Help! Brain mets besides lung mets

[hutchibk]

OK, I understand how confusing this would be... but if it helps, a similar plan is how I approached it... successfully for 18 months. I did Tykerb/Xeloda first with very close monitoring. (MRI at month one, then when that one looked good, an MRI 2 months later, then when that one showed shrinkage, an MRI 3 months later showing that they were no longer active, and then continued every 3 months for 18 months... until my TMs started to rise and my 3 month MRIs showed 5 of them had woken up again). I started with 7 mets of varying size between punctate size and 9mm.

At the point that 5 of them woke up and showed activity on MRI, we went in and did sterotactic IMRT on them and zapped them into oblivion. A year later, one more woke up, and we zapped it. I switched from Tykerb/Xeloda to Tykerb/Herceptin.

Just make sure you push for the Xeloda w/ the Tykerb if they want you to try this plan, and make absolutely certain that they MRI/monitor her brain extremely closely at the 1 month interval, until it shows positive results from the Tykerb/Xeloda, and then cautiously move to 2 or 3 month MRIs.

[joyce lutz]

Brenda - so you feel the Xeloda is the secret to success in the Tykerb/Xeloda combo rather than the Tykerb alone? My best to you
Joyce

[hutchibk]

Not necessarily, but I think it's the best starting point with Tykerb. I don't know that it's the key, and I am not qualified to say, but I know that Tykerb was approved in combo with Xeloda first, so that's what years of trials yielded as a very synergistic combination... and Xeloda works to keep the rest of the body in check as well.

[joyce lutz]

I know that Tykerb was approved in combo with Xeloda for brain mets but I can't seem to find out WHY it had to be in combo w/Xeloda. Does anyone here know? Is it because the Xeloda seems to boost the Tykerb to make the Tykerb work better on the brain or is it because it is metastatic disease and they wanted something to work on both the body and the brain? My best to you all
Joyce

[Jackie07]

Karla,

Dr. Yu has a very impressive resume according to the information provided by the hospital. http://www.cedars-sinai.edu/Bios---P...n-S-Yu-MD.aspx

Novalis TX is a new technology of SRS and is more precise and focused (with less side effect) than either Cyberknife or Gammaknife.

Joyce,

Tykerb has always been given along with Xeloda. There are some trials going on right now on giving Tykerb without Xeloda (such as the one combining Herceptin and Tykerb) But physicians are not going to change the protocol until getting those trial results confirmed.

[joyce lutz]

Hi Jackie - My daughter's onc has just prescribed Tykerb WITHOUT Xeloda! That's one reason I was asking the question b/c I too have always read Tykerb was prescribed WITH Xeloda, but I can't find out WHY and if Tykerb by itself will work on brain mets such as my daughter has. I hate to see her waste time on Tykerb alone if it isn't going to work without Xeloda! It such a scary situation. My best to you
Joyce

[Karen Wheel]

Kavy -
Sorry I am a bit behind reading on the site and just saw this. I am hoping you are doing okay --- haven't seen an update for what you are doing for sure - only questions on the doctors on the proceedures ....

When you can give us an update.
Thanks - and hang in there! Karen

[Kavy]

Hi, everyone,
Sorry for taking so long to update.
I got a call from Stanford, and they said i have to remove the tumor before I do Cyberknife. What a disapointment. I saw a neurosurgeon yesterday, and he said he will remove both tumors (cerebellum and occiptal lobe), so I will have a craniotomy next week, I don't know the date yet, then Gamma Knife a few weeks later to zap the tumor beds and another small tumor.
I'm still getting used to the idea. I know that Joan, Barbara, Stephen and Christine know how I feel. Any advices, suggestions for before or after the surgery?
Thanks again for your help. I feel blessed to be part of this beautiful family.

Joyce, I'm sorry your daughter couldn't get Xeloda with Tykerb. I can't believe her doctor didn't give to her. Can't you change oncologists? What about Temador? Praying that she gets the right treatment to help her.

Grace, how are you doing after the Gamma Knife?

Love to all,
Karla V.

[StephN]

Sorry Carla -
But I do NOT understand why they have to remove those tumors BEFORE they do Gamma Knife. I had ONLY Gamma Knife to the tumors. My tumor in my cerebellum was 3 cm, so size was not an issue here.

CourtneyL has had something like 18 spots treated with targeted radio surgery now. Never any open surgery. It would be nice to have a more complete answer as to why you can't just have the Gamma Knife.

This is much less disturbing to the rest of your brain, and easier on you altogether!

Brenda has also only treated the spots without any open surgery. What is different about your tumors?

P.S. A friend of mine here just had cyberknife on 4 spots in her brain and that is the end of it. No GK to tumor bed or whatever.

