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Positive start to 2016

Posted by
08 Jan 2016

After disappointing news in December, and some confusion over what was happening with my treatment. I am starting 2016 with a new plan and a positive attitude.

December was a very muddling time for me in terms of treatment. First of all I thought I would get Christmas at home, before having my stem cell transplant in January. Then I faced the prospect of Christmas in hospital for the second year in a row, receiving another cycle of chemotherapy, alongside a new wonder drug, Midostaurin, and then when it became apparent that wouldn't be possible, I was asked if I would be able to self fund an alternative treatment called Sorafenib.

Things didn't become clear until 23rd December when I met with my consultant. He explained that we wouldn't be able to get hold of the Midostaurin for 4 weeks, which he felt was too long to wait. So, he suggested trying Sorafenib instead. It's a drug usually used to treat liver cancer's but it has shown some success in treating AML patients with the FLT3 gene mutation, although the NHS has not undertaken a trial with it and it is not something they fund currently.

He asked if I would be able to fund it myself at a cost of £4500 per month. Cue lots of discussion amongst friends and family about setting up a crowd funding page. One friend even suggested naked carol singing to raise money, but fortunately, that was not necessary! Assuming it was a long shot, I contacted the health insurance company provided by my employer. Much to my surprise, they said they would consider a claim if my consultant could provide them with the details! A few emails later and they agreed to fund the first months cycle and would consider funding further cycles given more information. Within hours, the necessary paperwork had been completed and I left the hospital clutching a months supply of Sorafenib to start immediately!I've been taking it for two weeks now. It's not too bad, and the only side effects have been a sunburn like rash on my face and upper torso, and the soles of my feet are quite painful. I also can't drink alcohol, so I had a dry Christmas (much to my husband's delight, as I could play taxi driver!)

It's been truly wonderful to have Christmas at home. When anyone asks my eldest daughter what her favourite Christmas present is, she replies,  "Having Mummy at home", which melts my heart.

As Sorafenib is a tablet, I also got my PICC line removed this week, and I've been trying to make the most of my time at home by slowly building up my fitness again. I've been walking, although the painful feet mean I can't go too far. I started yoga classes again, and today, for the first time in months, I was able to go swimming. It's really helped give me a boost. I feel physically better than I have in such a long time and much more positive mentally too. 




Thanks so much for the update Jane.

I'm so, so pleased for you that you were able to get the Sorafenib covered by the insurance company - you deserved a little bit of luck after everything that you've been through recently!

I'm also delighted that you were able to get to spend Christmas at home with your family as I know that that was something that was very important to you.

Going forwards I wish you all the best with the Sorafenib and really hope that it proves to make the difference that will allow you to progress towards transplant.

It sounds like you're being incredibly in the meantime which is fantastic and I really admire your get up and go. Exercise always makes me feel better too and I really recommend it when it comes to the transplant - I got them to put an exercise bike in my room and whilst I wasn't able to cycle it for more than 10 minutes at a time it made me feel so much better both physically and mentally. I think it made me feel like I had a little bit more control over what was going on as I felt like I was doing something that could help.

Keep us updated and remember that we're all right behind you and here to help in any way that we can.


What a seesaw of emotions you must have experienced. I feel so sorry for consultants when they have to pass on this sort of information. They must feel terrible when they ask if a patient can fund their treatment. Hurrah for your insurance company, and I hope they can find a way to fund all the treatment. I am so pleased that you were able to spend this Christmas at home with your family. Hey, your husband found the silver lining to your treatment


Hi again! I was talking to my son-in-law this morning about your case and he thought the Cancer Drug Fund might be able to help. It might be worth investigating.

I hope you are having a good day.

Best wishes

Louise xx

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