I Quit Intrathecal Chemotherapy: My Personal Story
The Addition of Intrathecal Chemotherapy
When I learned that my cancer treatment would include intrathecal chemotherapy, I was completely overwhelmed. Adding another layer of treatment on top of an already grueling intravenous chemo regimen felt like too much.
My Double Expressor Lymphoma had started in my stomach and spread to my adrenals and breast, leading doctors to believe its endocrine-driven nature put me at high risk for Central Nervous System (CNS) Lymphoma. The idea behind intrathecal chemo was to eliminate any cancer cells that may have already migrated to my cerebrospinal fluid (CSF) before they had a chance to take hold. Given my ICI score and advanced-stage diagnosis, MD Anderson strongly recommended six rounds as a preventative measure.
What is intrathecal chemotherapy and why is it used?
Intrathecal chemotherapy is a specialized cancer treatment that delivers chemotherapy drugs directly into the cerebrospinal fluid (CSF), which surrounds the brain and spinal cord. This method is used when cancer has either spread to the CNS or when there is a high risk of it spreading there.
The blood-brain barrier prevents many traditional chemotherapy drugs from reaching the CNS when given orally or through an IV. Previously, doctors would administer high-dose methotrexate intravenously, hoping a small percentage would pass through. However, the long-term damage from such high doses outweighed the potential benefits. Now, by injecting chemo directly into the CSF, a smaller, targeted dose can be used with less risk to the rest of the body.
For lymphoma, intrathecal chemotherapy is delivered through a lumbar puncture (spinal tap), where a needle is inserted into the lower back under fluoroscopy (continuous X-ray) to access the cerebrospinal fluid (CSF). The chemotherapy drug is then injected directly into the CSF. This procedure is performed under local anesthesia and must be administered by an oncologist.
The Procedure: My Story
I checked into the hospital around 8 a.m. I’d been told I would need to stay for the day to monitor potential complications, like a cerebrospinal fluid (CSF) leak. The plan seemed straightforward: if I didn’t show symptoms within six hours, I could go home. The nurse assured me that if nothing appeared within that window, I’d likely be in the clear. Her calm demeanor made it seem like no big deal, so I didn't dwell on it.
However, the procedure itself was far from easy. I was still haunted by memories of the needles in my back from my initial diagnosis, and the thought of another lumbar puncture was terrifying. Even with local anesthesia, I think all cancer patients can relate to how the slightest sensation of pressure can trigger past trauma. The radiologist numbed my back before inserting the needle into the space between my vertebrae. They tilted the table I was lying on and carefully removed a sample of CSF for testing. While the needle remained in place, we waited for the oncologist to arrive and administer the methotrexate. Once that was done, they tilted me back down and patched me up.
Afterward, I was wheeled back to my room and told to lie flat on my back for six hours to avoid complications. Thankfully, I didn’t show any immediate signs of trouble and was discharged with instructions to take it easy for a few days. I thought I had made it through without any issues—but I soon learned that would not be the case.
The Aftermath: When Complications Set In
My RCHOP chemo was scheduled for Friday, followed by intrathecal chemo on Tuesday. The next day, I felt okay—just a little nauseous from back-to-back treatments. Thinking everything was under control, I sent my mom home. I went about my day carefully—working on my computer, making simple meals, and moving around the house. The hospital had warned me not to bend too much but never fully explained the potential complications. They reassured me that issues were rare.
By the next morning, I woke up with tingling in my thighs and a stiff neck—odd, but nothing I was overly concerned about. But as the day went on, the discomfort turned into unbearable pain—a pounding headache and a paralyzing sensation that shot from my lower back to my neck whenever I tried to sit up. The only relief came from lying completely flat.
I called my oncologist’s nurse, struggling to explain what I was feeling. She told me to wait another day, assuming the pain might resolve on its own. If it didn’t, they would schedule a blood patch for a possible cerebrospinal fluid (CSF) leak.
By the following morning, I was in excruciating pain—I could barely move. Any attempt to lift my head sent agonizing shocks through my back. When I called again, the nurse confirmed I needed a blood patch.
The Blood Patch: Relief, Then Disappointment
As the hours passed, my condition worsened. My brain felt like it was being crushed, and my body would seize up any time I tried to sit up.
The nurses scrambled to schedule the procedure, but there was a problem: insurance required a three-day approval process. My medical team was deeply concerned—I had lost so much cerebrospinal fluid that I was now at serious risk of a stroke. After hours of back-and-forth, my doctors finally secured emergency approval, and I was rushed to the hospital for the procedure.
The blood patch involved injecting five tubes of my own blood into my epidural space to seal the leak. But with my veins severely dehydrated from all the chemotherapy, drawing blood became a challenge. At one point, five nurses were in the room alongside the doctor, all struggling to get enough.
