Hi Helen.

I find it hard to fill my day. Somethings I can only do for short periods of time due to my back problems. I get bored sometimes though at the end of the day I wonder how it passed so fast with me achieving so little.

When the prof. suggested the Allo route it seemed like it was the final roll of the dice to us. I know you had a bad…[Read more]

Hi Helen.

Tuesday is my DEX night too though sometimes I do get to sleep.

I’ve found Pomalidomide to be kind to me though I guess everything is relative so I’ll quantify it a bit. I’ve found Pomalidomide to be a lot kinder to me than Revlamid, Cyclophosomide and Dex.

I have just started cycle fifteen of Pomalidomide, Gideon Osborne must love…[Read more]

Hi Helen.

Flights to Greece are booked. Middle of May all being well.

I’m off to read your post now so I will keep my questions and observations for there.

Every day is a gift.

Andy xx

Hi All.

Guess I got a bit over confident lol. Last week spent 3 nights in hospital with a high temperature due to an infection somewhere. I had a cold and a cough luckily it didn’t go onto my chest. Anyway I’m home again feeling ok still got a few more days on oral antibiotics. Guess I should stay away from ill people or people in general! Nah…[Read more]

Hi Susie.

Don’t get hung up on the the numbers too much it can spoil what you have.

PPs can still drop after treatment stops. PPs are a measure of myeloma activity but must be taken with the rest of your blood results. You will be still monitored as you need blood tests prior to your Zometa infusions.

SCTs are offered to patients who are fit…[Read more]

Hi Vicki and Colin.

Sorry I’m a bit slow with my response but I had a little holiday curtesy of the NHS! so had no wifi and my phone reception was totally rubbish.

I have been told that Bendamustine could be my next drug of choice when Pomalidomide starts to fail. Although it’s an old drug, I was told it’s derived from mustard gas!, it’s new to…[Read more]

Hi Noel.

I had the same dilemma in October 2012. I was told at the time an Allo was my only way forward, only chance really because none of the treatments worked well enough for an autosct and my marrow was that hammered by the drugs they wouldn’t produce enough stem cells. I was told all the stats 20% mortality rate etc etc but said I’d go for…[Read more]

Hi Graeme.

I second Maureens suggestion. We’ve been using nowicantravel.com for the last couple of years and found them very good. We only travel to Greece for a week at a time and pay less than £70 for both of per trip. We always deal wth them over the phone. I’m on treatment all the time and have been since diagnosis in oct 2011 and I’ve never…[Read more]

Hi Tracey

I’m not on the site much but came across your post. My husband was diagnosed September 2006. I went to pieces .- I cried most of the time but I was referred to a therapist. It took time but I eventually it helped me. Frank had a STC transplant in March 2013. It’s not been easy but he is in remission (thank God) and we try to live each…[Read more]

Hi

I’m sorry to hear that your husband has been diagnosed with myeloma and has been suffering pain in his kidneys, ankles and feet. However, now that he is being monitored by a myeloma consultant, he will have his blood and urine regularly tested to determine whether he has any causes of concern such as raised calcium levels, kidney problems,…[Read more]

For me, the question wasn’t so much about how soon I could travel but about how quickly my T4 cells recovered post SCT. Apparently. I’m not sure how it works but the T4 cells I believe are the ones that fight a specific type of infection. Before they were happy for me to do anything I had to have a minimum of 200 T4 cells per whatever measurement…[Read more]

Hi.

Welcome to the forum.

I’ve not come across Lupus or Cryoglobulins on here before. So I did a little research and found out about Lupus here – http://www.lupusuk.org.uk and saw some of the same drugs are used in it’s treatment as are used in treating myeloma. When I read up on Cryoglobulins I noticed Multiple Myeloma was mentioned. Like I…[Read more]

Hi.

Welcome to the forum. There’s a lot that will be taken into account by the medics as to how they manage your dads treatment if they do treat him at all. They have a set criteria they work to and if your dad doesn’t fall into this category they will just monitor him. However if there is a need for treatment then your dads current fitness and…[Read more]

Hi Robert

I think it’s really good that your vitamin B levels are being monitored. I don’t think I’ve been told mine or my other vitamin levels such as vitamin D. I asked whether a B12 supplement would help boost my consistently low immunity levels, but didn’t get much of a response. I now take a multi B supplement on a daily basis which…[Read more]

Hi all – thanks for your good wishes..

Linda – lucky, myeloma and me don’t seem to happen together in the same sentence let’s hope that changes.

Susie – it’s taken a while to get where I am at the moment. I only hope that turn doesn’t turn back on itself too soon.

Finn – I like your theory. If I do get to SCT I will try and prove it.

Maureen -…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Val

It’s such a hard question to answer, because it all depends on how your husband reacts to his ongoing chemotherapy, whether he needs to change drugs, whether he will be going through a stem cell transplant and whether he has any infections/colds which will all affect his recovery period. It really does vary tremendously from patient to…[Read more]

Hi Andy

That’s wonderful news for you Andy. You must be so pleased to see your myeloma levels reduce to their lowest levels since 2011. Is this usual with Pomalidomide, i.e. does it take a long period to show results and can you expect your levels to drop even further?

Kind regards
Jan

Hi,

When I was diagnosed with myeloma in 2010, my kids were aged 17 and 19. Both were taking their mock exams, so we were concerned about how the news would affect their studies and their lives. Being a bit older than your children, they did ask a number of questions and although you try to be honest, upbeat and positive, you forget they pick…[Read more]

Myeloma UK produces a superb book for smnall children that explains about MM and how it affects the body. It’s done as a narrative from a small girl who’s father has MM. Suggest you have a look on the website.