First scan TDM1

[michka]

Hello Everyone.
I had my first scan after 2 cycles of TDM1. The 5 or 6 tumors in the lungs shrunk one or two mm and one 4mm. The largest tumor is now 11mm. The one tumor in the liver shrunk 3mm and is now 14mm. The 3 nodes in my abdomen and in my thorax shrunk between 3 and 5mm. So the good news is that there is regression of all tumors. I must admit however I was hoping for more. I know, I know, first I am lucky to be in the trial, then for some, TDM1 does not work at all. But you know how we are! We want to get rid of these stupid mets! I think I will really know in 6 weeks, with my next scan, if the tumors continue to shrink or if it just stops there.
The 2 first infusions were a little difficult although nothing to do with hard chemos of course!. I had nausea the first week of the cycle but the worse comes on the second week. I had intense fatigue and pain in my chest. It did not allow me to stay up more than a couple of days. The doctors said they did not know what it was since my heart is fine. It's hard to believe. When I say "fatigue" it is because I have no other word. In fact it was like missing red blood cells (it is not the case) plus having run so much that your thorax hurts with pain. Did anybody have this? Does someone have an explanation?
and it is not stress...
I had my third infusion last Wednesday. It is much much easier than the last time because I have less nausea so I hope the body is adjusting and that I will not have pain on week 2.
I do hope TDM1 will be released soon for everybody. And Pertuzumab also!
Love to all. Michka

[NEDenise]

Michka,
All that shrinkage sounds very promising to me!!
I hope this next round is easier for you.
I'll keep my fingers and toes crossed for the next scan in 6 weeks!
Take good care of yourself!
Denise

[schoolteacher]

Glad to hear from you, Michka.
Glad to hear about the skinkage.

Amelia

[KDR]

Good, good news, Michka! Warm hugs to you! Going in the right direction...
Love
Karen

[StephN]

Sorry to hear that you felt bad. Have you checked for symptoms others may have reported?

Wondeful that your body won out with the shrinkage. And seems nothing new was seen on the scan. Another positive point.

Six weeks will be around Bastille Day, so we will look forward to the tumors having been "stormed" by the TDM-1!

[michka]

Hi Steph. I like the idea of giving some more blasts to the stupid tumors in order to dance in the Paris streets on Bastille Day!
As for the limitation and pain in the thorax, some women here reported "pessure" on the thorax. Maybe it is the same side effect. I would like to understand what it is. I first thought it was my heart. Is it stress on the heart? The lungs? Nerves?
Michka

[caya]

Michka,

Shrinkage is good (unless you are George Castanza, and you are not -:) )!

Keep your spirits up, those stupid mets have only begun to expire...

Hope you feel better too, and the pressure eases.

all the best cherie,
caya

[chrisy]

Mkchka,

Sounds like some very promising initial results!

My experience with tdm1 was that I had what I called "flu like symptoms" , fever, achy etc for a few days after infusion. The first infusion was worst and subsequent infusions were not as bad or sometimes not at all. My disease was only in my liver, and I remember a few days after my first infusion having intense pain in my liver, so intense I couldn't breathe. It lasted a few hours then went away. At the time, and I still believe this was screaming cancer cells dying. "pain at tumor site" is an occasional side effect of herceptin you know.

My onc found that "interesting" but of course could not really attribute it to anything.

On another note, part of the mechanism of action of herceptin, and presumably TDM1, is to elicit an immune response. Your immune system reacting to the invading herceptin antibody. Symptoms of this might nclude fever, achy...

I'm not claiming any of this is what you are experiencing. Just sharing my own experience on TDM1.

But overall, I think it's possible that what you are seeing are good signs, barticularly beginng with the scans. My oncologist always says "the proof is in the pudding" (wherever that expression came from!), and shrinkage is a good thing!

[sarah]

Bonjour,
so happy to hear the tumors are shrinking and expect to hear you were dancing in the streets of Paris on Bastille Day!
Sorry about the chest pain, hopefully that will get look at in more detail.
Rest, don't push yourself too hard.
Paris looks cold - we've been watching roland Garros on the computer and everyone's bundled up!
hugs and love sarah

[Pray]

You are in my prayers sweet Michka! I'm so glad they are shrinking! Peace