Tag: treatment

115 Planning for Russia

Planning for my trip to Russia for HSCT is well under way now, so I thought I’d share with you where I’m up to.

A visa is required for travel to Russia and the process for this is rather complicated.  I am waiting for an official visa compliant invitation from the hospital and once this arrives, there is a long and detailed online form to compete, followed by a visit to the Russian Consulate in Manchester. Shortly after that, my passport will be returned, containing a 90 day single entry Russian visa.  I am hoping to find time to book my flights in the next few days and will feel quite relieved once that’s all done. 

Then it’s just preparing the house and things I will need on my return, sorting things out at work, finalising plans for my aftercare and packing my suitcase to do! I am already compiling lists.  My mum was one for writing lists and I often think of her when I’m in list writing mode ❤️

As the time draws nearer, friends and family are naturally asking lots of questions about how long I will be away, what the treatment will involve and how I’m likely to be when I get home.  I thought I would try to answer some of those questions here.

I will be in Russia for a total of 30 days from Monday 16th March until Wednesday 15th April.  I plan to travel on my own, basically to keep costs down. I have spoken to many others who have travelled alone without difficulty and know how to plan for the journey home. 

The first few days are taken up with pre treatment testing.  This is to ensure there are no hidden medical conditions which could be impacted by HSCT.  There is also an opportunity to have a full MRI scan of the brain and spinal cord in one of the higher strength Russian machines, which can show greater detail than the UK MRI machines.  During this time, there is also a bit of down time, during which I’ll be able to go outside, mix with other patients and hopefully squeeze in a bit of sightseeing. 

The exact protocol used varies from clinic to clinic, but at the Moscow hospital, the timeline is as follows …

Day 1 – 4 Examination and final decision on treatment.

Day 5 – 8 Stem cell mobilisation Drugs are used to stimulate the bone marrow to produce extra haematopoietic stem cells and release them into the blood.  These stem cells can develop into the cells of the blood, bone marrow or immune system.

Day 8 – 9 Stem cell harvesting – An apherisis machine is used to extract stem cells from the blood. These are then frozen until needed.

Day 9 – 12 High dose immunosuppression (chemotherapy)

Day 13 Stem cell reinfusion

Day 14 – 27 Haematological and Immunological recovery – Isolation – the body builds a new immune system using the reinfused stem cells.

Day 29 – 30 MoAb-Rituximab and discharge

It is important to note that it isn’t the stem cells that treat the faulty immune system (the root cause of MS), but the chemotherapy that partly destroys the faulty immune system, allowing a new healthy one to grow.  It is thought that a new immune system would eventually grow following chemotherapy, without the introduction of stem cells, but by providing the transplant, recovery is much quicker and the time a patient has a compromised immune system is significantly reduced.  

Through the Facebook HSCT support groups and by reading numerous blogs, I have followed the journey of many patients travelling to Russia and through treatment.  I feel I have a good and realistic idea of what to expect …and I believe I will cope and it will be worth it.  

Isolation

The period in isolation is not as alarming as it first sounds.  The reason for isolation is to reduce the risk of infection whilst the immune system is at its lowest. There are regular visits from medical staff and your developing immune system is monitored daily via blood tests. Once the medics are happy with your blood results, you can leave your room and mix with others again.  I see the isolation phase as a time to rest and recover and allow the body to heal and repair.  I will have access to TV, Netflix, Facebook, Whatsapp, my kindle, phone etc and will be able to keep in touch with family and friends (as well as updating this blog!).  I’m not worried about coping with isolation.  

Hair Loss

Yes, I will most likely lose my hair! 

The chemotherapy used causes hair loss in virtually all patients and the use of cold caps is not recommended.  I quite like my hair so was a bit bothered by this when I first read about HSCT, but I’m feeling fine about it now.  Other patients have spoken of the liberation of baldness and I’m looking forward to seeing what it’s like!  I can’t see myself bothering with a wig so will be spending some time researching funky scarves and head wraps over the next few weeks. 

