Helen replied to the topic Paraprotein news in the forum General 12 years, 2 months ago
Hi Andy
I'm there on the 11th too, let me know when you get there?
Love Helen
Helen replied to the topic Revlimid exhaustion in the forum Newcomers 12 years, 2 months ago
Hi Jimmy, Phil, Colin, Dilini
I thought it was just me being tired and unable to sleep, interesting too that there is no pattern, I'm not finding one either. Still it's working so I'll take it!
Love Helen
Helen replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Hi Vicki
This is a terrible blow for you both, i can't imagine how i'd have felt if that had been me. It is to be hoped that Plerixafor is now going to be allowed for Colin. Keep us posted about plan C.
Love Helen
Helen replied to the topic 12 months since my stem cell transplant in the forum General 12 years, 2 months ago
Congratulations Wendy, from one to another. Its a funny feeling to be here, one year on and in pretty good shape, all things considered. Did you have cake? I wasn't sure how to behave, I think I secretly wanted the family to put balloons on the door and send cards! I did have a good day though. Well done.
Love Helen
wendyduffield replied to the topic 12 months since my stem cell transplant in the forum General 12 years, 2 months ago
thanks all of your for your well wishes and replies. I did hesitate about putting on a good news post because so many of you are going through such difficult times it feels insensitive but I am glad I did because of the positive responses. I think Eve suggested we may have something like they do on myeloma beacom, the US forum, a section for…[Read more]
wendyduffield started the topic 12 months since my stem cell transplant. in the forum General 12 years, 2 months ago
Hi All
It was the first anniversary of my stem cell transplant on Saturday and I have been celebrating! My immune system in 1 year old and I feel in great shape. I am trying to attach a link to my latest post in which I reflect on the stem cell transplant process which may be of interest to those that are going through it or about to go through…[Read more]
Helen replied to the topic Stem cell transplant in the forum Carers 12 years, 3 months ago
Hi Cathy
I'm a year post transplant and what the others say is exactly right, once you have the drugs and transplant, it is a process which you just have to endure. Most of us get through it in one piece. It's horrible, I was taking anti sickness, anti diarrhoea, antibiotics, antacid and painkillers for many months, I'm good enough now, about a…[Read more]
Helen replied to the topic Good News in the forum General 12 years, 3 months ago
Really good news Eve, get away on those holidays and enjoy them
Love Helen
Helen replied to the topic My Mums SCT in the forum Treatment 12 years, 3 months ago
Hi Ali
I think the jelly beans will sit on the side for a while, but she will share them I'd say:-) And they are small so you can keep trying them until they taste right. I drove from the 3 rd week, but I didn't have a line in, even now though I don't like driving more than about 30 miles as I can't concentrate well enough, I'm still struggling…[Read more]
Helen replied to the topic Proper Fed Up Mark III in the forum Side-effects 12 years, 3 months ago
Dear Dai
It's good to know someone is keeping a good eye on you at the hospital, I hope you get some answers soon. I've been back on the Revlimid for 2 months now, no pain so far but it is already playing havoc with my guts again.
Love Helen
Helen replied to the topic Thank you after 5 weeks of grieving in the forum End of Life and Grief 12 years, 3 months ago
Dear Teresa
I do not have the words to help, it must be such a difficult time. I love the idea that Peter is a visitor wandering through your mind. It is a comforting thought. Take care of yourself on your journey into your altered life.
Love Helen
Helen replied to the topic My Mums SCT in the forum Treatment 12 years, 3 months ago
Hi Ali
The down feeling is very normal, after everything and all the hype, suddenly you have to pick up the bits and try to put life back together, it's not easy. Keep reminding her that she's been through so much she's allowed to feel 'off it ' a bit. Just not too much though….! they will offer counselling if needed, and it might be!…[Read more]
Helen replied to the topic Proper Fed Up Mark III in the forum Side-effects 12 years, 3 months ago
(with heavy irony tone) Phew Dai it's good to know that they can sort out the minor stuff so efficiently………..
hope you are mending now, what will they do about the Hb level do you know yet?
Love Helen
Helen replied to the topic Revlimid exhaustion in the forum Newcomers 12 years, 3 months ago
Hi ?.
revlimid makes me Very tired, I'm afraid that all I do is give in to the tiredness,
Love Helen
Helen replied to the topic Hello again to all in the forum Treatment 12 years, 3 months ago
Hi Jacqui
I too have IgA lambda light chain myeloma and am oligo secretory, I was told a similar story to Tracey, though I'm without the Amyloid, I have not asked what my chromosomal risks are, I'm not sure I want to know that just yet, when I relapse I'll ask. I had my SCT a year ago. At the minute I'm in comple remission, but I'm on Revlimid…[Read more]
Helen replied to the topic My Mums SCT in the forum Treatment 12 years, 3 months ago
Happy Birthday Ali, I'm guessing you will have to take the cake round to your mums today to celebrate with the family, make the most of it, it's time to start the rest of life with happy things. Have a lovely day.
Love Helen
Helen replied to the topic getting ready for stem cell tranceplant in the forum Newcomers 12 years, 3 months ago
Hi Angela
I'm glad Mavis was able to tell you about hip replacement first hand, as I've only looked after people with them. Once the SCT is over and you have recovered, the hip replacement should be straightforward, the damaged section is removed and you should have a pain free joint without loss of height. Many of the patients I looked after…[Read more]
Helen replied to the topic And the GOOD news is in the forum Off topic 12 years, 3 months ago
Oh David
What a blow for you, what does this mean for the anniversary plans? Is the new treatment as long as the mm one?
Love Helen
Helen replied to the topic Proper Fed Up Mark III in the forum Side-effects 12 years, 3 months ago
Hi Dai
Does the silence mean that they kept you in again? Hope it's getting better
Love Helen
Helen replied to the topic Proper Fed Up Mark III in the forum Side-effects 12 years, 3 months ago
Are you and Slim getting on ok now Eve? You're a bit quiet at the minute. Hope you are all right.
Love Helen