As we learn more about the long term effects of chemotherapy of the central nervous system, it is vitally important that people with MS are given the facts.
If you are being recommended to try any of these therapies, please discuss the side effects with your doctor.
2. Chemotherapy changes the brain's metabolism-- Doctors have long-described "chemo brain"--a common and debilitating side effect of chemotherapy, causing cognitive fog and a loss of coping skills. In fact, the brain's metabolism is altered.
With the help of special software, they were able to pinpoint differences in brain metabolism before and after chemo. They then correlated these with patient history and data from neurologic exams and chemo treatments. The analysis reveals a statistically significant link between reductions in regional brain metabolism and symptoms of chemo brain. Lagos says their findings show "there are specific areas of the brain that use less energy following chemotherapy".
"These brain areas are the ones known to be responsible for planning and prioritizing," she adds.
3. Chemotherapy used in bone marrow transplant doubles brain atrophy in those with progressive MS. Because of this, one neurologist is now cautioning his progressive MS patients. The chemotherapy used in bone marrow transplant is likely to accelerate the disease progression in those with progressive MS.
4. Current information on Lemtrada (Campath/Alemtuzumab)
New claims are that treatment reduced cerebral atrophy in RRMS patients who were followed for two years---but earlier studies showed that this was not true in secondary progressive MS. Treated patients were followed for 14 years past infusions---and cerebral atrophy and disease progression continued. The FDA was right to deny Lemtrada in the US---sadly, the MS patients that are asking for this treatment to be approved have been given an incomplete scenario.
Unfortunately, this did not lead to a clinical improvement in the disability in these patients. In fact, their disability worsened with time at a rate of 0.02 EDSS points for each patient each year. Evidence for continued neurodegeneration in these patients was shown by progressive cerebral atrophy on follow-up MRI scanning. This particular group of patients who showed continuing disease progression had the highest inflammatory load prior to commencing alemtuzumab therapy. This group of patients were followed up with MRI scanning many years later (14 years post treatment) and did not demonstrate any increase in lesion load but did demonstrate further cerebral atrophy [Coles et al. 2006]. This was reflected in their EDSS score, the median being 7.5 (range 4.5–9) at latest follow up [Hill-Cawthorne et al. 2012].
Campath 1H treatment was associated with a sustained and marked reduction in the volume of Gd enhancement, indicating suppression of active inflammation. Nevertheless, many patients developed increasing brain and spinal cord atrophy, T1 hypointensity, and disability.
In fact, neurologists have known about chemotherapy causing brain atrophy for many years. Here is a study from 2006--where neurologists followed brain atrophy after chemotherapy in preparation for a bone marrow transplant. And they included a man without MS, being treated for cancer, to see how his brain did. His brain atrophy doubled....just like the people with MS.
The man with non-Hodgkin lymphoma provided a clue. Because he didn't have MS, he should not have had any cerebral inflammation or edema. Yet, in the three months after he received the same treatment as the MS patients, his brain shrank at the rate of about 6 percent per year, a rate of atrophy similar to the MS patients.
We still do not fully understand the disease mechanism of MS. While MS specialists continue to operate under the assumption that a faulty immune system must be annihilated ----we are learning that the true progression of MS can be linked to neuronal loss, or brain atrophy. There is a terrible and tragic irony in the fact that chemotherapies, which are known to double brain atrophy rates, are being recommended to people with MS.
Please, share this information in the MS community. For those who have already been treated with chemotherapies, there is hope of healing through diets high in antioxidants and phytonutrients and omega 3 oil supplementation. In fact, simple lifestyle factors like diet, exercise, UV rays and vitamin D are increasing blood flow to the brain are helping reverse brain atrophy in all of those with MS.
