- June 29, 2018 at 5:42 pm
My husband is the patient, 3C, chest. SLNB and WLE, three positive nodes, right axilla and supraclavicular – so going in two different directions. He’s in a blinded study, nivo or nivo/ipi at a lower dose. The working assumption is he’s on the nivo/ipi arm.
We’ve been very pleased and impressed with the melanoma center specialists and staff. This is the first “huh?!” question we’ve had.
Initially he had a PET/full body CT (initial diagnostic procedure, unrelated to study), then CT and brain MRI to be admitted into the study. Every three months he gets a chest/pelvis CT scan, part of the study. He just had another one which was clear, yay.
My husband asked his doctor about a brain scan – CT or preferably MRI given that it may pick up problems that a CT may not – and was told that given the location in the chest, it’s not standard of care unless he has symptoms such as headaches. IOW, it’s statistically unlikely to go to the brain, more likely to go to an organ like the lungs.
The director (his dermatologist) and his oncologist are immersed in all things melanoma, keep up with the literature. Anything we’ve brought up b/c of forum posts his oncologist has been familiar with, whether new approvals, a study, changes in surgeries or treatments, etc.
But not doing brain MRIs periodically is surprising, since mets are tricky devils. Why wouldn’t you have ongoing monitoring, if not in-study, separately? You don’t ignore the rest of the body; why ignore the brain?
(Thinking about Doragsda’s recent posts and his wife too.)
This isn’t a question about insurance approval. That’s a different ball of petunias, though could be related, if a center has tried to get approval and the majority of times it’s disallowed.
Thanks – Beth
- June 29, 2018 at 7:22 pm
I'm in the same study as your husband, I think just a few weeks ahead. The study pays for what is specified in the study, which – if I remember correctly – is just or primarily the CT scans (there might be an MRI sprinkled in there, maybe just at the end). You onc might add things though. My onc is going to ask for a full-body PET scan at 6 months. That's fine with me. I will be curious to see what happens with the PET scan this time regarding insurance. They refused it the first time, which took me almost 4 months to get reversed.
- June 29, 2018 at 11:09 pm
Hi Warren – hope you’re doing well!
Yes, absolutely, the study pays just for CT scans – and maybe a brain MRI at the end? Otherwise why would they have done one as a baseline?
Our question is apart from the study, relating to what the doc said was standard, given the location (chest). Ignoring the brain gives me pause. (Not paws.)
I had read that PETs can light up too easily, relating to glucose so they’re often not done – though one was done when my husband first became a patient that his insurance company paid for.
Btw, we’re hoping my husband can stay in the study – he’s having bad gut side effects and they delayed the last two infusions. Once more and he’d be off study, ugh. We’re meeting with a dietician connected with the cancer center next week who’s emailed me some suggestions, and I’ve spoken with a well known dietician who helped me tons a few years ago, so we’re hoping this resolves.
MichelleRHGParticipantI dont know if this will give you peace of mind or not, but I go to MDAnderson and at Stage 3 I got CT of body every 3 months, brain MRI annually. Once I hit Stage 4 the brain MRI has been moved to every 3 months.
- June 30, 2018 at 12:20 am
- June 30, 2018 at 7:03 am
I was excited to see your post regarding brain MRI's. I just encountered this myself and was wondering the same. I went to MD Anderson for a second opinion regarding something else and the first question the oncologist asked was when was the last time I had a brain MRI? I stated almost a year ago when I first started treatment. for stage IV melanoma. He stated I needed to have one right away for some of the same reasons listed. Pet scans doesn't always pick up the mets in the brain and the liver, lungs, and brain are the organs they like to metastize in. Their standard of care is every 3 months but my other oncologist does not routinely schedule them. Not sure why, but was planning on asking. So, I guess it depends on the facility and oncologist for standard of care. Maybe, there are other reasons why the difference in standard of care. I would like to know if any other stage 1V have rountine MRI's?
- June 30, 2018 at 1:24 pm
There is no absolute definitive standard of care for folks with Stage III and IV melanoma, esp in regard for scanning. Having spent many years as a Stage III melanoma patient, I was observed with a buffet of scannage depending on how the wind blew from PET's to CT's to simple chest x-rays. In fact, the chest x-ray was the test being used when the lesion in my lung was discovered. So…long way around to say that most of the time….folks with Stage III melanoma are followed with some regimen of scans. Most often "every 3-6 months for 2 years, then every 3-12 months for 3 three years", then "as needed" or annually. (See how specific that is?????)
Here is a link to a pretty up-to-date melanoma care guide by NCCN:
Folks in trials usually get scans every 3 months, because that is how the trial is set up. MRI's of the brain for folks who are Stage III are usually done only annually, or only if there are worrisome signs and symptoms, or if the patient advances somewhere else in the body. Folks who are Stage IV are a whole other ball game…with similar follow/up to those who are Stage III in a trial but with the routine inclusion of brain MRI in their follow-up plan.
