Stage IV Ixempra Nuero Toxicity-years later loosing disability

QJenn

Has anyone else experienced debilitating permanent nuero toxicity from late stage treatment at experimental dosages of chemotherapy? Toxic dosages after everything else failed, and survived the experience? My Stage IV Triple Negative Breast Cancer has remained NED for 9 years but life has been incredibly hard since the nuero toxic damage.

I am seriously cognitively and physically impaired from the nerve damage. Life is hard, it’s drudgery because I follow lists and memory aids to try to get through a few acts of daily living before the extreme cognitive fatigue gets so bad, I just can’t persist and have to lay down for nuero respite. I was also getting sick all the time with upper respiratory problems that created nearly constant sinus infections, frequently acute. After many doctors and experts, I believe I suffer from multiple chemical Sensitivities and feel horrible from my extreme reactions to outdoor air, or any chemical off gassing.

Take pills to sleep, because of chronic insomnia and then take pills to help with focus during the day. Everything is set on alarms. It’s been a gradual surrender to permanent nerve and brain damage and I believe the culprit is Ixempra. 80mg, 80mg, 70 mg, 70 mg. Black box max is 40mg and supposed to stop if experiencing Stage IV nuero toxicity. But...my cancer was responding and I was dieing in months without effective treatment for my aggressive TNBC. Other chemotherapies were not effective and I was having big problems with bone marrow damage from all the strong chemo. I was ready to quit after first 2 hellish treatments but the PET showed tremendous response so agreed to 2 more treatments to try to bring me to NED. I never expected to be alive these many years later.

It sounds like the miracle survival, and I suppose that it is, but my quality of life includes great suffering, both physically and mentally. I have been on disability and trying to enjoy the few hours that I can be up and functioning on light tasks with my memory aids. Did a lot of therapy to accept that this brain damaged, “slow me,” is it. This small home life, like an elderly senior, is my life now.

Now I am terrified because Social Security Disability is reviewing my case and trying to find any work I can do, EG assembly line. My Oncologist last advice in 2015 was that the chemotherapy cognitive dysfunction wasn’t expected to improve after 2nd opinion from oncology researcher, The Cancer is expected to return at some point, so just live my life to the best of my current abilities. He will monitor my cancer but not the cancer treatment CNS damage.

I was never reviewed to neurologist and too messed up to know to demand it. I was very high IQ, executive, and a Rhetoric Major at a top university. Therefore, I text at average levels on nuero psych tests, despite being slow and obviously fatigued and struggling.

But, I can only function very slowly, on one thing at a time for 2 hours before needing to take timed silent sensory breaks. With breaks, I still only last about 5 hours a day performing simple tasks like taking a shower or doing a load of laundry, before needing to call it a day. I spend a lot of time resting and hope that I will be able to go for a little while again thank the next day. I try to walk or go to water aerobics but my activity levels are so limited, I don’t have physical stamina to get through a normal day.

I am totally overwhelmed as I am learning that I don’t have proper recent medical documentation for Social Security Disability. My family wasn’t actively documenting my ongoing deficits because they were understood to be permanent. There is absolutely no way I can follow a routine to get up, dress, and show up to an employment location for an 8 hour day, following their break and rest schedule. I can’t persist and get so sick when reacting to any chemical triggers, which are everywhere. I live in California and we keep having Spare the Air Day’s for weeks, due to high particulate counts.

I am too sick to figure out how to move from large home that I have been ignoring maintaining organization for paperwork or belongings for last 10 years of illness. How do we maneuver loosing my disability income, getting through all the stuff to even get house stagable, when I am too sick to get out of bed 1/2 my waking hours? Then very slow and quickly fatigued and overwhelmed?

Are there any longer term survivors that have been quietly focused on basic activities of living and suddenly find yourselves unable to prove your disability by the strict standards of Social Security Guidelines. I can’t easily find an attorney to help with Reviews, they all say they work in new applications or help their previous clients with reviews. They don’t handle non client reviews.

I am so terrified about the future that I have begun wishing I didn’t survive. My quality of life is already full of suffering, drudgery, and my long term memory seems to be getting worse. I am 54 years old do not necessarily see my, “miracle,” survival as something I should have pursued. I often think that my husband would have adjusted to life without by now, I had sufficient life insurance, and I am just bringing financial devastation by living without ability to earn income and loosing disability because I survived???

