Overwhelming support for free MS stem cell therapy

An interesting question about whether people would choose to have stem cell transplants if they were free was met with overwhelming support in a multiple sclerosis group on Facebook just four days ago.

But first, some caveats: there was nothing scientific about the sampling, it was 100% self-selecting; it was only a small group with 473 members; and those who gave opinions were somewhat limited in number. I am not trying to blow this out of proportion. It was not scientific but remains interesting. It should alse be noted that the question was asked in a general MS group – not one with any special link to stem cell treatments.

steroid infusionHaving said all that, we can get on.

The question posed was: “If you were given a chance for free stem cell (therapy), would you? Why? Or why not? Explain.”

All answers, without exception, were positive. No-one said ‘No’.

Some replied ‘Yes’ but offered no reasoning but others did give some thoughts on the matter. Just take a look at these examples:

“Yes, depending how they are expanded!”

“Yeah to see if it works.”

“Sure why not? Help appreciated in any way.”

“Yes my husband did a year ago…it worked.”

“Yes I would! I’m not going to give up. God gave me this one body, I’ll keep trying my best at working to make it work  to the best of my ability!!! I wish I knew where I could go in the US to have it done. I’d go!!!!

“In a heartbeat – other health permitting. The ‘why?’ is easy. The vast majority of people who have gone through it in places like Russia and Mexico have been delighted. Of course, there are risks but disease modifying drugs have serious risks too – just check out the worst side effects.

“My husband had HSCT1 with chemo. It was in Chicago. Before he suffered from heat exhaustion, no more. No more MS drugs. He still has balance issues but he was just about bedridden because he fell every minute. He can now play with our kids, before he couldn’t. It’s best to get it done early. So yes we are extremely happy.”

“Yes! If I don’t do something soon I’ll be completely paralyzed.”

“Yeah I’d try it what else could I lose?”2

So, there you go. A complete ‘Yes’ from everyone but do remember it is a very small group. Maybe one or more larger groups would be prepared to ask the same question.

 

 

1 HSCT or, more properly, aHSCT stands for Autologous Hematopoietic Stem Cell Transplantation therapy. This involves harvesting a patient´s stem cells and cleaning them. The patient is then given chemotherapy to kill off faulty immune cells before the clean stem cells are reinjected to ‘reboot’ the immune system.

2 As with any medical treatment (and that includes disease modifying drugs) there is always a degree of risk. However, this would be discussed with a patient before going ahead with the therapy.

 

MSNT strapline copy

 

 

 

 

Stem cell trial patients are leading a normal life

This is my column, today, in MS News Today. I thought you’d like to know about it:

Stem Cell MS Patients Lead Normal Life Thanks To aHSCT Procedure

People with MS who were involved in a long-term clinical trial are out and about enjoying a full and normal life with no signs of the disease. This follows their recovery from the stem cell transplants involving aggressive chemotherapy, or aHSCT as the procedure is known.

Results of the clinical study reached major news sources, including Multiple Sclerosis News Today on Friday after first being unveiled in The Lancet.

The 24 multiple sclerosis patients recruited for the trial were severely disabled but, with the exception of one who died, are now walking, working, kayaking, and skiing.

The trial is the first in the world to show complete long-term stopping of relapses of the debilitating disease and …

 

read more here: stem-cell-ms-patients-lead-normal-life

 

 

MSNT strapline copy

‎Self-advocate: Take control of your own treatment

self-advocate

Becoming a self-advocate may be the best way of getting the treatment any MS patient may want.

Stem cell transplants are known as aHSCT or just HSCT, and interest in them as a therapy for MS has never been higher. First there were stories from the annual meeting of the Consortium of Multiple Sclerosis Centers at the beginning of June. Then, a week later, The Lancet published the results of the first clinical trial to prove long-term benefits of what has been a controversial treatment.