Know the facts, and be well,
il tutto si commenta da solo, nella speranza che la chemio sia dichiarata fuori legge !!ReplyDelete
thank you for your postReplyDelete
you could add Ocrelizumab and Ritixumab to your labels Joan, both being pushed on MS patients, there are reports of people on Crohns drug Remicade (Infliximab) developing MS type symptoms… Tysabri was originally called Natalizumab, Lemtrada was Alemtuzumab…
remember you once wrote about Cladribrine, originally a chemotherapy drug used to treat leukaemias and lymphomas - introduced to the MS market in some countries and then withdrawn by Merck when even the FDA required more safety trials - not a whisper of the side effects and injuries caused to MS patients on it - it just vanishes - with certain immunologists still sad to see it go, such is their mindset that MS patients are somehow a disposable commodity
Mitoxantrone, a chemotherapy drug used to treat acute myeloid leukaemia, non-Hodgkin lymphoma, advanced breast and advanced primary liver cancer has also been used in MS patients. Mitoxantrone is associated with accumulated cardiotoxicity and risks of leukaemia yet British neurologists still give it to MS patients despite warnings about it in the Lancet in 2003:
'the suggestion that MS is an autoimmune disease associated with disease-specific dysregulation of T cells and B cells is unsubstantiated'
Neuroimmunologists worldwide are trying to recruit people onto trials of Ocrelizumab, a monoclonal antibody. Warnings about this have been given in the Lancet in 2012:
'The lessons from the clinical trial of natalizumab seem to have been forgotten too quickly: nearly a quarter of more than 200 patients with natalizumab-induced progressive multifocal leukoencephalopathy are dead and most of the rest are severely disabled by the drug rather then their disease. Quo vadis multiple sclerosis?'
of course hundreds more have died from taking Tysabri (Natalizumab) since then as we know…
imagine if there was a serial killer on the loose in North America with this many murders under his belt and the FBI did nothing to investigate and prosecute the perpetrator, yet 'science' and 'medicine' can seemingly kill or maim MS patients at will in pursuit of their cut of $15billion a year markets - the voices of the few doctors prepared to question this situation in public go unheeded
and neurologists are certainly not disclosing this state of affairs to their patients, quite the opposite in fact - they are herding patients on to more and more chemotherapy and related clinical drug trials…. it is beyond me how this is considered ethical behaviour
Are there any recorded cases of chemotherapy causing MS as opposed to how chemotherapy affects people who already have MS?ReplyDelete
A search of the published literature does not show an MS diagnosis after chemotherapy, most likely because chemotherapy would be a known cause of problems in the CNS, and MS is a diagnosis of exclusion. Meaning, we typically do not understand what causes MS. And we understand what chemo can do....Delete
Chemotherapy has been known to cause demyelination and Lhermitte's sign (both also found in MS)
It causes white matter loss and demyelination (also seen in MS)
Chemotherapy affects the OPCs, the progenator cells which form myelin
All of these problems happened in people who did not have previous neurological disease. Chemo caused it. Hope that helps explain.
This is quite upsetting- especially as l go for HSCT in less than a month & in treating my MS this far was given cyclophosphamide intermittently with Betaseron by my ex neuro. What is one supposed to do w:this illness?!?! You go downhill eventually no matter what. I've been the good patient turned self advocating & educating patient. I've tried alternative therapies including CCSVI. I have an EDSS of 7 & am ASRRMD or SPMS at this point so wtf am l supposed to do with such info? Esp. as with other treatments l follow patient outcomes & l've several social media acquaintances doing great afterwards!! With any & all treatments there have been good and bad outcomes. So wish l hadn't seen this with the mountain l have to climb soon!!ReplyDelete
AARRMS sorry Siri doesn't always understand what I'm saying and then spellcheck didn't recognize this…Delete
Hi Sarah---I don't write to take away hope, I write to hopefully help patients ask the right questions of their neurologists before pursuing a particular treatment.Delete
Here are some questions to ask your neurologist. Are you in active inflammatory MS? HSCT works for those with highly inflammatory MS, and is not as successful in progressive MS, where there is no inflammation. This is not opinion--this is science. Dr. Burt, the creator of this protocol, has published on this.
