My friend Brett has been back from Moscow for 9 weeks now. He recently did a radio interview in Brisbane. Facebook won’t allow me to load the audio, so I thought I would share it here. Well done Brett!
About 6 weeks ago Dr. John Moore from St. Vincent’s Hospital in Sydney phoned me while I was driving home from the airport. I was delighted to receive his call but regretted not asking to call him back because I was unable to stop and take notes (yes, I do have Bluetooth speakers in my car). I will do my best to accurately summarize our conversation about the future of HSCT trials in Australia…
Stage 3 clinical trials at St Vincent’s will commence in the near future. Dr. Moore will be contributing to trial results with Dr. Richard Burt (Chicago). Stage 3 will be a trial that compares Tysabri efficacy with HSCT efficacy. This means that, for the purposes of this trial, Sydney will move from a myeloablative to a non-myeloablative protocol. For patients with other autoimmune diseases and for MS patients who are JC positive, Dr. Moore will continue to run a secondary myeloablative treatment protocol. I have been informed that Dr. Moore has received funding to complete 38 transplants, however two-thirds of this allocation must be used to treat oncology patients and this means that only around 12 transplants will be available to MS patients in the stage 3 trials. The trial St Vincents will be joining is listed here: http://clinicaltrials.gov/show/NCT00273364 This clinical trial listing will give you the best idea of what the criteria for the stage 3 St. Vincents trial will be.
While Dr. Burt was in Australia last week, he also held meetings with the doctors at the Austin Hospital in Melbourne. They are very keen to start up a program there and have recently transplanted one patient. Additionally, two hospitals in Queensland are continuing to attempt to set up programs but delays so far have indicated this may be a long and drawn-out process.
On Friday, 29th August I flew to Melbourne to attend a meeting with Josh Frydenberg, Federal Member of Parliament and the Parliamentary Secretary to the Prime Minister. The meeting was arranged by Professor James Wiley. Professor Wiley is a hematologist, Professor at The Florey Institute, and supporter of HSCT for MS. The Florey Institute of Neuroscience and Mental Health is the largest brain research group in the southern hemisphere. Professor Wiley was also the previous chairman of the MSRA Registry of stem cell transplants performed for MS within Australia. It was an honour to be asked to attend this meeting with Professor Wiley. The Hon. Mr. Josh Frydenberg was very welcoming and listened carefully to our plea for additional funding for HSCT trials in multiple centers in Australia. Mr. Frydenberg was impressed with both the clinical data we presented and the economic case for HSCT. He pledged to help us with a face-to-face appointment with Federal Health Minister, Mr. Peter Dutton. Our goal is to secure funding for transplants at various hospitals, including Box Hill and the Austin.
Finally, I can reveal that the MSRA have been preparing a new statement on HSCT, which I am eagerly awaiting. The statement has been carefully constructed over many weeks, with contributions made by neurologists Prof. Simon Broadley, Dr. Colin Andrews, Dr. Mark Slee, and others. The reports I have had are that this statement is expected to be the most favourable statement the MSRA have made in regards to HSCT, although I am sure it will still be conservative in some regards.
Now that we have four new Aussie HSCTers back from Moscow, I have had to get my skates on with this post. I wanted to discuss the post-treatment period with you all. While the emotional and physical hard work happens in Moscow, I personally feel the psychological hard work happens back home after HSCT. Once home, you have done all you can to fight MS….and you are sitting back waiting for your miracle, right?! Well, not so fast…
Firstly, lets go back to the last couple of days in Moscow. That injection you got in your rear? That wasn’t painkillers or antibiotics. It was a depo shot of steroids, which will give you extra energy and strength for approximately 3-4 weeks afterwards. So if you come home with pretty good energy levels, like I did, then you need to expect a ‘crash’ in a month or so. If you are home now and very tired, keep in mind you will be even more tired in a month. This is a psychological and emotional game you are playing now and only knowledge can prepare you for the ‘rollercoaster’ ride of recovery. I totally understand the desire to get out and enjoy your new MS-free body but you are post-HSCT and pushing your body now will only result in a longer recovery period. Rest is key. Staying stress-free is key. And taking care of your health with great infection control is key.
Any infection you get at this point will set you back, and probably land you in hospital. Resist the temptation to head to your local fast food outlet and gorge on your favourite treats, with distant memories of well-boiled tongue behind you. Not only is this bad for your delicate post-chemo digestive system, but you simply shouldn’t be risking eating out. The safest way to consume foods for the first couple of months is to enjoy home cooked fare. Remember, you are on the ‘pregnancy’ diet – so things like deli goods, soft cheeses, tofu, sushi etc. are all off limits. I recommended indulging in your favourite one-pot wonders, such as vegetable soups, beef casseroles, spaghetti Bolognese, or roasts. If it is well cooked, using fresh vegetables and quality meats then you are being as safe as possible.
Another thing many of us post-Russia patients experienced back home was bone pain. A deep, horrid bone pain. Some of us felt it in the shins, some in the feet and hands, some in the hips. From what I have heard, none of us got relief from panadol, codeine, or nurofen. The bone pain is a result of the G-CSF (Nupogen) injections you had during treatment. It really was uncomfortable for me. I would wake up in the night in misery. All I can say is “ride it out”. It should resolve in 4-6 months – mine did. The other horrid side effect I experienced was night sweats and hot flushes from the hormonal dysfunction resulting from chemo. If you were not menopausal before HSCT, then you may be now. If you are in your 30s or younger, this may be a transient side effect like it was for me. Your haematologist can throw in LH & FSH tests onto your regular blood testing to let you know if you are still ovulating, and this will give you some idea of what to expect in the future. I had night sweats for at least 4 months before things normalized.
