› Forums › General Melanoma Community › Mets in brain growing again after WBRT and nivo/ipi, are we out of options?
- This topic has 9 replies, 6 voices, and was last updated 7 years, 2 months ago by
marta010.
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- March 12, 2017 at 6:49 pm
Hi all, I'm a bit hopeless at the moment. Steven is in hospital again. Short history since diagnosis early January: mets in brain (some big 3-5 cm), one big met on adrenal and others on spleen, thyroid and lungs. GammaKnife denied by insurance because of bigger tumors in head, so he had 10 times WBRT in January, tapered off decadron and got nivo/ipi on Feb 8. Back on steroids after few days because of brain edema. A CT scan mid Feb seemed to show that tumors are shrinking…. During the tapering off the last month he got weaker and especially the last week weaker again and less responsive, bladder issues, not able to walk by himself, this all happened last few days (still on 12 mg decadron)… Yesterday to ER, and MRI shows that the three bigger tumors in the head have been growing again, some even from 3 to 5 cm! And more edema around them, causing the symptoms (while still on 12 mg decadron, that surprises me). The other tumors seem calm. Now back on 16 mg decadron. Tomorrow talk with oncologist, but I think the talk will be about hospice… My questions: do you think pseudo-progression can look like this? Do you think he is a non-responder to nivo/ipi? Steven cannot travel really, he is so weak. What would be other options? And if you think we are out of options that is okay too, because that is what I feel right now.
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- March 13, 2017 at 12:25 am
Dearest Judy,
I have no answers for you only empathy. My first IPI nivo scan showed progression and we are waiting for a second scan to confirm.in 2 weeks.Think for now you have to sit tight ,see what the onc says and hope IPI nivo is taking effect.
Treatment can run in parallel with hospice care..they are expert with pain relief regimes.
IPI nivo response time vary.. Steven may still show a positive response but we can hope.
Bet wishes
Deb
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- March 13, 2017 at 11:11 pm
Hi Deb, thank you for responding! When you had progression, was it in all tumors or just one or a few?
They will do another CT scan of his abdomen to see what has happened there with the tumors. Doctors here think it is probably not pseudoprogression as it apparently is quite a mess around two big tumors in the head and seven other are calm but still sitting there. Well, for now, we just have to get his edema in the brain under control and he will get some more steroids, as the increase from 12 to 16 mg dex per day didnt do much….so we will have to take it day by day and hour by hour….in the meantime he will stay in hospital, me too, and wednesday when we know more about other scan we will see where to go….
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- March 13, 2017 at 1:51 am
Have they talked at all about removing the larger tumors? It sounds like the swelling is pushing on some of the areas in the brain that affect mobility. My Dad had the same situation, his 3 larger tumors swelled up after Gamma knife to the size of a lime, he couldn't walk feed himself etc. Once they did the Craniotomy he had immediate relief. I don't know if any of this applies on your situation, but I thought I would put it out there. Dad had 4 days of massive steroids and it didn't help, thats when they decided on surgery. Also, I have to ask if the doc treating him is a Mel specialist? Please hang in there, keep the faith, hope things calm down for you both really soon.
Take care. Jen
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- March 13, 2017 at 11:43 pm
Hi Jen, surgery does not really seem to be an option at the moment. I am a little hesitant about it too, Steven as well, I think it also depends on how the rest of his tumors are doing in his body, and he will still have six tumors left in the brain….. So not sure about that….. there is not a melanoma specialist here but the whole team of oncologists and radiology looked at his case . Tomorrow he will have a CT of his abdomen to see how things are there…
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- March 13, 2017 at 1:07 pm
Judy – just want to echo the earlier comment on the possibility of a craniotomy to remove the larger tumors. My husband has had two successful surgeries to remove tumors that were resistant to gamma knife treatment. Keeping you and your husband in my thoughts and prayers.
Ann
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- March 13, 2017 at 11:45 pm
Thank you Ann. Did your husband have other tumors at that time and was he in good shape?
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- March 16, 2017 at 7:26 pm
HI Judy – My husband's first craniotomy was in Sept of 2012, about 6 months after his initial diagnosis. His tumor burden in his body was primarily in his lymph nodes in his neck and was not impacting his physical condition at that time. His brain's always been the troublemaker. He recovered from the surgery pretty quickly but went on to have significant issues from radiation damage to his mouth. Second craniotomy was Feb 2016. He had recovered from the mouth issues by this time so was in pretty good shape. Still about the same tumor situation in his body. By this time, he'd had 4 previous gamma knife treatments and always bounced back. Seemingly overnight, one of the treated brain mets grew rapidly. By the time we got in for an MRI, he was having some difficulty with his gait and vision. He'd tell you that brain surgery has been easier to deal with than the drug side effects. Thinking of you as you're going through this tough patch.
Ann
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- March 15, 2017 at 1:01 am
Hi Judy,
I am wondering the same thing about my dad. He also had wbrt and ipi/nivo. He quickly went downhill after his second treatment and we have never been given straight answers about what could be the cause. The strange thing is his brain tumors were all either stable or decreased in size since November except on his last scan a few days ago. A few have grown by 5mm and one has decreased. The doctors seem too quick to just say it's progression and hospice has been brought up. We just aren't ready to believe that yet! I am wondering if there is something else we can do too. My thoughts are with you and your family.
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