Hi Vicky,

I am so sad to read about Colin’s lack of response to his treatment. It’s the news that we all worry about receiving during our myeloma struggles. You must be so exhausted and stressed with the range of emotions you are both experiencing at the moment. Hold onto your hope that Colin will be able to fight off the spikes in his…[Read more]

Dear Vikki
It’s the words you never wanted to hear and I’d like to just reach out and give you both a hug. There is nothing else I can say, it is the news we all dread. I hope Colin can get home soon, so you can at least get to grips with this bombshell in the comfort of home.
With much love Helen

Hi jan
That’s good results for your light chains, long may it last. Mine are down at 100 and have been stable for 3 months now on the pomalidomide.
Is your kitchen finished now?
There were some new drugs mentioned at the info day which are showing promising results but I think that there will be trials here for several years before they are…[Read more]

Dear Jeffrey
Yes I found unpredictable duvet days are are the order of the day, can’t do anything about them..just sleep!
Love Helen

Hi Vicki
I’m ok, I can’t decide how I realy feel..I look well! But I’m not as good as before, less sociable, more grumpy- if that was possible – I’m very uncomfortable a lot of the time, not enough to increase the painkillers but miserable. My bloods today were ok so I’ve started cycle 9 of pomalidomide, which I will be on until it stops…[Read more]

Hi Vikki
As already said- Melphalan is very powerful, hopefully the normal cells will come back, I had 4 months of GCSF when I started pomalidomide as it knocked out my bone marrow and mm and immune system… Hence all the infections …. I think I’m ok now, but then , what do I know.
Hoping that Colin and the medics get it all right, chin up and…[Read more]

Hi Helen

Thankfully Pomalidomide appears to be working well for you, which is excellent news. At least you are able to spend time in your holiday home and able to enjoy yourself during the warmer summer months. Are your light chains decreasing whilst you are on this cycle of drugs? Did you learn anything about future treatments during your…[Read more]

Hi andy Mavis and all, good to see you at the info day andy, and great to see you are at cycle 19, I’m on 8 now. And no Allo graft in sight for me either, does this just make us very special people??
Re the info day, it was an interesting day again, even though I’ve been to several now I still learn a lot from them.
We are spending a lot of time…[Read more]

Hi Maureen
Hope Ian is back home again soon, he does seem to have an awfully bumpy ride with this disease, fingers crossed you can have an event free few weeks ro recover.
Love helen

Hi Jan and Andy
Just thought I’d update this post a bit-
I’m now on cycle 8 of pomalidomide and its still working well and I’m still feeling well, the colonoscopy was normal thankfully- Just checking I don’t have amyloidosis too!
The search for an Allo donor hasn’t found me a match, none of my sisters was better than 50% and there is one 75%…[Read more]

Hi,

So sorry to hear your mom is not feeling well, especially after she responded so well to the original treatment. I think you need to talk through your concerns with the nurses here on the myeloma UK discussion site. They will be able to advise you about issues to discuss with your Mom’s GP and consultant.

Regards

Jan

Hi Maureen
Hope all goes well for Ian over the next few weeks, just keep smiling and try not to worry too much.
You will need to look after yourself too, it’s a difficult treatment to watch.
Love Helen

That’s really good news. Ian has been through a long journey to reach SCT. I hope all goes well.
Regards
Jan

Hi jan
You seem to be having a very stressful time, I found the time when my dad was in hospital last year very difficult as I didn’t want to expose myself to all the various bugs.. I was also relapsing so that made it even more stressful, I hope that your numbers drop now and that you are soon over the colds and he is now out. I shall keep my…[Read more]

Hi,

From experience, the test can take up to two weeks for the results to be returned to your consultant depending on where the results are analysed in the UK. Usually, both a blood and a urine sample will be tested during the diagnosis of multiple myeloma because some proteins, such as the Bence Jones proteins (free light chains), may not show…[Read more]

Hi Yvonne

My husband was diagnosed in 2006. He smouldered until 2012 and had SCT. When he was diaganosed I contacted Myeloma UK and they sent me a diary. Over the 9 years it has been invaluable to us. It has different areas – what treatment in – what questions to ask etc. the part I use most is blood results page. It tell you what the normal…[Read more]

Hi,

Sorry to here about your Dad’s continuing back pain. When three of my vertebrae collapsed in 2010 whilst sleeping in bed, I couldn’t move at all for 10 days. I lay on my back in bed for some relief, but managed to gain bed sores on both heels, together with losing a fair amount of skin on the bottom of my feet from the pressure of remaining…[Read more]

Hi Tracey

You need to find out what is causing your husband’s leg pain, therefore I would suggest you certainly contact your husband’s consultant or the hospital team dealing with your husband’s treatment to talk through your concerns. Another consideration is to speak to the myeloma nurses here on this site about your husband’s leg pain. If you…[Read more]

Hi Richard

Sorry to hear about you having to start a new treatment, especially with you experiencing so many negative side effects from the drugs. It does bring back vivid memories of my experiences with 4 cycles of CDT. My concentration levels were so poor. I couldn’t even fill out an easy passport renewal document without making mistake after…[Read more]

Hi Helen

It’s good to hear your news that pomalidomide is still working for you and yes, I totally agree with your comments that the longer you can delay treatment then the more chance there might be of new drugs/treatment being available in the future. Although having the flu for five weeks must have been exhausting and difficult for you,…[Read more]