Optimum Treatment After Resection of Brain Met

[Freakzilla]

Hi Everyone,

As some of you know my Girlfriend had a solitary 4cm brain met removed via crainiotomy nearly 4 weeks ago. The tumour was completely removed. Body scans as of 6 weeks ago was completely clear.

As we understood it, the onc was then going to ask for a SRS boost to the area, and then maybe WBRT. Upon seeing the Onc last week this has now changed. They now recommend just WBRT. We are awaiting a referral to see a Rad Onc, but this might take 2 more weeks to speak about the best way forward.

Upon diagnosis the onc also said they would restart Herceptin. This has now changed. They now don't want to restart Herceptin now because Perjeta Is only licenced in the UK to be used with Herceptin and Taxotere in first line treatment of secondary Breast Cancer. Basically is we start Herceptin now, we won't be able to use Perjeta in the future if needed.

We also discussed lapatinib plus capecitabine and they completely dismissed that it crosses the Blood Brain Barrier. We would of had to pay for this privately.

Annoyed is an understatement. Nearly 4 weeks has passed since surgery and nothing has happened.

Is there a timeframe in which a boost or WBRT must be done?

Originally we wanted to have a SRS boost to the area and save WBRT in case it was needed in the future. Now we're completely confused.

Any thoughts advice would be appreciated.

Thanks

[toomuch2lose]

Hi there, did they say why the plan changed It does seem strange to me that you have not yet visited the rad onc or started the radiation planning. My understanding is that there is an optimal window (I think within 6 weeks, but I am not sure) to start radiation after surgery. I would be inclined to push to have the appointment right away so that you can discuss the change and whether WBR is really the ideal way forward. I think that the newest school of thought argues for surgery followered by SRS if the number of lesions is small. Sorry to hear you are having these hassles when you are already dealing with such a challenging situation.

[Freakzilla]

We've got the appointment to see the Rad Onc on Thursday. Hopefully get everything sorted then.

[KeriK]

I would push for the SRS over WBRT.
Maybe the onc is thinking there are microscopic tumors in other places in her brain??! Let's pray there is not. But that is the only thing I can think of for why he would want her to do WBRT.
I know in the U.S., they always deny drug coverage the first time, then once they get additional paperwork from Drs office, it gets approved. This just happened to me for my Tykerb recently too.
Or try reaching out to Glaxosmithkline, for compassionate use

Best of luck. She's lucky to have you

Keri

[Freakzilla]

Keri, thank you.

Does anyone the optimal time to have Wbrt or Srs boost after resection?

[marvass]

IT herceptinmight be another option

[agness]

I was told SRS 4-6 weeks post resection, to let things heal first. You need to do planning at least a week or so before. I waited until week 7 to start since I had guests visiting at 6 weeks and my kids were back at school by then.

Do you know what her brain lesion was like consistency or vascular-wise?

Like you, I wanted to save WBT for later since it is known to affect cognitive function. That recent study from this year on the Fred Hutch site says multiple SRS is a great way to manage brain mets.

My neuro-onc wanted me back on Herceptin, and suggested using a lumbar puncture to see if the drug was getting in through the BBB. I've done two lumbar punctures now, one week apart, looking for circulating tumor cells or evidence of Leptomeningeal invasion (LMC) but so far all clear. I'm not on any targeted therapies right now.

I'm thinking of delaying my third lumbar puncture for some weeks as it isn't showing anything useful right now. Statistically the odds are high for LMC. Empirically we know that my cancer responded with a PCR to systemic TCHP. Adjuvant Herceptin was hard on my system ultimately, giving me migraines (never had before tx) and causing my limbs to ache day and night, though no evidence of heart damage. I would rather do aggressive monitoring and then jump on it at the first sign of spread with Intrathecal therapy and consecutive systemic therapy to try to knock it out completely.

They just don't know anything and the odds are awful for central nervous system mets but they keep dishing out the same crap and expecting different results -- that's a sign of insanity, right?

[I got 5 LINAC frameless SRS treatments, about 2 weeks later I started shedding from the treated area]

I hope this is helpful.

[Freakzilla]

Thank You, Big Help as always.

[Rolepaul]

SRS can be done if there is further progression. Nina had hers done initially and then again 90 days after surgery. I think it is worthwhile to see if IT Herceptin will be available as Marvass indicated. France is starting to perform a few of these. The goal would be to not have WBR do to the side effects.
I agree on same treatments and expecting different results. I broke the mold and so did Marvass. Fight for what is right for your partner.