Hi Maureen

You both must have been so frustrated when Ian was not allowed cyclophosphamide with his Velcade drug regime. From the last four Myeloma UK Information days which I have attended, one of the main messages from the consultants always appears to be that a mixture of three drugs is better than two drugs when treating myeloma patients.…[Read more]

Hi Jane

You must have been so relieved to have achieved two good lengthy periods of remission following your two SCTs. Hopefully your light chains might only slowly increase after your last treatment, which would give you more years of remission. Had you previously used Velcade as part of your SCT treatment? What happened to your light chain…[Read more]

Hi Maureen

It’s such a good feeling when you are able to go away and relax on holiday following successful treatment. I’m glad you both enjoyed yourselves in Ibiza, especially with Ian managing to spend some time swimming. Since my vertebrae collapsed, I find it impossible to sleep on my front or swim breast stroke/front crawl. Like Ian, I…[Read more]

Hi,

It is a difficult decision of when to restart treatment, because you want to maintain your present quality of life, but equally you don’t want the myeloma to damage your bones or kidneys. Presumably your consultant wants to take a bone marrow test and scans to see what is the level of activity in your bone marrow and to detect any bone…[Read more]

Hello Helen

I really appreciate your heartfelt good wishes, especially as you fully understand the variety of emotions and side effects which you can experience when approaching and going through relapse treatments. It’s good to read your news that pomalidomide is working for you. Long may this continue.

Approaching a new drug regime is…[Read more]

Hi Helen

Unfortunately last week’s light chain results increased by a significant amount and I was called back into clinic. I start treatment as soon as the hospital can organise the start of my twice weekly velcade injections. Came home this evening from clinic with a big bag of drugs, which certainly brings back not so fond memories of the…[Read more]

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 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,

I’ve also read quite a lot of information about cancer loving refined sugar. I think you are absolutely correct to see whether reducing refined sugar from your diet can reduce your myeloma levels. I hope your myeloma continues to show improvement.

Have you had a chance to read the interesting discussion on the forum section of the…[Read more]

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]