Update After My 4th Treatment
 

Hello all -

I completed my 4th treatment of Her/DM1 and was ok'd by my onc to go ahead with number 5.

My CEA tumor marker has come down from somewhere at above 1200 to 295 taken this last time. The lymph node in my neck that we could feel is almost gone. My CT are still pending since I switched locations of where I get them done and my onc wants to speak with the radiologist regarding one tumor in particular that he reported showing bigger but my onc. thinks that is incorrect. Since this trial requires CT's and I can not take the Iodine contrast, they can't get the best view. I want to see if we can throw and Pet scan in there soon and see what that shows.

In anycase, my onc feels I am responding and we will continue with our plan. We are very happy about that news.

I am still getting fever right after I take my treatment which makes me feel lousy. I just had my 5th treatment last Wed. and by today the fevers are gone, which is great since I usually have them for about 6 days.

I am hoping to perk up out of this funk I have been in all year. I just seem to be tired all of the time but yet all of my blood work is perfect. I am thinking that so much chemo has taken is toll on me now. But I will pounce back, just need to get out of my house and do something fun for a change.

This seems to be a good combo of drugs and pray that all of you get a chance to get on it if you come to that point.

PINK GIRL - thanks for checking in on me. I have not been posting much lately and was hoping to bring some good news to the board.

Everyone take care.

Irene, I am happy to hear that the trial is working for you. The tumor markers going down that much is great news. Just wanted to let you know you are in my thoughts. Sally

so good to hear from you, Irene, and especially since it's good news. It's so wonderful that you are responding to the DM1 trial. Congratulations. thank you for taking time to let us know. God bless, ma

glad that things are working good!

I am very happy that you are doing well with this treatment. Keep up the good work!

Irene,
I've been waiting (patiently!) for your update as I knew it was time for scans...
It sounds like good news and I am delighted! I would also, if I were you, push for a PET scan, especially if it is difficult to get good views with a CT.

I hope this news has you feeling better. I can relate to the fever and feeling yucky. Although it sounds like it is hitting you even harder, I do feel crummy for several days and even worse, I feel emotionally down - probably because not feeling well physically makes me thing about the enormousity (is that a word) of the battle.

Keep it up, my friend,
Chris

Dear Irene

Super news. The neck node is telling you a great story that the drug is working for you.

Rest up so you can take a quick trip to somewhere fun. You deserve it.

That's really good news Irene. Thanks for taking the time to let us know.

Many blessings...

Mary Jo

Hi Irene,
I'm so glad to hear that the trial is working. It's interesting that you and Chrisy are reporting fevers. I am somewhat tired after spending so much time at the Dana Farber after teaching all day. I don't get home until about 8:00 in the evening. The next day I am somewhat tired at school, but I still feel fit enough to work. Although my dosage is higher than the phase two trial, I wonder if the weekly trial is easier to handle.
Best wishes,
Barbara H.

What a wonderful news! Thank you so much for sharing. Pretty soon the trial will become standard and more people will benefit from it. We love good news!

Irene,

I am so happy that the tx is working. I am saying a prayer for continued success with this and that you will have a renewed energy. I hope that you are able to do something fun soon!

Lexi

hallelujah Irene!! Keep it up girl!

great news irene on the tras-dm1 .. keep it up..

run to live

Irene
 

Sounds just great, Irene. Ceesun

Irene
I am overjoyed at your good news...you have been on my mind and in my heart....may this success continue for you...you are always in my prayers for a stable time when you can relax....

Irene,

I'm very happy to hear that your tumor markers have dropped significantly and that your tumor and neck node are shrinking.

I'm not sure what a PET/CT would show, but you'd have to get more clarification from your onc. The PET part lights up a malignant nodule at about 1 cm, to be reliable although in some cases it could be as small as 7 mm). The CT scan shows nodules as small as 2-3 mm, but I understand your point about the contrast. Also, for a combined PET/CT, which is nuclear imaging with the FDG isotope, the CT part is without contrast anyway. It serves as a roadmap for the PET part, giving more definition to all the organs.

I know you've had a lot of treatments and it's a lot to tolerate. It's wonderful that the smart bomb seems to be working really well.

Joan

Dear Irene -
If your body is tired of chemos and treatment that would not be a big surprise!
You have been the epitome of the Energizer Bunny all these years, plus continuing to work.

Now you have shared some great news. That TM number is dropping like a rock and I know the new numbers sound good to you, too!

How often are your tumor markers checked?? When I was on active treatment for my liver they checked my markers with my bloodwork every week. The good numbers comforted me a lot when I was feeling whipped from the treatment.

Irene,

Thanks for updating us - it sounds like you are responding well to the treatment.

I'm sure it's a drag for you, no wonder you have been in a funk for awhile - but brighter days are ahead, I'm sure.

all the best
caya