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January 15, 2015 at 7:00 am #22317
My wife has stage iv melanoma and is on Pembrolizumab. Scans in december showed progression with nee tumors in her bones around her hip. No brain Activity on PET/CT.
She got her third IV yesterday and felt OK aside from Some pain around the breast bone. Blood OK, felt really good.
This night I woke up as she seemed to be choking. Called 911 and she is now in hospital. Had 3 attacks that look like seizure : epilepsy. Scan in an hour.
Any ideas? Questions to ask?
ThanksJanuary 15, 2015 at 11:18 am #66092buffcodyParticipant
I’m very sorry to read about your wife’s situation. I went through the seizure experience twice in 2013, though I probably should say my wife went through it since she was the one who had to watch it and live through it every minute, while I was unconscious or barely conscious most of the time. I have been on anti-seizure medication for almost two years now and have not had another seizure since early August of that year.
My situation is not parallel to your wife’s. I did have brain metastases which were radiated some months prior to the seizures. The most likely cause of my seizures were radiation effects (necrosis) that caused inflammation in the brain. The necrosis from each of the radiation sites was ultimately removed through craniotomies. But I am still on anti-seizure medication.
However, I do wonder if there could be any inflammation going on in her brain as a result of unknown metastasis. A question I would ask of her doctors is whether there might be a better indication of what is going on in her brain that could be determined by a brain MRI rather than PET/CT. I do not know if that would provide a more accurate gauge or not. But I think it is a question worth asking. My brain tumors were found through the brain MRI while they were less than a centimeter in size. I do know that PET scans of the brain are difficult to read accurately because of the intense brain activity that causes the whole brain to “light up” so that a light up from metastasis would be somewhat more difficult to spot. But I certainly do not know enough to question your wife’s oncologist. Just a question I would hope you would ask.
You probably already know that your wife will not be able to drive for at least the next six months because of the seizure episode. Something to plan for.
FrankJanuary 15, 2015 at 11:50 am #66093JBunyanParticipant
I agree with buffcody; My 2 small (10 and 6mm) brain mets were only seen by an MRI scan. They were successfully treated by Gamma Knife in Dec 2013. Luckily I have had no seizures but the UK driving authorities are harsh – I am off driving for 2 YEARS from Dec 2013 just for having the 2 small mets – no amount of consultants letters will change the rules here. I really hope your wife improves but do get a brain MRI. I am now on 3 monthly MRI brain scans and 6 monthly CT torso scans following 4 doses of Ipi in Nov – Jan 2013-4(after being Grade 4, Stage M1(c)), fortunately I am NED at the moment.January 15, 2015 at 1:29 pm #66094 Hi both,
Thanks for the replies – frank also on MPIP
First smile of the day I think.
For me the shock was the attacks – in the middle of the night when I had no clue what was happening and brain mets were never in the picture and my woife was doing really well after a free fall in December when her previous treatment failed. Now it’s the shock of the diagnosis.
There are probably around 10 mets in her brain that never showed up including the December PET/CT. They did on today’s CT and tomorrow well have an MRI.
I hope SRS or gamma knife or some targeted therapy can be used although the oncologist I’m her local hospital mentioned the whole brain may need to be radiated.
Also can Pembro in itself do the job of fighting these mets? Early indications till now suggested it may be working.
Will keep you posted!January 15, 2015 at 4:04 pm #66095
I wouldn’t bank on the pembro only, SRS is really the best course of action for these mets. Hopefully it will be a boost to have both radiation and PD1 but not well proven yet. Glad to hear there are smiles again. Understandably, it was frightening and I think Frank described so eloquently what his wife endured! Thank you Frank. Let us know Rick..January 15, 2015 at 5:23 pm #66096MathewRParticipant Rick, I’m sorry to hear about your wife’s situation. I’d press hard for SRS (versus whole brain)–even if you need to take her somewhere else. (Don’t know where she’s being seen.) As a “knowledge worker”, I would fight tooth and nail to avoid WBR for myself.January 15, 2015 at 10:01 pm #66097jualonsoParticipant Hi Rick, so sorry about these bad news. When on door closes at least a windows will open. Wait till MRI results and make the best decision for your wife. This is just another bump on the road, but as you know, many others got over that situation. Dont give up. Never give up. Good good luckJanuary 15, 2015 at 10:19 pm #66098 Thanks so much for all the support. Going into a new night hopefully without seizures.
Is gamma knife exactly the same as SRS?
What’s the maximum number of tumor for this targeted therapy? I hear some hospitals say 8 others go up to 15? Catherine do you know SRS locations in the Benelux?
Thanks all!January 15, 2015 at 11:31 pm #66099
I would discuss these questions with Prof. Neyns. I am sure his institute has good equipment, and I’m not sure there is much difference between gamma knife and SRS. In the US it is often the insurance company giving the number they will allow for SRS, which I believe is 8. Please watch the webinar on brain radiation we did: for good information. Don’t forget to take care of you! http://melanomainternational.org/webinar/2012/01/radiation-treatment-in-brain-metastasesJanuary 16, 2015 at 12:08 am #66100buffcodyParticipant I know I had a tough time in my early days dealing with radiation therapies distinguishing the different terminology. I just found the below on line and feel that it is an accurate discrimination.
