Hi Mavis

It certainly is worrying when your myeloma levels start to increase over a short period, but you are definitely right in that there are now many more treatments available than since we were diagnosed and many more in development, which is so hopeful for the future. When you get the results of your CT scan, if possible see whether you…[Read more]

Hi Michael

I hope the dental hygienist goes OK tomorrow for you.

Many thanks for your kind wishes about coping with my new treatment. If you’d asked me yesterday then I’d have said very badly due to 24 hrs of harsh withdrawal symptoms from 40 mg of high dose steroids, which was quite a shock to my system after only experiencing 20 mg of…[Read more]

Hi Maureen and Michael

Mavis, you must be very relieved to know that a thorough check up of what’s happening beneath your ulcer has been carried out so quickly and efficiently by the NHS. Let’s hope a good plan of action will be drawn up for proper treatment to help you maintain the good fit and comfort of your dentures.

Reading through some of…[Read more]

Hello Mavis

It’s good to read that you have remained in remission since 2011. Hopefully your PPs will only rise very slowly and it will be sometime before you require further treatment. I had four cycles of CDT in 2010 followed by an SCT, but I relapsed in 2015 requiring 8 cycles of VCD with a second SCT in Sept 2016. My light chains have…[Read more]

Hi,

I had Plerixafor the evening prior to the first day of my second Stem Cell harvesting, as well as the following evening prior to day 2 of the harvesting. I experienced some really weird hallucinations during the night of the harvesting. I raised my concern with the nurses, but apparently they had not had any other patients experiencing…[Read more]

Hello Mavis
I wasn’t given thalidomide at the beginning as I went onto the myeloma 11 trial and was randomised to have revlimid – so thalidomide is new for me and is working very well – I’m now on my 9th cycle of it and my numbers are still going down. I’m hoping for a very long time on it! Though as you say – the thinning hair and perip…[Read more]

Hi Phil
Congratulations on 7 years – I too reached that milestone on 3rd February- it’s not all plain sailing but all the new drugs coming along make me feel very positive for us all.
Take care of yourself
Love Helen

Hi Michael
I’m really glad you are doing ok with Daratumumab, sadly I had to come off it after 3 months as my disease went wild and I’m now on thalidomide- which fortunately is working.
You are right to put your experience of it on here, it can be very helpful to know others have been there too.
Love Helen

Happy new year to you all, I’ve just been away for a few cold days in the Scottish Borders- very nice but too much eating and drinking!!
Maureen I hope Christmas for you and your family wasn’t too difficult- I can’t imagine what it is like to be alone for these occasions after so many years together. I’ve been thinking about you lots
Ma…[Read more]

Hi Sarah
Steroids such as dexamethasone and prednisone are frequently used to treat myeloma patients, either prescribed alone or in combination with other myeloma drugs. They reduce swelling and inflammation and have been shown to kill myeloma cells. However steroids can cause many serious side effects, which are related to the dose and duration…[Read more]

Hi Andy and Mavis
I hope you are both well at the minute – I’m not too bad – recovering from a chest infection again but other than that the CTD has now dropped my light chains down to 229 from 1265; all good.
I managed a trip to Crete in November – marvellous- weather was superb and there were no crowds, like you Andy, I had immunoglobulin b…[Read more]

Hello Kelly
It’s not often I come on to Myeloma UK, as I lost my husband over 3 years ago, but Myeloma as come into my life again ,as a friend has just lost her husband with Myeloma ,so I looked into the site.

First you have to know about a Myeloma, a doctor might only see it once in his life time,so GP seldom pick it up, usually it’s discovered…[Read more]

Hi Robert

I certainly know why you are not looking forward to your second SCT, but hopefully the process will provide you with a good period of remission. I found my second SCT in September 2016 far easier as regards side effects, together with a quicker recovery period afterwards.

I am sorry to hear your peripheral neuropathy is not improving…[Read more]

Hi Robert

I hope your peripheral neuropathy (PN) starts to reduce now that you have stopped Velcade and currently on Revlimid. My PN has certainly improved since my 8 cycles of VCD finished in September 2016, resulting in hardly any symptoms during the summer months of 2017. However my PN appears to be triggered when the weather is cold, where…[Read more]

Hi Maureen

A really worrying time for both of you. What were Ian’s light chains when he was originally diagnosed? I just wondered whether they were higher than 5000? I would certainly try to find out more about Ian’s genetic make-up of his myeloma in order to try to determine whether there is any available evidence on Daratumumbab or…[Read more]

Hi,
I would certainly discuss your change of reaction to Zometa with your consultant for their advice as to whether to continue with the treatment in its current format.

When I first received Zometa in 2010, I was hardly given any IV fluids prior or after Zometa which did contribute to certain side effects of dizziness and headache for a two…[Read more]

Hi Lizzie

There have been quite a few articles in the press over the summer months about how travel insurance companies are making it more difficult and costly for cancer patients to find suitable cover for their holidays, even when some cancer patients have been in remission for long periods.

I certainly had more difficultly this year finding…[Read more]

Hi Maureen
I’m saddened that your consultant is so negative- what’s wrong with trying to eke as much of out of life as possible- he should at least be offering the littlest rays of hope. I suppose he’s being pragmatic in that when the myeloma is aggressive it’s realistic to say that the drugs do not work as well or for as long so life is now more…[Read more]

Hi Pam
It’s nice to be hospital free for a bit – I went to France for a few days before my sct.
I’ve usually felt and looked the picture of health since I started down this road – and though I’ve had some terrifying infections I’ve recovered very well- if not quickly- it’s vital to keep checking your temperature.
I’d go for a donor transplant…[Read more]

Hi again Maureen- this is the American site so I don’t know if the drug company are able or likely to request extensions of trials outside the US – anyway asking doesn’t harm- after all ‘shy bairns get nowt’ as we say round here
Love Helen