I previously had targeted radiation to my skull. They made a tight fitting mask and put my head in it and clamped this to the table. I have confinement claustrophobia and this was just plain torture. For the last of t treatments I took ativan.
now I am going to have radiation to cervical vertebra number 1 which has fractured. The say there is little hope of healing if it is not treated.
I will have the mask fitting soon and the development of a treatment plan. I am trying to figure out how to make this more tolerable.
Is Ativan the best thing to take? I only have 20. The instructions say to take twice daily to relieve anxiety and to take one a half hour prior to treatment. I am not sue if I am supposed to do both. Twenty pills for 5 treatments would be 4 per treatment.
So I can premeditate maybe ??? hours before and be sure to take on a half hour before? Has anyone found a good dosing for this sort of anxiety?
Might cannabis help? I have all sorts of cannabis extracts. I am afraid that THC might energize me instead of relaxing me. I have or can get some indica prominent strain? I also hav high CBD, low THC.
Maybe I should do some experimenting in advance.
Is there any way to increase the intensity and reduce the time spent in the mask that I might be able to ask for?
I just had a cervical MRI and they used a "similar" clamp but it was generic not as tight fitting. I managed to survice this and it took a half hour or more.
Why do they always underestimate the time for scans and treatments?
There is also the possibility of not doing the C1 treatment at all. Will it really be worth it? Is there a good chance of healing after treatment? I have an appointment with a neuro surgeon but unfortunately I think it is after the treatment.
I think I have about a week to figure this out. I am really freaking out. I wish they could put me out completely for the treatment.
Written by
spencoid2
To view profiles and participate in discussions please or .
I am sorry, my brother. I feel for your suffering and apprehension. I’ve had to have that plastic mask for two different radiation treatment courses - first in 2016 for my C2 and then in 2023 for the right shoulder (imagine my dismay when they said they needed the full cage again). It is a miserable experience when the treatment is not swift.
I learned from the first head cage that the feeling on my neck and around my jaw was especially triggering, so with the most recent one I made sure my mouth and jaw were as relaxed forward as possible with my teeth/jaw not clenched (teeth not touching) and I didn’t allow the techs to push my jaw back tight when forming. This allowed me to do 4-7-8 breathing (see: medicalnewstoday.com/articl... when strapped down awaiting treatment.
For relaxation, I used (and use) 50 mg (normal dose) of Benadryl about an hour before scans simply because I am a medication lightweight. Maximum dose of Benadryl is 100 mg.
I also had the techs put a note in my file that I prefer to be talked to when possible to give me time and activity updates. So a bit of banter.
I call all of this BBB - breathing, Benadryl, and banter.
Your fitting will likely be the longest appointment.
As to whether the treatment to C1 is worth it, that’s a personal choice. I know my C2 healed, but not normally. Ask questions on how they expect your specific case to resolve.
link lead to a page not found how long was your C2 treatment? i plan to take atavan for the fitting and figure if that is ok the treatment will be i survived the last one. i think they offered a reduced mask
if they just gave us a panic button like they do for an MRI i would be much better about it
last time they said i just needed to wiggle my foot and they would come right in. i fly was buzzing around before they started and i tested the foot wiggle which worked.
they also said that the vault the radiation machine is in is about the safest place to be in an earthquake or other emergency. they joked that that is where they are headed if there is an earthquake.
i will also ask how to release the clamp but that is probably impossible for the head treatment they clicked it down three times.
chat says that they will knock you out completely but it requires an anesthesiologist and not all places will do that.
also you said you had c2 in 2016 and you are still alive. that makes me feel a little better about bothering with it. maybe the next chemo will give me more time?
how much disease did you have in 2016 just c2 or lots of places. one doctor keeps saying that mine is "everywhere"
Ativan is a good drug for this, it helps with anxiety and it helps you forget.
I think with your worry about dosing and whether you have a sufficient quantity, having a conversation about this with your prescribing doc would help you know how much to take and assure you there is more if you need it.