If anyone has nuggets of wisdom on how to gracefully downsize stuff, while being ill and without stamina, I need help. We don’t have family to rely upon. Also, how to avoid living in our vehicle while trying to appeal my disability case, if I can find an attorney.

I am trying to get into neurologist now, but still don’t know if the one my HMO is sending me to will have the background to quickly support my disability. Either, my HMO won’t approvee regional Specialists recommended, the specialiste I can get referred to by HMO won’t take my case as too much time has passed, or my long term doctors say that my case is way Beyond’s their training and expertise. They are not helping me with letters for Social Security.

So I go in circles unable no be seen by specialty doctor to firmly diagnose me with the marked mental impairments and multiple chemical sensitivity, and significant peripheral nueropathy. I search cancer support forums but the topics not geared for the longer term survivors living with permanent nerve damage and how to get into specialists when they perceive others to be Salvagable

justamy

From what you describe, I do not think that you will lose your disability. I am on disability for depression and ADHD in conjunction with my BC. I had to appeal to get it and one of the main things that made me unable to do any job (According to them) was my lack of concentration. If you can't stay on task, you can't work a job. It sounds like you have this problem from what you describe. Also, if I were you, I would get into a psychiatrist, if you can and be evaluated for depression. I don't think you have anything to worry about with all of the trouble you have. They just do these reviews for no reason sometimes. Good luck to you and God Bless.

QJenn

Bless you for responding...

The neurologist I recently saw initially responded that he saw depression on nuero psych evals. Was really nasty to me on consult about nuerotoxic injury saying, “he bets I feel just fine once my husband retires.” That’s often the type of response I get from people when one looks healthy on outside after taking care to eat properly, etc. to avoid Cancer reoccurrence. We haven't gotten the final report yet. Hope that he has enough time to read the documents more carefully before then?

I don’t have diagnosis for ADHD, was it the psychiatrist who diagnosed you with that? I just got into a psychiatrist today.

I really need advice because I had already been told that I was not submitting the right kindness of documentation. I did not write depression as diagnosis, which clearly I now know I am diagnosed with. You were very helpful.

Thank you very much for responding.

QJenn

Thank you, thank you, thank you!

I am very grateful for the advice I received. I did actively pursue a psychiatrist. Now have documented medical files to include depression and anxiety. Unfortunately, the process of intense review had left me with a serious anxiety and depressive disorder. So seeking treatment for that was sage advice. It also is helping me receive treatment to cope with my psychological conditions resulting from my pretty severe disability.

I did finally receive firm continuance of disability. This wasn't routine review, I had been reviewed numerous times during the past 9 years by both private policy and social services.

I had already been advised by experts in the field that I was lacking recent cognitive dysfunction reporting. I was in trouble with all the recent medical documentation focusing on other side effects I had. My new doctors didn't have familiarity with nuero toxic symptoms of cognitive dysfunction. More comfy writing on other conditions they see with majority of patients.

It’s one thing to be experiencing significant health problems and quite another to find doctors willing to document them on reports as due to treatment. Also, my historyI was being treated with twice the black box warning dosage of a particular chemo drug. Treatment was not discontinued after my reporting symptoms that indicated nuero toxicity. In a lawsuit happy society, writing report about the long term results of that is not something I have any doctor willing to do. Our doctors all work closely together in same medical network.

It's frustrating to not be validated on paper for the severity of nerve damage or the declining cognition. Where I live, we have not found nuero psych or neurology familiar with long term or declining cognitive deficits, years after cancer treatment ends. They immediately gravitate to familiar psychology symptoms that produce similar functional results.

However, getting understanding that it’s less important that the current mental diagnosis matches past physical diagnosis was helpful. I needed to approach current records as listing health conditions disabling, period. So it's been good for me to understand that it doesn't matter what today’s non oncology doctors call my deficits.

I also learned hat when symptoms don’t improve over years, patients must still repeat and repeat the disability symptoms. Everything needs to get medically documented in records, not just the latest health condition one is discussing with a doctor.

Thank you for providing information with an example of other diagnosis