Brain mets - SRS

Posted By
Simon99
11/3/2017 4:34am
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Replies: 16

Trying to work out why our Melanoma oncologist and the radio consultant that she is dealing with is so anti SRS just based on Brain tumour size which doesn’t seem to exceed the permissible size limit. Size being 28mmx26x28. 

Currently waiting for a non NHS second opinion from Royal Marston Hospital UK. 

Continued from topic https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

Thanks for the tip Barb I am not used to ongoing forum conversations.

Anonymous - (11/3/2017 - 11:27am)

You might check out this webinar by a Yale nuero surgeon:  http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-...

sister of patient - (11/3/2017 - 5:54pm)

These might be worth checking out too Simon:

http://www.genesiscare.co.uk/cancer-centre  ... private but more "local" for you than the US

http://www.actionradiotherapy.org/ ... a charitable foundation that appears to be devoted to all aspects of delivery of radiotherapy to UK patients 

Fingers still crossed for you! 

Barb

Bubbles - (11/3/2017 - 8:27pm)

Hi Simon,

I am sorry for what you and your wife are going through. Patients and standards of care per country and insurance status differ...a great deal. So I hesitated to give you this with your first post.  Now you have been inundated with even more 'stuff'.  However, I would hate to have something in hand and not offer it to you.  So...here it is....a ton of articles and reports over the years regarding treatment of mealnoma brain mets:  

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=brain+mets&max-results=20&by-date=true  

In short...the best treatment for brain mets is pretty much what we've discovered works in the rest of the body:  immunotherapy combined with radtiation.

To that specific combo, there is also this (with some obvious overlap):  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=immunotherapy+and+radiation  

I hope those help.  Nothing is simple in life.  Especially when melanoma is involved.  Yet, one thing is incredibly simple and clear.  Those of us who have been through melanoma...especially those of us with brain mets....KNOW that the main thing that got us thoughn- are those who loved and cared for us.  

No matter what else happens...your wife has that.  Yours, celeste

ed williams - (11/3/2017 - 9:07pm)

Hi Simon99, I came across a video from 2015 on treating melanoma brain met, thought it my be helpful.https://m.youtube.com/watch?v=Aye31K4sl7w

ed williams - (11/3/2017 - 9:20pm)

One more link from England 2016 treated brain mets, includes melanoma.https://m.youtube.com/watch?v=7GbzkGpoG8Y

Simon99 - (11/5/2017 - 4:01am)

Yet another knock back on Friday morning, I had an email reply from the Royal Marston Hospital pretty brief and impersonal:

”Dear Mr S Green

I sent all medical paper work, with regards to your wife Tracey Chieza , to consultants – Dr Liam Welsh and also to Dr James Larkin.

All documentation has been reviewed and they have both responded to say that unfortunately there is no treatment we could offer that would be of benefit to your wife.”

This nearly lost my hopes and has certainly knocked them, but I am not prepared to give up. All of your links and experiences have shown that there could be a possibility and 3cm does appear to be where the upper limits are set in everything that I read. As Royal Marston is also linked to NHS then it could be they follow the same protocol which consists of an automated table to form a decision based on survival expectations. I am guessing it could get quite embarrassing for the NHS if private hospitals keep overruling their descions and proceeding with treatment successfully. I am sure there is some human factor in the descision but if she doesn’t qualify then it is the job of the consultant to be certain and have good ground for refusal and they need to be certain of there facts when justifying the decision.

They come across as very certain but I do not understand why their reasons seem very generalised - those reasons being side effects to severe - specifically sickness, headaches and many of the rest of the side effects from the usual menu of side effects that seems to be common to most treatments. They also say that it is not very effective and doesn’t work very well. No one has directly said brain damage to an extent that would effect the patients quality of life to much is the deciding factor. This I would understand as being a justification.

Bubbles - (11/5/2017 - 11:15am)

I am sorry for all you are dealing with.  Melanoma alone is more than enough!!!  Is there any option where you might sit down for a talk with your wife's main physician?  Discuss some of the raft of data that I've shared on my blog regarding the effectiveness of treating melanoma brain mets with immunotherapy AND radiation like SRS?  Even surgical removal of the tumor, followed by SRS and immunotherapy?

Other specific things I would want to ask are these:  Why exactly are they so certain that such treatment would not be beneficial to your wife?  Is there overwhelming disease elsewhere?  Do they think she has leptomeningeal disease?  Is it the particular location of the tumor in the brain?