On which treatment are you now? Could you add some system treatments? I understand that you are trying a local treatment now. I am not a doctor but my first medical oncologist advised me to give a priority to system treatments. Of course you can combine them with radiation etc.
It sounds like you're dealing with a very stressful situation, and your concerns about claustrophobia and the upcoming radiation treatment are entirely valid. Let’s break this down to address your questions and concerns:
1. Managing Anxiety with Ativan
Dosing: Ativan (lorazepam) is effective for managing anxiety, especially in situations like yours. The typical approach for anxiety-inducing procedures is to take a dose about 30–60 minutes before the treatment. Since you mentioned having only 20 pills, clarify with your doctor whether you should take additional doses earlier in the day to manage anticipatory anxiety.
Cumulative Use: Using 4 pills per treatment might exceed what's typically recommended. Discuss with your doctor the safest and most effective dosing schedule for your needs.
2. Cannabis and Anxiety
THC vs. CBD: THC can sometimes cause increased anxiety or agitation, especially if you’re not used to it. High-CBD, low-THC strains or products (like CBD oil) are more likely to have a calming effect without unwanted stimulation.
Experimenting in Advance: If you're considering cannabis, test small doses in a calm environment to gauge how your body responds. Make sure not to mix cannabis and Ativan without consulting your doctor.
3. Mask Confinement
Reducing Discomfort: Explain your claustrophobia to the radiation team. They may be able to adjust the process to make you more comfortable. Sometimes, they can allow short breaks or provide music/headphones.
Intensity vs. Duration: Increasing the intensity of radiation to shorten treatment time might not always be possible, as it depends on your treatment plan and safety considerations. Ask your oncologist about this possibility.
4. Alternative Sedation Options
If Ativan isn’t sufficient, there might be other options, such as stronger sedatives or even mild conscious sedation. Discuss this with your care team.
5. Weighing the Pros and Cons of Treatment
Benefits of Radiation for C1: Radiation might stabilize the fracture, relieve pain, and reduce the risk of further complications. However, ask your radiation oncologist and neurosurgeon about the specific likelihood of healing and potential risks.
Delay in Neurosurgeon Appointment: Consider asking if the neurosurgeon appointment can be moved up or if they can review your case before radiation begins.
6. Time Underestimation
Scans and treatments often take longer than estimated due to prep time, setup, and patient-specific adjustments. Try to prepare mentally for a slightly longer duration than the estimate.
7. Being Fully Sedated
Full sedation is not typically used for radiation because of safety concerns and the need for precise positioning. However, it’s worth asking your team if there’s any option for deeper sedation in extreme cases.
Next Steps:
Consult Your Doctor: Discuss all your concerns with your oncology team. Be clear about your claustrophobia, and ask for specific recommendations on medications and any accommodations they can make.
Plan for Support: Bring a support person if possible, and practice relaxation techniques such as deep breathing or guided imagery to prepare for the mask fitting and treatments.
It’s understandable to feel overwhelmed, but you’re taking the right steps by seeking advice and preparing yourself in advance.
It seems like you're in a supportive community where people share their experiences and advice, which is great. Here are some thoughts on the comments and additional advice:
1. Mask and Treatment Anxiety
Joe M’s Suggestions (BBB):
Breathing (4-7-8 technique): Deep breathing can help you manage anxiety during the process. Practicing this technique beforehand might make it easier to use during the actual treatment.
Benadryl: If Ativan alone doesn’t feel like enough or if you’re concerned about rationing it, discuss with your doctor whether a mild sedative like Benadryl could supplement it.
Banter: Asking the techs to give you updates during the procedure might distract you and make the process feel less isolating.
Your Idea of a Panic Button: While panic buttons might not be standard for radiation treatments, communicating your need for a "safety mechanism" (like foot wiggling or verbal communication) is important. Make sure the team is aware of this need.
