Dear San, I am so sorry to hear about your loss, during the last few weeks in Hospital, I had no internet access. I can’t add any more to what’s been said but I do hope you are coping OK. While her struggle is over there are plenty here who are fighting on and some may need a bit of your mother’s determination. I am sure she was ready to go in her…[Read more]

Hi everyone,

They let me out early on payroll yesterday. The Nurses (wardens) were really good whilst I was in solitary and for good behaviour plus my cell count improving enough they let me out. As everyone says, it is not easy. Carol. I had 5 days of vomiting, upto 5 times a day, 2 days with a bit of Diarrhea and then the temp spike upto 39.4.…[Read more]

Hi Carol

Frank has never had radiotherapy. She mentioned thyroid and I can remember her saying “none of my patients have ever had to have it removed “. Really don’t know what that means. I have some questions for her when I see her on Wednesday.

Carol I have been following your SCT journey and as you know things will get better. There is light…[Read more]

Hi David

Revilimid is known to cause DVT ,it will be your consultants approach to it,if you stay on it or not.When Slim was on the Revilimid he was on a preventive does of Claxane 40m but this still did not prevent an artery blockage from hip to knee although he had low platelets?????,

There is a tablet called RIVAROXABAN that does the same job…[Read more]

Hi Vikki

Longg time no hear. So glad to hear that Colin is doing well. I have to say This past week is the best Frank has been since transplant last March. His form is good although consultant says there is something wrong with thyroid! she’s referring to some other consultant. His potassium is low as is vitamin D. Cannot take medication as it…[Read more]

Hi Grega

I know GCFS injections boost white cells in the blood,if you contact Ellen or Maggi on the free number above they can explain. Eve

Hi Sarah

This is a very difficult decision to make and takes a massive lot of thinking. My husband was diagnosed in 2006 with smouldering myeloma. I taught at the local university and loved my job. Frank was smouldering and although, sounds funny, was healthy. He didn’t need me around all the time. But I couldn’t concentrate at work, he was…[Read more]

Hi Andy

Well done Steph ,I do not know if you keep a BP gauge at home ,but I find this invaluable ,Slim never hits a high temperature ,but his blood pressure goes down,and he is not confused,but there is something not right about him,I have learned this is a prelude to bloods not being right plus,his temperature spikes very quickly,I am talking…[Read more]

Morning Harmony
Hey you have seen my post am not easily offended nor easily upset, a prayer or three is good I am getting them from all faiths to be fair I have brothers that are Catholics and Protestants and one that is a Mormon so I have all bases covered like us all we need more he he onwards and upwards is a great ending to the post like all…[Read more]

Morning Andy

Yes as you know I stalk you on face book and at times on twitter (don’t use that one much) and I am pleased you are sorted this darn Mm keeps throwing unknown and unwanted infection at folk that have other things to be getting on with, those infections really should be having a word lol.

Stay well and yes everyday is that gift, we…[Read more]

Hi Elaine
I’ll look out for Bathams next time I’m shopping! Who am I kidding shopping lol. Though I will keep my eyes peeled for it and try it.
I’ve just had a stay in hospital and I’ve been taken off Pomalidomide till I recover from whatever was ailing me. I only had 3 of the little devils to take to finish my first cycle but a temperature 38.6…[Read more]

Welcome to the horrible world of myeloma Dusk.
As someone who has not been on “great” myeloma journey I’m going to through my thoughts in the ring.
First at diagnosis aged 53 I was told myeloma is a very treatable but incurable disease. I was started on the usual CDT with the view of SCT a few months later.
Now to cut a longish story short I’m…[Read more]

Double post again

Hi all

Had my 2nd Velcade injection today and my Dex this morning, no bloods today but I got my bloods wrote down today so take a look and let me know what it means lol

20/01/14
HB 13.4
WBC 4.9
Plts 2.58
Neuts 2.58

27/01/14

Hb 12.5
WBC 4.2
Plts 237
Neuts 2.47

Now I ain’t sure if decimal point is in the correct place lol.

Tom onwards and upwards x

Hi Dave

My husband (70 last April) renewed his licence and he said that “if you suffer from a condition that precludes you from driving …….” Myeloma does not fall into that category. He had no problem. He said thT it so Lu for 3 years

Best wishe
Jean

Hi Sarah

Yes you are my “posh” stalker lol. Ye I know I can do it it’s just giving me an iccle bit of a curve to be fair and we all need curves lol.

Love iccle ole me onwards and upwards xxx

Ps tell the Old Boy well done and no wrinkles or creases in the clothes lol xx

Hi Peter

I try to look for positive than negative ,We have all been were Dusk is angry and confused,I think your story Peter is a an excellent example,over 10 years,not great remissions and bone damage and you are still here.

Information and hope is what this forum is about,but there also has to be space for people who need to air there…[Read more]

Hi Carol
Please try not to worry I don’t believe I was ever in remission. I suffered side effect from the start and I told my consultant last week about this as I never felt well. Also I have no faith in him whatsoever this is the main reason for me going to the Christie centre. I just hope & pray that this time around they get it right. Good luck…[Read more]