Update on Brain Mets

[Kavy]

Hi, Everyone,
Here is a quick update. I had a MRI of the brain in April, and the tumor in the cerebellum grew, and 2 new ones showed up, so the radiation oncologist wanted me to do WBR, but I wanted to do Xknife again. Then I saw the neurosurgeon, and he said that the xknife did not work, and scheduled another craniotomy to June 2. I had to wait 3 weeks to wash off Halaven before the surgery. While this, I saw a thoracic surgeon to make sure it was safe to have surgery because of the lung mets and had the preop tests. The day before surgery, I had another MRI and I was ready to go, I even had the fiducious on my forehead, everything ready to go. Then, I got a call from the surgeon's assistant saying that he saw my MRI, that the tumor shrunk, and that he was canceling the surgery because he thought that the growth was necrosis, and that he would follow up with MRI. I was... NOT AGAIN!!!! I was ready to go and get this over, but... I was relieved at the same time. I still have balance problems, my handwriting is horrible, cramps in my fingers, blurry vision. Still on decadron and keppra.
I went to see a neuro oncologist for the first time, and he looked at both MRI from April and June 1, and he noticed that not only the tumors that were radiated with the Xknife were smaller, but also the 2 new tumor that showed up on April MRI, and he said it might be Halaven that did that, and I was WOW!!!!!!!!!!! I can't believe it!!! I do pray and hope that he is right, and that Halaven is proven to cross the blood brain barrier, it would help so many of us. He said for me not to do anything now, like xknife to the 2 new spots, and we will do another MRI in one month to see how it looks. I'm back on halaven/herceptin. Now let's all pray that he is right.
Side effects of halaven: hair loss (shaved my head for the 4th time in 6 years), no nausea, some fatigue, neuropathy getting worse, no neutropenia yet, very tolerable so far.
By the way, before I started halaven, I had a very bad cough, I couldn't talk for a long time without coughing a lot. After 3 treatments with halaven in April/May, the cough is gone, and remember I had to stay 3 weeks without it for the surgery.
Have a great weekend.
KarlaV.

[Kim in DC]

Praying that the Havalen in doing the trick!

Kim

[chrisy]

Wow Karla! Quite the roller coaster! Sounds encouraging- and we will all be crossing our fingers with you! Btw I'm impressed with how you've been able to seek out the "right" people to be in your team! Keep up the good wirk

[Ellie F]

Praying for continued good results.
Ellie

[Sandra in GA]

Karla,
I am praying everything continues to shrink! ~ Sandra

[Rich66]

Gosh sounds like some kind of last minute reprieve
But there may be a lesson in there about giving adequate time for evaluating results..especially with radiation treatments. By the way..I think it's great that they had the spine to stop something so close to being performed. They could have easily just gone ahead.
Has anyone suggested the coughing being a known side effect of Halaven?
Any chance of adding in Tykerb to the Herceptin?

(ok..edit..looks like Halaven may have gotten rid of the cough)

[hutchibk]

Rich, I was going to ask the same about Tykerb... have you ever had Tykerb, Kavy?

[Jackie07]

Sorry for the interruption. Karla has been put on Tykerb according to her posting in March:

"Thank you all for your support, prayers and good thoughts.
I got out of the hospital yesterday, Yeah!!!!!!!!!, but my white counts were still high 18, I still have a bad cough, and I'm feeling very tired. When the doctor came to see me, I put up my best face, and pretended I was feeling great lol, but I though I was going to stay another day. He said to be safe, he should keep me one more day there, but since I was feeling and looking good, he was going to release me YES!!!!!! I couldn't believe!!!! I was so, so happy!!!!

Started my Tykerb yesterday, and slept and rested since I got home. Today I went for my Herceptin, and slept most of the day after I came back. I'm still taking insulin and 2 kinds of antibiotic, besides the other medications I already take. I still have a bad cough, feel short of breath, tired and had mild fever today. Tomorrow I will have a CT scan of the chest, and hopefully things will look better than on the scan they did in the hospital. I will see my pulmonologist this week and oncologist next week. I pray that the infection and this bad cough go away soon.

Did any of you have a partially colapsed lung? Is it painful? I wonder about my partial colapsed lung. I was in extremely pain when I went to the ER, but the pain is gone. Does that mean that my left lung is back to normal? I pray that this is true.
Thanks again for your support. You guys are amazing. God bless you all.

I will keep you updated.

Love to all,
KarlaV."

She did quit after a year according to her May 2nd posting:

"I just started Halaven/Herceptin for my lung mets because of progression, before I was on herceptin/Tykerb for a year. First week I had Herceptin/Halaven, second week just Halaven, this week is my week off. Side effects so far: I feel very tired,but I was already feeling very tired before halaven, no nausea (no nausea medication, when I feel mild nausea, I eat something, and I'm fine), it seems neuropathy is getting worse, thinning of the hair. One thing I noticed is that I'm coughing more since I started the new drug."

Seems these drugs often become effective again after stopping them for a while. But looks like Halaven is doing a good job. Hurrah!

[Delaney]

Best wishes Karla, so glad its working.

[Kavy]

I was on Tykerb/ Herceptin for a year when the MRI found the 3 brain mets. I had Xknife in February, and in March I ended up in the hospital with a lot of pain in my lungs, I had pneumonia and a partially colapsed lung. I was put back on Tykerb/Herceptin, but the chest CT scan showed progression, now the 2 big tumors on the upper left lung became a 6 cm one, plus a progression on the 3 cm in the lower left lobe, and several new small 5mm in both lungs. At the time I had a cough that I felt was getting worse. Then my oncologist stopped Tykerb and started me on Halaven/Herceptin, I sugested him to keep me on Tykerb as well, but he said no.
I also noticed that the cough got even worse when I started Halaven ( I believe this can be a side effect), but after these few treatments my cough is gone. I haven't had a CT scan after I started Halaven, because I had to stop it to prepare for surgery. I do not know when I will have another CT scan, maybe in July, I need to see my oncologist.
Thanks Jackie for helping to answer some of our sisters' questions. You are great.
Thank you all for your prayers and suggestions.
God bless you.
I will keep you updated.
KarlaV.

[Trish]

Pleased to hear the good news Karla. Hope things continue to go well for you.
Trish