Brain Met
 

Bad news the result of the MRI from yesterday showed a 4cm Brain met on the right hand side of the brain. The hospital then did a full body CT scan and it came back clear. The initial diagnosis 2 years ago was Stage 3B, ER+, HEr2+.

The results have been sent to Kings College Hospital.

We now have to wait and see if they will perform surgery, or radiosurgery.

My girlfriend is only 32, can't believe this is happening.

Can I ask everyone who has been through this, what is the best course of treatment?

Thanks

Re: Brain Met
 

I don't have advice but just wanted to say I am so sorry about what your girlfriend (and you) is going through. I am sure someone who has had experience with brain mets will respond soon.

Carol Ann

Re: Brain Met
 

I'm so sorry but there are many ladies here who have fought brain mets successfully and I'm sure they'll be along soon to offer advice.

Re: Brain Met
 

I'm so sorry to hear this news. For me personally, it is brain mets that I fear most. To have to face this news at 32 years of age must be real tough.

I do know that there are several folks including StephN who had/have brain mets and are doing well. There are also others who have been getting IT herceptin treatments and have also responded well. Hopefully, they will see your post and respond with some recommendations for you.

I will keep you and your friend in my thoughts and prayers.

Take care,
Brenda

Re: Brain Met
 

Try sending StephN a pm as I'm sure she'd be happy to help you with advice. I do remember some of the ladies saying they were pleased to do Gamma or lazer knife rather than whole brain radiation so maybe try googling that and I wish I could help you more.

Re: Brain Met
 

Hi,

Brain mets are scary. But they are highly treatable. Below is one of the threads about brain mets. You can find more (threads/postings) by using the 'search' button on top. As you can see in the discussion, quite a few of our members have experienced brain mets and many of them have gotten rid of them by using a variety of treatment methods.

http://her2support.org/vbulletin/sho...ain+metastasis

Re: Brain Met
 

Sorry to hear you now have brain mets as part of the diagnosis to deal with.
When I had gamma Knife for a 3cm tumor in my cerebellum, that was the size limit for that kind of radio therapy treatment. I know there are other options now and I hope they can try cyberknife or another non-invasive treatment. Depending on the location they may try surgery and then some sort of radiation to the surgery site.

Let us know how things are moving, as I am sure treating her brain will be the priority now.

As Bonnie here always says, Keep the Faith.

Re: Brain Met
 

Hello Freakzilla -

I also had brain mets - three total, found last December. All treated with SRS. Other than having the dex steroids change me into a raging lunatic, the treatment worked very well. It's super scary to hear the words brain tumor, but they are very treatable. There are several options to treatment. All the best to you and your gf.

Re: Brain Met
 

Thank you everyone. Hopefully Surgery or Radiosurgery will be able to be done.

Just got to wait now.

Re: Brain Met
 

Hi, I'm a met-ster. I have several. I wanted to commend you the support your are giving your girlfriend. It's undoubtedly a scary time for the both of you. My husband also started coming here for advice for me but "dropped out" because he was saddened to hear of progression. (But if you need a positive thread, read the one about StephN and her 10 years of NED after brain mets, my husband loves that thread!) So I'm here using his username. Both of you will get through this. There are many brain met-sters here and we have all opted for different types of treatment. It might take different combos or new drugs/therapies might be available. My advice is to read about it all and choose what fits best for her. Please keep us posted. I always think about my brain mets sisters. All my best.

Re: Brain Met
 

Thanks, has anyone had good success with WBRT?

Re: Brain Met
 

Hi, this was posted by Lani last year, might be of help:
for those choosing between whole brain rad therapy and stereotactic (gamma or cyberkn
ife) the following, fresh off the press, may help in your deliberations. Obviously, only a radiation therapist with expertise can advise you as to whether your tumor is "limited" and whether there are likely to be other sites involved, whether the size of your lesion is best dealt with one way or the other, but this is the first time I have seen objectified evidence of visible changes which occurred with wbr but not with srs (with one exception in the article below)


