Hi Vicki

Ian is still in hospital but responding well to second lot of antibiotics so should be home by the weekend. He is worried about his neutrophils as they are coming down, now 1.2 from 4.2 but his crp has come down. They haven’t found the source of infection yet but he had an MRI scan on his back today. I don’t think it is in his back,…[Read more]

Hi Vicki

Ian is feeling better this morning. I phoned The Beatson in Glasgow on Monday,where he had his transplant and passed on my concerns about Ian. FVRH had put him on oral antibiotics and he had rigors all night as he had taken his quota of paracetamol. Yesterday he was changed to a stronger iv antibiotics which are now working. I think…[Read more]

Hi Vicki

Ian is still in hospital as he is still experiencing rigors and high temperatures but now on oral antibiotics and paracetamol. It is quite worrying. I only IraniAn will have a good remission.

I read your post that Colin is on melphalan and dex. Is he having to stay in hospital for this treatment? Ian would not have been referred for…[Read more]

Ian had a high temperature (39.7) yesterday so he is back in hospital. He is responding to iv antibiotics and should be home either tomorrow or Tuesday. It could have been a urine infection but doctor not sure yet, his temperature is back to normal.

How are you Richard, did you pass your exam?

Maureen

Hi robbojnn,

I like you have been having endless problems with my teeth and gums since my sct, though you sound to have worse, I know I am on my way, they get worse by the day. I too get a bit of esa, but be careful what box you tick, I ticked the box (it is very confusing), my dentist gave me a deep cllean and waivered (sp) the cost (approx…[Read more]

Hi Tony,
Sorry bit late replying, but just on a catch up. Reading your post really took me back to the shock of diagnosis of something I had never heard of, at first I thought skin cancer!!
Looking at the date you posted, things may have moved along, so I will finish.
Wishing your wife and your family the very best, at the worst of times. This…[Read more]

Hi all,

Wow Dorothy, 11 years 😀! Good luck for the 25th. Are they your own stems? Have they been in storage? Hope I am not being too nosey, just that I have some in storage for my next SCT, at my next relapse. Best wishes.

Just off to pile some coconut oil on, I definitely think there is some sort of connection with the MM and nail.

Regards to…[Read more]

Hi Andy,

Well jel!1

Enjoy your hols, and have a beer or 2 for me (hic)

Cheers

Karen 🙂

David,

Glad to be of help, I agree, it really does help discussing with other MM sufferers.

I often wonder that, was it because it was not as bad as first thought, or there was not enough benefit to be gained to make it worth it. I am putting it on my list of questions for my consultant, she will have had a report off him, I see her next…[Read more]

ps, sorry David, I sent without checking spelling etc!

Karen

Hi David,

Thanks for your reply.

About my Vertbroplasty, it went well, though the surgeon/consultant, said it was a challenge! I admit to being very nervous, but I was knocked out, thankfully as lying on my tummy was very uncomfatable. I came round bout 3 hours later, they gave me lunch and painkillers, though I do not remember any pain. I had…[Read more]

Hi David,

Thanks for your best wishes, just re read my post, i was not very clear, it took 4 years to be diagnosed, which was nearly 3 years ago, I am on my first relapse after various treatmeats, Thalidomide, SCT, Vertbroplasty (for crushed vertabrae, I lost 3 inches in height), But they said I will always have pain, hence the Zomorph.…[Read more]

Hi Maureen and Ian,
I have not been on for a while, glad to hear Ian has had SCT at last.
Your description of him takes me back, he just has to rest and eat when he can, but not panic at weight, I sent most food away first 10 days( approx), it will come back. I had a ‘mysterious infection’ which cleared when they removed my Hickman line.

I was…[Read more]

Hi Anna and David, sorry to but in, I have not been on much recently, I find this site friendly and useful, but my myeloma came out of the cupboard recently, first relapses after SCT, so a bit shocked as greedy me expected longer

I hope you are both doing as well as can be expected.

Just an observation, an awful lot of people end up diagnosed…[Read more]

Hi Janet and all,
I match your description too, I am on Zometta bone strengthner, and zomorph, I am also on cycle 3 of velcade ( my first relapse after SCT). My feet and hands are very dry too. Does anyone have vertical ridges on hand fingernails? Mine started on a couple of nails pre diagnosis.

Best wishes

karen 🐱

Ian is now nutropenic so hopefully he will not get any infections. He is a little tired and nauseous but otherwise doing well. He has lost 2 kilos but ate like a horse before he went into hospital so he needed to loose some weight. He has wi fi , kindle and ipod but still bored.
Hopefully he will get out around day all being well.

Maureen

Hi Janet, ( and all),

I had SCT in January 2013, it has definitely affected my memory and concentration, I used to read a lot, now it’s a struggle. I may try that magazine with short stories. I suppose being on zomorph will not help, I have a lot of bone pain, because of late diagnosis, so it’s probably a mix of all of the above.

Good luck and…[Read more]

Hi Joe
I am a bit late saying this, but glad to hear your tests went okay, fingers crossed for you.
I am treated at Leicester Royal also. I have had 3 bone marrow test, I had a local and gas and air, the fist two were not pleasant but bearable. The most recent test was horrendous, worse than giving birth! And when nurse said that she did not get…[Read more]