2. Cannabis and Prostate Cancer
Cesanon's Point: The relationship between cannabinoids and cancer is complex. Some research suggests cannabinoids might promote tumor growth in certain cancers, such as prostate cancer. Avoiding cannabis is likely the safest option until you can consult your oncologist.
3. Discussing with Your Doctor
Ativan Supply: It’s a good idea to discuss your concerns about Ativan dosing and supply with your prescribing doctor. They may adjust your prescription or suggest additional options to manage anxiety, including alternatives like conscious sedation if available.
Treatment Goals and Outcomes:
Your comment about Joe’s survival post-C2 treatment is heartening. Ask your oncologist specific questions about how they expect the C1 treatment to help, and whether it might improve your quality of life or extend your time meaningfully.
If one doctor is saying "it's everywhere," clarifying how much systemic treatment (like chemotherapy) can complement the local treatment is crucial.
4. Making the Experience More Tolerable
Reduced Mask: A reduced mask might be an option for your C1 treatment. Ask the team if this is feasible without compromising accuracy.
Earthquake Safety Jokes: Humor can help ease tension. If it works for you, engage the techs in light banter during prep.
Final Thoughts
Your apprehension is understandable, but it sounds like you're taking proactive steps to manage it. Keep communicating openly with your care team and advocating for your needs. You’re not alone in this, and it’s encouraging to hear others’ survival stories, which might give you hope and strength as you move forward.
Is this from Char GPT? It seems too well written. I asked similar questions and got similar answers but with some variation. I recently answered an email a friend had sent by asking chat to answer it. He caught me because he said it was too thoughtful obviously not from me
I have three oncologists one the main guy second Dr Aggarwal UCSF and then for nuc med another Dr Hope who is out of the picture now because Pluvicto did not seem to be working
It’s wise to consider systemic treatments (like chemotherapy or immunotherapy) alongside radiation, especially if the cancer is widespread. Here’s how you might approach this:
1. Chemo: Different Options
Different Chemotherapy Agents: If the first round of chemo didn’t work well, there might be other drugs or combinations worth trying. Newer drugs or targeted therapies might also be available depending on your cancer type and genetic profile.
Ask Your Oncologist: Discuss why this particular chemo is being proposed and how it differs from the previous one. What are the expectations for its effectiveness in your case?
2. Systemic Treatments
Beyond Chemo: There are targeted therapies, hormone therapies (if applicable to your cancer type), and immunotherapies. Ask your oncologist if these options are relevant to your situation.
Clinical Trials: If your options feel limited, ask about clinical trials. Sometimes they offer access to cutting-edge treatments.
3. Getting a Second Opinion
Benefits: A second opinion can provide reassurance, new insights, or alternative approaches. Oncologists specializing in your cancer type (e.g., prostate or bone metastases) might have additional ideas.
How to Proceed: Ask your current doctor for a referral or reach out to major cancer centers where specialists are likely to be familiar with the latest advancements.
4. Prepare Your Questions:
What is the goal of the proposed chemo or systemic treatment?
What are the side effects, and how can they be managed?
Are there any clinical trials or newer therapies available?
Should I consider a second opinion or consultation with a specialist?
These discussions can empower you to make the most informed decision about your treatment plan. Don’t hesitate to advocate for yourself—you deserve the best care possible.
Is your PSA rising quickly? What is your PSA and what is your PSA doubling time now? Do you have radiological progression? I know that you are undergoing spot radiation and the PSA alone could be misleading. I am not a doctor but would like to understand your situation. What's about the parallel use of xofigo plus chemotherapy? Would it be possible?
My understanding is that you have lots of bone metastasis? Is it true? Your PSA is still low? Could you have some tissue biopsy in order to get a genetic testing? What is your alkaline phosphatase? If your PSA is above 5 you could even have a liquid biopsy? Etc.
What is the plan except chemotherapy? If you could clarify all these it would be good. I believe your doctors are good. Still, you should also understand your situation.