While whole brain radiation (WBR) is associated with less response and greater mental/cognitive issues and edema in melanoma patients...there is a great deal of data that SRS (or gamma knife - very specific targeted radiation to the tumor or to the site of the surgically removed tumor) with immunotherapy invokes minimal side effects and real benefit.  Many of us on this forum are here today because of that very treatment.  However, access to care is often a fight no matter your country or insurance coverage.  Here in the US I have had to fight my insurance company repeatedly for my care.  From the UK (and EU) here are two women who fought very hard....I will share my reports on them in hopes that contacting the resources they utlized might benefit your wife:

The story of Lori Murdock:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/merde-again-with-love-to-friends-and.html  

Pati Garcia-Prieto:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/07/ode-to-patia-fallen-commrade.html  

If you put brain mets in the search bubble at the top left of my blog...you will find plenty of research data that indicates the benefit of the treatment you are seeking for your wife.  Perhaps there are legitimate reasons your wife's physicians feel here case is different.  I hope you get answers and wish you and your wife my very best.  She is lucky to have you.  Celeste

Mark_DC - (11/5/2017 - 6:40pm)

Dear Simon,

I am sorry that my suggestion was of no use - i thought Royal Marsden was the way forward and they would know what to do. I am kind of lost as to what is going on - it could be that treatment will be of no use because of the specifics of your wifes case or alternatively that the NHS will not give treatment based on its criteria. We just dont know.

You have some of the most knowledgeable board members having read your posts. i would go exactly with what bubbles (celeste) just posted - try to find the answers to the questions she raises from your first specialist and perhaps from royal marsden too. they might well be right but they surely should give an explanation. There could be information you and we do not know about yet, but they should also share that inforrmation with you, i think you have that right. If they are withholding to “protect” your wife surely they should share with you? We might be clutching at straws and the probabilities may not be grear, but the survivors here all faced low probabilities too and were the lucky ones who overcame them.

So, am really sorry about the Royal Marsden, I thought this would help both of you. I think bubbles gives the best advice in what to do next, try to find out more. Sharing findings with your doctors will be tricky, but i think you should do this too. I do with my usa doctors, they dont really like, but Each time i do its clear they have already read this stuff and are aware of latest developments. So i come away reasured they know their stuff. Your uk doctor should be comfortable enough to do the same.

i wish you and your wife the best, and wish you the strength to keep trying. I think its going to be difficult but i do think the doctors should explain more. Once you succeed in this it will still be tiricky, either your wife situatoin is more difficult, or you have to convince your doctors to provide treatment - both will be a struggle, but its right to fight this struggle

hoping for better news this week

Mark

Simon99 - (11/6/2017 - 2:17am)

Thanks again guys, I will be contacting Gennesis today.

I would like to talk to my wife’s physician at some point but I fear that at the moment all I am getting from their whole team is an overwhelming response of dont go there when it comes to SRS, full brain or surgery. Full brain I feel maybe I can understand is a tricky one and would question the quality of life aspect after (in my non expert opinion). But I feel there are alternative options from what I have learned from you guys.

At this moment in time it concerns me that if there is a culture of avoiding such treatments under this set of circumstances within our health system then the people who are working within this culture are likely to have adopted a belief that they are correct in their advice and maybe very convincing in their opinions against it if pushed to answer more.

I really want the opertunity to talk with an unbiased radio consultant away from our emmediate consultants in the first instance and then go back to them afterwards. It just fears me that pressure on peoples jobs if they were to go against the systems beliefs could just lead to them wishing only to discuss the negative aspects. I hope that makes some kind of sense. Whilst we understand there are risks we need to have enough information to weigh up the pros and cons. I fear without enough pros coming from my consultant this is going to be a difficult ride.

No information I am receiving is being overlooked and I appreciate the huge amount that Bubbles has shared as well as Barb, Mark and others. The hardest thing for me to run with this quick enough and still spend quality time with my wife without having my head in an Ipad in the that I am with her. 

Will update as things evolve. Fingers crossed sooner than later. 

Simon99 - (11/6/2017 - 2:27am)

Bubbles, I feel they have answered many of the specific questions you raise already. From their reports the disease is minimal elsewhere and stable. And they have confirmed no leptomeningeal disease. I asked them is there any there any other reasons for refusing SRS (like proximity of the Tumour to vital areas) and I was told no just the size. 

Multiple people have ruled out surgery due to number of tumours being 4 even the US consulted that I briefly communicated with.

 

cancersnewnormal - (11/6/2017 - 10:46am)

Simon, I can't imagine your level of fear and frustration at this point. Not knowing the specifics of the MRI results, other than that which you have been able to post, my best suggestion (along with everything Bubbles noted) would be to contact someone who specializes in brain metastasis and radiotherapy. My radiation oncologist is Dr. Eric Chang. A quote from his bio --- "He is considered a world authority in the use of radiation therapy in the treatment of benign conditions and malignant tumors of the central nervous system, and is highly experienced in handling both routine cases and the most complex cases requiring radiotherapeutic evaluation in a multi-disciplinary setting of experts comprising neuro-radiation oncologists, neurosurgeons and neuro-oncologists, and neuro-radiologists." --- Yes, he really is that good. He works out of USC in Los Angeles. Because you are in the UK, I'm not certain he could be of direct assistance, but I would imagine that as a distinguished member of ASTRO (American Society of Radiation Oncology), he very likely has connections with doctors in ESTRO (ASTRO's European counterpart). If the lesion size is truly the only reason that your wife is being "put aside", it may be the painstakingly frustrating matter of convincing the "right people" that she can indeed be helped. Here in the US, insurance companies can be a frustrating hurdle to overcome. Too often, I have found that literally being in someone's face is the best way to remove their ability to "dehumanize" a patient. Dr. Chang has a vast amount of knowledge and experience... perhaps he can assist with better answers and finding the "right" people to help you. eric.chang@med.usc.edu

 

Simon99 - (11/6/2017 - 3:01pm)

Thanks again for more help. I will put that to good use. At this stage it feels like i am trying to get through a firewall. I have approached the private hospitals and all of them seem to link back to the NHS. The private consultants all seem to work for the NHS as well as provide private care. My wife and I have a meeting with a private consultant at the Spire Private Hospital Tomorrow evening. The consultants P/A told me earlier that this consultant does work for the NHS too and the Spire Hospital actually adjoins the Southampton General NHS hospital.

