Brain Metz

Posted By
Simon99
10/30/2017 6:57am
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Replies: 42

Hi All,
I haven’t posted on here before although joined earlier this year.

My wife was diagnosed with Melanoma brain tumours in March this year. At the time we was told that she would not last very long and that there was little that could be done due to number of tumours (4) and their location.

They tried her on Keytruda for a very short while (1 infusion) but she went down hill very rapidly. She was then transferred to Dabrafinib/ Trametinib which has worked well for a while and reduced tumours by 50% in the first 3 months. Her scheduled scans are 3 monthly and on the next scan we was told her tumours had stabilised and had not not grown but not shrunk any further.

She was at this point however getting headaches, we informed the consultant (Melanoma Specialist) of this and she remarked that Tracey shouldn’t be getting headaches and scheduled her in for an MRI scan. Her headaches have persisted now for a month and are getting worse. The results of the scan have come back and are showing that 1 of the 4 tumours has increased in size. This is in the area that holds short term memory (one of her frontal lobes but i cannot remember the technical name).

Her current condition is that she getting a little bit not with it in mind (slightly dazed but coherent) she is battling between headaches and nausea and tiring quickly. She was put on 4mg of dexomephazone 3 days ago and Would say it maybe helping her symptoms gradually. 

We have a meeting with her Melanoma specialist tomorrow to discuss what if anything can be done. I have to say I feel petrified at this point as it was indicated at the beginning that there was not really any other options other than the Dabrafinib/ Trametinib that could help.

We was told surgery is not an option due to quantity and location of the Tumours.

I have noticed Gamma Knife seems to keep getting mentioned on this Forum. Could anyone tell me a little more about this. Are there areas of the brain that this is not good for?

Any opinions and experiences would be appreciated as I am going to want to discuss best options for my wife with as much knowledge of what could be available as possible.

 

Simon and Tracey

sgreenberg - (10/30/2017 - 7:49am)

Hi,

Sorry to hear about your wife's brain mets and their effects. My wife has 9 brain mets thus far (started with 2 nearly two years ago)...and is not in a good way at the moment.

Most importantly, is she being treated by a Melanoma specialist? If not, I'd STRONGLY recommend finding one ASAP. A regular oncologist isn't good enough. There are a lot of new options for treating brain mets - and only a Melanoma specialist will be up to speed on all of them. 

Gamma Knife is a form of Stereotactic Radiosurgery (good overview here: http://mayocl.in/2yXe8U5), which my wife has had 4-5 times. The procedure is considered quite effective at slowing growth of individual tumors, and the side effects are generally mild. SRS together with immunotherapy (Keytruda or Ipi/Nivo) or Dabrafinib/Trametinib is pretty much the best game in town for the brain.

I see you're in the UK, so at least you (like us in Israel) have a public heathcare system to rely on. Good luck. Happy to compare note further if it helps.

Steven

COspouse - (10/30/2017 - 12:25pm)

Thanks for answering the “how many times can Gamma knife be done?” question.  I was wondering that one, too.  

Regards to you and your wife,

Bette

cancersnewnormal - (10/30/2017 - 9:12am)

I'm honestly quite shocked that gamma knife radiation (or SRS... simliar but not exactly the same process) was not mentioned from the moment they found your wife had brain metastasis. Gamma knife procedures saved my life until FDA approval (here in the states) of Keytruda in late 2014. I've had a total of 39 tumors in my brain... in any and all areas you can imagine. When I was first diagnosed stage IV, I had 4 brain lesions. The most troublesome was in the left frontal lobe. Like your wife, I was put on Dexamethazone for the edema, to control symptoms until I could have it surgically removed 10 days later. The remaining three lesions were gamma radiated an additional two weeks later. Unfortunately, the blood brain barrier that serves to protect our brains, also limits the level of drugs that can pass through. Some medications cannot penetrate it at all, with others, it is minimized more so than in the body. Our brain protects us this way, because immune system response is swelling......... fine in the body... not so fine in the confined space of cranial bone.  This makes treating brain lesions more difficult. However... many people on this forum have undergone gamma (or Linac SRS) to treat their lesions. Targeted brain radiation is quite effective on melanoma metastasis. The most I've ever had treated by gamma at one time, was 9, but there are others who have had many many more. I know of one patient who recently had more than 35 treated in one session! Your wife should be referred to a radiation oncologist as soon as possible. 