The procedure itself was far from pleasant, but the relief was immediate. I thought the nightmare was finally over—until the next day, when the pain came roaring back.
At that point, I didn’t hesitate. I scheduled another blood patch, this time refusing to eat or drink so I could be sedated. When I finally made it home, I barely moved for four days, terrified that even the slightest shift could reopen the tear and send me right back to the hospital.
Between the initial procedure and consecutive blood patches, I spent a total of 14 days lying flat on my back with full-time care.
I Quit Intrathecal Chemo
Long story short, I went through another round of intrathecal chemo, but the complications persisted. Despite my thorough research on dural tears and how to avoid them, there were still issues during the second lumbar puncture, requiring three painful attempts to access my spinal canal. After the trauma of my first experience, I was consumed with fear. I remained stiff as a board for another week, terrified that even the slightest movement could trigger another tear.
Since my cerebrospinal fluid continued to test negative for cancer cells, I couldn’t justify continuing such an invasive treatment as a preventative measure. Ultimately, I made the difficult decision to stop treatment altogether. For me, the risk outweighed the reward.
How to Prepare for Intrathecal Chemo
Looking back, my medical team did not fully prepare me for the procedure. In fact, the information provided by the nurses regarding dural tears turned out to be completely inaccurate. Had I known the key details about intrathecal chemotherapy ahead of time, my experience could have been vastly different.
When you’re battling cancer, every potential risk matters, as even small complications can take a toll on an already weakened body. A lumbar puncture isn’t just a one-time event—it becomes yet another procedure stacked on top of the many others we have to endure. Being properly informed shouldn’t be a luxury—it should be the standard.
Younger Woman Are More Likely to Develop a Dural Tears
During a lumbar puncture, a needle is inserted into the space between two lumbar vertebrae to access the cerebrospinal fluid (CSF). To reach the CSF, the needle must puncture the dura, the protective tissue that holds the fluid in place. A spinal CSF leak occurs when the dura develops a hole, tear, or other defect, allowing the fluid to escape from this enclosed space. The elasticity of the dura varies with age—the younger you are, the more elastic the dural fibers, while in older patients, the dura is much less flexible. It’s like inserting a needle into a bowl of pudding: when you remove the needle, the hole is almost invisible. But if you insert the same needle into an apple, the hole is more apparent. In most cases, hospitals perform diagnostic spinal taps on older patients, where dural tears are far less likely. However, in younger patients, more aggressive preventative measures are often necessary.
Symptoms will be present at the 48-72 hour mark
I’m not sure why the nursing staff told me symptoms would appear within the first 6 hours—this is simply inaccurate. Symptoms usually take 48 to 72 hours to develop, as it takes time for enough cerebrospinal fluid (CSF) to leak through the puncture site and cause the brain to sag due to fluid loss. The only way symptoms would show up within the first 6 hours is if the radiologist completely tore the dura during the needle insertion or removal, which would be extremely rare if not impossible.
Immediately call the hospital upon the first signs of symptoms
When I called the hospital and agreed to wait a day to see if my symptoms would clear up, I had no idea what was really happening. Had I known, I would have insisted on getting a blood patch ordered immediately. The additional 36-hour delay only increased my risk of serious, life-altering complications and made the trip to the hospital even more dangerous. If you wake up with symptoms, don’t eat or drink—you’ll want to be sedated for the procedure. And if sedation isn’t offered, be sure to request it.
DO NOT MOVE
I can’t emphasize this enough: when you go home, you need to stay in bed for at least 48 hours to allow the dura to heal correctly. If possible, arrange for a full-time caretaker to assist you. By the 72-hour mark, if you haven’t experienced any symptoms, you’re likely in the clear, but it’s still important to take it easy. If you’re receiving intrathecal chemo alongside regular chemotherapy, you’ll probably experience severe constipation, so be sure to take a stool softener or hold it. Straining while using the restroom can tear the hole in your dura made from the needle.
Final Thoughts
Intrathecal chemotherapy can be life-saving for patients with CNS lymphoma, but its role as a preventative measure remains debated. If I had active CNS disease, I would have continued, but in my case, the risks outweighed the potential benefits. After two rounds, I felt that if any lingering cells were present, they had likely already been eliminated. Two rounds seemed sufficient as a prophylactic approach, but undergoing six felt like it would only add to the long-term trauma I’d have to carry into survivorship.
That said, I strongly encourage anyone facing this choice to do their research, seek second (or even third) opinions, and make the decision that feels right for them. Cancer treatment is already brutal—you deserve to be fully informed and empowered in your care.