[Jackie07]

Karla,

I've had a brain tumor surgery in 1990 that took 23 hours and three 'shots' of Gamma-knife radiosurgery in 2001, so I'm generally not worried too much about surgeries involving the brain. It will take some time to recover, but recover you will.

However, a surgery involving the cerebellum can be risky sometimes because the area is the 'life center' responsible for regulating our breathing and other 'vital' functions.

Your neurosurgeon sounded like an experienced veteran in this particular area. I remember how anxious I was waiting for my 'craniotomy'. I hope you have plenty of support at home.

Remember to get plenty of rest (take a deep breath whenever you are feeling anxious) and eat well.

Sending you good vibes.

[joyce lutz]

Hi Karla - Lots of people here are pulling for you so hang in there. I'm sure things will work out. As to my daughter not getting the Xeloda w/the tykerb - she was denied the Tykerb b/c it wasn't written with the Xeloda!! (I had to laugh to myself on this one.) So now the onc is going to write it with the Xeloda (can you imagine?). She did try Temodar previously with Avastin but it didn't work unfortunately. If the Tykerb doesn't work then she will have SRS. I pray the Tykerb works so that we have another option for the future. Let us know how everything turns out for you. My best to you
Joyce

[GracePang]

Hi Karla,
I understand how anxious you are and I would be the same. However, I read so many good stories about craniotomy on this and another site; plus, I know a lady who had craniotomy on Jan. 11 and she was up and walking by Jan. 12. She recovered so well and were sent home right after post-surgery MRI.

Joyce, I am happy to know your daughter's doctor finally agreed to give her X/T. Similarly, my doctor reluctants to give me Tykerb. I will ask him again when I see him on 26th.

My Gamma knife went well. I updated my info on my old thread. My rad onc said no steroid needed; so, I am taking some Bosewalli just in case. I have been feeling good and all three tumors were treated.

Grace

[joyce lutz]

Grace that's great! Glad the SRS went well. Hope you can get the Tykerb too! My best to you
Joyce

[hutchibk]

Hi Joyce... so glad the doc is being forced to write the Tykerb w/ Xeloda. I talked to an onc today who I really respect and he was concerned about the way I described your daughter's situation... he said there is a synergy in the combo that is necessary for the best possible result.

Very good news Grace... please keep us posted Karla!

[joyce lutz]

Brenda - Thanks for doing that. What I'm tryng figure out is if they recommend the Tykerb/Xeloda combo because it works good on the brain or b/c it works good on the body mets? Supposedly tykerb works on the brain but I see no indication that Xeloda does. Anyone know? My best to you
Joyce

[Trish]

I think it is supposed to be good for brain in combination with Tykerb. Rich posted a really good review article about brain mets last year which has a section on chemos as well as radiation and surgery. I think I found it when I searched "whole brain radiation" but I think "brain metastases" will bring it up too. Hope the combination works for your daughter.
Trish

[joyce lutz]

RICH if you see this post could you send me the link to what Trish is referring to? Thanks! Trish thank you too. My best to you
Joyce

[Jackie07]

Joyce,

I think this might be the one Trish's talking about:

http://her2support.org/vbulletin/sho...asis+radiation

[hutchibk]

Miscellaneous info I have been able to drum up:

http://cpharm.vetmed.vt.edu/VM9096/handout.htm

under anti-metabolites (fluorouracil is the infusion/Xeloda is the pill... they are the same drug)
......................................

In chemistry, weights are measured, not in kilograms, but in Daltons. In fact, it turns out that only molecules that have a molecular weight smaller than 500 Daltons can reliably get through the Blood Brain Barrier. Now a molecular weight of 500 Daltons is not very big. Water has a molecular weight of 18 Daltons, while insulin is up around 5,000 Daltons. Viruses (with molecular weights in the millions and billions) are a heck of a lot bigger than this, and bacteria are much bigger again. So in general it's rare for big chemicals, viruses and bacteria to be able to cross the Blood Brain Barrier and get into the brain.
xeloda (Capecitabine) molecular weight - 359.35
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http://professional.cancerconsultant....aspx?id=41058
Study participants had previously been treated with Herceptin, cranial radiotherapy, and Tykerb monotherapy. All patients in the current analysis received treatment with Tykerb plus Xeloda after experiencing cancer progression on Tykerb monotherapy.

• 20% of patients experienced at least a 50% reduction in measurable brain metastases.
• 37% of patients experienced at least a 20% reduction in measurable brain metastases.
• Side effects of treatment included hand-foot syndrome (grade 1 or 2 in 37% of patients and grade 3 in 8%); diarrhea (grade 1 or 2 in 34% of patients and grade 3 in 4%); and nausea (grade 1 or 2 in 22% of patients and grade 3 in 8%).

[joyce lutz]

Jackie and Brenda - Thank you for the info! My best to you
Joyce