Trying not to panic
 

I got a call from the onc. nurse today. My last ca2729 is up 400 pts from last month! A pretty good indicator that this current treatment is already not working.

I'd been on xeloda/tykerb/herceptin/aromosin/zometa since April. At first a drop in tumor markers, then last monlth a 90 increase & now this.

I had a pet scan in early July which showed stable so that's good but obviously something not good is going on.

I don't see the onc. until Aug. 19 and am going in for another tm test a week before that. I suspect my onc. will want to switch treatments. I don't have many options left.

Of course I'm interested in t-dm1 and see from the other thread that it's in Cedar Rapids IA. I live in Minneapolis and I guess that would be the closest for me. How do I start the process of seeing if I could get accepte there?

On the t-dm1 thread I read (by Sheila I think) that it only works for 25% of people! That's depressing - I hadn't heard that before.... even though this is supposed to be a great drug those are such low odds.

For over the last year or more I've been on chemos that I'd had success with in the past: xeloda, navelbine, taxol --- none have worked for long and didn't do nearly as well as the 1st time I had them. Abraxane and ixempra I think are the only ones I haven't had.

I hate this so much and feel so deflated today. "Funny" how one can be having a routine day and a phone call like this can send everything spinning. Now the wait until Aug. 19 to learn what's next.

Re: Trying not to panic
 

Pam, I would not just focus on that 25% figure.
Apparently follow up testing has been performed on candidates that partook in the trials and it was learned that those that more closely matched trial's entrance profile indeed had better reponse rates.
http://www.medpagetoday.com/MeetingCoverage/ASCO/20498

Re: Trying not to panic
 

Pam,

Sorry for the high number on your tumor marker. But I'm glad you came to the Board to share it with us.

Schoonder is right. Don't focus on the figure. You probably heard me talking about it more than 10 times: "Positive thinking leads to the release of endorphin which leads to stronger immune ability and better tumor control..."

Sending good vibes your way...

Re: Trying not to panic
 

Pam, I can relate to how one phone call can instantly turn your life upside down and spinning in the blink of an eye! Argh! I have personally talked to Dr. Slamon about T-DM1 and I really believe this drug is going to be a magic bullet for so many here. I'm not sure where that 25% came from? But if it is correct...someone has to fall in that area...why not you. :)

Wasn't it Esther that was doing so well on TDM1 until she had elevated liver enzymes and had to drop out of the trial. But my point being...Esther had went thur so many chemo combo's like you...and this turned out to be a magic bullet for her until she ran into the liver issues with the drug. So always hang on to hope. If there is anyway you can get into a TDM1 trial...I would certainly go for it. Have you called Genenetech and double checked to make sure there aren't any other TDM1 trials that may of opened up closer to you? I will be keeping you in my thoughts and prayers for a good trt options that will blow your cancer cells into smithereens ! They lose every time...and they will again! Sending lots of positive energy your way.

Chelee

Re: Trying not to panic
 

Pam,
I am so sorry you are facing this. My hope for you is that you get on the T-DM1 as soon as possible. When I finished my initial treatment, my onc. told me, "Not that you need it, but if you do there is a new treatment (T-DM1) that is being very successful." I believe that 25% number is coming from trials where it has been given to all BC patients, not just the ones who are HER2+. When getting one of my treatments, I met a young lady down at Mayo in Jacksonville who was in the T-DM1 trial down there. She was doing great and said there were no side effects. I don't know how far you will have to travel, but I am sure this will not detur you. Lots of hugs!!!
Sandra

Re: Trying not to panic
 

Pam-

I am so sorry you got that call and news. I think of you so often and marvel at your strength and generous spirit...you are always lifting all of us up.

The most exciting thing about the article Schoonder sent is the quote that T-DM1 "is beginning to stand out as a treatment for women who have been heavily pretreated for metastatic breast cancer."

Sending you hugs and prayers, Pam

Maureen

Re: Trying not to panic
 

Pam, I just wanted to check in and tell you that you can do this!
Many prayers and lots of belief in your victory! Luv ya, ma

Re: Trying not to panic
 

I have my fingers crossed for you Pam !!
Here is a number you can call to see if there is a T DM1 center close to your home.
1-888-662-6728 Genetech Clinical Trials
or
clinicaltrials.gov
TDM4884G
Take good care of yourself and try not to worry too much until you see the oncologist.

Re: Trying not to panic
 

Just wanted you to know you are in my thoughts. Warm hugs. TmD-1 is the new hope and made for you. You have had many treatments that have held you over till.. TMD1 was ready. We all hope and pray that this will prove to be another Herceptin. We need to find out where you need to go to get it.

Re: Trying not to panic
 

Hi Pam,

I am sorry that you are going through this. It is so scary. I got about 7 months out of TDM1 and then on to Doxil... for 3 months. Now I am on to Ixempra after progression on Doxil. I start Ixempra tomorrow.