Worthy of additional mention is that a single infusion of Keytruda is not enough evidence to base whether or not the medication was effective. The switch to BRAF inhibitors is a wise and useful move, assuming your wife carries a BRAF positive mutation. This still does not assume that Keytruda won't work for her, but the BRAF inhibitor meds are more rapid in their attack on tumor tissue. 

ALLLLLLL of that aside... if her brain lesions are in the meningies, she is dealing with a more extensive issue.

 

Simon99 - (11/2/2017 - 6:33am)

Nikki, out of interest what sizes were your larger tumours? Particually the one in the left frontal region.

cancersnewnormal - (11/4/2017 - 6:03pm)

The left frontal lobe was 1.6 cm. They pulled it out within 11 days of my seizure. The grand mal seizure is how I learned that I had gone from stage 1a to stage IV with brain mets. I had no neurological symptoms, but the 1.6 cm lesion was surrounded by so much edema, the swelling is finally what put me into seizure. 

I just saw my radiation oncologist on Thursday... and mentioned "talk on the forum" of what to do for an almost 3 cm lesion in the brain, in a "difficult to handle" location. Gamma knife is incredibly accurate with targeting. A lesion of that size is still treatable, and should be targetable even near the blood vessel, because of the accuracy being within  .15 mm! 

Anonymous - (10/30/2017 - 10:10am)

I am dealing with two brain mets...SRS is not an option at this time due to proximity/curvature around a vein.  

ed williams - (10/30/2017 - 12:14pm)

Hi Simon 99, I have a couple of links for you on managing brain mets. Hope they are helpful. Best Wishes!!!ED https://meetinglibrary.asco.org/record/147205/abstract  https://www.yo...

ed williams - (10/30/2017 - 12:16pm)

Sorry about link, here is video again!!! https://www.youtube.com/watch?v=X5xGQpdp9OA

ed williams - (10/30/2017 - 12:18pm)

Here is a second video about SRS from UCLA from 2014. My ASCO post didn't work, sorry about that one. https://www.youtube.com/watch?v=mnPN8YyfX_Y

COspouse - (10/30/2017 - 12:22pm)

Good luck, Simon and Tracey! 

My husband has 3 brain mets now after progressing on Dabrafenib/Trametinib.  Gamma knife was immediately mentioned by his oncologist. We meet with the Gamma knife guy tomorrow to discuss things.  Tentatively scheduled for a week from Thursday - 11/9.

His mets are in the cerebellum (2) and left parietal lobe (relates to coordinated muscle movement, I think). No symptoms, no headaches.  I’ll be asking that same question:  are there areas that can’t have gamma knife?

My husband had a 15month run on intermittent (trial) Dabrafenib/Trametinib (5 weeks on/3 weeks off) with stable/shrinking lung mets before developing the brain mets.

Ipi-Nivo is in the present plan too, though I read it’s not as effective post BRAFi/MEKi progression.

-Bette

Simon99 - (10/31/2017 - 1:45pm)

Thank you all for the replies that you made so quickly yesterday. Probably important to mention at this point that we live in the UK.

Today we got the worst news possible... The Dabrafinib / Trametinib combo has stopped working, we are told because her worst tumour has grown significantly. We have been informed that the best advice is to stop all cancer meds and let Paluative care make her as comfortable as possible. They say that they could try her back on Keytruda but dont advise it is a good coarse of action because it probably wont work and her having to go and visit hospital once every 2 to 3 weeks would make her more uncomfortable when she least needs it.

From what I am reading many of you guys seem to have gone through worse situations and are still doing very well. So it seems still worth the fight and she still has the will at present. You could not find someone who enjoys life more. I asked our Melanoma specialist in the meeting today what is the reason why Gamma knife is not considered and she said it is due to the size of tumour. So i said what size is it? She had to refer to her notes (which is a bit concerning although not a surprise) and said its 2.6cm. I asked is there any other reason why the Gamma Knife could not be used, as in too close to a vain or something else? She said no just the size. 

To answer the question about do we have a Melanoma specialist yes she is classified as one. That said although she appears a very nice lady and sounds competent I have no idea of her experience or background as in the UK we all rely on our National Health Service. I believe these people all act under the advice of a board of consultants for the area. Our NHS is over saturated and governed by a budget (although they would never admit that has an effect on an individual) we all believe things get prioritiesed and if the odds are looking poor for you they will not attempt these operations.