These are very thoughtful questions and could help clarify the situation for someone with metastatic prostate cancer. Here's a breakdown of what these terms and ideas mean, and why they're relevant:
---
Key Questions to Discuss with the Doctors
1. PSA Trends
PSA (Prostate-Specific Antigen): A rising PSA level, especially with a short doubling time, often indicates disease progression, but PSA alone can sometimes be misleading (e.g., after radiation or during "flare" with certain treatments).
Doubling Time: Faster doubling times (e.g., less than 6 months) suggest more aggressive disease.
Why It Matters: Tracking PSA trends helps determine how aggressive the cancer is and whether current treatments are effective.
2. Radiological Progression
Radiology: Progression visible on scans (e.g., CT, MRI, bone scans) often confirms metastatic growth. This helps determine treatment priorities (e.g., systemic chemo vs. spot radiation).
3. Xofigo (Radium-223)
What It Does: A radiopharmaceutical for patients with bone-only metastases, targeting bone lesions while sparing soft tissues.
Combination with Chemo: The concurrent use of Xofigo and chemotherapy is generally avoided due to potential overlapping toxicities. Ask if using Xofigo sequentially (before or after chemo) is an option.
4. Extent of Bone Mets
Why It Matters: Widespread bone metastases might make certain treatments (e.g., systemic options like Xofigo, bone-strengthening agents) more critical.
5. Genetic and Liquid Biopsies
Tissue Biopsy: If feasible, biopsies can reveal genetic mutations (e.g., BRCA1/2, ATM) that might open doors to PARP inhibitors like olaparib.
Liquid Biopsy: Measures circulating tumor DNA in the blood, especially useful for patients with higher PSA levels (>5) or widespread disease.
6. Alkaline Phosphatase (ALP)
Bone Marker: Elevated ALP can indicate bone metastases. Tracking ALP, alongside PSA, provides a fuller picture of disease progression in the bones.
---
Plan Beyond Chemo
The user's situation might feel limited by the recommendation for another round of chemotherapy. However, these additional steps could be considered:
Bone Health: Use of denosumab (Prolia/Xgeva) or zoledronic acid to prevent fractures and maintain bone strength.
Palliative Radiation: For symptomatic relief, even if systemic control remains the primary goal.
Genetic Testing: This remains important for identifying other potential treatment pathways.
Clinical Trials: If not already explored, re-check availability at specialized centers.
---
Understanding the Big Picture
While trusting a team of three doctors is reasonable, it’s important for the patient to feel confident in their decisions and understand the reasoning behind them. Requesting detailed explanations of the chosen plan—and how alternative options were evaluated—can help the patient make peace with the direction of their care.
If the user still feels uncertain, a second opinion at a major cancer center could bring additional clarity or validation to the chosen approach.
I believe your doctors already ordered a liquid biopsy. Could you please clarify that? If they didn't ordered yet s liquid biopsy they should definitely do that. It is just a simple blood draw and with the guardant 360 cdx they could see your actionable genetic mutations.
A liquid biopsy like the Guardant360 CDx is an important diagnostic tool for metastatic cancers, including prostate cancer. Here's why it's valuable and how it could contribute to the treatment plan:
What is a Liquid Biopsy?
A liquid biopsy involves taking a simple blood sample to analyze circulating tumor DNA (ctDNA) in the bloodstream.
It can identify genetic mutations and biomarkers associated with the cancer, which may open the door to targeted therapies or immunotherapies.
---
Why it’s Important for Prostate Cancer with Metastases
1. Identifying Actionable Mutations:
Mutations in genes like BRCA1/2, ATM, and other DNA repair genes may indicate eligibility for PARP inhibitors (e.g., olaparib, rucaparib).
Certain mutations may also point to potential responses to immunotherapy (e.g., pembrolizumab for high microsatellite instability or mismatch repair deficiency).
2. Non-Invasive:
Unlike tissue biopsies, which can be invasive and challenging, a liquid biopsy is quick, simple, and safe.
3. Monitor Treatment Effectiveness:
Repeating liquid biopsies over time can track how the cancer evolves and whether treatments are working.
