daisychain replied to the topic Royal Marsden Myeloma Specialist in the forum Treatment 9 years, 7 months ago
Hi Matt
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]
daisychain replied to the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 7 months ago
Hi vicki
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
daisychain replied to the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 7 months ago
Hi alan
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]
daisychain replied to the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 7 months ago
Hi alan
a little belated to say thank you for your posting. It’s great news that the Carfilzomib is working so well for you
daisychain replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 9 years, 11 months ago
Hi Karen, Tony and Jeffery
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]
daisychain changed their profile picture 9 years, 11 months ago
daisychain replied to the topic Smouldering myeloma in the forum Newcomers 9 years, 11 months ago
Hi Rebecca
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]
daisychain replied to the topic coping emotionally,,and nerves,, in the forum General 9 years, 11 months ago
Hi Simon
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]
daisychain replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 9 years, 11 months ago
Hi Jeffery
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
daisychain replied to the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 9 years, 11 months ago
Hi dusk
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]
daisychain replied to the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 11 months ago
Hi Julie
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
daisychain started the topic Can our profiles or posts give name of treating hospital @consultant? in the forum General 9 years, 11 months ago
Hi all
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]
daisychain replied to the topic Three Years! in the forum General 9 years, 11 months ago
Great news long may it continue!! Where are you being treated
Dawn xx
daisychain replied to the topic Three Years! in the forum General 9 years, 11 months ago
Great news long may it continue!!
daisychain replied to the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 11 months ago
Thank you Julie
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]
daisychain started the topic Is any one Carfilzomide ? in the forum Treatment 9 years, 11 months ago
Hi
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
daisychain started the topic Is any on Carfilzomide ? in the forum Treatment 9 years, 11 months ago
Hi
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
daisychain replied to the topic FAILED SCT I THINK!!!! in the forum Treatment 12 years ago
Hi Kay
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]
daisychain replied to the topic FAILED SCT I THINK!!!! in the forum Treatment 12 years ago
Hi Kay
I've been reading through your blog and really interested to know what happened after your SCT and the revlimid.
Take care
Dawn:-)
daisychain replied to the topic Revlimid in the forum Treatment 12 years ago
Hi keith
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:-)