J Neurooncol. 2014 Dec 2. [Epub ahead of print]
White matter changes in breast cancer brain metastases patients who undergo radiosurgery alone compared to whole brain radiation therapy plus radiosurgery.
Stokes TB1, Niranjan A, Kano H, Choi PA, Kondziolka D, Dade Lunsford L, Monaco EA 3rd.
Author information
Abstract
Delayed toxicity after whole brain radiation therapy (WBRT) is of increasing concern in patients who survive more than one year with brain metastases from breast cancer. Radiation-related white matter toxicity is detected by magnetic resonance imaging (MRI) and has been correlated with neurocognitive dysfunction. This study assessed the risk of developing white matter changes (WMC) in breast cancer patients who underwent either WBRT plus stereotactic radiosurgery (SRS) or SRS alone. We retrospectively compared 35 patients with breast cancer brain metastases who received WBRT and SRS to 30 patients who only received SRS. All patients had evaluable imaging at a median of one year after their initial management. The development of white matter T2 prolongation as detected by T2 or FLAIR imaging was graded: grade 1 = little or no white matter T2 hyperintensity; grade 2 = limited periventricular hyperintensity; and grade 3 = diffuse white matter hyperintensity. After WBRT plus SRS, patients demonstrated a significantly higher incidence of WMC (p < 0.0001). After one year, 71.5 % of patients whose treatment included WBRT demonstrated WMC (42.9 % grade 2; 28.6 % grade 3). Only one patient receiving only SRS developed WMC. In long-term survivors of breast cancer, the risk of WMC was significantly reduced when SRS alone was used for management. Further prospective studies are necessary to determine how these findings correlate with neurocognitive toxicity. WBRT usage as initial management of limited brain disease should be replaced by SRS alone to reduce the risk of delayed white matter toxicity.
PMID: 25445836 [PubMed - as supplied by publisher]

Re: Brain Met
 

Thanks You.

I'm not sure if it will be too big a lesion for Radio Surgery. I Hope not.

Re: Brain Met
 

as understand it, It was explained to me 18-19 years ago by the neurosurgeon @ Stanford who invented the cyberknife) the cyberknife's specialty is esopecially well suited for large tumors because its pin point accuracy let's a surgeon go back and zap the tumor in several sessions without overradiating nearby spots because the positioning is not exactly the same each session even when gamma knife is used with a "halo" and any overlap of fields between sessions opens the possibility of nearby areas receiving too high a dose.

cyberknifes appear to be available @ PA, The Royal Marsden Hospital in London, England, The Barts Cancer Center at St. Bartholomew’s Hospital in London, England, the London CLinic and the Harley Clinic

Hope this helps.

Re: Brain Met
 

Thanks Lani,

So if a tumor is say 5cm in Diameter it could be treated by Cyberknife over multiple sessions?

Re: Brain Met
 

I had a small egg-sized tumor that developed after successful systemic therapy last year, also stage 3B. My life was endangered and my tumor was at the back of my brain on the cerebellum so I had emergency surgery three weeks ago. Ideals I much better than before as the edema, vomiting and painful chronic headaches were crazy difficult. A craniotomy isn't a walk in the park though and it has been very fatiguing on top of the illness my tumor caused prior to my operation.

I'm due to have SRS in a few weeks.

I read up a lot about HER2 brain Mets and current articles from June this years at with new targeted therapies that all bets are off for us -- that our survival might trump anything seen before.

My oncology wi be doing actice monitoring going forward include g spinal taps to look for circulating tumor cells as well as scans. We won't step up treatment until it is called for as targeted therapies are hard on the nervous system and body. A little like walking on eggshells but for now I have less disease than I have for months, I'm feeling a lot better and so Im focusing on building my body back up to prepare for any eventualities.

I saw a naturopathic oncologist at the start of my diagnosis and his additional blood labs showed deep deficiencies in serum zinc, ferritin (iron stores), magnesium (red blood cell magnesium us more definitive) and D3, plus crazy high levels of copper. In my situation it was extended breastfeeding and being an older mom trying to do too much that seemed behind my disease formation. I recommend getting these levels checked so you can work on trying to correct imbalances. In my case cutting back on copper containing foods (shellfish, coffee, chocolate, avocado) and pushing extra zinc (60mg a day) was able to deplete the copper. Supplementing actively and slowly with magnesium on top of my healthy diet helped to correct that deficiency. I'm still working on boosting my iron levels but I got my period back which was working against me. Improving one's zinc and magnesium levels improves vitamin D absorption and activation plus I'm getting more sunshine.

I hope this is helpful to you. Sorry for your girlfriend's duseae progression but she's not alone and we have options in our arsenal. Do try to take care of yourself too to stay strong for you both.

