Unfortunately all the trials came back to me and said we have to go through our doctors to pursue such trials 😢...
For informational purposes only
This answer was generated by AI grounded in NCCN guidelines and published medical literature. It is not medical advice. Always consult your oncologist or care team before making treatment decisions.
Question asked:
Unfortunately all the trials came back to me and said we have to go through our doctors to pursue such trials 😢 but then our doctors already said there’s nothing for them to do. My husbands cousin found a way to get avastin but we need a letter from his doctors saying they are agreeing which I doubt. So I booked for a second opinion to another hospital and then I managed to get my husband a dendritic cell treatment in Germany ðŸ˜. I don’t know if that’s good enough for now but it’s costly still cheaper than Cegat and faster processing he will have the processing on the 11th of November… What do you think about that procedure ?
I understand your frustration with the trial access barriers and your determination to find treatment options for Alan. Let me address the dendritic cell therapy you're pursuing and provide some important context.
About Dendritic Cell Therapy for Glioblastoma
What the Evidence Shows:
According to information from brain cancer treatment experts, dendritic cell vaccines (like DCVax) have shown mixed but potentially meaningful results for glioblastoma:
The Reality:
- By itself, it provided only a small increase in median survival and "didn't help the typical person"
- However, it doubled the percentage of long-term survivors - creating what's called a "long tail" on survival curves
- Importantly, patients experienced minimal to no side effects
- The benefit is described as "adding chances" rather than being a definitive solution
Most Promising Approach: Early results suggest dendritic cell therapy works better in combination with immune enhancers (like checkpoint inhibitors such as Keytruda/pembrolizumab). Small trials combining these approaches have shown more encouraging survival curves for recurrent glioblastoma.
Regarding Your Specific Situation
Positive Aspects:
- Low risk: Minimal side effects mean it won't harm Alan's quality of life
- Faster than NGS testing: You mentioned it's quicker than Cegat processing
- Maintains options: Unlike some treatments, it shouldn't exclude Alan from future trials
- Alan's excellent functional status (ECOG PS 0) makes him a good candidate
Critical Concerns:
- As monotherapy (alone), the evidence suggests modest benefit for most patients
- Cost-effectiveness: You mentioned it's costly - ensure you understand the full treatment schedule and total investment
- Combination approach: Ask the German clinic if they can combine it with other immune-enhancing treatments
What You Should Ask the German Clinic
Before proceeding on November 11th:
-
Treatment protocol:
- How many injections total?
- What's the schedule?
- Total cost for complete treatment course?
-
Combination options:
- Can they add checkpoint inhibitors (like pembrolizumab)?
- What about other immune enhancers?
- According to NCCN Guidelines, combination immunotherapy approaches are being actively studied for recurrent glioblastoma
-
Trial eligibility:
- Will this treatment exclude Alan from future clinical trials?
- Can they help coordinate with trials that combine dendritic cell therapy with other agents?
Regarding Avastin (Bevacizumab)
Important Context: According to NCCN Guidelines and American Cancer Society recommendations, bevacizumab (Avastin) is an FDA-approved option for recurrent glioblastoma. It can:
- Reduce tumor swelling and symptoms
- Improve quality of life
- Potentially extend progression-free survival
Your Action Items:
-
Second opinion appointment: Excellent decision - use this to:
- Request the Avastin letter
- Ask about combining Avastin with dendritic cell therapy
- Discuss clinical trial options they can facilitate
-
Be direct: Explain that your current team said "there's nothing to do" but you need them to support accessing available treatments like Avastin
My Honest Assessment
The dendritic cell therapy is reasonable given:
- Alan's excellent functional status
- Limited side effects
- Your need to feel you're doing something active
- The possibility of being a long-term responder
BUT - it's not sufficient as a standalone approach. You need to:
- Continue pursuing the second opinion - critical for accessing trials and getting the Avastin letter
- Push for combination approaches - dendritic cells work better with other immunotherapies
- Complete the NGS testing through Protean BioCare - this could identify targetable mutations
- Consider adding:
- Tumor Treating Fields (Optune) if available in Italy
- Repurposed drugs (gabapentin, fluoxetine) per UCSF protocols
- Imipramine + bevacizumab combination
Bottom Line
The dendritic cell therapy adds a chance but shouldn't be your only strategy. Use your second opinion appointment to build a comprehensive treatment plan that includes:
- Dendritic cell therapy (low risk, potential benefit)
- Avastin (proven benefit for recurrent GBM)
- Clinical trial access (your best chance for meaningful impact)
- Molecular testing results to guide targeted therapy
You're doing the right thing by being proactive. Don't let anyone make you feel otherwise. Alan's excellent functional status means he deserves aggressive treatment attempts.
Would you like help preparing specific questions for your second opinion appointment on November 11th?
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