Hi Mervyn

If it wasn’t for the regular monitoring of my blood and urine at clinic appointments, then I wouldn’t know that I was relapsing. I feel absolutely fine. I’ve had bone pain and fatigue ever since my SCT, but the bone pain is controlled with pain patches and I’ve learnt to live with the fatigue by resting when necessary.

I have light…[Read more]

Hi Ian,
I was 53 when I had my SCT after four successful cycles of CDT. My consultant advised that I would be able to return to work after three months. I know some myeloma patients recover very quickly after their SCT, but I suffered with nausea, severe fatigue and bone pain. For the first six months, I had no energy and found even pottering…[Read more]

Hi Maureen

Terrific results for Ian. You both must both be so happy about the results. Enjoy your holiday in Ibiza.

All the best
Jan

Hi C

Thank you! If my previous post help you in any way,I am glad,it’s an awful situation,medically and with the present politics concerning Cancer drugs,they have no understanding of the mental anxiety that patients and family suffer.

We always tried to lock the myeloma away,in every sense of the word,Slims attitude was why worry about tomorrow…[Read more]

Thank you Helen
I have just been reading your thread about Andy,well who,s a naughty girl,!!!we all know paracetamol mask infections!!,never never take them until diagnosed,I cannot tell you how many times ambulance drivers wanted to give Slim them!!!!
I am sorry you have had to start treatment again,but so glad you are not pushing up the daisies…[Read more]

Thank you Eve for writing (now and in the past) and I really agree with what everyone says about how great it was that you wrote, as I was online a lot at the time you wrote a lot. I also meant to say at the time that I loved reading about your incredible adventures off to France on your own for the first time, you really brought it to life in…[Read more]

Hello,

I was on a trial that deferred SCT if you got a good response (called PADIMAC). I responded immediately to the treatment (which was velcade, dex, doxurubicin, oddly known as PAD). After 1 cycle all my results were totally normal – I’m light chain only. This was from being ISS stage 3, lots of bone damage, some kidney and liver damage,…[Read more]

Hooray! Wishing you both a long time with myeloma as far as possible in the background after dominating life for so long! Make hay while the sun shines, gather ye rosebuds while ye may and all that 🙂
Helen x

Hi Andy,

Thanks so much for taking the time to share this, it’s so important. I hope you get out very soon. Pneumonia and unexpected hospital stays can be miserable, and missing a holiday is just gutting. I am crossing my fingers that somehow you are able to do something else instead this year – Canary Islands?? Or a nice UK weekend away to make…[Read more]

Hi Jean,

Strange ,although we are Facebook friends,we keep Myeloma locked away ,its the way it should be!!!, I really enjoy the scrabble as well,I would take more games on with you,but will be heading for France soon!! But I do envy your cruises,it’s so nice to see you are making the most of your time,long may it last.

Thanks for the news on…[Read more]

Hi Eve

I also am on site very rarely but Was great to read your post. Enjoy our scrabble. Eve I’m sorry to have to tell you but JoJo passed away on 15 February. We kept in touch and her daughter Paula emailed Tom and myself to say she died of heart failure. She was such a lovely woman and I do miss our “chats”. This damn disease – and now the…[Read more]

Hi Andy

It’s good news to hear you are on the recovery after your pneumonia, which appears to take hold of us myeloma patients so quickly, especially when our immune systems are weak during treatment and sometimes after treatment. The UK weather in September is supposed to improve towards the end of this week. Hopefully you will be able to sit…[Read more]

Dear Vicki

I haven’t been on the site for some time, until I read the devastating newspaper articles at the weekend about myeloma drugs being axed from the cancer drug fund. I am really saddened to hear Colin lost his struggle with myeloma, especially as he battled and persevered so hard over the last few months. My thoughts, prayers and…[Read more]

Hi Jean,

I hope you both enjoyed your cruise holiday. So sorry to hear Mike has ended up in hospital with a chest infection. Presumably he might have caught a virus from a fellow passenger on the cruise or the return airplane? But it’s good news that he is recovering well after his time in hospital. Perhaps with his immune system being low, the…[Read more]

Hi Helen

I know how you feel not being able to tackle those tasks around the house and garden, which were easy to undertake prior to myeloma. Last week,wWe purchased a branch cutter for our tree in the back garden. I didn’t even have the strength to raise the cutter in the air in order for it to reach the branch. Hubby now has to deal with all…[Read more]

I was so emotionally upset this morning when I read the newspaper articles about withdrawal of a number of effective drugs from the cancer fund for blood cancer patients. At present, blood cancer is the UK’s third biggest killer, but unfortunately with little public awareness as compared with other cancers such as breast and prostrate.

Whilst…[Read more]

Hi Richard
Nice to know you are still here!!,any one know how David is?????? Or Jo!!!!.

Just for the record Tom is just starting his second SCT, .
He has grabbed life by the throat,and making the most of it,holidays family and his lovely wife living life to the full. Tom has one thing on his mind on ward and upward!!!!!!

It’s a pity Jet and…[Read more]

Thank you

I do hope your journey,s are long and the best you can make of them,Liz it’s best to escape the roller coaster as we all know it’s going to pass your way again,and Myeloma should not become normality,but in the end it’s the only thing you know.

Thank you both again,Stanley,Slim was always proud of me, but he is more likely to come back…[Read more]

Hi Rebecca

I have just looked into your profile as no picture! And see how much you are now helping other people, I know I was too blunt at times! But you seemed to be able to get the message across very well, this is the way it should be,helping each other on this journey,then leaving that road and going on a different one.

It makes all of us…[Read more]

Vicky
It goes without saying how sorry I am to hear your news.
i know the auto pilots switch is on for you now,it takes awhile to realise how exhausted you have become,it’s very hard to cry and mourn.
Just try to cope the best way you can,these last few years you have held everything together,being strong for everyone,I can only say,be proud of…[Read more]