It is difficult to get meaningful second opinions over here as we do not really get to know who is good and who is not, we just get the consultant that is provided. 

I will probably think of more details to put down but for now, from a couple of people who are desperate and could only have a short while to act. Can any of you guys recommend a Melanoma specialist in the States preferably the shortest flight distance from the UK as i guess flying is not good for her in her condition. Its a long shot but I know you guys will all know where I am coming from and will do anything to give my wife a chance. We would be willing drop everything and fly over to do this for the right specialist if we can make it happen.

Anonymous - (10/31/2017 - 4:24pm)

Wow it sounds like because of the socialized health care system your wife's doctors have given up on her. Definately looks like they are unwilling to rack up the bill on alloted budget.That is not right. It doesn't sound like  her doctor has sufficient expertise in melanoma either.I am no doctor but I see no reason why a 2.6 cm tumor can't be radiated with gamma knife.Also how do they know she won't be Keytruda responder if she is not put on it?You should most definately get consultation and possible treatment in the US if you can afford the cost since it's a private healthcare.The shortest flight would be London-Boston so you should try Dana Farber Cancer Institute, dr.Weber from NYUMC ,or Cancer Center of America in Philadelphia,PA.Dr. Jeffrey Weber's E-mail address is: Jeffrey.Weber2@nyumc.org and he is very good at replying immediately. Http//:dana-farber.org/melanoma-treatment-center/contact-us  is  the  online form to contact Dana Farber in Boston,MA . You can call directly on their phones /listed  on that page/ for an appointment .Best of luck and please contact them asap,

Simon99 - (10/31/2017 - 5:36pm)

Thank you so much for replying, As soon as i started reading these forums I began to question logic in her treatment and the size of the tumour being disregarded for being possible to deal with. I think time is a battle right now. I dont know what the costs will be but I know how much my wife is worth to me and I will try what ever I can to afford anything on offer as long as it has a reasonable chance of success.

To put some perspective on our public health care system, it took from my wife reporting head aches three weeks for the MRI booking to come through and until today for the meeting with the consultant for the situation to be discussed and dismissed. Routine CT scans on a 3 monthly basis and nothing else offered until the headaches were reported. At the beginning I questioned the frequency of CT and it was implied that it wasn’t worth doing any more frequent as they had to give things chance to happen before rescanning. 

At the outset it was indicated that they felt the chances were minimal of survival beyond a few weeks and they appeared very surprised how well Tracey progressed when on the Dabrafinib /tram. I feel in hindsight she was written off as having a chance very early on.

Regarding the Keytruda, there words were that they dont believe it will work quickly enough given how quickly here tumour has grown. I wonder if they just missed the fact that it was growing on the previous CT scan. It’s interesting that they swopped from CT to head MRI scan to notice the increase in size. I could keep speculating and I am sure I will never know how on the ball they were but its what I may be able to do going forward that is the important bit.

Thanks again.

Fingers crossed - Simon

Simon99 - (10/31/2017 - 5:40pm)

Just to clarify the aboth on the Keytruda - they put her on it before the Dab/Tram comb and the tumour grew too fast for the Keytruda to begin working. They did however report that it was showing signs of working elsewhere in the body. She only had one infusion before things got out of control with this particular tumour.

Simon99 - (10/31/2017 - 5:40pm)

Just to clarify the aboth on the Keytruda - they put her on it before the Dab/Tram comb and the tumour grew too fast for the Keytruda to begin working. They did however report that it was showing signs of working elsewhere in the body. She only had one infusion before things got out of control with this particular tumour.

Anonymous - (10/31/2017 - 6:06pm)

I am shocked they dismissed her situation following the MRI.You don't mention where the mentioned  tumor is, but it doesn't make sense to discontue Keytruda after one treatment if it was working on everything else.Usually the standard protocol in the US would be gamma knife to  the brain tumors then immunotherapy/targeted therapy depending on gene mutations present.There is a melanoma  patient here who had 39 brain tumors and they were all resolved with gamma knife.There are US charity foundations that provide financial help to cancer stricken patiens;although not sure if  financial help would  be extended to non US citizens.One of them is mnangel.org.You should be contacting US melanoma center of excellence for an adequate treatment plan  ASAP,  as  precious time was already lost in  mishandling this.Good Luck and keep us posted.

