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January 16, 2015 at 4:34 pm #66106JBunyanParticipantJanuary 17, 2015 at 5:15 pm #66107
This is the first time I post or read this thread not being in an ambulance, ER or hospital room… much better feeling!
My wife was allowed to go home last night after only 1 night at the hospital. She is actually doing really good: cognitive function has improved, memory is coming back and she has loads of energy (may be the medicines though). Frankly, as if the two seizures never happened.
She is on dexamethasone (works against swelling) and depacote (anti seizure) pills for now.
Our oncologist and RT initially recommended WBR because it can treat tiny mets now seen on the MRI, its low dose (lower than Gamma it sounded) is fit for the small size of her 11 mets and they said SRS shooting through 11 mets can affect healthy parts of the brain as well (with higher dose than WBR). My wife is 33 and a “knowledge worker” as well. I’d hate to see her lose some cognitive function although that’s the least of our concern know. Driving license issues are also not on our mind now (although I can understand it’s a problem for some of you!).
I challenged the doctors and they will regroup to talk about SRS/Gamma on Monday. Thanks also for the link to the other Brussels hospital that does have a special Gamma Knife department, I’ll call them first thing Monday morning – and will also watch the webinar.
You all seem to point to SRS/Gamma, so will try and fight for this. My key questions now are:
– Is WBR really as bad as you make it sound?
I also read it can work really well for some. Could it not be better suited for our situation with small mets?
– How much time should we take for 2nd/3rd opinions? I’d hate to lose valuable time discussing if it’s more important to “do something”.
Thanks once again. It really helps in deciding and challenging the docs. Also great to hear many of you have overcome this. I feel our MD is losing faith a bit now she has progressed on PD1. Although actually the mets could have occured already during the free fall after she failed the previous treatment. She is feeling really well and I’d love to think that’s the PD1. She felt horrible during the free fall period, and I can’t imagine what else created this unexpected 180 turnaround.
RickJanuary 17, 2015 at 5:48 pm #66108
My husband was doiagnosed about 18 months ago and was on Zelboraf for 18 month until it stopped working and than they found Mets IN THE BRAIN. He had 2 weeks of broad brain radiation which went very easy – the only problem was at first that they did not give him steroid and after 3 days he lost his ability to read and understand wordsand later on had a seizure . But as soon as he strated taking steroids – it came back to him very quickly. Besides not driving – he felt very good. He is now on IPI and tomrrow we will do the braim MRI . So you should not worry from the brain radiation just make sure you get the steroid on time. Good luck TammieJanuary 17, 2015 at 6:05 pm #66109
Thanks Tammie, makes me feel a bit less worse about whole brain radiation. Did your husband have to be hospitalized during the treatment or was it a series of day treatment? Did he have lots of mets, and what size?
Wish you both loads of luck tomorrow!!!
RickJanuary 17, 2015 at 7:00 pm #66110
We live in Israel.
We were quite shocked when CT showed 4 brain mets in both sides of the brain. Our oncologist said that if we had done MRI we would see many more…he decided on large brain radiation and it was 10 sessions 5 days a week for 2 weeks. It takes very short time – about 15 minuets but considerring the need to wait, arriange things, etc – we spent about an hour at the hospital every day. if not for the steroid they did not give him -it could have been a great time, because Michael did not have any side effects. I got al lthe head achs – he did not. He was a buit tired but fubnctioned great so since radiatio nwas at 12.30 every day and I didn’t work because I drove and I wanted to be with him – we had a nice breakfast together every day and went to another restaurant after radiation each day. We jyust skipped wine because qwe were not sure how it will effect him. Brai nradiation is very slight. They asked not to put any cream before radiation just Allovera creme after it, and Michael had no problem at all. From all the people I taled with – if they had steroid they had no side effect. Some lost hair – Michael is bold so he had no such problem and it did not effecct hair in his ey lashed or beared. what L learned is that it is very important to watch carefully his response and report immediatly to the nures or technitian if needed. But is was not a problem for us and I hope it will be easy for you as well. Wish you luck , TammieJanuary 19, 2015 at 8:00 am #66111
Thanks all, will decide today.
Our oncologist and RT in Brussels maintain their reco for WBR, even after a 2nd challenge from our side – and some advice from a US based melanoma expert (let’s not name him, but he’s one of the top guys we all know).
So we’re preparing this route.
I’m making one last check this afternoon, at the other Brussels hospital recommend here for Gamma Knife in Belgium. Unless they are 100% confident that’s the better option, we’ll go for WBR.
Finally, the US based oncologist recommend to stop using dexamethasone (which was given to combat oedema) as it can reverse the effect of Pembro. Our Brussels onc agrees. Thought that’s worth sharing. We stay on Dekapine to prevent the seizures from coming back.