This transplant therapy is not claimed to be a cure but, having read the report and acknowledging it has dangers (as do Disease Modifying drugs), I’d say it is the nearest thing we have to a cure at the moment. But I have to emphasise I am not a doctor – my opinion is that of a career journalist who happens to live with MS.

Many neurologists seem reluctant to embrace the new therapy, possibly because it is not led by their speciality in the field of medicine. Instead it is in the hands of haematologists and oncologists because, after all, it started as a cancer treatment and does include high doses of chemotherapy.

For that or for other reasons anyone with MS may have difficulty in getting their neurologist to agree to put them forward for this process even if the talk today is all about ‘shared’ decisions.

No, there is absolutely no way that I am going to knock shared decisions – after all, that means the doctor and patient have agreed on the best way forward. If that is the case, that is great – but what if agreement is not reached and they have shared disagreement instead?

Well, people with MS have to be their own self-advocate. They need to remember that this unwanted disease is in their bodies; they have the ultimate right to determine how it should be treated.

Not everyone with MS will be suitable candidates for HSCT but, if they are, then no neurologist on Earth can be allowed to stand in their way.

With this in mind, I was interested to see the following on one of the social media:

We should all present our neurologists with a letter, stating that while they withhold HSCT from us, we consider them personally responsible for any further disease progression. Here is a first draft, for comments please? Imagine if 100,000 of these were presented!

LETTER TO NEUROLOGIST,

cc ASSOCIATION OF BRITISH NEUROLIGISTS

Dear Dr Blah-Blah,

As you know my next appointment with you is scheduled for xx/xx/16.

I am writing to advise you in advance, that I would like you to assist me in pursuing a Haematopoietic Stem Cell Transplant. I attach details of recent submission by Professor Paolo Muraro, together with commentary by Professor Gavin Giovannoni, relating to HSCT for MS being the best way to achieve no evidence of disease activity (NEDA). I am no longer prepared to take inferior disease modifying medications.

My EDSS is currently measured at x.x and I feel it is only fair to advise you, that I will be holding the neurolgogy profession including yourself, fully accountable for any further disability that accrues from this point forward. To aid with analysing any increased disability, I have today been independently filmed walking 20m, which will then be compared to future timed 20m walks.

Should you wish to bring my next appointment forward, I believe we would all consider that to be a step in the right direction.

Yours sincerely,

MS Patient

The content of that letter has been reproduced word for word and, while it may not be how I would phrase it, it makes its point – and is a great example of the self-advocate that is so needed today.

 

Related articles:

Stem cell clinical trial is real, not ‘false hope’    June 12

Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS    June 10

 

 

MSNT strapline copy

 

 

 

Long-term clinical trial Proves stem cell therapy that destroys immune system Does Stop MS

As regular readers of this blog will know, I also now write a column for MS News Today but, yesterday, I was asked to write a news story. You might be interested:

Aggressive Stem Cell Therapy Stops MS Relapses, According to Long-term Clinical Trial

JUNE 10, 2016  BY IAN FRANKS

Stem cell treatment has been proven to both halt MS clinical relapses and the development of new brain lesions over a prolonged period, according to the results of a new study.

The results, achieved in 23 out of 24 patients in a Phase 2 clinical trial, were published in The Lancet in an article titled “Immunoablation and autologous haemopoietic stem-cell transplantation for aggressive multiple sclerosis: a multicentre single-group Phase 2 trial.”

Importantly, the success was reached without the need for ongoing medication.

It is the first time that results of this form of autologous haematopoietic stem cell transplantation (aHSCT) have been trialed — using chemotherapy to completely destroy a patient’s immune system and then transplant previously harvested stem cells to reset or reboot the immune system to stop it harming the body. It is the method used in several leading clinics, including those in Russia and Mexico.

