[EttaParticipant]

Hi Dave welcome I have not been on here for ages but saw your post and wanted to let you know I’ve been on Daratamumab since 2018.I was diagnosed 9 years ago I was 54.
I have had a stem cell transplant and a few different drug treatments but I’ve found this one the best for now.I’m on cycle 24 now and have found it easy going. The last 2 have been changed how they are doing it no longer having to stay most of the day with the cannula in your arm, you get tablets first usual steroids wait to see how you are then it’s an injection in your tummy timed over 5 minutes then wait about an hour if you feel okay off home with 2 days steroids and cyclovier tablets up until now it’s just the usual fatigue for a day or two.
Hope all goes well for you regards Etta.

[EttaParticipant]

Hi after reading about thinking of stopping treatment. I would like to tell you about my journey with myeloma. I was diagnosed in 2011 did the X1 trial, I had a rough time with the thalidomide and lost alot of weight and muscle in my legs. Was unable to walk for a good 6 months bed bound and feeling rotten. Then I had my cells harvested in July 2012 put back in August came home in the September and got stronger every day. I had a good 5 and half years without any maintenance then my levels started to creep up.

I started on Ixazomib in February got a bad rash on the third week so had a couple of weeks off. Started again in March same rash all over again on the third week was taken off and had a discussion about daratumumab. I started this in Blackpool Victoria Hospital in June and I have had 3 infusions already, apart from the pins and needles in my feet and a bit tired doing okay. Later in the year hoping for another stem cell treatment. I’m 61 now, not as active as I once was but try to keep going. This is a rough and sometimes rotten illness but if you can put the fight in I say give it a Go.
Thanks for reading etta x

[EttaParticipant]

Congratulations on your 50th and well done you for raising the money for myeloma.
I hope you cope well on this journey, and as you say the forum is off some help to us all in different ways . Regards Etta

[EttaParticipant]

Hi so sorry to hear your dad has passed.
Hope you have friends and family to see you through this sad time.
Regards Etta.

[EttaParticipant]

Hi Stu, sorry you have had to join our group but welcome!

Everyone on here is very friendly, please don’t be afraid to ask for help or ask questions (no matter how daft they might sound) and don’t be afraid to cry, we’re all going through it.

Hope all goes well with the Chemo tomorrow, I know it might be hard but try and keep as active as you can because those steroids and chemo can waste your muscles away, just don’t overdo it though 🙂

All the best,
Etta

[EttaParticipant]

Dear Sarah
So sorry that mark has passed my thoughts and prayers are with you god bless.
Etta x

[EttaParticipant]

Hi Veronica,

I had my SCT in 2012 and this year since about February I have been having severe bone pain in exactly the same place, also I get bad cramps in my legs which my consultant has given me Quinnine for.
I’m going to see him again in July, so hopefully will get some answers, as last time I mentioned the bone pain he didn’t seem to be concerned as my bloods were stable.

[EttaParticipant]

Hi Vicki and Colin I have been insured twice by world first for travel to oz first was only 3 months after stem cell transplant, was under 300 for two of us for 5 weeks cover. And second time they have given us a yearly one even cheaper. Hope this helps regards Etta

[EttaParticipant]

Firstly welcome Scott sorry you have had to join our forum but we are all a grand bunch on here.
I am typing one handed at the moment as just had my shoulder operated on Monday so might be spelling mistakes.
This site will help you and your wife with most questions you have. Hope all goes well for you regards Etta .

[EttaParticipant]

Hi barbh firstly welcome to this friendly site, I'm the one with mm my husband is the one who cares for me and goes to work full time. I get frustrated for him having to help me but he said he wouldn't have it any other way. So I'm sure you will feel so angry that this is happening and you will find a way to cope sending you some positive toughts and prayers to help you both.scream and shout call it names if it helps but don't give up. Regards Etta x

[EttaParticipant]

Dear Mari so sorry to hear Stephen has passed but he will live on in your heart.
God bless you and all your family.in my thoughts and prayers Etta .

[EttaParticipant]

Well done Ian you will get there I did took me a while to even touch the Zimmer frame I was so frightened.
I am now able to walk unaided but very slow,get the physios to come to the house and you will come on leaps and bounds.
Hope you get home soon and I hope Maureen enjoys her break god speed .etta

[EttaParticipant]

Just watched was interesting and so true.
Etta

[EttaParticipant]

Hi John and June when I was first told I had mm the district nurse came to show me how to do my own injections and then put me on their care list . When I got worse they sorted a commode,matteress,and other things to help me around the house…thankfully 12 months post sct I have sent some items back so get in touch with your family doctor as they will help.
Not sure what area you live I'm in Lancashire and my husband joined the the carers centre ,and they gave him plenty of useful help and information.
Regards Etta

[EttaParticipant]

Well done Elaine and Tom it's great to read some good news.
Love Etta

[Author]

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