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]

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 Helen and Mavis.

I’m doing okay thanks.

Helen I’m on a Panobinostat regime at the moment. I was on MUK 8, Ixazomid, but as usual with me it didn’t work. I’m finding Panobinostat, Velcade and Dex a bit challenging but it is keeping me stable at the moment. You can only have 16 cycles of it and unusually the cycles are only 3 weeks long. I…[Read more]

Hi Maureen, to say what happened was galling is an understatement. At least it’s over with and Ian is not in pain anymore.

I do hope you have a nice Christmas in London and that the New Year brings something good into your life.

Richard

Well, a little update, I had a visit to the hospital today and my wife came along, She’s brilliant at research whenever the Medics come out with something new and acts as a very good interpreter as well (German Hospital). She’s also very good at sniffing out Bullshit which I’ve never had from this hospital.

Anyway, we discussed various options…[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 Rebecca,
At least with Revlimid, we know that it will stop working at sometime, anyway I was bored with it, the neuropathy is just so boring and as for the stomach cramps, calf muscle cramps and the other side effects, I’ve had those and think I’m ready to try some new ones. Joking apart, I have an MRT at the end of next week and once the…[Read more]

Hi Rebecca, hope I can keep carrying on for a long time to come!

I find some of the posts both on here and on the Facebook Support page very sad. MM should not have entered EmmaJ’s life at 38 years age, thats not right. The same with many others who post on both sites, they are going through some tough old times.

I know its very scary but there…[Read more]

Emma, its not fair that someone so young should have to cope with MM. But age is on your side! You’ve read from Rebecca of her experiences.

I am a lot, lot older than you. In fact I had a second SCT at 72! 18 months down the line I am drug and treatment free, we travel, quite a bit, go to concerts, off to see Queen in London in December, and we…[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]