Other Names for Stereotactic Radiation
There is sometimes confusion about the branding of equipment separate from the terminology of SRS or SBRT. Stereotactic radiation may be delivered by a number of different devices; brand name stereotactic treatment machines you may hear mentioned include: Axesse, CyberKnife, Gamma Knife, Novalis, Primatom, Synergy, X-Knife, TomoTherapy or Trilogy. It is important not to confuse these brand names with the actual type of stereotactic radiation under consideration.
How Are These Treatments Different?
Different capabilities: Some stereotactic systems can treat only tumors in the head, others in the head and neck, and others anywhere in the body.
Different schedules: Some stereotactic treatments may be best given in a single session, others may be given in a few treatments over several days.
Different ways to achieve accuracy: Different systems use different ways to keep patients in the correct position. Some use customized holders that keep the patient immobile, and others have the machine track any movement of the patient.January 16, 2015 at 4:08 am #66101LesliParticipant
Although many of us understand the shock of the “next new issue,” I want to second Juan here. I was first diagnosed as Stage IV in September 2013 without a hint of issues. At that time, I had brain mets that wouldn’t quit (I began with the Braf combo for 9 months)– a total of 13 that ranged in size from 16mm to 3 mm. My oncologist talked about them in terms of “showers.” I have had a total of 5 gamma knife surgeries, where up to 5 at a time were treated, and SRS for a craniotomy cavity.
I have been told by my oncology team that Gamma Knife surgery is “theoretically” slightly more accurate and they have the gift of treating more at once with confidence. Gamma Knife is slightly harder on the nerves, since it involves screwing a cage on your head. Drugs are good for this
This treatment is 30 years old and tried and true. I no longer have any live mets in my head.
SRS is slightly more comfortable for most people. Instead of screwing a cage on your head and locking that into place, they put a wet mask on your face that hardens and holds you in place. Most people choose this option.
I opted for Gamma Knife for any semblance of increased accuracy and in the end preferred it as an option. It’s quick, effective, takes only one trip, and the sedatives are great (oh, if I had only discovered pharmaceuticals earlier in my life!).
I want to second Mat here and recommend that your wife avoid WBR. My oncologist considers that as an option of last resort. His words “it’s less effective, can be very debilitating for the patient, and has been outpaced by far better options.”
Best wishes, Rick. We are thinking of you. LesliJanuary 16, 2015 at 2:57 pm #66102
Had the MRI today and they found 11 tumors. They are pretty small though and the reco of the onc plus radio therapist is WBR. I mentioned all advice was to go for SRS at all cost. They can do it but sincerely believe whole brain radiation in this case is best as its low dose is fine for small tumors, it works preventive (in not yet affected areas) and can always be followed by SRS if some increase in size. SRS is deemed tricky because of the amount and the angles needed can cause damage in healthy areas.
I feel they are great doctors so despite all advice maybe in our situation WBR is best after all?
Let me know if you disagree. Would like to start asap. Thanks RickJanuary 16, 2015 at 3:10 pm #66103
I would disagree. Have you discussed with your doc in Brussels? WBR can be very much overkill and take out some cognitive function. SRS or Gamma Knife is far preferable but more labor on their part. I would get an opinon from Brussels and possibly have it done there as well if you can. Please take an hour to watch this by Yale neurosurgeon:January 16, 2015 at 3:44 pm #66104 Hi Catherine,
We went to Brussels today specially for a High Res MRI to confirm yesterday’s CT which was done at our local hospital.
So we talked to our oncologist and the head radiotherapist. The latter recommended 12 days of WBR. Any chance you can find out which place is best in Belgium (or Holland) for Gamma Knife or SRS? Would have to ask for a third opinion then but aren’t we in risk of losing time? I heard Tilburg in the Netherlands has expertise but would have to check with our insurance company.
Thanks RickJanuary 16, 2015 at 4:32 pm #66105JBunyanParticipant
This link gives Gamma Knife Centres in Europe. I had mine in Dec 2013 at the Cromwell in London – the Oncological Neurosurgeons (In My case Prof Lippitz) commute weekly from Sweden (Karolinska University Hospital Solna in Stockhlom) .There is a centre in Brussels :Université Libre de Bruxelles
Hôpital Erasme & Inst. J.Bordet
Route de Lennik, 808,
B 1070 Bruxelles
I would phone them at first to ask for details. I agree to try for it if you can. The fitting of the cage etc is a bit daunting but a minor inconvenience if it works, as mine did. Luckily I am not bothered by such things – they do give you a little local injected anaesthetic in the 4 spots where the cage is clamped through the skin on to the skull. I had a paracetamol when the took it off, as a headache ensued, but that was it.
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