HSCT in Moscow, Day by Day

ms-headerDoesn’t time fly? It seems only yesterday that I was preparing to go to Moscow, yet tomorrow will be three weeks since my return. (Note: Now four weeks).

I have written enough about my experiences at the AA Maximov center so, today, we’ll take a look at how HSCT progresses, step by step.

The following is reproduced from the Moscow clinic’s instruction schedule. I hope that you find it interesting.

Meals:

8.30 – 9am          Breakfast

12pm                     Second breakfast

2pm                       Lunch

6pm                       Dinner

Steps of Treatment

Stem cells stimulation – 4 days (sometimes 5-6 days, depending on the results of stem cell collections) in combination with infusion of steroids at 11am (1 dose – 200 ml liquid for 20-40 min).

Also, patient takes 1 antacid pill twice day 30 mins before food (before breakfast and before dinner).

G-CSF stimulation injections (subcutaneous) at 11 pm and 3 am.

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That’s me in my new wheelchair in the HSCT centre in Moscow, with Dr Fedorenko and assistant Anastasia.

Insertion of special catheter in neck for stem cell collection and chest X-ray control.

Collection of stem cells (for 1 or 2, sometimes 3 days), (we need to collect 2 or more million hematopoietic stem cells per kg of body weight) .

Removal of neck catheter and insertion of new catheter for chemotherapy and further treatment.

Chemotherapy (4 days).

1-2 days of rest (receiving only supportive medication infusions twice a day).

From the beginning of chemotherapy: patient takes oral medications 3 times a day (antiviral, antibacterial, antifungal, PPI gastro protection).

Pills for breakfast —  1 antacid pill before food. Other pills — after food. Pills for lunch — 1 pill after food. Pills for dinner — 1 antacid pill before food. Other pills — after food. Patient has additional oral medications on Mon, Wed, Fri — co-trimoxasole (2 white big pills — morning, evening). Patient has 2 supportive medication infusions in the evening.

Food Allowed during treatment: Most food from outside the hospital is suitable.

Foods to be Avoided during treatment: Fresh fish, e.g., sushi, raw meat, un-pasteurised milk or milk products, see note below. Fast food outlets, fresh vegetables and fruits.

Day of transplantation. Patient should avoid food after 12 pm on this day. Nurses Will clean and prepare room for transplantation.

Isolation. Patient should never leave the room. Patient should keep the glass door closed. Medical staff will clean the room every day. Patient’s suitcases will be removed. Patient should heat up food (approx. 10-20 seconds) in the microwave before consuming. Patient should use a special solution for mouthwash (mix half of cup of red solution with cap of water). Patient should use provided clorhexidine solutions for washing body — big bottle for genital area and small for legs/arms/body. Our staff will change bedding and wash clothing every day.

A patient must inform medical staff immediately of any problems or changes in condition.

Food Allowed during Isolation: Tinned food, e.g., vegetables or tuna, Bread, Coffee, Tea, Dried fruit, Fruit Juice, Spices, herbs, Lollies/sweets, Nuts — roasted and salted. Processed food, e.g., muesli bars, packets of soup, noodles, Milk and Yoghurt conforming to hospital standards.

Food Restrictions during Isolation: Fresh vegetables and fruits, Milk and Yoghurt products that don ‘t conform to hospital standards. Raw nuts, toasted muesli — unless it is microwaved first – Fresh fish, e.g., sushi, raw meat.

Patient receives one infusion of Rituximab (for 5 hours) after recovery of leukocytes (1 or 2 days before discharge).

This article, written by me, first appeared on Multiple Sclerosis News Today.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease/didorder-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Welcome or Not, FDA Focuses on Stem Cell Treatments

New Pre-HSCT Treatment May Be the Future, but HSCT with Lower Dose Chemo is Right Choice for MS Patients Now

News that scientists in the US are working to find a new pre-HSCT treatment to carry out stem cell transplants without the need for chemotherapy, as published in Multiple Sclerosis News Today, leaves me with mixed feelings.

While such a development could potentially be great news and an important development, it must be remembered that such a method is still years away.

MS ribbonIn the meantime, it needs to be recognized that chemotherapy is not just a part, it is the key part of stem cell therapy. It is chemotherapy that carries out the most important task of suppressing the faulty immune system that attacks the myelin sheath; the stem cells just help the healthy immune system rebuild more quickly — something it would do without the new stem cells, but over a much longer time.

That is why people often say ‘no chemo, no cure’.

My concern is that there are too many clinics trying to lure people into stem cell therapy without chemo and they could possibly latch onto this news, allowing patients to gain a false impression of what they are being offered.