Simon99 - (10/31/2017 - 6:24pm)

I believe it is in the left frontal lobe. They say it is only size and not position that is there reasoning for not doing targeted radio therapy. I wouldn’t have a lot of confidence in them carrying out the procedure over here at this stage even if they was willing. When I googled Gamma knife in the UK yesterday (as I had no idea what it was) it appears there only 2 in the country. 

Thank you for your advice, I think I have to accept if we can and have time to make this happen it is going to cost us big. I just hope I am able to see a way to finance it. But the only way we find out is by trying. Do you know what the Gamma procedures and after care costs on average?

I will contact the Melanoma centre of excellence as you suggest.

 

Thank you 

Simon 

cancersnewnormal - (10/31/2017 - 6:44pm)

Ok... as someone who has undergone 10 gamma treatments, I can tell you, that there are indeed size limits for what can be radiated. THAT SAID... I would question why a neurosurgeon couldn't remove any portion of the tumor that can be safely resected, with the rest of it treated via targeted radiation. You may have to look toward Oxford, or further for a true specialist... one that is willing to push the rigid confinements of traditional treatment. Maybe try this guy: https://www.oncology.ox.ac.uk/research/mark-middleton ... or this guy: http://www.melanomauk.org.uk/about-us/medical-advisors/professor-john-wa...

Simon99 - (10/31/2017 - 6:54pm)

From your experience 26mm pushing the size limit?

simon

Simon99 - (10/31/2017 - 6:56pm)

Thank you for those contacts - i will try anything

Simon99 - (10/31/2017 - 6:56pm)

Thank you for those contacts - i will try anything

Anonymous - (10/31/2017 - 7:15pm)

2.6 cm does qialify for a gamma knife radiation,see my post below

Anonymous - (10/31/2017 - 7:16pm)

Sorry for the typo...qualify....

Anonymous - (10/31/2017 - 7:14pm)

Here is a link from the International Radiosurgery Association:

http://www.irsa.org/acoustic_neuroma.html

It shows tumors less than 3 cm qualify.

The safe cuttoff is actually based on tumor volume and 12.5x3 is typically the safe cuttoff.

This means thatt some tumors that are odd shaped with one dimension bigger than 3 cm can safely qualify.

Some people I believe had larger tumors radiated.

Simon is right that the US cancer centers have extensive experience in the gamma knife procedures for brain mets. If in the UK they have only two of gamma knifes  and unwilling to perform the procedure obviously  expertise and experience is needed.

Mark_DC - (10/31/2017 - 9:46pm)

Dear Simon,

I am British too but, fortunately given my disease, live and work in the States. I fear that my melanoma will stop me returning to the UK to live - have to make do with iplayer instead and trips to see my daughter in London.

like the others, i think the doctors are not being open minded enough, and this saddens me (proud as i am of the uk and nhs). Gamma knife with keytruda would seem the way to go. It may not work but it offers a fair chance. A single keytruda infusion is not enough to say it did not work. I dont know enough about the size questoin you ask which is key.

i have followed other UK patients (not many post), and i think possibly the best place in the UK is the royal marsden hospital in london. I dont know for certain but that is my sense, also for clinicial trials i think thet seem more in the loop. So do pleass try to get a referral to them too, as well as the others those on the board mentioned. I beleive there is a possible solution and their experts should know.

I wish you and Tracey every success in overcoming this

Mark

Simon99 - (11/1/2017 - 3:29am)

Thanks Mark, was you in the States prior to contracting the disease or did you go there to pursue treatment? I will contact those too. I have contacted a first one in the previously mentioned US consultants and had a response last night. He would like to see recent MRI’s so at least something is moving. 

I will make contact with the UK consultants and places that have been mentioned but as of the moment my confidence of there being the experience in the UK is low. I hope one of them can give some of that confidence back but if means traveling, as long as my wife is willing and able then we will.

Simon99 - (11/1/2017 - 6:40am)

For interest if it means much to any of you I have just received a copy of the 2 latest reports:

REPORT:
17P0462935 24/10/2017 MRI Head
Comparison made to the CT of 20/09/2017 and those previous.
The left anterior frontal lesion has increased in size to 28 x 26 x 28 mm from 20 x 22 x 24mm in September.
The remainder of the widespread cerebral and cerebellar
metastases show only minimal change in size/are unchanged.
No meningeal disease identified.
Conclusions: The large left anterior frontal lobe lesion
has shown a definite increase in size since September, the
remainder of the widespread lesions are considered stable.