Some other centers, however, only go as far as suppressing, not destroying, the immune system. According to a recent press release, the suppression method is not as reliable, with many patients finding that …

 

To read the whole story, please follow this link: multiplesclerosisnewstoday.com stem-cell-transplants-stop-ms-long-term-clinical-trial

 

 

MSNT strapline copy

HSCT for MS from Russia with Love – Julia’s tale

julia hat red square_edited

This is the story of Julia Summers, Facebook regular and now HSCT veteran

 

Something struck me, when reading Julia’s posts on Facebook that this was a determined woman, a loving wife, mother and a devoted dog lover.  Julia has Relapsing Remitting multiple sclerosis and had been keen on HSCT since first hearing about it in 2011 but her then British neurologist had talked her out of it saying that it was still unproven.

Julia’s name went onto the Russian waiting list and she was given a 2017 date for treatment.  After Dr Fedorenko studied her latest MRI she was pushed forward to March 2016.  She had since embraced HSCT and was about to head off to Moscow from her home in the Bahamas.

Let’s follow Julia’s experiences as, first of all, she prepares to start her journey of life in her fight with MS.

It is March 14 2016:

OMG, Josh sat on his bed and cried tonight. He told me how he was going to miss me and asked me what I would like him to do with his life if I don’t make it through this treatment! The stress is starting to show in both the boys now. I hate having to leave them!

Just took Baxter to the beach in search of his buddies for a rough play before I leave and there was no one around. Now to start packing. I leave here in one hour.

At the airport waiting to board. Sad goodbye to Baxter, who seemed to know, and then horrible saying goodbye to the family! Now my mission to heal starts!

Having said her goodbyes, she flew to London where she needed to appear in person to obtain a visa to visit Russia. Two days have passed:

Just back in from the visa office. Tomorrow I need to get my fingerprints taken and back again on Friday at 5:00pm to (hopefully) collect the visa and pay the fees. I was collected from my hotel and taken to the visa company by a young taxi driver. On the way we were chatting and because of my head shave we got onto the subject of cancer. It turns out his four-year-old niece had cancer and had chemo and is now strong again. He wouldn’t let me pay my fare!

Fingerprints were taken the following day and Julia was able to collect the visa on Friday 18th, as planned. She then enjoyed a couple of days in London seeing family, friends and her breeder’s dog group who met especially to wish her well, before flying on to Moscow, arriving late at night on March 21.

I met Anastasia this morning. She came in at 6:00am to welcome me. She is everything I was told. So sweet and helpful. I have now just met Dr. Fedorenko. These people are so caring!

I have arrived to a beautiful full moon and -7C. Kristina, you are correct, it is a different type of cold here.  Didn’t get any sleep on the plane, so have been given today to rest. They start testing tomorrow … three days of testing, not like the other joke I went through. This is real, I am going to heal.

Not all was peaceful, though, as was explained the following day:

I have a couch outside my door that the Russian people seem to love sitting on and chatting on their phones. Think I will sneak out in the middle of the night and move it! The constant drone is driving me crazy.

A testing time

Had to drop everything and go for my MRI during lunch. I cannot get over what a clean hospital this is … and so big. One more test and then I wait to hear whether I will be treated or not. Fingers crossed!

The waiting was a time of hope and tension that was partially relieved on March 24:

Anastasia told me she had seen my MRI and that I have active lesions on the brain and spinal canal. Apparently that works well for the treatment! Here’s hoping.

Just back from test. Another one later today and then my results tomorrow. I am also moving to the 4th floor, along with my neighbour Chris, to join the other MS patients. It was only -8C last night

fedorenkoResults arrived the next day:

Dr Fedorenko (pictured left) came to my room early. We went through all my tests and my MRI. I am very healthy, except for the MS. I have a 90% chance that this treatment will work for me. He says with my strong, positive mind and heart that I will heal myself and he says with his team’s 90% and my 90% we’ll make it 180% chance that I will heal. He held me while I cried … relief!  I start tomorrow.

 

The treatment begins

An important date, March 26, the time had arrived for the most serious business.

