[KimanayaParticipant]

hi all, I am looking for some information please? I am English, currently living in Houston, Texas. My husband (US citizen) was diagnosed in jan 2009 and was treated with Revlimid, gaining a very good partial response for about 18 months. He then came out of remission and has taken Carfilzomib for 7 months which has dropped his M.spike down to 0.5. He is admitting Tuesday for an autologous STC.My children and granddaughter and close friends are in the UK, we have limited family here and no one close to where we are. We are considering moving back to the UK to be close to family but I have concerns about treatment on the NHS, which I worked in for several years.
I would appreciate any feedback that anyone can give me regarding their treatment protocols, treatment successes, availability of drugs there, any difficulties with post code lottery or difficulties getting appropriate treatments etc. Care here is good, drugs are all available but there is a financial cost of course, insurance only covers 80% and with rev etc at exorbitant prices, that soon adds up. My biggest problem is being so far away from family but I need to be sure that I don't put my husbands health at risk.
Thank you for any advice or info you can offer.
Kim in Houston.

[eveParticipant]

Hi Kim

Welcome to the forum.

I can understand you wanting to be close to family and friends but I have to say the treatment in America is more advanced than in this country,if you can pay private you can get some drugs the NHS will not offer,I know the Marsdon is treating at least one patient with drugs not available on NHS.also NICE have a lot of imput the have a criteria that consultants have to follow.

It still is a postcode lottery,depends were you are for trials.plus any admission to hospital is different some are able to go straight to unit,but in my husbands case it's A&E then it's finding a suitable bed.
If I was in your shoes I would stay in America,has your husband any family that live near by????
An awful lot of people who work for the NHS are under pressure,and patients have long waiting times for treatment,but it does vary all over the country, Eve

[MothasParticipant]

Kim I think it depends on how good your insurance is. If it's extensive and will keeps subsidising the treatment in a way you can afford, then you might be better of staying in the states. You may want to factor in access to good specialists too. Is there a specialist myeloma clinic in or near Houston you use?

We're generally around 2 years behind in terms of the new treatments. As we know, that can be a long time for an MM patient.

[Author]

Posts