SO, now that I have demonstrated that all that is clear as mud….hang in there. Press for the care you think YOU need. I wish you all my best. Celeste
- June 30, 2018 at 3:57 pm
Hi Beth, just to add one little point to the conversation, the brain MRI done before the trial started would have been a requirement of the drug company to exclude any patient before the trial started, if a brain met was picked up. Big pharma don't like their trials messed up with brain met patients. This is how I found my 3 little tumors back in 2013, with so many of us, around 50% having brain mets when we get to stage 4 you would think that it would be standard of care. After having that Mri back in 2013 and then treated with SRS, I have had MRI scans every 3 months since. We just decided to go to every 6 months going forward. Best Wishes!!!Ed
- June 30, 2018 at 6:48 pm
Hi Ed –
“with so many of us, around 50% having brain mets when we get to stage 4 you would think that it would be standard of care”
That! It’s like let’s ignore a big chunk of the body that mets like to play hide and seek in. But if you have headaches/dizziness/etc., then we’ll take a peek.
And congrats on the switch from 3 to 6!
- July 10, 2018 at 2:44 am
Add stroke to that list. If I didn't have a stroke they never would have given me a brain MRI and then I wouldn't have had the follow up scan which found the aggresive tumor while I was off treatment due to side effects.
- June 30, 2018 at 7:06 pm
BTW, I just looked at the study procedures again, and it says “Brain scan (CT or MRI) (may be performed as determined by your study doctor).”
They required a CT scan or MRI of “known areas of disease,” and a lot of tests, of course.
Disappointedly, he’ll probably be booted out of the study anyway, unfortunately; started prednisone today. If he was on the nivo/ipi arm (which we think), he got two “mini” doses of ipi of the nine. Our cat is on pred too. It’s a veritable pred party!
- July 1, 2018 at 4:09 am
I think many others have answered on the schedule for brain MRIs – for me at Stage III with disease still present it started off every three months when in a trial then when kicked out then every 6-9 months or so but if the CT shows spread anywhere else then of course there would be an immediate brain MRI. So i think your doctors are fine on this.
If your husband leaves the trial, and if he is on ipi/nivo will you go to adjuvant nivo now (or adjuvant keytruda if allowed) once prednisone is over or is that it? Is this an option?
best wishes from DC
- July 1, 2018 at 1:58 pm
Hi Mark –
Thanks Mark, I feel better about the brain scan issue.
I think he’ll be booted from the trial. The infusions were delayed, not skipped, so the study would continue an extra four weeks for the two missed infusions. But while blood in the stool stopped after a couple doses of prednisone and eliminating insoluble fiber, and other symptoms partially calmed (so fast!?) the timing probably wouldn’t work due to the pred. And even if it did, would he want to go back on if he’s on the ipi arm? It’s great being in a study (no insurance!) but if it’s ipi that’s messing him up, he’d have 7 more nivo/ipi combos out of the original 9.
He absolutely would want to go on nivo only. And if he did, we’d be hoping even more that he had been on the nivo/ipi arm and the nivo alone wouldn’t mess him up.
- July 7, 2018 at 5:01 am
On my very first oncology appt, Dr. said first before Immunotherapy he wanted a brain MRI, if i had tumors in brain they needed to be treated first. We read 60% of melanoma the tumors spread to brain. I was fortunate that it was clear. But after having taken off the Opdivo/Yervoy combo treatments, (I had 3, missed the 4th) my liver numbers were toxic and i was put on high levels of prednisone for 5 month. Then i was given new brain mri, showed two suspicious dots. He ordered one 4 weeks later, no change. Now i had one last week and waiting for results. So that was Jan, Feb and now end of June. I am thinking good thoughts and hopfull and about results. Sharon
- July 7, 2018 at 1:15 pm
Sounds like a vigilant, concerned doctor. Were you stage four for your first brain MRI?
”We read 60% of melanoma the tumors spread to brain.”
Do you mean in 60% of stage 4 cases melanoma spreads to the brain?
My husband had a whole body PET/CT scan with his first appointment, and another CT plus a brain MRI for the study shortly afterwards. I got a more clarification and re-visited the study document. The study requires and “will” pay for a CT scan (not brain) every 12 weeks. It “can” pay for a brain MRI or brain CT scan every 12 weeks as determined by the doctor. Translation: there needs to be a reason for the brain scan.
If my husband wants a brain scan the doctor will order one to go through our insurance company. At his next apointment we’ll discuss with the doctor.
- July 7, 2018 at 4:13 pm
I was diagnosed with stage 4 melanoma in August 2015. Since then I have had a PET scan every 4 months. I have had only 3 brain MRIs ( on 8/04/2015, 6/6/2016 and 2/22/2018 ). Prehaps because no brain MRI showed cancer. I have had melanoma only in bones and lymph nodes. My oncolcogist told me that the brain is the organ to which melanoma spreads most often. I still receive Opdivo every 2 weeks and recently had radiation to a lymph node with cancer below my left jaw.
- July 8, 2018 at 2:06 pm
Thanks, Edwin – and hope you’re doing well – sorry about your recent treatment!
What I still can’t wrap my brain around is if doctors think the brain is the organ to which melanoma spreads most often, why aren’t brain MRI’s done more often?
I’d also be interested in what scans stage 3 patients generally get, But I guess there’s no “generally.”
And why some doctors prefer PETs and others CTs (for the body). I had thought PETs can light up too often, so CTs would then be needed to rule out problems PETs pointed to.
Melanoma breaks rules.
- July 8, 2018 at 5:45 pm
My PET scans have been done with concurrent CT scans. My test result is titled "PET CT SKULL TO THIGH FDG". My brain, kidneys and baldder show active in PET scans. PET scans can miss brain, kidney and bladder cancer. I have recoved from my radiation treatmens; I bicycled 25 miles this morning. A September PET scan will show the status of my neck cancer.
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