The nurse who gave me my steroid infusion is so sweet. She chatted away to me in Russian, even though she knew I had no clue what she was saying. Everyone here is just so kind and caring! And so today my journey to being MS free has started.

The following morning, Julia was given instructions to take her last walk outside for a while.

Cannot go out after tomorrow. Going to explore the underground section of the hospital now.  I have never seen anything like it before.

I heard last night that three people have arrived, had testing and been turned down in the last month. Thank goodness I didn’t hear that before Dr. Fedorenko came to speak to me.  As it was, I was a bundle of nerves.

steroid infusionSecond steroid infusion done. This stimulates the stem cells. The injections we have at 11:00pm and 3:00am are to start breaking down the bone marrow. Two more like this and then the neck gear will be installed for the final steroids and then the stem cell collection will take place. Here’s to many millions being collected.

Understandably, despite the warrior-like determination, Julia experienced apprehension at some of the stages – but never doubted HSCT.

So scared about tomorrow morning’s procedure. Trying to relax and breathe! This has been my biggest fear all along. I hope it turns out to be minor in the whole process.

Had a lovely walk this afternoon. Managed to leave the hospital grounds and found a supermarket where I bought some butter, a big chunk of cheese, a jar of jam, a sesame seed snack, a Snickers (because I need some comfort food) and a bar of hand soap. It all cost me a whopping $4.49. I then took a stroll and found a beautiful park but didn’t have the right shoes to walk there. Saw my @$$ a couple of times. Met a gorgeous German Pointer named Nora. We had a few hugs and kisses while her Mum was trying to get her to walk, but she (Nora) was happy for my attention. A kind Russian man stopped his car and held the traffic up to let me cross the road. Made it back to the entrance gate where the guard pretended he was considering letting me back into the grounds. My last walk of freedom for a while! Thoroughly enjoyed it but now my legs are wobbly from walking too far.

The following day, March 29, and the medical team made an early start.

PICC line is in … not too comfortable going in and not great to have in my neck, but eyes on the prize! Have had my x-ray and all looks good. Severe bone pain but that means that the neupogen shots are doing their work and loosening the bone marrow. Tomorrow we start the stem cell collection from the bone marrow. A five-hour procedure. If all goes well, it will just be one day, but could last up to three days.

Not all the stem cells needed were collected on the first day, so a second session was required but Julia also had something else on her mind…

Sat here this morning and realised that it is our wedding anniversary today. Seems like a lifetime ago. Sure Richard won’t remember either.

It turned out that the second day of stem cell collection was enough and that line was removed. The chemo line was inserted and the chemotherapy itself began on April 2.

Three days later, Julia had been understandably emotional.

My emotions have been running havoc since being accepted for this treatment. I am strong in myself but am just so thankful to be getting this HSCT that I can’t stop bursting into tears for no reason. (I was warned by a good friend that it would happen). When Dr. Fedorenko took my hand and told me I would leave Moscow MS-free, that just blew my mind. I will be forever grateful.

Another chat with Dr Fedorenko followed, about a most important subject.

julia ahd baxterI had a sit down discussion with Dr. Fedorenko today about Baxter. I explained that Baxter is my life and I cannot exclude him and will want to be with him once I returned home. He told me there would be no exclusions and that I would just have to be careful about him licking me or scratching me. Then he asked me what type of dog Baxter was …. um, I shall show him a photo tomorrow!  Boerboel think they are lapdogs, especially my boy.

On April 9, she found a new sign of the next stage of the treatment:

Just went to the water fountain and on the way back saw a green sign on my door stating that I am now in lock-down. Welcome to the isolation club. See you ladies and gents on the other side!

Being in isolation is one thing but keeping Julia from posting on Facebook is another.

Today (April 15) is my beautiful Baxter’s 6th birthday. Oh how I miss him and can’t wait to see him soon. xxx

Starting to finally lose my hair (April 16) …. but sadly another whole day in isolation for me!

