My daughter was diagnosed with GBM last December. She has finished radiation in April and is continuing the oral chemotherapy. She has done quite well physically but her last MRI was showing some 'enhancement' causing some concern. Yesterday she had a Pulmonary Embolism, so she is in the hospital being monitored and given blood thinners. There is a concern since her platelets are already borderline low. I read last night online that blood clots is 7 times more likely in cancer patients and that Pancreatic and Brain cancer patients seem to have an even greater occurrence of PE. I was surprised that her doctors had not warned her of this possibility and the symptoms to watch for. We are just lucky she decided early in the morning that something wasn't right and immediately went to the hospital. I hate to think about what could have happened if she had waited longer.
Also, she is taking a typical drug cocktail. I am wondering if there are anyone out there following this blog who have had a similar experience and if there are certain supplements that should be avoided now that she has had this clot.
Also, her records have been reviewed by UCSF for a possible clinical trial. She doesn't qualify at this time. I am wondering if have a Pulmonary Embolism would disqualify her for clinical trials. Any advice, answers??
Linda W.
Every clinical trial has its own set of exclusion criteria. Being on current treatment for a DVT/PE would, I imagine, be disqualifying for many. Once stable, ongoing anti-coagulation therapy would likely disqualify from some, but not all trials.
ReplyDeleteAll US trials are listed at clinicaltrials.gov. Exclusion criteria are listed there.
I'm unaware of any agents discussed here being pro-coagulant in effect. However, some have anti-platelet activity. These should be taken only in consultation with the NO.
Aspirin, other salicylates, NSAIDs (including celebrex) should be taken with caution while she's on anti-coagulant therapy.
I believe some other agents might have modest anti-platelet/anti-coagulant effects, but not strikingly so. Ultimately, close consultation with your NO will be needed--he should have the opportunity to veto anything.
Linda,
ReplyDeleteI have no history with Pulmonary Embolismor clots but I have had some of the other experiences your daughter is going thru. I will provide my experience below:
I too had an "enhancement" show in my MRI's between radiation and start of TMZ maintenance (oral only chemo). Mine was 3mm in size had has not grown since that MRI last September. I was on the Velipar trial during my 1st 6 cycles of TMZ maintenance and experienced low platelets each month at the 4 week period and sometimes had low ANC levels at the 3 week period. For the low ANC, I took bactrium and for the low Platelets, I just waited a week before starting the next TMZ/valibar cycle. At the end of the 6 cycles of valibar, I experienced 3 additional weeks of low ANC/platelet levels. I ended up stopping all supplements and drugs for a week to give my body a chance to recover. Since then, my blood levels have continued the 5 week recovery cycle.
Marc