When I went on TDM1 the screening was much tougher that early trials.

I wish you luck on your findings.

Love, Hope, Peace, Carolyn

Re: Trying not to panic
 

Pam, ask your onc what they think about a small measure change... switching your aromasin to tamoxifen (which I had already been on for a year at my initial dx). It has worked great for me since April, when we saw my TMs rising and found a small spot on my adrenal. TMs have dropped and adrenal spot is stable and a little smaller. I am on everything you are, except Xeloda.

Abraxane is also on my "to do" list along with Gemzar and Navalbine... and TDM1.

TDM1 EAP is available in Cedar Rapids, about 4 hrs from you.

Re: Trying not to panic
 

Sorry for your unwelcome phone call.
A call like that will send a person scurrying for the next treatment.

Here is some info from the Clinicaltrials.Gov web site:

Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561

Contacts
Contact: Trial Information Support Line888-662-6728



This is the same phone number that Elaine kindly posted, but this also has the identifier number.

Just tell them you want to contact the Cedar Rapids location to get the ball rolling. Their number was not on the site where I looked.

Brenda does have a good suggestion. And I am wondering if the TM is picking up a lot of dead cell material, since the scan was basically stable. That happened to me, but I did not have a number that high.

Re: Trying not to panic
 

I am praying for you Pam...sherry

Re: Trying not to panic
 

Thank you to everyone for your kindness and support. It means so much.

Thanks Elaine & Steph for contact info on t-dm1 access. I will start calling this week to see if it's possible to arrange a screening. Then I can take any info I get to my onc. on 8-19.

It sounds like t-dm1 would be my most optimistice choice. But in case I can't do that now for whatever reason, what do you think would be my next best treatment options now?

Brenda you mentioned just switching aromosin to tamox. or something similar - a small shift in meds. My onc. might agree since my July scan was stable. I'll ask about that.

I have not had abraxane, doxil, ixempra. Are there other options I haven't had that I'm not aware of?

If I can find a treatment that can hold me at least until early 2011 ---- then hopefully as I read somewhere on this board - t-dm1 might be available to all.

Carolyn - please let me know how the ixempra goes for you today.

Chelee - that was Irene from Tampa who did so well on t-dm1 until she was eliminated from the trial for liver enzymes issues. Our hearts all broke for her when she was denied to continue that. I know with the liver issues she no longer fit the criteria of the trial so they eliminated her from the study. But I was never clear though - was the liver issue a sign that the t dm1 wasn't working for her at that point anyway or was that something that if it wasn't a clinical trial situation she would have just had to manage and continue.... and might be with us today?

Thank you all for your great wisdom and encouragemnt. Pam

Re: Trying not to panic
 

Pam,
So sorry to hear about the disconcerting TMs.

As we know....waiting is the worst, so I think you should start dialing for data....I encourage you to make contact with the TDM-1 folks in Iowa. Even if you don't use it, understanding who to contact and how you would go about entering the trial would provide you with another option. You know, our fall back lists that we love to keep.

If you decide to give Abraxane a try....I'm a cheerleader for it. I was on it for 18 weekly cycles. It was very tolerable. In my office, there are women that remain on it for extended periods of time.

The positive aspect of TMs is that you have this time to gather options, ponder how YOU want to manage this disease and have some ideas lined up before you speak with your Onc.

Thinking of you so much...Lori

Re: Trying not to panic
 

HI Pam,
I do not have any suggestions, but I hope that the T-DM1 trial will work for you at some point. Irene was taken off the trial because of one of her liver tests. If this drug had been approved she could have gone back on it. It had been working for her when she was forced to discontinue it.

I was on this drug for two years and it was still working when I had to go off the trial due to the side effect of lung inflammation. As far as I know, I am the only one who has had that effect. Nevertheless, I could still use it again with caution when it becomes available.

Best wishes,
Barbara

Re: Trying not to panic
 

Pam
I am so sorry you are back in the treatment change stage yet again....I also think you should persue the TDM-1 EAP, but also keep Ixempra or Doxil as an option...maybe even the metronomic chemo to "tide you over"....I will know tomorrow if mine is working as I have scans again...but I am feeling much better, walking alot and think that this might be shrinking or at least controlling things for right now....and it is pill form Cytoxan and Methotroxate combined with IV Herceptin..I am half way through my 3rd cycle with this combo....stay strong, the right treatment is there for you, its just finding it....when I am in "treatment exchange" as I call it, I keep thinking of the wise proverb, you have to kiss alot of frogs before you meet your prince!....kind of the same with the chemo merry go round....they have to shoot you with alot of stuff before the magic bullet is found.
You are in my prayers pam for quick resolve in finding your magic! You so deserve it!