Being shut away was coming to an end, however. April 17 brought good news.

juliaShouting this from the roof tops, Dr Fedorenko has just been in to see me …. And I am released from isolation today! I woke up telling myself that today was the day …. And now I can’t stop crying! He had to hug me to calm me down. My numbers are up from .026 to 2.35. My immune system is starting to rebuild. He says he can see my hair is still falling out, but I think it is just as stubborn as I am.  It is hanging in there!

Then, on April 18, it was time for the next step.

Dr Fedorenko came in to tell me that my blood work is looking good so they have decided to give me my Rituximab shot today. I will be tied up to this machine for about 5 hours. Tomorrow I finally get to have my line out and one more shot of steroids …. then I am ready to go. I can’t wait to get home but I am definitely going to miss everyone I have met along the way! What a life-changing experience.

julia sc birthdayAnd, finally, the treatment comes to an end on April 19.

No warning …. in early, blood tests taken, PICC line removed and steroid shot administered. These people are so on the ball, I didn’t even get time to think about it. It is all over!!! The start of my new life has now begun and it is up to me to take good care of my new body CAREFULLY.

HSCT veteran now!

Leaving on a jet plane

My bags are packed, I’m ready to go. Just writing Thank you cards and working through my paperwork at the moment. I have one final request and that is to have a photo with the dream team who have made this treatment possible for me.  Hope to sleep well tonight and have a good trip home.

Exactly one month from arriving, April 21 is the day to go home.

Had to leave in rather a hurry this afternoon. Was held up at the Russian airport for quite a while and just made my plane. Had to pay a fine for being one day over the visa limit, even with official papers from the hospital.  Now crashing at Sofitel Heathrow and then catching an early flight home. Will catch up once I am home. Thank you to everyone for your support through my incredible journey. It has been the most amazing experience for me!

Leaving UK early the next day, Julia completed her long journey home.

World traveller returns

Been home about two hours. The staff onboard BA were absolutely fantastic, as were the staff at Lynden Pindling International Airport. So lovely seeing my family again. Can’t believe how the boys have grown! My shadow is once again at my feet.

 

In the future, there will be more news of Julia’s progress after HSCT.

 

 

It’s time to make HSCT for MS available worldwide

The Maximov centre in Moscow is one of the leading providers of HSCT.

The Maximov centre in Moscow is one of the leading providers of HSCT.

Using HSCT to treat people living with multiple sclerosis may not yet be proven in the long-term, as is often pointed out by various national MS charities and some health professionals, but it certainly does have a whole lot of people saying how good it has been for them.

What’s more, and this is even more encouraging, whilst some in the medical profession only welcome the therapy cautiously and only for the treatment of the relapsing remitting type of our illness (RRMS), it actually seems pretty good for progressive MS too.

Fair enough, stories about great results are more anecdotal than from properly established clinical trials, but surely it should be the results that count. Results of real therapy of real patients is, to my mind, more important than ‘trials’.

I have nothing but admiration for people choosing to head for Russia, Mexico or wherever for their treatment – at huge costs to themselves. They have both courage and determination; courage to travel often long distances for what is still seen as a pioneering therapy – and determination to make life better for themselves and their families by effectively halting MS in its tracks. And that is besides their determination to find or raise the thousands of pounds, dollars or whatever, to pay for it. After all, HSCT does not come cheap.

Being at the cutting edge of a new treatment is going to require significant investment but I cannot help but wonder why the various health services around the world have not, as yet, seemed to grasp what is going on.

HSCT is not a cure for MS but the signs so far are that, while it does not repair damage already done to the nervous system, it is largely successful in halting progression. Furthermore, in a few cases, an actual improvement has been seen.

Now, I know that what I am going to say next will be a bit controversial with some parts of the medical establishment, such as neurologists, and downright opposed by the drug companies that are making so much money from sales of the MS drugs they produce. Nevertheless, it is a point of view that I feel must be expressed.

