I’ve been going to the Marsden sutton for the past 3 years and seen by Martin Kaiser. Prior to that prof Gareth Morgan. I live in Hampshire and its a real pain if a journey to get to. but wouldn’t change hospitals. Yes it is extremely busy. But I’ve found them to be at the forefront of care and expertise.  Apparently they have a very…[Read more]

Recent years fatigue has played a major part in my daily life.  It has taken time to accept and adapt to the changes.  Mind you I think getting older has a part to play too lol

a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you. Have you been taking any other drugs with it? What is your protocol? Did you get any side affects?

ive been on it since end of last year combo Iv methlyprd, thalidomide, it’s holding my disease but flc are still high…[Read more]

a little belated to say thank you for your posting.  It’s great news that the Carfilzomib is working so well for you

many thanks for sharing your experiences with me.

Karen, to clarify I am unable to access clinical trials unless I want to stop receiving private care services at the Marsden  as they don’t allow patients  to alternate between the 2.

So for example I am currently able to access Carfilzomide through private ins and t…[Read more]

Your post was really inspirational to read. Thank you. I am totally In tune with your comments.

However, Whilst I’ve read all the self help books, mindfulness, counselling etc. to get me to the emotional state you mention. as soon as I get a “blip” with my results/need to change treatment. All what I’ve learnt over the years goes…[Read more]

I totally support the advice Ellen has given you. The myeloma UK helpline incl Ellen have been fantastic in supporting me since my diagnosis Many years ago.

I feel the uncertainty of living with mm is the most difficult for me..Over the years I have gained strength by seeing a clinical psychologist, counselling (using a technique called…[Read more]

The way you’ve explained Leics Hosp, The Marsden Sutton runs exactly the same, including running behind time !!!

What about access to clinical trials it that only available if you are a NHS patient?

Best wishes

Dawn

Thanks for your response, I do know what you mean as until recently I was cared fOR under NHS. I did keep with the same consultant at my district hospital in Basingstoke, Dr Roy and Dr Sargant.

However, 3 years ago I went for 2nd opinion at the Marsden and went private (policy through my work) as this guaranteed seeing prof Gareth…[Read more]

Please don’t misunderstand me my expectations of good quality of life have adapted over the years.. Such as adaptions to manage a weakened immune system and managing different treatment protocols..

Good luck

Dawn

Just a thought. I tend to read through the American blogs, where patients/careers/family members tend to name the hospital and consultant they are with and their treatment protocols/consultant attitude to treating mm. Maybe I’m just being nosey but I find this info really insightful and helps with my expectations. I’m at the royal Marsden…[Read more]

Dawn xx

I’ve been on a lot of different types of treatments. So it’s difficult to say how I got on with each one. The positive thing is that since diagnosis I have been able to live a good quality life. Over the years I have had to make many adaptions to my life. The biggest roller coaster for me is the emotional insecurity living with…[Read more]

I’ve had MM the past 8 years, had 2 sct, velcade, Revlamid, pomalidomid, thalidomide, cyclophosphamide.

Just had 3 cycles of DTPace which has brought my sflc down to about 400 was 4,500 and was affecting my kidneys.

I’m due to start carlfizomide and wondered if anyone else is on this treatment, Your protocol and how you got on.

Best wishes

Dawn

I’ve had MM the past 8 years, had 2 sct, velcade, Revlamid, pomalidomid, thalidomide, cyclophosphamide.

Just had 3 cycles of DTPace which has brought my sflc down to about 400 was 4,500 and was affecting my kidneys.

I’m due to start carlfizomide and wondered if anyone else is on this treatment, Your protocol and how you got on.

Best wishes

Dawn

I'm really pleased to hear you're doing so well…:-) I could feel the anxiety in your original post and was really hoping things got better for you… (PS i've been there!!)

I'm doing fine rolling with the punches as you'll note from my profile!!!

It's my mind that plays havoc with me so I always try a get some form of…[Read more]

I've been reading through your blog and really interested to know what happened after your SCT and the revlimid.

Take care
Dawn:-)

Interested to know how you're getting on? had my 2nd SCT in feb with revlimid maintenance tolerating it well. When did you relapse from your 2nd SCT and long did it work for you?

Dawn:-)

I was diagnosed at 45 with MM I'm now 51> my kids were 7 and 12 at the time and it was devestating and scary. I've had my ups and downs i've had 2 stem cell transplants & a plasmacytoma in my head. I still work as a consultant and my kids/husband have learnt to live with it…

Try not to think too much into the future what if's…[Read more]