Helen replied to the topic Spots & blisters in the forum Newcomers 10 years, 5 months ago
Hi Graeme
Back to the hospital methinks, first thing speak to nurse specialist. Might be nothing but up our way they like to know about things like this.
Helen
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 5 months ago
Hi Maureen
Thanks ..it was a lovely birthday, spoiled by steroids a bit but overall great fun and lots of treats.
Hope Ian is well?
Love Helen
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Dear Dusk
I’ve not had any dental work so I can’t say what is best from personal experience but I do know that if you are on a bisphosphonate, especially Zometa, invasive dentistry is to be avoided at all costs if possible, to prevent osteonecrosis of the jaw. Any extractions should be particularly avoided for a few months after zometa. I was…[Read more]
Helen replied to the topic The Last Six Months in the forum Carers 10 years, 6 months ago
Dear Eve and Slim
I think you are quite right to push for what Slim has chosen. Each one of us needs an advocate and he has a champion in you. It is very easy, given the incurable nature of myeloma and the complicated path it takes, for us to almost be written off when things become grim. The closer I get to the scarey decision making about the…[Read more]
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Dear Ali
A 5 pack of pants- now that’s extravagant! Seriously, I’d drop some pretty big hints, the sooner the better- more chance to get it right!
What can I say, relapse takes a while to get your head round and Velcade was a difficult one to endure. I had 2 Velcade injections per week for 2 weeks then a week off, I also had cyclophosphamide and…[Read more]
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Dear Ali
Thanks, I had a fabulous time, I’ve been treated like a proper princess! Tea at the Ritz and all manner of treats. Best of all, I feel well and have actually made it this far. And I’m still at work!
How’s your mum getting on?
Love Helen
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Hi Rebecca
Ha ha ha ….well! I didn’t like being 60 I’ve opted to stay 48! Come to think of it I’ve never looked ill! In fact I’m apparently a picture of health ! I was told last week that I looked worse before my diagnosis than now, so who knows…. Steroids all round….
Love Helen
Helen replied to the topic Newcomer: Should I ask to be screened for MGUS/myeloma? in the forum General 10 years, 6 months ago
Hi Sara
Not everyone with light chain myeloma has kidney problems. I have it and have no bone or kidney damage and have had more problems with the drug effects than the disease so far.
Helen
Helen changed their profile picture 10 years, 6 months ago
Helen changed their profile picture 10 years, 6 months ago
Helen changed their profile picture 10 years, 6 months ago
Helen changed their profile picture 10 years, 6 months ago
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Dear Mavis
Thank you, it’s all very difficult isn’t it. I think we are still a long way off individual tailoring of treatment, due to the erratic differences between us all, but we must live in hope.
Hi Andy, you must be back now? Hope you managed to soak up a lot of that lovely Greek sunshine, I think I might have to book another holiday as soon…[Read more]
wendyduffield replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Hi Helen
I am so sorry to hear of your relapse, I haven’t been on the forum for ages (a combination of not liking the new format and my life just running at such a frenetic pace). Like you, I was devastated by my first relapse, you eventually get your head round it and now you are facing another one. I hope whatever treatment regime is decided…[Read more]
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Hi Andy and Vicki
Thanks, sorry I’ve taken so long to reply, I was waiting to see what happened after the dex…..and today’s appointment.
WELL,!!
I had another blood test the day before the dex started… These results were a bit better than the previous set! So may be a blip! Anyway I’ve had the 4 days dex.
So more bloods today,
NO more…[Read more]
Helen replied to the topic Plasmacytoma in the forum General 10 years, 6 months ago
Hi Ali
It is just a year since I started Velcade, similar to your mum. I was ok, and fit, so they hit it hard. However, it is tough and I found it very painful for about half of each cycle, as the treatment went on the pain in my feet worsened so they halved the dose. I now have some residual ache in my feet but have had several painkiller free…[Read more]
Helen replied to the topic Back on the roller coaster in the forum General 10 years, 6 months ago
Hi Rebecca
I think it is the right thing to distance yourself at times from all to do with myeloma, there is a danger that it becomes all consuming, but we do like to keep tabs on people on here and see how they are doing! So you have to keep popping in now and again. I’m afraid I’m just getting angrier and grumpier about the whole injustice of it…[Read more]
Helen changed their profile picture 10 years, 6 months ago
Helen changed their profile picture 10 years, 6 months ago
Helen changed their profile picture 10 years, 6 months ago