How is Sheila?

ElaineM · 11-22-2010, 10:30 AM

Has anyone heard from Sheila? I am wondering how she is doing on the T DM1. I don't think she has logged on since the beginning of November. Sheila if you see this please let us know how you are.
Thanks. Happy Thanksgiving !!

Sheila · 11-22-2010, 08:54 PM

Elaine, thanks for asking about me....I am struggling somewhat right now. Still spending much needed time with my dad....losing my mom has taken a toll on all of us...what an outpouring of love....she was so special.
as far as I go, I had round 3 of the tdm-1, and things are not going well. I have scans next week, but the skin ,mets have progressed quite a bit, and the oncologist said that she is sure I will no longer qualify after my scans. Don't know what treatment will be next, seems I am going through them at a fast pace lately. I have been lurking, just hadn't posted my tdm failure news, as I know so many are waiting for this to be their miracle drug, as I was. Guess it's good that I have been so preoccupied with other family matters...at least I am trying to remain positive
It seems thismhas not been my year....maybe 2011 will bring me some luck. You are always all in my thoughts and prayers, even when i lurk....

Ceesun · 11-22-2010, 10:38 PM

Sheila, I am sorry for your loss and that you are struggling right now. I wish you the best...I am sure there are other treatments possible. I did not realize you had skin met involvement..guess I missed that somehow. Just keep onward, thats all we can do, right?! Ceesun

michka · 11-23-2010, 06:32 AM

Sheila, I am sorry to read you are still going through a difficult period after loosing your Mom and that the TDM is not working as well as we were all hoping it would for you. I don't know what to tell you to do now but I am sure when time comes, there will be a lot of opinions here to share with you. You are in my thoughts. Michka

PinkGirl · 11-23-2010, 07:32 AM

Geez SheilaGirl ... I'm sorry you are struggling. Please stay in touch so we can cheer you on ... I'm always thinking of you.

ElaineM · 11-23-2010, 10:24 AM

I am so sorry Sheila. I hope you get better news after your scans.
Just in case here is a clinical trial for skin mets using Abraxane and a cream called Immiquimod (Aldara)
http://depts.washington.edu/tumorvac...ntific_131.php
There are also other T DM1 trials. One that is interesting combines it with another targeted drug. It is called the Marrianne trial.
Another clinical trial with Tykerb and Pazopanib can be used for skin mets. I don't have the exact link,but the clinicaltrials.gov number is NCT00558103.
I know it is hard to loose a parent. Hugs to you and your father. Peace, good health, love an joy to you. Take good care of yourself. We think of you often and wish you all the best.

StephN · 11-23-2010, 11:36 AM

Dear Sheila -
Naturally this setback is hard to take on top of all the rest.
I think these skin mets are a fairly new development, but seem to be on the march.
Were you able to get a punch biopsy to see if your hormone status has changed on these?

You will be in my thoughts for some better news next week.

tricia keegan · 11-23-2010, 12:20 PM

I'm sorry to hear the treatment is not going well Sheila and just wanted to let you know Im thinking of you and sending good vibes!

Pam P · 11-23-2010, 01:14 PM

Sheila -- I am really sorry to hear that the tdm1 might not be doing its job for you. After all the wait what a let down. I was glad to see Elaine had a couple of good trial/treatment resources - ones I hadn't heard of. There are a growing number of options for us. You sure didn't need to deal with this change in treatment now - and hopefully the scans may give a better picture. You continue to be in my thoughts as you and your family are finding your way in adjusting to the loss of your mom. Hugs to you. Will be watching for updates from you. Pam

Chelee · 11-24-2010, 02:02 AM

Hi Shelia,
I think about you all the time. You have had such a rough road this last yr...something GOOD has got to come your way. I am a bit disappointed to hear about the T-DM1...but for now I'm going to hold out hope that it's just going to take a little longer before it does it's magic on you. (Anything is possible.) I have to admit your onc doesn't sound very positive about it. Damn it! Elaine posted some encouraing links to look at. (Good Job Elaine!)

Like the others...I had no idea you had skin mets...when did those little devils pop up...or dare I ask? I hope your upcoming scans show that T-DM1 has had some effect at slowing things down until you can see what else is out there? I'm with Steph here...have you had a bx to see if things have changed so you will have a better idea what to throw at it? Hang in there Shelia...and know I'm keeping you in my thoughts and prayers always.

Chelee

Lori R · 11-24-2010, 07:37 AM

Dear Sheila,
I am so sorry to hear that you burden is so heavy. I am impressed that you are able to be there for your dad while attending to your own (short term) disappointment.

Please do not hesitate to come here to share your burden. While many of us are sitting on the sidelines cheering on our TDM-1 sisters and certainly hope for great success, smoothing out the bumps in the road is what this site is all about.

Thank you for stopping by. I am praying that TDM-1 is just a little slow in kicking in for you and your next post brings good news.

In the meantime....sending you lots of love and support.

XXOO....Lori

caya · 11-24-2010, 09:30 AM

Sending lots of love and prayers to you Sheila.
Keep the faith, hopefully your onc. will figure out the next great thing real soon.

all the best
caya

ElaineM · 11-24-2010, 10:20 AM

I forgot to ask you if you had seen a good dermatologist about the skin mets? Sometimes a good dermatologist can remove a few of them in the office with local anethesia. The procedure is about the same as a punch biopsy. The only difference is that the dermatologist removes the whole met instead of just taking a sample of the tissue.

michka · 11-29-2010, 12:27 AM

Sheila, although I have been hit over the head I am thinking of you, hoping to read from you soon. Hugs. Michka

rinaina · 12-02-2010, 01:29 PM

Thinking of you and sending thoughts and prayers your way. Hope the drs figure something out that will work on those mets. I know how time consuming family matters can be, being the primary caretaker for my father too. Hope things take a positive turn in 2011 for you, you sure deserve a break.

Laurel · 12-02-2010, 05:51 PM

Sheila,

You certainly have had more than your share of suffering this year. I do so hope and pray you turn a corner in 2011. I wish you peace and health this season. May your new treatment, whatever it is, be one that puts the genie back in the box again for a long time, if not forever.