More good news on brain mets

[Johanna Johannsdottir]

Hello my friends overseas,

I had a CT sscanner last week. Now I´m NED in the liver and the brain mets are getting smaller (vanishing). My onc. is so happy: Everything we do is working, he says.
My health is good and I feel good (except the typical regarding the age). I look good (people say) and I believe them. For last 3 months I have worked half time, writing interviews and articles of all sorts. I live 50 km outside Reykjavik-capital and try to find intresting people here near me so I don't have to drive to work (over a slippery and snowy moor and mountains). With phones, internet and e-mails one can work wherever.
In the beginning of new year I´m going to work full time.
My son is happy waiting for Christmas and presents, like any other 8 year. So we are just decorating and baking traditional cookies when he comes from school.

I wish you all merry christmas and a happy new year.
Jóhanna in Iceland

P.S.
I will continue Herceptin weekly, Femara daily and Zometa every 4 weeks.

P.S You think we will have white christmas here in Iceland?
No, like recent years it will surely rain with 10°C.

[tousled1]

Congratulations Johanna! Seems like the chemo cocktail is working! Of course you'll have a white Christmas. Enjoy it with your son.

[mts]

Wonderful news Johanna- so good to hear you are doing so well.

Have a very, merry Christmas !!!

Warmly,

Maria (MTS)

[heblaj01]

Jóhanna,
The latest good news on your progress in fighting back your cancer are indeed pleasant to read.
The most impressive part,in my view, is the regression of the brain mets with the regimen of Herceptin, Femara & Zometa.
In principle, Herceptin is not able to cross the blood brain barrier. So it is not likely to be the key to your successfull treatment.
I can't find definitive answers as to what Femara can do for the brain: one web site states that it is unknown if it reaches the brain. The Novartis web site (manufacturer of Femara) says that the drug is widely distributed in the body but does not mention specifically the brain. Even if it drastically reduces the circulating estrogens outside the brain, it is now known that large quantities of estrogens (estradiol alpha & beta) are secreted in the brain by nerves in the hippocampus.
I found only one definite mention of brain mets successfully treated with Femara:
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
Letrozole for brain and scalp metastases from breast cancer--a case report.
Al tried to find answers to the same questions from Forum members but the answers are inconclusive :
http://www.her2support.org/vbulletin...ad.php?t=19324
Brain mets and hormonal therapy

So your success calls for an explanation since, if you are not a special case, your onc may have found a combination treatment applicable to others.
Could you ask him for his thoughts?
Did you weaken the blood brain barrier in some way(without the help of radiotherapy)?

[Becky]

Congratulations Johanna and Merry Christmas and a Happy New Year

[tricia keegan]

So nice to hear some good news,especially regarding the brain

mets as my friend has just found out her cancer has progressed
to her brain.
It gives such hope to all of us to share your good news,thank you.
Happy Christmas!

[DEBBIE S]

Johanna, Glad to hear of your GOOD NEWS ..... What a great Christmas present both for you and your family ...... Merry Christmas and Happy New Year !!!!

Debbie

[Mary Anne in TX]

Such wonderful holiday news, Johanna! Merry Christmas and happy baking!

[Johanna Johannsdottir]

Hello again an thanks for answers,


Heblaj01. Sorry, if I´m misleeding you but I forgot in this letter to talk about WBR I had in july, because for me it´s over and done with.

2002. jan. dx mastectomy. 25/25 nodes pos. er+pr+ , chemo, radiation and tamoxifen.

2005. aug. dx in bones. Put on Femara/Navelbine. Checked for HER2 and pos.
2006. jan. dx in liver. Stopped Femara/Navelbine and put on herceptin/taxotere 17 sessions. Liver was clean after 12 sessions.
2006. jun/jul dx. with four brain mets. 10 sessions of WBR. Stopped Taxotere (1 session left) Started Femara again and weekly herceptin.

CT-scan 12 of july shoved clean liver and I also had MRI. That was because I had asked another onc. (mine was away for holiday) june 23. to order a brain scan to check my brain because I was feeling strange in my head and had bad headaches. June 25 My sister took me to ER because of my status, talking nonsence etc. DX. that day with 4 brain mets. After six days the WBR started.

My onc. was back and gave me the results 13. july. He was surprised to see the brain MRI of course. Then I had 3 more times to go and he said that this was surprisingly good responce to treatment.
Another scan on liver and brain in sept. was good and then again this one 13 of desember. My tumor markers 15.3 was down to 77 in oct. from 147 in july. I will have another blood results next thursday.

As I was told by my onc its a theory that radiation activates herceptin, but whether it cross BBB I'm not sure. Everything in this combination is apparently working well.

There is alot of Q&A in this field.

Again sorry if I misled you all but I had previously posted my status. Things like this happens to people like me who think they are well known (Paris Hilton, Britney Spears and Johanna?)

Best regards,

Jóhanna

[rinaina]

Just what we needed....some good news for a change. So happy to hear the chemo cocktail is working. Keep up the good work. Happy and Healthy Holidays.

[heblaj01]

Johana,
Thanks for clarifying this important fact that you had WBR.Based on the post by Lani (http://www.her2support.org/vbulletin...ad.php?t=26300) which shows that Herceptin can in some circumstances cross the blood brain barrier, the likelyhood is increasing that Herceptin is responsible for your brain mets disappearing due to the possible action of WBR in weakening the barrier.
If that is the case you may have made a contribution toward proving the feasability of a new way for Herceptin to control brain mets.
In any case congratulations for your successfull outcome!

[heblaj01]

Johana,

I mentioned in a previous reply that I did not know if Femara was able to cross the blood brain barrier. Well, I checked with Novartis,the drug manufacturer, & they told me that it does penetrate the brain & spreads as easily as in other parts of the body.
They are aware of a few cases where it appeared to be beneficial against brain cancer but there is no clinical data to prove it scientifically.
But who cares if it works for you in addition to the other drugs in your regimen!

[Swimgirl]

Hi,
I am not completely new to this board but I haven't posted in a long time. I wanted to share my good news in the hopes that it helps someone else. I have metastases in my brain and spinal cord and am Her2+. My spinal cord (not bones) metastasis has been with me since 2002. It was resected then irradiated. It grew back and I had stereotactic radiation to the spot in June of 2004 and Feb. 2006. I then developed brain mets (24 of them) last winter. I had whole brain radiation from Feb-March 2006. I initially had a good result. 4 brain mets were left at the 3 month follow up MRI. But new ones appeared at the 6 month follow up and the spinal cord tumor had grown some more. I started lapatinib and Xeloda through the lapaptinib compassionate use trial in September. When I had follow up MRIs of my brain and spinal cord this December, all spots in the brain had either shrunk or disappeared completely and the spinal cord tumor shrunk for the first time since 2004. I was so happy! I thought I was running out of options.

I wanted to share this so that the info might help someone else who is Her2+ with brain mets.

Happy holidays to all!

Elizabeth

[Johanna Johannsdottir]

Hi girls,

Thank you Heblaj01 for the information and congratulations to Swimgirl. Good news are incouraging for us all.

Best regards,

Jóhanna