[LollyParticipant]

Hi everyone
My husband Steve got diagnosed in march 2013

After treatment and SCT he is in remission and currently on a drug trial

What I like to ask you all is , Steve often says he has a sensation of coldness coming from within his body

Does anyone have these symptoms ?

We have spoken to consultant but he did not seem to know what Steve was talking about …

Thanks lolly

[janwParticipant]

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 internal thermostat has completely broken since being diagnosed with myeloma. A few years prior to being diagnosed, I suffered very heavy hot flushes. Although, these flushes disappeared when going though SCT, I have noticed since my light chains have been steadily increasing then so have my hot flushes especially during the evening. But my feet have remained cold since chemo. I have to wear bed socks for 10 months of the year for most of the day and night. My upper thighs are also quite cold for most of the year. It’s a strange combo of hot and cold. When I go to bed during the evenings, the quilt is often pulled over my feet and legs, but my upper body is so hot that I feel overheated if I use the quilt. During the summer and winter months, our windows are permanently open throughout the year. Hubby has learnt that he needs to wrap up warm, but he is more than happy with the reduced central heating bills.

Regards Jan x

[LollyParticipant]

Hi jan
Good to hear from you 🙂
Steve is on lenomide can’t spell it and vorinstat

His sensations come and go , and says it a cold feeling from deep within
Also I notice his voice is weak at certain times in the month

Did you read the article, in the mail on Sunday about mm

Are you taking drugs at the moment ?

Xxx

[janwParticipant]

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 of the forum comments on the Myeloma Beacon website where maintenance is more usual in America, you might be able find some more specific answers to your questions about side effects from Steve’s combination of drugs.

Yes, I read the interesting article in the Mail on Sunday about Elotuzumab which is a monoclonal antibody which attaches itself to a specific protein in the myeloma cells helping the immune system recognise these cells and destroy them. The phase 111 clinical trials have been showing some good results from this drug. My consultant is also hopeful about another monoclonal antibody called daratumumab which has been in recent phase 1/11 trials with some promising results. Unfortunately, it’s the length of time we have to wait for these new drugs to be trialled, results to be analysed and if successful waiting for approval in America, Europe and then the UK. Otherwise it’s just being in the right place and right time to wait for these drugs to be available in a local clinical trial. But at least there are a variety of promising drugs coming through the pipeline in the future.

So far, I’ve been very fortunate to have almost achieved five years this September in remission without any drugs. However, my light chains levels still continue to rise with my consultant discussing the issue of relapse treatment.

Love Jan x

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