Southampton is the Hospital that has already been consulted with by Tracey’s local hospital Melanoma specialist to have her proposal for SRS turned down. Something tells me this wont be an easy ride  tomorrow either. 

I had a call today from a receptionist at the Mount Vernan Hospital which was another private health care lead that I contacted last Thursday. It has taken until today for them to contact me back to say that I would need a referral from a Melanoma consultant in order to connect to a Radio Consultant and that they do not have one. They recommended me to consultants at the Royal Marston hospital which is the hospital that turned down even talking to us last week.

Beginning at this point to feel there is a pattern occurring here. One thing is for sure, no organisation will let you talk directly to a Radio Physician in the UK it can only be done through a specialist cancer consultant. To coin a phrase something sucks here. 

My wife described it perfectly a moment ago. Its not like we are fighting Melanoma any more, its like we are fighting people.

Simon

I'm so sorry to hear of the dificulties you are having.  Keep fighting.  I'm afraid I don't have any helpful tips for you as I'm in the US.  I had an agressive brain tumor which was treated with targeted radiation and so far it has been quite successful.  I hope you can get Tracey the care you think is appropriate.  I'm praying you get some positive news.

Best wishes,

Jennifer

Mark_DC - (11/6/2017 - 10:07pm)

Hi Simon,

I wrote earlier this afternoon but my connection broke and my reply did not post.

For what it is worth, I was in hospital today and at the end of my consult mentioned your wife's case very briefly to my doctor. We only spoke one minute so this is not proper medical advice and I did not go into details you had posted and you or your doctors may have more relevant info. I did mention the brain tumour and I think the other tumours (which seem stable more or less the way I read it). Consistent with recommendations here, he said that in the US they/we would try SRS for the brain tumour and pembro/keytruda (or maybe ipi/nivo, basically anti pd1 immunotherary) for the rest. Size limit for SRS is 3cm (as others had said but I was not sure about).

I dont know what to tell you. Its possible that there is some other information say the location of the tumour or other stuff which explains why they resist further treatment. In this case the NHS approach could be correct but the prognosis for your wife poor. But if the information is as stated, then in the US we would try SRS for the brain tumour and drugs for the rest. This approach is not guaranteed to work, it could fail, but it works for some including many on the board (and I think bubbles / celeste directly thoough cannot remember if she had a brain met).

I just dont know why the UK cannot give this treatment (and why Royal Marsden replied so abruptly, when I think they have melanoma specialists). It might be because there are other factors. But, like you, and I have no evidence for this, I hope it is not because of NHS bureaucracy. It may simply be that the NHS will not pay for SRS, its deemed too expensive and so the doctor cannot offer. Am not sure how you can overcome this. But I wish they would tell you this, if this is the case. I dont know why they seem surprised that your wife seems to be doing OK - to me this indicates should be a good case for treatment.

I hope you can find out more. Whatever you find out will be disconcerting. But if its a payment issue or that they need convincing that she can make it, then personal contact might work, they might realise they should try to help your wife.

I do have some self interest in your case, being British, wanting to go back home when/if I retire, or to work while in retirement, and worried that this is simply too risky for my health. The US health system is highly problematic, but I am fortunate to have good insurance and a melanoma doctor who I might debate with and disagree with (a little only) but who knows his stuff. Insurance here wont pay for everything, only for approved treatments, i was about to be denied an extra treatment (which in my case makes sense and offers more hope of a lasting response than surgery) but we appealed and this went through. I have many questions about the US although I have lived here 25 years, but people here do want to overcome problems or try to, whereas in the UK i got the sense that people were resigned to the system. I hope you can find someone who is creative, look at your wife's case clearly, and then bend the rules if needed to try to cure her.

Good luck and I do wish both of you will have clearer answers and better news soon

Mark

Mark_DC - (11/6/2017 - 10:21pm)

http://melanomainternational.org/web-resources/global-resources/#29

PS this website might be useful -- this from another forum (more internationals, fewer posts), but this page lists international contacts including the UK. You may want to call or write to melanoma UK. I think the keytruda/pembro should be available in the UK I just wonder about the SRS I think this is needed, but they dont mention it too much. Good luck Mark

doragsda - (11/6/2017 - 11:43pm)

I apologize if this has been mentioned already;   I have read through both of your threads over the last few days but may have missed it.

Have you spoken to these folks?   Looks to be the go-to place for SRS in UK:

http://www.gammaknife.org.uk/