New pre-HSCT Treatment Is Still Being Studied

Let me make my position quite clear: Right now, the only stem cell therapy for MS patients worth considering is autologous non-myeloablative HSCT (hematopoietic stem cell transplant). Autologous because it harvests your own healthy bone marrow stem cells for later transplantation; non-myeloablative because that protocol involves much lower doses of chemotherapy drugs, making it easier for your body to tolerate than the myeloablative’s aggressive chemotherapy protocol.

Myeloablative HSCT was originally developed as a cancer treatment, for which higher doses of chemotherapy are advisable. But the vast majority of clinics that now offer this treatment for MS have dropped the myeloablive protocol in favor of the safer non-myeloablative one.

I shall be watching the developments at Stanford University School of Medicine with great interest as scientists battle to develop a working method to suppress the human immune system without using chemotherapy. According to their study, “Hematopoietic stem cell transplantation in immunocompetent hosts without radiation or chemotherapy,” published in the journal Science Translational Medicine, the method has been successfully tested in mice. But it still has a long way to go before it’s proven safe and effective in humans, and if so, it could revolutionize MS treatment.

If it works in humans like it did in mice, the researchers say they would expect that the risk of death from blood stem cell transplant would be effectively eliminated, according to the study’s senior author, Dr. Judith Shizuru, MD, PhD, and a professor of medicine at Stanford.

“If and when this is accomplished, it will be a whole new era in disease treatment and regenerative medicine,” said Dr. Irving Weissman, a study co-author and professor of pathology and developmental biology at Stanford, who is also the director of theStanford Institute for Stem Cell Biology and Regenerative Medicine, and director of theLudwig Center for Cancer Stem Cell Research and Medicine.

The words “if” and “when” are key here. Until that time comes, in my opinion, autologous HSCT using the non-myeloablative protocol is the only real choice for MS patients who want to have stem cell therapy.

 This article, written by me, first appeared on MultipleSclerosisNewsToday.com.

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Ian Franks
Ian Franks is our Chief Columnist and an MS Patient Specialist. He enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist Health & Disability blog at http://www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

Can Multiple Sclerosis be stopped? Maybe SOME can

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Prof Basil Sharrack (left) and Prof John Snowden have a clinical partnership of neurology and haematology.

Last night on the UK’s BBC television, its leading documentary programme Panorama aired an episode entitled Can you stop my Multiple Sclerosis?

It followed four people with relapsing remitting MS as they were given bone marrow transplants that are more usually reserved for cancer patients. I say ‘transplant ‘ but the stem cells are taken from the individual patient, so there is no risk of rejection.

The treatment – known as an autologous haematopoietic stem cell transplant (HSCT) – aims to destroy the faulty immune system using chemotherapy. It is then rebuilt with stem cells harvested from the patient’s own blood. These cells are at such an early stage they’ve not developed the flaws that trigger MS.

Now, as my MS is not the relapsing remitting type, this treatment would not be right for me but, as I watched the programme, it was a delight to see some real progress being made treatment and remarkable improvement in the lives of those for whom it is suitable.  If a similar treatment could help me, would I take it? Once it had been proved to be safe, yes of course – wouldn’t you?

The treatment is being pioneered in the UK by two consultants at Yorkshire’s Royal Hallamshire Hospital where 20 patients have been treated so far. Neurologist Prof Basil Sharrack said: “To have a treatment which can potentially reverse disability is really a major achievement.”

Prof John Snowden, consultant haematologist, said: “The immune system is being reset or rebooted back to a time point before it caused MS. It’s clear we have made a big impact on patients’ lives, which is gratifying.”

The treatment involves intensive chemotherapy, so patients are warned that there are side-effects such as nausea and hair loss.

Prof Richard Burt, of Northwestern University, Chicago, carried out the first HSCT for MS in 1995. He said: “There has been resistance to this in the pharma and academic world. This is not a technology you can patent and we have achieved this without industry backing.”

A study published last year involving MS patients in Chicago, USA, showed significant reductions in neurological disability and, for some, the improvements persisted for at least four years – although there was no comparative control group. The outcome of a more detailed international trial – which will report in a couple of years – could determine whether the stem cell transplant becomes a standard NHS treatment for many MS patients.

A note of caution was later voiced by Dr Emma Gray, head of clinical trials at UK’s MS Society. She said: “Ongoing research suggests stem cell treatments such as HSCT could offer hope and it’s clear that in the cases highlighted by Panorama they’ve had a life-changing impact.

“However, trials have found that while HSCT may be able to stabilise or improve disability in some people with MS it may not be effective for all types of the condition.”

Dr Gray said people should be aware it was an “aggressive treatment that comes with significant risks”, but called for more research into HSCT so there could be greater understanding of its safety and long term effectiveness.