Trying not to panic - Page 2

jml · 08-05-2010, 06:09 AM

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

vlcarr · 08-07-2010, 10:42 PM

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

Catherine · 08-09-2010, 10:30 PM

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

Pam P · 08-10-2010, 05:41 AM

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.

chrisy · 08-10-2010, 07:36 AM

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

Julie2 · 08-10-2010, 08:09 AM

Pam,

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

Julie

Emelie B · 08-10-2010, 08:20 AM

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

TriciaK · 08-11-2010, 07:53 AM

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

Shobha · 08-11-2010, 08:39 AM

Dear Pam,

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

hugs,
shobha

08-11-2010, 09:19 AM

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

Ellie F · 08-11-2010, 10:05 AM

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

StephN · 08-11-2010, 11:40 AM

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.