Consultant Radiologist

CLINICAL DETAILS:
Melanoma, multiple sites of metastatic disease, assess
response to treatment
REPORT:
17P0408034 20/09/2017 CT Chest/Abdo/Pelvis/ With Contrast
Comparison is made previous study from 2.5 months ago.

The left upper lobe lung metastasis has reduced in size from
20 x 23-15 x 20 mm. The small left basal lesion is now
almost scar-like. No new focal lung lesion.

Below the diaphragm, normal appearances of the liver,
spleen, pancreas, both kidneys and right adrenal. Stable
appearances of the left adrenal. No pelvic mass or bone
lesion.
The subcutaneous deposit anterior to the right pectoralis
musculature is now linear and scar like. There is a lesion
in the left flank which has enlarged from 3 x 8 to 8 x 9 mm.

Impression: Ongoing response within the lung and skin,
generally stable brain and adrenal metastases. Single
enlarging subcutaneous lesion left flank (see key image).

17P0408033 20/09/2017 CT Head
Comparison is made with previous study from 2.5 months ago.
Overall, appearances of the multiple metastases can be
considered stable.
Occasional lesions show minimal increase/decrease in size -
for example the right parafalcine sign lesion centrally has
reduced in size - currently measures 17 mm in greatest
dimension compared with 21 mm previously, but the superior
right frontal lesion has enlarged - currently measures 15 mm
in greatest dimension compared with 12 mm previously.

Consultant Radiologist

I will be forwarding this along with actual MRI scan to some of the Consultants that have been mentioned to get there opinion. When I asked for them the specialist nurse was really advising against us proceeding with anything and said something to the effect of once the cancer spreads to the brain this overrides all other areas of the body. Your medical people sound much more open minded rather than a closed book. I have to get scans burned to CD from the hospital, does anybody know if this can be emailed by attachment

Simon

 

Simon99 - (11/1/2017 - 6:40am)

For interest if it means much to any of you I have just received a copy of the 2 latest reports:

REPORT:
17P0462935 24/10/2017 MRI Head
Comparison made to the CT of 20/09/2017 and those previous.
The left anterior frontal lesion has increased in size to 28 x 26 x 28 mm from 20 x 22 x 24mm in September.
The remainder of the widespread cerebral and cerebellar
metastases show only minimal change in size/are unchanged.
No meningeal disease identified.
Conclusions: The large left anterior frontal lobe lesion
has shown a definite increase in size since September, the
remainder of the widespread lesions are considered stable.

Consultant Radiologist

CLINICAL DETAILS:
Melanoma, multiple sites of metastatic disease, assess
response to treatment
REPORT:
17P0408034 20/09/2017 CT Chest/Abdo/Pelvis/ With Contrast
Comparison is made previous study from 2.5 months ago.

The left upper lobe lung metastasis has reduced in size from
20 x 23-15 x 20 mm. The small left basal lesion is now
almost scar-like. No new focal lung lesion.

Below the diaphragm, normal appearances of the liver,
spleen, pancreas, both kidneys and right adrenal. Stable
appearances of the left adrenal. No pelvic mass or bone
lesion.
The subcutaneous deposit anterior to the right pectoralis
musculature is now linear and scar like. There is a lesion
in the left flank which has enlarged from 3 x 8 to 8 x 9 mm.

Impression: Ongoing response within the lung and skin,
generally stable brain and adrenal metastases. Single
enlarging subcutaneous lesion left flank (see key image).

17P0408033 20/09/2017 CT Head
Comparison is made with previous study from 2.5 months ago.
Overall, appearances of the multiple metastases can be
considered stable.
Occasional lesions show minimal increase/decrease in size -
for example the right parafalcine sign lesion centrally has
reduced in size - currently measures 17 mm in greatest
dimension compared with 21 mm previously, but the superior
right frontal lesion has enlarged - currently measures 15 mm
in greatest dimension compared with 12 mm previously.

Consultant Radiologist

I will be forwarding this along with actual MRI scan to some of the Consultants that have been mentioned to get there opinion. When I asked for them the specialist nurse was really advising against us proceeding with anything and said something to the effect of once the cancer spreads to the brain this overrides all other areas of the body. Your medical people sound much more open minded rather than a closed book. I have to get scans burned to CD from the hospital, does anybody know if this can be emailed by attachment

Simon

 

Simon99 - (11/1/2017 - 6:47am)

Apologies that these replies keep doubling. My iPad seems to keep causing this issue and i cannot see a way to edit/ delete.

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