› Forums › General Melanoma Community › Questions about lymphocytes and trial protocols + update
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sister of patient.
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- June 6, 2017 at 4:02 pm
Hi all,
Haven't updated on my sister, Leisa, in a little while, so here goes:
– now down to one tumour left in the liver (from 5) – that's the biggest change since her last thoracic scan 3 mos. ago
– spleen is still working at getting clear but from reading the scan it's hard to tell how many are left there – they seem to only talk about the largest one (or at least only give measurements for the largest).
Best news: nothing new and no further progression – yayyyy!!!!
She had a brain scan yesterday morning and we're holding our breath waiting for this one. If all is stable, she'll be cleared to drive again. Her last scan 3 mos ago was rated as "stable" – there were no new visible lesions. There were however innumerable little white spots which they wouldn't rule out as new mets starting but they really felt these were the result of WBR damage beginning to appear … and as it coincided with cognitive damage showing up (her short term memory has been affected), we're hopeful the doc's correct in that appraisal.
1st Q – Re. lymphocytes – she peeked at her blood results a couple of weeks ago while getting an infusion and there were several items circled in red – one was the lymphocyte count – it's low. Researching this, it seems that low lymphocyte counts are a disease marker (and associated with poor survival) but I'm wondering if hers are low specifically because her spleen is still compromised. Otherwise, you'd think that after 20+ infusions, that count would be normal or even a bit high. If anyone has any info on this, I'd appreciate hearing it.
2nd Q – Re. trial protocols – originally, she was to have 24 infusions of nivo over 48 weeks (a couple of times, we've been given wrong info about this, including that it was to be 48 infusions over 2 years). She's had 22 infusions and though they are giving her one more next week, they say she's done and that her trial is not so much concerned with number of infusions but that it's the time factor – the 48 weeks – that's more important. Has anyone else ever encountered this?
She's undertandably nervous about coming off treatment when we are nowhere near NED. Yep, we know the nivo will keep working but still … A year ago, with a huge tumour burden and numerous brain mets, this looked hopeless – now she's come this far, it seems crazy to go with "wait & see" when we are (possibly) so close to NED. We also inquired about removing the spleen completely – nope, they won't.
So, that's where we are at. Just want to say that, in the midst of our successes, we know how quickly this disease can turn, for better or worse and we continue to hope, pray and plead with the "gods that be" for that "magic bullet" for everyone here!!!!
Best thoughts and big hugs to all of you!!
Barb
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- June 6, 2017 at 10:43 pm
Hi Barb, first thing is I am not a doctor so take anything I say about this with that in mind. My experience with my blood work and what different nurses circle on my sheets is based on 40 months of treatments at the Ottawa General Hospital. The staff is first of all great but experience with Immunotherapy drugs is new for the whole team. What to look for as far as IRAE's is something that I have watched them get better at but they mostly see patients that are still getting treated with Chemotherapy and like any profession, we get better by way of repetition. So to you question about blood lymphocytes and the level being low, I have not heard of that being used to determine if Immunotherapy is working or not. In fact, scans seem to be the only way to really know how some one is doing on Immunotherapy drugs other than how they are actually feeling. Now if they had taken a biopsy of a tumor and found that there is no TIL's present or Pd-L1 then I would be worried. Now as far as coming off treatment, what has your Oncologist informed you about options? Can she get access to Nivo again if she was to progress or is that it for Nivo. Second thing I would want to know is what the plan is if Nivo isn't available, can she get access to Pembro in Ontario since it is approved for stage 4 patients or is there other trials available in Hamilton, if not, get a referral to Toronto and maybe the TIL's program at The Princess Margret Hospital. Best Wishes!!!Ed
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- June 6, 2017 at 11:57 pm
Hi Ed – Thanks for replying.
Yep, that's our major concern – that there is no plan B. As I understand it, ipi/nivo, nivo & pembro are all approved for firstline treatment now here but they were not approved when she started treatment last year. Because she started treatment under a "trial," she doesn't fall into any "first treatment" category, so, apparently that is it for nivo. And currently, if you fail nivo, you can't get pembro (I'm in the midst of research for a letter-writing campaign and am going to lobby health authorities in all provinces as well as the federal goverment and drugmakers to tell them we need these options available – for example, I'd like to know that pembro could be an option if her brain mets recur).
Also, she's an excellent responder and hasn't failed any treatment yet which is why the onc wants to just "monitor." But I am inclined to think we should be looking at what other trials she might qualify for. She's never had another biopsy since initial diagnosis and nodal dissection. At one time, she had tons of sub-qs – there's nothing available to test now without surgery.
She's come so far, it just seems crazy to stop when she's not clear yet.
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