Other than this, all I can say is stay positive. There is no benefit whatsoever in worrying about your MS coming back. If you still have old symptoms, then accept that that is what was forewarned. If you don’t have some or all of them, then you have won the HSCT lottery. Be prepared for old MS symptoms to come and go during the 1-2 year recovery period. It is normal and reflective of the ‘rollercoaster’ healing period. You shouldn’t judge your results until well after 12 months post-HSCT. Furthermore, try not to let every dizzy spell or sensory issue make you think your MS is back and active. If you fall into the 20% of non-myeloablative patients who require top-up chemotherapy, you need to be sure it is a clinical relapse. That would mean new activity on MRI and new symptoms. I am pleased to say I have neither, I am totally medication free, and I am now enjoying life like never before.
I have just had a long phone call with Dr. Fedorenko in which we discussed the current difficulties regarding bookings in Moscow. In the last week, we have had some sudden discussion about shared rooms in Moscow and even some poorly-explained emails sent to incoming patients in which they were informed of a possible delay in their treatments. I am pleased to say my call with Dr. Fedorenko has cleared up most of the confusion surrounding these changes. Dr Fedorenko explained that this week the Ministry of Health in Russia set down a directive that his 10 bed haematology/oncology ward must ensure that a minimum of 50% of beds be used exclusively for Oncology patients. This is because there are a limited number of transplantation wards in Russia and they had noticed in increase in usage for autoimmune patients – arguably at the expense of oncology patients. This meant that Dr. Fedorenko essentially had half of his beds ripped away from him. So, he had to either ask patients to share a room for part of the treatment, or he had to reduce the number of patients, or he could do a combination of both. This made it tricky for the patients who are about to fly into Moscow, so Dr. Fedorenko had Anastasia advise them that they would have their treatment delayed unless they agreed to share a room on the second floor. Of course, that email sent people into a tailspin…
Dr. Fedorenko went on to clarify that he still operates to international standards and the shared room setup would only be for the testing week and for GSCF injection days. All chemotherapy, apheresis, transplantation, and isolation days would be in a private room on the third floor. Dr. Fedorenko also stressed that it is his preference that each person have their own room at all times – so this will be the case whenever possible. He also said that when some sharing was required, the patients with the lowest EDSS scores would be asked to share while the more disabled patients would have their own room if possible.
I asked about the status of all the patients arriving in the next month who had already purchased flights and visas etc., and Dr. Fedorenko assured me that all of these patients would be treated provided they understand the situation and are willing to share a room as need.
In light of the fact that I spent most evenings out to dinner during testing week, I personally see no medical reason why sharing a room during testing and GSCF injection days would be a problem. Patients are not under any infection controls during this time anyway. The only issue is the discomfort of sharing a space with a stranger, and in light of our current health status’ I think it is a small price to pay.
I hope this clarifies things for those people who have called, emailed, or texted me today.
(Well….it was an extinct volcanic crater to be precise)
In April 2013 my family and I travelled to Hawaii for a last family holiday before my big trip to Moscow. Much like an expecting couple has a final vacation before their lives change completely, the unspoken purpose of our trip was to spend some quality family time together just in case we wouldn’t have the opportunity again for a long time. At the time of the trip, I was still largely in the closet about my MS. We have been to Hawaii many, many times before and we know a Hawaiian vacation usually includes a lot of walking every day. Because of this, during our pre-HSCT trip, I had to hire a wheelchair to ensure we could get around as needed. With my usual determination, the wheelchair spent much of the time in the car – a backup plan I was determined not to use if I could help it. From memory, I only used it one day. One of my big psychological and physical challenges of the 2013 trip was a climb up Oahu’s famed Diamond Head. I remember it being physically exhausting, and I recall being overwhelmed with vertigo and nausea but I hiked with my 5 year old son and I was determined to conquer the summit alongside him. And we did.
This year we returned to Dallas and Hawaii thanks to the generosity and kindness of our family who gifted us air tickets, airport transfers etc. Travelling so far from home 9 months post-transplant is less than ideal given that my CD4+ count remains below normal levels and that I remain unvaccinated post-transplant (I will commence all vaccinations when I am 12 months post transplant), but we had a pretty important event to attend in Dallas. By the time we landed in Honolulu, the preceding two weeks in Dallas had exhausted me but I was determined to enjoy it as much as possible. We had an absolute ball together: snorkeling, swimming, walking, and just being a family. At the back of my mind though, was Diamond Head. I was determined that I would climb it again, this time triumphant in my defeat of MS. We decided to climb at midday one day and in hindsight, this was a mistake. It was a hot day, spattered with the odd sun-shower, which only made the volcanic mountain steamier. I will be honest; I was surprised how hard the climb was. I had planned to bound like a gazelle up the summit, but I had to stop regularly to catch my breath – and my little hiking buddy from the previous year decided I was too slow and went ahead without me. Perhaps I had failed to acknowledge that, at 9-10 months post-transplant, I am still very much building strength and recovering. Or maybe the previous weeks of indulgent food consumption and lack of exercise in Dallas had slowed me down. I am certainly carrying a few extra kilos as a result of vacation eating. At one point, I stopped halfway up the mountain and, nearly crying with frustration, I gave myself a pep talk. I remembered that achieving this goal was not about being the fastest or the strongest, it was simply about doing it. I took a moment to breath in the fresh ocean air and enjoy the nature surrounding me. And then I went on…
Arriving at the summit of Diamond Head was a moment of relief and joy. I made it! My body has been through a lot. It has been attacked by its own immune system. It has been blasted with steroids and chemotherapy. I have lost my hair, my strength, my immune system, and my sense of infallibility. But I have come out stronger, and more determined to climb any mountain I choose to. Diamond Head is special to me and will always be important. I look forward to climbing her again in 2015.