Re: Trying not to panic
 

This T-DM1 extension trial is now conducted at eight sites.

Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01120561



Contacts
Contact: Trial Information Support Line
888-662-6728




Locations
United States, California
Investigational Site
Recruiting
Highland, California, United States, 92346
Investigational Site
Recruiting
Stockton, California, United States, 95204
United States, Colorado
Investigational Site
Recruiting
Denver, Colorado, United States, 80220
United States, Florida
Investigational Site
Recruiting
Davie, Florida, United States, 33328
United States, Iowa
Investigational Site
Recruiting
Cedar Rapids, Iowa, United States, 52403
United States, Michigan
Investigational Site
Recruiting
Detroit, Michigan, United States, 48201
United States, Missouri
Investigational Site
Recruiting
St. Louis, Missouri, United States, 63141
United States, Tennessee
Investigational Site
Recruiting
Nashville, Tennessee, United States, 37203

Re: Trying not to panic
 

Pam,
I am so sorry you got THAT CALL. I also can't give you any more advice on your treatment options, except to say the other ladies are right on letting you know that there is something that will work for you.
Hopefully, TDM will be available to you and work it's magic.
Thinking of you and sending you positive thoughts,
Emelie

Re: Trying not to panic
 

Can not add any advice but my care and support.
The trial has worked for several of my friends for
now and everyone has added new suggestions.
Whatever you and your Dr. decide to do good luck
and prayers for you.
patb

Re: Trying not to panic
 

Hi Pam~
I'm so sorry to hear this. Add my prayers & hugs to list of many sending you comfort.
You've got lots of options to explore, including TDM1. I've just gone through the 1st stage of screening, have a couple of more tests today (echo & CT) to be evaluated before I'll know if I'm in for sure or not.
If there's any info about the process that I can share with you, please let me know. The research nurse at the site I'm going to in Nashville has been incredibly helpful, working diligently to make sure all previous scan dates, wash-out from treatment, etc all fall into place and don't cause extra delays. I'm sure you'll find the same with anyone you contact. They're very compassionate and understand the importance and urgency for those of us exploring the EAP.
Hang in there Pam. Please keep us posted and once you have a plan, you'll feel more confident and hopeful.

Keep the Faith~

Jessica

Re: Trying not to panic
 

Dear Pam,

I'm so sorry to hear this. I'm sending hugs & positive thoughts your way. Thank you so much to replying to my lymphedema post. Since I've gone back to work it went to my hand so I've been avoiding typing at night so haven't been on the site much. Your kindness meant so much to me. Please know what an inspiration you are to people like me:)

Re: Trying not to panic
 

Dear Pam,

Thinking of you and hoping that some of these suggestions will help you find the right answer. I am in awe of all the wisdom in this post. I can barely figure out my new digital TV remote and these wonderful posts chart the way to contact and research your next step. Wow, I am always impressed. All I can do is send love and hugs and positive vibes.

Catherine

Re: Trying not to panic
 

Hi --

Catherine, like you, and I am in awe of all the wonderful wisdom that has come through these posts too. I'm so grateful.

An update - not related I don't think to the almost 2800 (YIKES) ca2729 -
I've been dealing with extreme diarrhea for over a month - tried altering diet (BRAT), then imodium, the script for lomotol (same as imodium but more potent I think) neither did much. Then I started taking citrucel tabs to. In the course of this I developed a rash. First appeared on back of head, scalp, across shoulders. Itched like mad. Went to dermatologist - he couldn't say cause, but gave me script for ointment. That helped and cleared up my back within a week. But then a rash started breaking out on my upper arms, both upper thighs, and a little on abdomen. So I used the ointment again, but it was bad. Plus a new development - my left eye lid got red and my upper lid and below my eye became greatly swollen then the same thing to my other eye. I have this big bulge under one eye almost the size of a walnut sometimes and the other eye is not as big. I don't want to leave the house because I look like hell. Also vision is compromised because of the swelling when my eyelids won't open all the way. What a mess.

I went to another dermatologist last Friday. Keep using ointment on body. New script for face ointment. Put me on 40 mg of predisone for 5 days. Today will be day 4. Rash seems duller/better - no change yet in face. This doc told me to stop the lomotol/imodium - said possible rash/swelling but rare. She also thought it might be caused by nutritional deficiency due to long term diarrhea. Asked about new products, drugs, foods - nothing seemed too suspicious.

Went back to onc. yesterday because of course he wants to check this out too. He had no ideas on the rash, face, but said to stay the course with the derm. I had him take blood tests to check my vitamin levels and he did another ca2729 and chemical panel.