RickJanuary 19, 2015 at 6:28 pm #66112LesliParticipant
Wishing you both the very best. Thank heaven for options, plans, second opinions and Melanoma experts.
Regards, LeslieJanuary 19, 2015 at 7:00 pm #66113
Good luck, and please – update us TammieJanuary 20, 2015 at 11:34 am #66114 So we made a decision: we’ll go for WBR.
The doctors is Brussels had a review of their initial reco and maintained it. I also went to a Gamma Knife Center in Brussels and although they “routinely” treat 10+ mets, the speed of her disease progression (nothing in December 3rd PET/CT, 12 mets on January 14th MRI) and the fact she has disease in other places, led them to conclude it’s best to go with WBR.
WBR will also take out any tumors that have arisen in the last week or were too small to be seen on the scan. They also have 2-3wk waiting period which further increases chances of new mets.
So we’ll make our mask for the WBR today and then start on Thursday. We are completely off dexamethasone, only taking dekapine now. And Voltaren for the bone mets, whose radiation we had to postpone until after the WBR.
In the meantime I hope the Pembro is actually working (see other post) which it really needs to given the speed of disease progression. We are running out of time. The only good thing: my wife is actually feeling pretty good apart from the pain due to the bone mets.
Will keep you posted!
If the Pembro doesn’t work, we may move to Ipi or look into trials or TIL/IL2 I guess. As she responded quicky to the BRAF/MEK combo, we could look into getting into the panRAF trial. But frankly, if something doesn’t start working soon, I’m fearing for the worst…
PS. Life expectancy for brain mets is apparently 6 months?!January 20, 2015 at 5:43 pm #66115
Had the prep for the WBR today – well my wife. Made the mask and even though she’s claustrophic it was no issue at all. Also put her in the CT for prep. Now they’ll have to let the computer do some work and then we’ll start on Thursday. 5 days only. And the machine they have is brand new, so we hope the side effects will be minimal and that the treatment is effective. Really hope no more new seizures or need for dexamethasone. We had to take that for a few days against the oedema but apparently it counteracts the PD1 so we stopped ASAP.
Will keep you posted.
After the 5 days we plan to start the radiation for the bones as well. At the moment all tumors seem to be growing – well at least they hurt more and more: bones, liver, nodes under her armpit. May also be the temporary effect of PD1 that things sometimes get worse before they get better. Let’s hope that’s the case.
RickJanuary 20, 2015 at 10:04 pm #66116Catherine PooleKeymaster
So sorry to get all of this news, how quickly things seem to turn. I hope too that the WBR works well for her and new equipment is certainly a plus. Keep us posted as we all care very much here and hope things level out for the two of you. Don’t forget to take care of you too.January 23, 2015 at 4:36 pm #66117
We made the mask for the WBRT on Tuesday and started the therapy yesterday. Mask-making was OK, even though my wife’s claustrophohic, putting it on when hardened and fixed was a bit trickier but overall the quick 10min treatment (first of 5) was OK.
Back home she did start to feel the side effects: headache, fatigue, minor fever (38C) and difficulty to concentrate, eat and swallow. Also some minor ear pain and sore throat.
She slept well and in the morning felt a lot better.
It turned out there were software issues with the radiation machine (brand new!) so despite a 3-4 hour wait she couldn’t get her treatment today. Hopefully it works again on Monday.
We did see our former oncologist (we moved to a melanoma specialist in Brussels) and he gave us the Xgeva shot we needed. On the way out he asked we why we had moved to immunotherapy after the progression on the BRAF/MEK combo. REALLY?! We have a 7mth old daughter and my wife is 33 – why would we not? Plus at that time there weren’t even any brain mets.
Anyway… hopefully on Monday we can take another step in the treatment and in 10 days get the 4th PD1 infusion.
Best, RickJanuary 26, 2015 at 12:02 pm #66118
New seizure today couple days after her first treatment. Not as Sévère as last week (first) hope this doesnt mean we have to stop?!January 27, 2015 at 11:49 am #66119LesliParticipant Hi Rick,
When I had severe swelling from a previously treated brain metastisis that was not responding to gamma knife, I was put on Levetiracetam (marketed under the trade name Keppra) to control for seizures. I ultimately had a craniotomy on that tumor and remained on Keppra for six months. I am assuming your doctors are controlling for swelling?
Regards, LeslieJanuary 27, 2015 at 3:50 pm #66120msue5Participant
Sorry to hear this news Rick. The ups and downs of treatment are hard to take. Sometimes harder on the caregiver. My husband often says he feels helpless but I don’t know how I would make it without his never ending support. Take care of yourself too.
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