I believe that the national health services and organisations should stop hiding behind words like ‘unproved’ and grasp the nettle. They should accept, as evidence, what is being reported by people who have had the therapy and offer it to MS patients in their own countries.

In the long-term, it would be great to see HSCT being available globally but, until then, the cost of treatment in one of the existing clinics should be borne by the health services (or medical insurance companies) in the patients’ countries.

After all, the cost of the one-off Autologous Hematopoietic Stem Cell Transplant therapy is significantly less than the ongoing cost of MS drugs.

Neurologists’ difficulty with HSCT for MS

hsct process

Concerns are often expressed about difficulties in getting approval or agreement of neurologists for patients with multiple sclerosis to have Autologous Hematopoietic Stem Cell Transplant (HSCT).

Reports have been published via social media of neurologists telling people with MS that the treatment would not benefit them as they have the ‘wrong type’ of MS – and others where the doctors do not know enough about HSCT and some who even refuse to look at accumulated evidence offered to them.

Why is this? Well, it’s sad but maybe the real problem is that the stem cell therapy is not neurology-led.

Then others, and here it is necessary to include many national MS charities, point out that HSCT is unproved and there is not sufficient scientific evidence that it will have any long-term benefit.

MS Australia says: “The current issue with this treatment is it is still in its very early stages. It is an intrusive procedure with many high-risk steps and includes high doses of chemotherapy which can knock people around considerably. Currently, there is not significant evidence to determine if the treatment is safe, or that identifies which people actually benefit from this treatment – as results are varied.

“The pleasing thing is large scale international studies are underway and there is one clinical trial currently running in Sydney that will help discover more information about HSCT.

“Our colleagues at MS Research Australia are also compiling a registry of people undertaking HSCT treatment in Australia so that we can map their experience with the treatment. To date this registry shows less than 40 people with MS have received bone marrow transplants to treat active, highly aggressive cases of MS. The procedure has been carried out at a number of sites, including sites in Perth and Sydney.

“Internationally, only a few hundred patients have been treated this way. However, the outcomes have still been mixed. There are some who have undertaken the treatment who have seen no benefit.”

MS Australia says that it ‘does not oppose’ the treatment but describes HSCT as ‘high-risk, unproven treatment’, that is currently only considered by some doctors and hospitals on a case-by-case basis for those who have an early, aggressive form of MS that is resistant to all other treatments.

In the UK, the MS Society says: “Although only trialled in a small number of people so far, HSCT has shown some success, particularly in aggressive forms of MS. We are funding a range of research projects, some of which are co-funded with the UK Stem Cell Foundation.”

In the USA, the National MS Society says: “At present, there are no approved stem cell therapies for MS. Stem cell therapy is in the experimental stage, and it’s important for people to have the best available information to understand this exciting area of research and make decisions related to this complex issue.

It adds that HSCT is being investigated in Canada, the United States, Europe and elsewhere, including an international clinical trial of this procedure being led by Dr. Richard Burt of Northwestern University in Chicago.

Initial results from the five-year multi-centre HALT-MS (High-Dose Immunosuppression and Autologous Transplantation for Multiple Sclerosis) trial suggest that autologous hematopoietic stem cell transplantation may be a highly effective treatment for patients with aggressive relapsing-remitting MS.

However, that goes against the experience of those with progressive forms of MS who report positive results following HSCT in Russia, Mexico, Israel, the Philippines, and other places with reputable clinics offering the treatment. You only have to look at the various HSCT groups on Facebook to see that for yourself.

We also need to remember that HSCT is not a cure, nor is it claimed as one. It is used to stop progression of the illness, so it gets no worse – although, in some cases, remarkable improvements have been found.

With neurologists seeming to be reluctant to support or recommend this therapy, it is more important than ever for people with MS to remember that they, not neurologists, have the final say about treatments that they receive.