pain because then your mind stays on the worst ideas. I hope your doctors will think of other pain killers. It's important.
I was going to write to you today to ask how you were and give you news. This morning I have an additional reason of thinking of you as a WTC survivor. Karen, you went through a lot and you will succeed again. We don't write much about our fears and distress. But I am not different. These weeks to wait are difficult. I am happy you are starting the trial process. This is wonderful news. Is it the Fairfax trial you investigated about?
On my side after my liver resection it was clear I needed chemo. But I had so much digestive problems I had to wait a month and my markers are slightly raising. I was so worried about these 5 weeks between the end of Tykerb/Herceptin and chemo. I started Herceptin/Navelbine on Friday. I had a lot of nausea and burns and thought I would never be able to continue but I feel better today.
Karen concentrate on the trial. You will be closely watched. You will have to prepare and that is really good news. I am sending hugs and hope that in your next post you will at least tell us you feel less pain. Michka

Re: Staying Sane During Wash-Out Periods
 

Hi Karen,
I can't offer anything about the wash out period but I know you are preparing to really knock out the pesty liver mets and will be back to NED. I can't wait to see your updated signature.
This morning when I woke up to the news, you came to my mind as a survivor and now you are surviving again. One strong Lady!
Sending along Hugs, Prayers & Love,
Kris.....

Re: Staying Sane During Wash-Out Periods
 

Hi, everyone,
Thank you so much for your responses. You are truly helpful. My news as of today:
1) I do not qualify for the trial in VA, as I must have exhausted many protocols: Adriamycin, Tykerb and Taxol. I have not.
2) I am planning to enroll in the trial at a local hosptial (T-DM1 vs. Tykerb/Xeloda) and see where that leads me. So far, I qualify. Just would need a brain MRI.
3) Tykerb/Xeloda are available as standard of care of my usual facility and I might just stick with that because my comfort zone is there.
I don't know. I don't know. I don't know. The burden to make the right decision is huge and confusing.
It's true, I've been a survivor, and plan to beat this, too. Just so much on my head right now. The experience with the Fentanyl patch didn't help either.
So, my dear HER2 family, thank you for all your advice. It all means much.
Love
Karen

Re: Staying Sane During Wash-Out Periods
 

Hi Karen
Thinking about you from across the pond.I know you will chose the right option.
You survived the WTC atrocity and I have just heard the recent news from America.Stay strong we will get our cure!

Ellie

Re: Staying Sane During Wash-Out Periods
 

Hi Karen:

I would vote to go on the emilia trial so you may get the tdm-1 arm. They will scan you in 6 weeks - should you get the tykerb/xeloda arm. I personally progressed like wildfire on t & x.

I was not on the trial, but my onc, thank-goodness did scan me in 6 weeks. If it is any help at all, after a 2nd opinion when I got my liver mets last Jan, we went w/mild chemo's and herceptin. The Navelbine really helped the most - but, ultimately, I mildly progressed. Now, the Ixempra/avastin is working.

I feel very confident to say that you will find something that will work!

HTH,
Kim

Re: Staying Sane During Wash-Out Periods
 

I am struggling with the same issues, thoughts, feelings. I think being in the free fall zone is a tough place - trying to make the right decision is equally tough. We are expected to weigh in with docs who have spent their lives becoming experts. I think it would be weird if one weren't anxious and confused - maybe as simple as sometimes you have to deal with the darkness so that you can walk into the light. I think you have two issues - how to manage pain and how to decide what trial. I would try the one where you might get TDM1. I totally understand going outside of your comfort zone - that would be very hard for me, too. I like the same place, the same nurse, etc. etc. Hang in there - the right choice will come to you!

Re: Staying Sane During Wash-Out Periods
 

I agree with SoCalGal. Hopefully you won't have to wait very long for the trial to start.

Re: Staying Sane During Wash-Out Periods
 

Hi Karen
I would also vote for the trial. I would just ask how often and how they assess how the treatment is working. Big Hugs. Michka

Re: Staying Sane During Wash-Out Periods
 

I was hoping for the TDM-1 trial also but they saw a suspicious spot on my brain so I wasn't eligible. Started on tykerb/xeloda had scan 2 months later & mets in right lung gone, sternum nodes gone, trachea nodes gone, small amount in lower lobe of left lung & bone mets (mixed response). So all in all, the T & X are working so far. Oh, after a brain MRI, the spot was nothing so I could have had the trial. Having my PET scan 5/17/11 & of course I am stressing already! Good luck in your decision - from what I hear either would be good. Gail

Re: Staying Sane During Wash-Out Periods
 

Love you, Karen.

Joan

Re: Staying Sane During Wash-Out Periods
 

Karen,

Thinking of you and sending all the good wishes I can find. You are brave and I wish you did not have to walk this bumpy road.

Hugs, Catherine

Re: Staying Sane During Wash-Out Periods
 

Karen,

Trust that you will make the right decision for you at the time - good luck,

Jenny

Re: Staying Sane During Wash-Out Periods
 

The wait is over. After 28 days and no trial despite all prerequisite testing for the T-DM1, I am on Tykerb/Xeloda/Herceptin. Picking myself by the bootsraps and forging on.

Love you, too, Joan. Thank you everyone in my HER2 family here. What a wonderful forum.
Karen

Re: Staying Sane During Wash-Out Periods
 

Karen
Just knowing that you are on something is a good feeling...I remember the stress waiting during the washout period for the TDM-1...it was so nerve racking....waiting to get the new drug, because the old drug was no longer working...but in the meantime, you feel like a soldier without a weapon. The after only 3 treatments of TDM-1, I was taken off.....what a roller coaster we are on.
I was on Tykerb Herceptin and it worked well for awhile for me...another good combo was Xeloda Herceptin for me....we are all different, but heres hoping this is the right drug to kick the mets for you right now! There are so many more, just finding the right combo is such a ride! Keeping you in my thoughts and prayers, and sending you a big hug and positive vibes that this is "the one " for you....stay strong!