Hi John

There is a myeloma group on facebook. It is a closed group so you have to ask to be added.

Maureen

Hi Helen

My husband had his SCT in The Beatson and they were excellent. He was home14 days after he got his stem cells back. He didn’t have too many issues mainly diarrhea and boredom. He took in his laptop to keep him occupied. We live in Dunblane so I was able to visit every day. I stayed 2 night at the hospital when Ian was at his worst,…[Read more]

Hi Andy,
It was good to meet up with you both again and hope to see you in Scotland next time. Ian is having cyclophosphamide on 28 August and then seeing if he can harvest stem cells on September 7. I do hope that he will be able to produce enough.

Our usual cheery consultant said it would be Ian’s last treatment and he may get 18 months and…[Read more]

HI Kath
I am so sorry to hear this news. Can I ask what your farther in laws paraprotein had been reduced down to prior to the SCT and his age group?

What treatment plan was he on prior to his SCT was this thalidomide?

I send you my very warmest wishes and of course a speedy recovery for your father in law.

Kindest regards

So happy to hear your husband is home from hospital. I hope he gets into remission with his treatment and doesn’t have too many side effects.

It’s a hard journey but doable.

Maureen x

Hi Shirl

unfortunately my husband has relapsed again and finding it difficult to find a treatment that works as each time he relapses the myeloma gets more aggressive. It is such an individual decease but he still has a few treatments left. Not happy with our consultant so asking to be referred to the specialist in Glasgow again.

I hope your…[Read more]

Hi Helen

I too think Ian should try all treatments until either his bloods are bad or he has bone fractures. I feel so stressed when we see this consultant and would prefer to see another one, as there are 4 in the practice but no specialists. I will have to speak to the specialist nurse to see what she can do to avoid this consultant.

Ian is…[Read more]

So sorry to hear your husband is having such a bad time and it is so scary for you both. Early diagnosis is crucial but sadly many gp’s don’t know about myeloma as it is a rare cancer. My husband was diagnosed late in October 2012 after 7 months of back pain. He also had spinal compression but went on to have a SCT in May 2015 and was in…[Read more]

Hi Helen

Thanks for the info but the trials in Scotland for daratumumbab are closed. We saw the consultant yesterday (the one we don’t like)and he was very negative, he has given Ian 2 weeks off treatment to see how he feels but if his FLC have increased again he will be taken off treatment. Only option open now are xomabib and mephalan given…[Read more]

Hi Helen

Hope you enjoyed your holiday in Cornwall. We went a few years ago to Hayle and we loved it.

Ian’s latest results show the FLC have risen by 20 to 113. I know it’s not a lot but wonder if the treatment has stopped working. He has just finished cycle 5 and we are off to Ibiza for 10 days on Sunday so we won’t know the results for…[Read more]

Unfortunately the new drugs are not available here yet. As he has had a good remission with his SCT he would be eligible to have another. Has your husband had revlimid or velcade? Farydak is also available. Hope this helps.

Hi Teresa
Yes it is Cyclophosphamide. I start the new regime tomorrow so fingers x that I can tolerate this more than I couls the thalidomide which I feel so disappointed by as I really wanted to try the best possible option to try and bring my paraprotein levels down.

Hope all is well with you both
DX

Ohh Andy that does sound a bit high!!
I thought mine was bad at 49 …. All the very best for Thursday and please keep me posted.

Dawn

Hi
My husband who was 56 on diagnosis also lost the use of his legs after spinal compression. He had a spinal operation to repair the vertebrae in his back (which I think were C1 and C2). The surgeon inserted posts and 2 pins which had to be removed later due to infection. I would ask for a back specialist to have a look at your brother.

My…[Read more]

Hi Andy
Having a positive attitude will help you so much and you will experience up’s and downs with treatment.
I have decided to change my treatment plan to VCD purely because I have suffered with the neuropathy quite badly, however the vtd has got a better response rate some I am told and I’m sure you will be fine.
Do you mind if I ask what your…[Read more]

Thanks Teresa that is really helpful and I will speak with my consultant in the morning.
Sending my very best wishes to you both
Dx

Thanks Jan, I will speak with them on wed. All the best to you and lovely to speak with you
Dx

Hi Sabs

My husband had spinal compression when he was diagnosed in 2012 and had an operation to insert pins to stabilise his spine. It did work but he had to have the pins removed as they caused infection. He has had several treatments and a SCT in May 2015 which gave him 18 months remission. Now on farydak, dex and velcade which is working.…[Read more]