Hi Vicki,

I have not been posting much as we are still watching and waiting but Phil’s relapse has now been happening since August 2013 and new treatment is now impenitent. PP up to 10 but fatigue is getting worse and bone pain is increasing

Hi Sue,

Tom is doing well, onwards and upwards is his saying and I am sure he will pop in with an update at some point.

Megan

Vikki last of my post went missing. Rabbiting on too much. Hope things go week for Colin and Maureen hope thing also go well for Ian. I always thi k of Colin, Ian and Frank as SCT buddies

Keep in touch
Love Jean x

Hi Vikki

Has Colin started the treatment yet? Frank got lots of cells but consultant put them all back as she said that he’s too old to have a second transplant. I still think that consultant went ahead with transplant – PP’s had been dropping for months and as his next birthday would be 70 – the cut off point – she went ahead.

Vikki Frank…[Read more]

Hi Vicki

Like yourself I’m not often on the forum. Looked in a few weeks ago and saw Maureen’s post and also wondered how Colin was doing. I’m sorry to hear that he’s having a hard time. Those bloody shingles are awful. Frank had them a few months ago and Dr put him on pregablim. Has Colin been taking them. Frank can’t get off them as he has…[Read more]

Hi Fuzz

Well you are showing some signs,that could be a number of diseases,a simple blood and urine test should show the possibility of Myeloma.

Doctors only come across Myeloma once in a life time as there are only 3000 cases a year in GB.

I would make a note of your weight and height,plus how many times you feel sick,your kidney functions…[Read more]

Hi Vicki

Nice to hear from you, I think you are doing the best thing not coming on here to much when you are in remission ,best to lock the Myeloma away in a cupboard mentally ,and enjoy life as much as you can,because we all know it finds you in the end,so enjoy today.

I have good and bad days,try to keep myself busy and out of the house,after…[Read more]

I think Alice reflects what is likely to happen in the short term but if you have any of those criteria you may wish to have more regular checks which might include an mri or other imaging tests.
There is a trial on going; assessing lenolidamide by itself in the above situation(in the US needless to say,) the outcome of which is again likely to…[Read more]

Hi Sharron,

I am so glad to read that the lower dose is more manageable and that you are feeling more positive. I hope the side effects continue to diminish as you start cycle four.

Megan

Hi Maureen,

You and Ian are in my thoughts. I hope you do not have to wait too much longer for the results and when you do get them, if a change of treatment is needed, I hope you find a way forward that works for Ian. A second opinion is a good idea even if it is just to hear another viewpoint.

Megan

Hi Sue

I email the nurses – Ellen or Maggie. Email address for both is askthenurse@myeloma.org.uk. I email as then I have a written response that I can refer back to. They are excellent and reply quite quickly

Jean

Hi Nick

Sorry to hear you have had to join this site. Welcome from me. I have found it invaluable over the past four years.

It is interesting how different all our MM journeys are. I was diagnosed, following completely debilitating back pain, with a plasmacytoma encircling one of my vertebra. I had to have it surgically removed and rods put…[Read more]

hi anthony
Free light chain assays are expensive but are superior to urine bence jones analysis and have a potential role in assesssing “whats going on “at all stages and types of myeloma . A superior complete response(sCR) to treatment includes a normal fee light chain result/ratio.
Resistance i suspect comes from lab and clinicians have to…[Read more]

Hi Maj

Thinking of you today. Do hope you have a helpful hospital visit. I believe your husband is young. I guess that’s why they are suggesting SCT. However it is his decision.

Hope your husband was brave and challenged the Consultant, and asked all the questions he wanted to. I always write mine down before I go, else I forget…[Read more]

Hi Maureen.

That’s great news. Do hope Ian’s mobility also continues to improve.

Best wishes to you both.

Mavis

Hi Alan

How I sympathise with you. I remember well the horrible taste of food!

I am surprised there is no help seeing you are on a Trial. Have they given you phone Nos. to contact? If they have do use them. I often wonder what it is about Myloma and why we don’t seem to get the MacMillan Nurse care that other cancers do. We have a…[Read more]

Hi Maijic 30

Reading your husbands history,he has had thalidomide ,then Velcade then pomilidomyde has had his STem cells harvested,then Polidimide and because he has an agressive Cancer they are recommending he has DT pace,and in between this he has had pneumonia!!!!! Plus he has had compression on his spine,hence radiotherapy.

He has age on…[Read more]

Hi Maureen,

That is wonderful news.

Megan