The most success in SPMS treatment has been shown to be lifestyle. Again, not opinion. Dr. Terry Wahls is publishing on this, and other researchers have shown that exercise, nutrition and lifestyle are the most helpful ways to maintain gray matter. If there is any way to keep moving, any way to up phytonutrients, any way to get more vitamin D and UV rays, any way to improve gray matter health...these are key. I'll include a link on thalamic atrophy and MS progression here. You'll need to copy and paste the link, as no hyperlinks are available on this blog. http://ccsviinms.blogspot.com/2016/01/thalamic-atrophy-and-ms-progression.html
I honestly believe you do not have to go downhill...but that the key is in maintaining gray matter. Again, science, not just my opinion. But this research does not filter down quickly enough to neuroimmunologists. That's why I keep this blog going. Not to take away hope, but to, hopefully, instill it. Patricia writes below about her journey, and she gives great advice. Look to George Jelinek, a doctor with MS, for more advice. I don't have MS...I just love someone who does. So, easy for me to say, right?? But I want to offer you things to discuss with your doctor, things to do for yourself, and options. And you have the option to ignore anything I write. I am not a doctor...and I send you every good thought and blessing. And hope.
I have PP-MS and just finished treatment last month for breast cancer including chemotherapy and radiation. I was asymptomatic on the outside thanks to the Wahls Protocol before starting chemo. Chemo was too nauseating to be fully compliant on the Wahls diet, but I tried as best I could. As soon as I finished chemo and most nausea was gone I was able to resume Wahls diet (phase 2 of 3) and I felt SO MUCH better. Much less fatigue. Walking stronger albeit wobbly. After finishing radiation and I could resume exercise than my legs recovered in two weeks of 30 min + exercise, five days a week. The Wahls has really helped me except not as much cognitively; it has helped with brain fog and fatigue, but not with processing speed or multi-tasking. I am in a clinical trial for using Transcranial Direct Current Stimulation (tDCS) for this. If you want more info about Wahls, there is a great Facebook group at: https://www.facebook.com/groups/wahlsprotocol/Delete
Hi cybergrace-- I am so glad to learn that you are doing well. The Wahls protocol is terrific, and Terry has become a friend. She highlights healthy fats, and that certainly helps the brain recover. Keep on healing, keep on moving, and be well. JoanDelete
Chemo Brain Awareness mission is to provide help and inspire hope to those affected by Chemo Brain to finally give a platform to come out of the shadows and bring public attention to this silent, invisible disability!ReplyDelete
Unbelievable... that chemobrain -the most serious and debilitating and disabling chemo side effect-has not been properly researched. Shame!. https://www.facebook.com/usaCBA/
This is a shame. My body and brain have progressively gotten worse and worse post chemo. I am in constant pain and have no energy or will to do the things that once we're precious to me. I sometimes go as long as 2 weeks without a shower or brushing my teeth. I cry all the time off and on. I go into rages. I find no enjoyment in life and even the joy I once had for my own children is so far gone that I can't stand it. I know there are so many doctors appointments that I should be making; yet, I cannot bring myself to do anything for myself because when I do go to the doctor- they look at the surface and my age and try to convince me I am fine. I just need to lose some weight and see a therapist! I KNOW MY BODY! THERE ARE MOST DEFINITELY MANY THINGS WRONG! My bowel habits have changed. I have begun to have seizures, the pain that is excruciating, the terrible dark spots all over my feet,lower legs, and face! My toenails on my first two toes hurt and grow differently now. I sweat in the snow, yet my skin is cool to the touch while my chest and my head and neck are so red they are almost purple and my hair is drenched with sweat. I now have a-fib and I can barely breathe. Heaven forbid I laugh. I go into a terrible asthma attack and feel as if I am dying until I get to my inhaler. I have to pump it 5-6 times per breath to get any relief and then have to use it for several breaths! I have Hodgkin's Lymphoma and did chemo in 2009 for it. I am STILL being affected more and more each day yet I am denied disability and cannot get any kind of pain treatment. Something is VERY wrong with this! I need help! I read these articles published on all this research and testing yet WHERE ARE THE DOCTORS who listen to and treat patients as indicated BY WHAT THE PATIENT TELLS THEM THEIR SYMPTOMS ARE, rather than looking at the surface and saying you are fine, and when I say surface...I mean atop The clothes! I don't even remember one time in my life that a doctor has looked at me from head to toe! I AM DESPERATELY in NEED of REAL MEDICAL CARE BY SOMEONE WHO TRULY CARES!Delete