---
Next Steps for the Patient
1. Clarify with Doctors:
Ask if a liquid biopsy has already been ordered. If not, request one like Guardant360 CDx, which is a comprehensive and widely-used test for identifying actionable mutations.
2. Discuss the Results:
Once the results are in, talk to your oncologist about how the findings might impact your treatment plan.
3. Ensure Comprehensive Testing:
Confirm that both genomic (DNA) and biomarker (e.g., PD-L1 expression) testing is included to explore all available treatment options.
---
Empower Your Treatment Plan
If a liquid biopsy hasn’t been considered, bringing it up could lead to meaningful insights. It’s a straightforward step that may uncover additional avenues for targeted or innovative therapies tailored to your cancer’s genetic profile.
not liquid i had a conventional biopsy of a lymph node. at the time this was the most accessible through trachea i think that was before the bone mets. i also had genetic testing on the original material from the first diagnostic biopsy and also i think i had genetic testing with saliva test whatever that is only results from all of this is a CDK12 mutation which could make me eligible for some treatment that i forget the name of
Wow. For myself I would definitely request a guardant 360 cdx liquid biopsy and I would (if I could)!ask for a second opinion. I understand that your options are probably very limited because of your blood results, but a liquid biopsy would definitely be possible and you could be surprised. I can't say more because I believe your doctors know much more than me.
Given the information about the CDK12 mutation, PSA level, rapid doubling time, radiographic progression, and elevated ALP, the case indeed seems advanced. However, there are a few points worth exploring further:
---
1. Liquid Biopsy (Guardant360 CDx)
Why Now?
A liquid biopsy could provide real-time insights into actionable mutations or tumor evolution.
While the conventional biopsy (lymph node) and saliva test have already revealed the CDK12 mutation, cancer can evolve, and new mutations might open additional treatment options.
CDK12 Mutation:
This mutation may make you eligible for certain PARP inhibitors or experimental therapies in clinical trials.
Worth Asking:
Can a liquid biopsy reveal further information beyond what was found in the tissue or saliva tests?
Are there actionable mutations in other pathways?
---
2. PSA and ALP Levels
PSA ~2500:
This very high PSA, coupled with a short doubling time (0.7 months), indicates aggressive disease progression.
PSA this elevated might sometimes reduce the specificity of PSA as a marker, but it underscores the need for active treatment.
ALP ~1063:
Elevated ALP likely correlates with significant bone metastases. This supports the need for both bone-targeting agents (denosumab or zoledronic acid) and systemic treatments.
---
3. Potential Treatments to Discuss
a. Targeted Therapies for CDK12 Mutation
PARP Inhibitors: Although not typically first-line for CDK12 mutations, ask about clinical trials or compassionate use for drugs like olaparib or rucaparib.
b. Bone-Targeting Therapies
Radium-223 (Xofigo): Focuses on controlling bone metastases and may complement other systemic therapies.
c. Systemic Combination Treatments
Chemotherapy: Docetaxel combined with ADT might still be effective if not previously tried in combination.
Immunotherapy: While CDK12 mutations can sometimes increase tumor immunogenicity, this is still being explored in trials. Pembrolizumab might be an option for certain biomarker-positive patients.
---
4. Second Opinion
Even with a well-informed medical team, seeking a second opinion from a major cancer center can bring fresh perspectives or access to clinical trials.
Key Areas to Discuss:
The role of a liquid biopsy at this stage.
Emerging treatments or experimental options.
---
Next Steps
Request a Guardant360 CDx test if feasible to check for additional actionable mutations.
Clarify treatment goals: Whether the focus is extending life, improving quality, or symptom relief, this can guide the choice of therapies.
Explore clinical trials: Advanced prostate cancer trials often incorporate cutting-edge treatments, especially for cases with unique mutations like CDK12.
By actively engaging in these discussions, you may uncover additional possibilities, even with limited options.