I had been holding the xeloda but will start that again today as the diarrhea seems improved. But I think I'll be off the xeloda/tykerb soon given my tm's. I see the onc. again on 8/19. He's thinking/checking about next treatment steps. He isn't in favor of the small switch that Brenda suggested, or the metromonic that Sheila suggests. Wants to make a totally different switch (abraxane, ixempra, doxil) I think are the only ones I haven't had yet. He's also having his research nurse check out tdm1 expanded access but said since my disease is not considered measurable in the bones I might not qualify even in ex. access. I'm going to call genetech today & ask about the one in Cedar Rapids IA - I could drive there.

Sorry to go on so long... there's just been a lot of stuff going on and I'm not getting any answers. Thanks for listening.

Re: Trying not to panic
 

Pam, what an avalanche of crummy symptoms. So sorry you are having to deal with all that. It's even worse when you have to wonder if the meds addressing one issue may be causing another one. You are one strong lady.

I'll keep my fingers crossed on getting into a TDM1 study - I'm pretty sure there were some people here in one of the earlier studies with bone-only; maybe this will not disqualify you. For heaven's sake, you would think that with the TM activity plus bone mets that would give them plenty to "measure".

I'm also glad to hear your onc is thinking/checking out options. Good to have the support and someone who is working with you, not against you.

Hang in there, and know that many prayers are surrounding you.

Much love
Chris

Re: Trying not to panic
 

Pam,

TDM1 EAP does not require you to be having mesurable disease. I think you can easily get accepted, please try it soon.

Julie

Re: Trying not to panic
 

Pam,
So sorry you are having all those miserable things! I just want to say that I also don't think you have to have measurable disease to qualify for EAP. Go for it and stay strong.
Take care of yourself and know you are not alone.
Emelie

Re: Trying not to panic
 

Your courage and determination shines through all you have written, Pam. My heart goes out to you and I am praying that things will soon get better. I'm going through new mets too and as I expressed concern to my oncologist, he assurred me that there are new treatments all the time and soon cancer will be like diabetes: a controllable chronic illness. It gave me hope so I am passing it on to you along with love and sincere prayer that you will soon find the new treatment you need. Please keep us posted. Hugs, Tricia

Re: Trying not to panic
 

Dear Pam,

Adding my prayers and best wishes. I really hope you get into TDM-1 and it works magic for you!

hugs,
shobha

immune issue?
 

Pam,
I am a frequent reader of this wonderful board, but post very infrequently.

I read your post today about the rash and eye problems. I am wondering if you should see a rheumatologist because I had similar symptoms and ended up being diagnosed with a very serious autoimmune disease called polyarteritis nodosa (PAN) vasculitis. The came 3 years after my Stage 3A HER2 cancer diagnosis in 2005. I am fine now, but it was an awful illness - and one, I learned, that is very often overlooked.

It's a long boring story, but I now realize that, in particular, my eye problems were a precursor of vasculitis. I have very dry eyes - often red and needing drops - and two times have gotten this awful thing called scleritis where the sclera (or clear lining over your eyeball) got inflamed. As a result, I got this huge sack of fluid above a bit above and below my bottom eyelid. It looked AWFUL, was painful, and hurt my vision. I took steroidal creme and it cleared it up, but I now know it was a sign of vasculitis.

There are many forms of vasculitis - many types are similar to Lupus - doctors often overlook symptoms like loss of weight, general lethargy, rashes, etc. because they can stem from other things (chemo, general malaise, panic over mets, stress, etc.) Here is a link that explains the various types of vasculitis: http://www.vasculitisfoundation.org/book/export/html/24
If you scan through them, you will see that several of the types involve skin rashes and eye problems...

Of course, I am no doctor, but I do know the feeling of desperately wanting to get an inkling of what could be causing some symptom. And for sure, none of us want to add another doctor to our list, but if your problems continue, perhaps it might be worth thinking about.

God bless you during this difficult time - I am thinking of you and praying for us all -

Jane

Re: Trying not to panic
 

Pam
Really sorry that you are having to deal with all this c**p. The last post on the board seems very sound particularly the possibitity of an autoimmune element. When you think how chemo challenges the immune system maybe it's not surprising that this type of things happen. Keeping my fingers crossed that this gets cleared up soon and you can get T-DM1

Ellie

Re: Trying not to panic
 

Dear Pam -
That was a hard post to write, I can see. But you know we all care and hope for the best no matter what is happening.

I hope you can get some answers to your various symptoms and can stop feeling like a freak show. With a bulge that large around your eye, dark glasses may not work.

Have you considered the possibility of c.diff ? It is a bacterial infection that is like having a long case of the runs. It needs a special test to diagnose. And needs special drugs to treat.

My sister got a case of this when she took antibiotics for a sinus infection. If your system gets thrown off balance, the c. diff can take hold. Anything can set up the conditions.

Could the rash be MRSA? The persistence of your rash makes me wonder.