Once I am home, my GP has agreed to manage my aftercare.  This will mainly involve monitoring my bloods to ensure my immune system is regrowing.  When first home, I am likely to be tired and in need of peaceful rest.  It is important to keep the house spotlessly clean, to eat carefully (to avoid infection) and to avoid contact with sick people.  My amazing daughter has arranged to take some time off work to take care of me and I am so grateful for all her support.

Recovery varies enormously from person to person and is often described as a rollercoaster.  The general advice is to eat a safe and healthy diet, slowly build exercise and movement, but most of all to have a positive mental attitude … or as Dr Federenko advises …


GoFundMe

80 Escalation vs de-escalation

I thought I’d write a post about my views on the treatment escalation model for Multiple Sclerosis widely used in the UK and throughout the world.

There are currently 13 Disease Modifying therapy drugs available in the UK and these are categorised by efficacy in to three groups: Moderately effective, More effective, Highly effective.

Potential side effects are more severe for the drugs with higher efficacy.

Discussing DMTs is always challenging as they all seem to have such complicated, hard to pronounce names and on top of this, most are known by two names – the generic drug name and the brand name. Bear with me if you can! 

I have cobbled this together from the MS Trust website, to show the drugs in their three categories …


Further information can be found here … MSTrust

Most MSers are offered DMTs following an escalation model that looks a bit like this …


Patients are initially offered first line treatments, also described as “moderately effective” drugs.  If they continue to progress or relapse, or are unable to manage side effects, they are then offered an alternative first line treatment.  As these drugs can take many months to have an impact, each cycle of trying and failing can take up to a year or more.

Once first line treatments are deemed to have failed, patients are offered second line treatments and eventually third line or “highly effective” treatments.

By this time, several years may have passed and the MSer may have acquired significant  permanent damage to their brain and spinal cord, resulting in long term disability and daily difficulties. 

DMTs don’t treat symptoms, reduce pain or improve disability.  In a sense they are an attempt to “future proof” and reduce further disease progression and damage to the central nervous system.  Many MSers and indeed, neurologists are now asking questions about why patients can’t be offered HIGHLY EFFECTIVE treatments from the onset of the disease.  Imagine being offered a treatment that has a higher likelihood of reducing relapses and progression and therefore reducing damage?  It makes perfect sense to me. 

For many, the most effective drugs will control their MS and allow them to live a normal life.  For others, they will still have occasional breakthrough disease, which can then be addressed by one of the lower efficacy drugs. 

Several high profile forward thinking neurologists are now actively promoting this de-escalation model as a more effective treatment plan than the current escalation model.  Some are also including HSCT as a first line highly effective treatment. 

Some neurologists are no longer offering first line treatments at all.  These are mostly drugs developed 20-30 years ago which, at the time, where the only treatments available.  Newer more effective drugs have become available but for some reason, these drugs with low efficacy are still being broadly offered.  This doesn’t seem to happen in relation to treatments for other conditions.  When newer, better treatments are developed, the older less effective treatments are relegated to history.  This hasn’t happened with MS and it’s really not clear why.

Change is slow to come and all the time each person with MS is experiencing more damage to their brain and spinal cords.  My own neurologist is stuck firmly to the escalation model, meaning it could be several years until I qualify for highly effective treatments …by which time I could be experiencing much worse symptoms, but may be too old to be considered for those treatments. 

Many people with MS are frustrated with the system and the neurologists who care for us.  The disease is like a ticking time bomb and we each have no idea how it may progress over time.  Even those whose disease appears inactive, may be experiencing silent progression in the back ground.  Leaving us to deteriorate whilst denying us the most effective treatments is devastating.

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Tomorrow, this gorgeous young man is taking part in a sponsored fun run to help raise funds for my treatment.  Good luck Bobby …you are a superstar!