Hi Lolly

The combination of drugs is certainly working for Steve. I suspect his cold sensations and voice changes are all part of the many side effects which we can experience from the cocktail of cancer drugs in our bodies. Because maintenance drugs are not yet approval as regular treatment for myeloma in the UK, perhaps if you read through some…[Read more]

Hi Mervyn

You sound like you are coping well with the treatment. I wouldn’t worry too much about your appetite, because eventually it will return once your body recovers. I couldn’t eat any food for ten days whilst in hospital following my SCT due to constant nausea and sickness even with three different types of anti-sickness drugs. I slept…[Read more]

Hi Helen

Good news about your son completing his final recital for his degree. I hope he manages to achieve a good result and find work which he both enjoys as well as pays his bills. Will he be staying with you at home? You will certainly have your hands full trying to scale down your belongings and items before you move into a smaller…[Read more]

Hi Val,

As you say, it’s far better the medics found Peter’s myeloma readings before his SCT. He is in the right place to receive more chemo and to be carefully monitored in hospital throughout the process. Dealing with the ups and downs of such news is so stressful and worrying for both of you. As Maureen suggests, please see whether you can…[Read more]

Hi Lolly

So pleased to read Steve is still in remission and long may this continue. What drugs is he currently taking as part of the trial? What parts of his body does he feel cold? Does he get the feeling during the warm or cold weather, or throughout the year?

Although the readings for my body temperature are quite normal, I feel my…[Read more]

Hi Andy

That’s great news and such a relief for you. Long may the medication continue to keep your myeloma in remission.

Jan x

Dear all

Thanks so much for your kind words and encouragement. Colin is still very weak but I think that part of that is the emotional stress all this brings. He is eating well though which is good.

One piece of good news. We got married yesterday after 17 years together. In 4 days our friends, family and our local vicar ensured we were able to…[Read more]

Hi all

Thanks for your good wishes. It just seems to go from bad to worse. Last Wednesday they took the pic line out. Because Colin’s temperatures were up and down the consultant told Colin, on his own that he had weeks not months to live. We were staggered and still are. I brought Colin home with a bag full of drugs and a foreboding that our…[Read more]

Hi Helen

So pleased to hear your results are ok to enable you to continue with your treatment and enjoy your holiday home.

Our kitchen is almost complete, but getting up early for the tradespeople and being on constant alert to answer their queries has taken me a few months to recover my energy levels. We did think about extending the back of…[Read more]

Hi Vicky,

I am so sad to read about Colin’s lack of response to his treatment. It’s the news that we all worry about receiving during our myeloma struggles. You must be so exhausted and stressed with the range of emotions you are both experiencing at the moment. Hold onto your hope that Colin will be able to fight off the spikes in his…[Read more]

Dear All

Can I just say thanks so much for your kind words and thoughts. It is good to know that there are so many people thinking of us. Its an awful situation to be in. There has been no change in the bloods and just lots of transfusions of platelets and bloods. We are both still hopeful but as each day passes and with more temperatures each…[Read more]

Dear All

The worst seems to have happened. Colin had a bone marrow assessment on Tuesday night as his immune system still wasn’t doing anything. It revealed that his bone marrow was empty of everything good- leaving behind some myeloma cells. Effectively the treatment hasn’t worked. Without the hope of his bone marrow recovering so they could try…[Read more]

Hi Helen and Maureen

Thank you Maureen. I hope that Ians bloods improve soon. Is he well in himself? Sometimes its a slow burn isn’t it. Apparently blood cancers are very complicated (I guess they all are!) but I so hope that Ian will perk up soon and theres a long long remission.

Helen thank you so much for this post, You really boosted me up.…[Read more]

Hi Jeffrey

My colin is the same. He will sleep for England and then will perk up about 9 at night when I am whacked!!. I think tiredness is a standard of this condition plus the side effects of the meds.

Wishing you well

Vicki

Hi there

I don’t have any experience of more elderly diagnosis, but just wanted to drop you a kine to wish you well. I do know of others not in my family, that are pensioners and been diagnosed. They are on maintenance treatment and doing very well- I do hope you Mum will be well. Just take each day as it comes. I think that applies to all…[Read more]

Hi there

my colin was delayed twice. We didn’t realise there could be a delay and it was a real blow and hard to come to terms with as we had psyched ourselves up for what was to come. I do sympathise with you- it was hard. But on a positive note you have got yourself into a position to have an SCT so thats great. Wishing you all the very best…[Read more]

Hi Maureen

Thanks for your message. I haven’t got the hang of doing messages so I thought I would post here. Firstly I did get to the wedding- which was lovely- but very odd going without colin. I had very mised feelings about going but didnt want to let them down. Colin was fine with it.

Colin is still in hospital. Last week was horrible- he…[Read more]

Maureen

So very pleased to hear that. Hope Ian continues to make a good and full recovery and remission.

I am so worried about Colin. He has been in hospital since last Friday. He has had the melphalan but it’s knocked his bone marrow. Despite gcsfs he’s still showing an immune system of 0.00. Worse than that he has a temperature of 38.1 and has…[Read more]

Hi Helen

Thankfully Pomalidomide appears to be working well for you, which is excellent news. At least you are able to spend time in your holiday home and able to enjoy yourself during the warmer summer months. Are your light chains decreasing whilst you are on this cycle of drugs? Did you learn anything about future treatments during your…[Read more]