You raise a very valid point: poor blood results, such as highly elevated PSA and ALP alongside the aggressive disease progression, may significantly limit treatment options. When the disease is this advanced, treatment focus often shifts toward palliative care, symptom management, and improving quality of life, rather than curative or aggressive systemic treatments.
---
Key Considerations Given Blood Results
1. Chemotherapy Feasibility
With aggressive disease and poor blood results, chemotherapy might carry significant risks, such as bone marrow suppression, which could outweigh its potential benefits.
A discussion with the oncology team should address whether the patient’s current health status and blood counts (e.g., hemoglobin, platelets, white blood cells) can tolerate chemotherapy.
2. Bone-Targeting Treatments
Elevated ALP and widespread bone metastases suggest that denosumab (Xgeva) or zoledronic acid might still be appropriate to help manage skeletal-related complications like fractures or pain.
Radium-223 (Xofigo): May be an option, but only if blood counts (especially platelets) are adequate.
3. Palliative Radiation
If systemic treatments are not possible, spot radiation can still provide relief for painful bone metastases or spinal cord compression risks.
---
4. Goals of Care in Advanced Disease
If systemic treatments are ruled out due to poor blood results, the focus may shift to supportive and palliative care:
Symptom Management
Pain Relief: Opioids, NSAIDs, or integrative therapies for bone pain.
Fatigue and Weakness: Address anemia if present, possibly with transfusions or supportive medications.
Quality of Life Improvements
Prioritize treatments that align with the patient's preferences, such as improving mobility, reducing pain, or enhancing daily functioning.
Palliative Care Team
Involve specialists in palliative care to provide holistic support, including physical, emotional, and psychological aspects of the disease.
---
5. Reassessing Liquid Biopsy Utility
Even if options are limited, a liquid biopsy might still uncover mutations that suggest compassionate-use treatments or participation in clinical trials. However, if the patient’s performance status is low or the disease burden is overwhelming, this step might not provide immediate actionable results.
---
Conclusion
Given the advanced state and poor blood results, the treatment plan might best focus on comfort, pain management, and preserving quality of life. Open communication with the medical team about realistic goals and options is crucial. Additionally, if systemic options are deemed unfeasible, patients can still benefit from supportive interventions and palliative care.
We would cut holes in the mask around the eyes. This helped quite a few claustrophobic patients feel more comfortable. It didn't adversely affect the purpose of the mask. We would also work with the patient to let them feel in control as much as possible without compromising the treatment.
I wonder if you could get Versed prior to your treatment. As long as you have someone driving you home I don't see why they would object. Can't hurt to ask, all they can say is no.
This is what I ask for and it’s a very pleasant experience.
You need someone to drive you home after the procedure
Intravenous (IV) sedation might be used for more severe cases. Medications such as Versed (midazolam) combined with Fentanyl, an opioid, can be administered to induce conscious sedation, which helps in relaxing the patient and reducing memory of the procedure.
thanks would be awful to have jitters for the radiation thing. although i tolerate caffeine really well and also have quit it because i get nauseous from it among many other things.
i had three MRIS in very close machines a few days ago and other than having pain from not moving i could tolerate the confinement. it is just the clamping down of my head that is horrible.
When I was undergoing radiation treatment, I was asked if they could move my time for a young girl who would receive radiation for a tumor in the brain. They needed two slots for the extra time required. They were going to anesthize her for radiation.
Oh course I said yes no problem move me as necessary, so I wouldn't expect that to be a issue for you either.
not sure who you are asking i am doing 15 mg morphine along with 25 mcg/h fentinal patch patch will be updated to 37.5 soon
i was fitted for the mask for C1 radiation and this was a lot less awful than the last one. I talked to the technician a lot and she was great. She showed me how to get the thing off if i was freaking out. Just knowing that i can will make it a lot more tolerable. Also the atavan helped. I also have constant entertainment. My left ear is completely deaf and i have bells ringing in it
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Cannabis
Hi again, re: Cannabis/THC use for PC
New to the site
Cannabis oil