Best,

Ann

Re: Brain Met
 

We saw the neurosurgeon today. He's confident he can remove all of the tumour. If not the rest will be picked up with Radiosurgery. This will be done in a maximum of 11 days.

They will look at Radiosurgery after for a boost in the area and WBRT.

What other treatment has everyone had after this has been done?

Re: Brain Met
 

I would not consider wbr as it can only be done once. Surgery then stereotactic or gamma or cyber knife. Tykerb ( a her2 targeted pill) 5 per day and a chemo - Xeloda and/or Temodor of ( also in pill forms) all pass the blood brain barrier. You should talk to your medical onc about this as a possibility. Of she is still on Herceptin, do NOT stop as it is keeping the body clear.


This is written only for ideas and discuss with her medical team.

Re: Brain Met
 

I too would question the WBR, as it seems to have some far-reaching negative effects that need to at least be discussed with you.
Neurosurgeons may not know as much about HER2+ breast cancer treatment options as medical oncologists so I think it very important to have a good medical oncologist in on the discussion, and to delay things if necessary to get it right. HER2+ tumors grow frighteningly fast but are often almost miraculously responsive to the targetted therapies. And some people on this board have had excellent results with cyberknife.
Sorry if this sounds like I am encouraging you to rock the boat just when you want to get moving, but as Becky says, it sounds like more discussion with medical team including medical oncologist may be wise.
I wish you all the best
Jessica

Re: Brain Met
 

Thank You everyone,

I too have concerns over WBRT. Our medical oncologist is thinking about using it now after surgery and radiosurgery boost or not. I would rather leave that, in case it is needed later. We are in the UK and Tykerb is no longer used due to cost. I'm hoping Kadcyla is an option, as it seems to be the only HER2 treatment that crosses the BBB which is used in the UK.

Thanks again.

Re: Brain Met
 

Hi,
Never say never. Tykerb may not be generally available, but there may be ways to get it for your partner.

Sometimes people take out a mortgage or loan and fund the cost of these things themselves. In NZ quite a few women somehow managed to find the $50,000 it cost to make up a year of herceptin when the govt would only provide the first 9 weeks of it. That may or may not be an option.

Others have friends and relatives who chip in. I met a woman who was a single mum with no money and a seven year old son, and she had needed $17,000 worth of some cancer drug for her brain tumor and her friends all pooled together and came up with the money. (it may even have been Tykerb)

Or even communities, encouraged by their local radio stations who can choose to get people phoning in to help out, or the local cancer society may support her cause, or something.

And sometimes it is possible to get these drugs supplied on a compassionate basis by the manufacturers, there is a special name for this process, and a special way of organising it but some people manage to do it. I am sure some of the wonderful people on this webpage will know how and whether or not it could be possible for you to access in UK.
I know it is really hard and you are probably both exhausted just getting through each day at present, and maybe these options won't work for you. I hope you don't feel upset at me suggesting them.
I wish you all the best.
Jessica

Re: Brain Met
 

Jessica,

Thanks for the ideas. Surgery is next Friday. Hopefully everything will be removed, and then go from there.

Thanks again for your help.

Re: Brain Met
 

Hi

Best of luck with your gf's surgery.
I am starting my 3rd and last wk of WBRT. I have 10 tumors in my brain so surgery and cyber were not options for me.
I will starting Tykerb and Afinitor after I complete radiation.
I had been on kadcyla for close to 3 yrs and NED almost the whole time. But it does not cross the blood brain barrier. :(
I will keep you updated on how my new chemo cocktail is working.

Also get in touch with the pharma comps that make the drugs she needs. They can do compassionate use or discounted price. patientassistancenow.com and covermymeds.com. Those sites will do benefit investigations and look for companies or people who will sponsor you and pay for your meds

Keri

Re: Brain Met
 

Thank You, Good luck with your treatment.

We are in the UK, so I can't use the links you provided unfortunately.

Re: Brain Met
 

Just got back from the hospital. Surgery was a success all of the lesion was removed.

I know there is a long road ahead, but so so happy right now!

Re: Brain Met
 

WONDERFUL. YAAAAAY!!!

I am so happy for you!

Carol Ann

Re: Brain Met
 

Excellent. That must be such a relief. Rest well, recover well.

When you are in a place to do so, you may want to check to see if maybe those US sites would know of English equivalents that could help you get compassionate access to the Tykerb drug she needs next to help mop up the area effectively.

Does anyone on this page know who could help?
best wishes
Jessica
best wishes