Hi all
I wonder how, if we do not yet have a mechanism or way of deciding what drug works best for which type of myeloma, there could be any other way than the one we have now?
I know that NICE’s ‘one size Fits all’ in the first instance with CDT until proved ineffective is unwieldy but as Andy has said, it suits some people and they can get…[Read more]

Hi San thanks these shingles certainly get around. Frank has had the rib pain for some months. Long before shingles. I asked our doctor if consultant had ordered MRI scan as she said she would but she hasn’t. Seeing her Wednesday so will investigate.

Jan do light chains alway increase with an attack of shingles? Franks consultant does not like…[Read more]

Hi Angela,

Our family has been covered via private health insurance through my husband’s employment for many years. We have successfully used this insurance for short term treatment such as my son’s sports injury and my husband’s cataract surgery. The treatment was far quicker than the NHS would have been able to provide, which helps when you…[Read more]

Hi Jean,

I still remember the burning and sharp pain associated with shingles when I suffered an outbreak of the virus all down the right hand side of my body a couple of years ago. Most of my right arm was covered in a mess of large red blistering, itchy patches. I was lucky in that the pain only lasted for around 6 weeks, but I struggled…[Read more]

Hi Helen

Glad you are eventually getting over the pain. I asked our doctor and he said the pain can last months. Frank has just got up and he said he “thinks” the pain is a bit easier. He says he is now suffering from “sleepy sickness”. He’s gone from 5 hours sleep a night (always been his sleep pattern) to nodding off a at the drop of a hat

Any…[Read more]

Dear Jean
I’m sorry to hear that Frank has shingles, I’m still suffering with the pain though all spots have gone now. I’ve had codeine, paracetamol and Amitriptyline, all the time and at maximum doses for about 2 months. I’ve weaned myself off all the codeine and some of the paracetamol but it’s very slow. As I’m now back at work too it’s a bit…[Read more]

Hi all

I contacted doctors and he checked for me re SCT and thyroid doctor app. The appointment for thyroid doctor was requested on 9 January. Doctor did tell me that doctor concerned had a long waiting list. I asked him to check the MRI request and was told there wasn’t one. He said he would phone hospital and find out

Thanks all
Jean x

It sounds a bit like a situation that has developed which is not in the best interest of patient or hospital !!!

Instead of possible making the situation a big issue,why not go to the patient service that is in the hospital PALS????
My understanding is you want the blood results that you are entitled to for your own peace of mind ????

Hi Everyone

I do not usually look at newcomers postings,mainly because after 3 years being a carer of someone with Myeloma,things have advanced so much concerning treatment,but just reading this post made my realise that the emotional side never changes,but I do think after going through the emotions of shock grief,plus usual problems,things do…[Read more]

Hi Terry and David

Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if…[Read more]

Hi Pete

Yep! He has it there as well. How long does it last. Doctor told him that once the bolsters break he will no longer be contagious. He seems a little brighter today. The ibrofrem seems to help him. The pharmacist today told him not to put any cream or lotion on as the applying of it could aggrivate the rash. I do feel helpless as there is…[Read more]

Hi Maureen

Last time we were at consultants she got an X-ray of his chest. No,point in going to our doctor he is dead slow and stop. We are seeing consultant today week so hope to get everything sorted. Thanks for your reply

Hope Ian is doing well

Jean x

Hi JoJo and Jane

Thanks for your replys. Frank was given acoclovir. The pain relief he was prescribed was not helping him. Our pharmacist advised him the take ibrofrem our son brought it to him tonight and it’s the first time he’s had some relief. Hr told me that this morning the pain was horrendous he thought his body was on fire. He seems to be…[Read more]

HELLO JEAN
I had shingles a couple of years ago it was the most painful thing I have had it was right across my back the doctor should have given him some aciclover not sure how to spell it I was given that but the best relief I had was putting organic cider vinegar on it this really dulled the pain smelt like a chip shop but it worked how are…[Read more]

Hi Terry

Well you have answered my question!!!!

Slim was on CDR,when he was prescribed RIVAROXABAN ,he only had it for 2 months,and 2 cycles each time not being able to complete the cycle because,of sepsis and very low blood readings,platelets and neuts hit rock bottom.( looking back an awful time ).
He had to stop chemo completely,and after 2…[Read more]

You can vary the Dex ,take half dose or even taper off it slowly. There are other things you can take in the steroid department if it just Dex that does not agree with you,and I am surprised this has not been suggested by consultant !!!

As for alcohol !!!! Well need I say more,odd wine or beer yes,spirits,never.Eve

Hi Terry

My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only…[Read more]

Hi Terry,

I  don’t know if this helps, but my husband is having prednisolone with Velcade and cyclophosphamide as he had severe psychotic side-effects when he was on Dex last year (for spinal cord compression, before myeloma diagnosis). He is on his 3 rd cycle now and there have been no serious side-effects. I don’t know whether another steroid…[Read more]

Hi Maureen

We will not know for some time if treatment is working,but in general is bloods and health are a lot better,plus he has just had a chest infection,but held his own with antibiotics ,so to me that is a measure of how his immune system is a lot better. His pain levels are better,you can tell just by his body movements,so I do think he is…[Read more]