Hi Kazza909

The symptoms you are describing are perfectly normal for a stem cell transplant. I had one just over 4 years ago and felt very ill for the first two weeks immediately after it. I had uncontrollably sickness and eventually had to have anti sickness drugs pumped directly into my bloodstream to stop the nausea.

But be reassured, I…[Read more]

Hello Steve

sorry to hear you about your diagnosis. I was encouraged to share my experiences with you to try and alleviate some stress from your life.

i was diagnosed with myeloma aged 33 four years ago. Like you I had a mgus amount of myeloma in my bone marrow but a very high para protein measure, because the myeloma had formed an…[Read more]

Hi Sabs

very sorry to read that your fiancée has been diagnosed with myeloma. I just want to reassure you that whilst it is a very worrying time at initial diagnosis, there are those of us out there (like myself!) who have been living with the disease for a number of years, and whilst not complacent, I live with optimism for the future.

For…[Read more]

Hi Rachel

I think you would have to have a bone marrow biopsy to determine whether it is MGUS or not. If the biopsy comes back with less than 10% myeloma cells in it then your are diagnosed with MGUS.

The biopsy is unpleasant (I have had 6 over the years) but I always treated it as my way of fighting the disease as it often hurt a little…[Read more]

Hi g4zz41983

when I was diagnosed back in June 2013 the doctors weren’t sure exactly what I had as the myeloma was in all my lymph nodes but barely in the bone marrow. A very rare presentation. I wasn’t given a staging for the disease but I was told if the stem cell transplant didn’t go well then I wouldn’t last long due to the nature of the…[Read more]

Hi greetje

i was diagnosed with a large plasmacytoma in about a dozen lymph nodes in my collar bone area and in my chest in 2013 (I was aged 33 at the time of diagnosis).

I was was treated with two cycles of DT-PACE, followed by a stem cell transplant. That got rid of 90% of the mass. I was then put on velcade, thalidomide ad dexomethosone and…[Read more]

Hi greetje

i was diagnosed with a large plasmacytoma in about a dozen lymph nodes in my collar bone area and in my chest in 2013 (I was aged 33 at the time of diagnosis).

I was was treated with two cycles of DT-PACE, followed by a stem cell transplant. That got rid of 90% of the mass. I was then put on velcade, thalidomide ad dexomethosone and…[Read more]

Hi georgieporgie

i think i was started on the VTD treatment between 4 and 8 weeks after the stem cell transplant. I can’t remember exactly when the treatment started. It was probably closer to 8 weeks than 4 weeks in hindsight as I had to have a PET scan to see the effect of the melphalan on the lymph nodes prior to the treatment starting. I…[Read more]

Hi

I just want to say that I was diagnosed with myeloma in my lymph nodes almost 3 years ago, alongside a tiny amount in my bone marrow (less than 10%). I was treated (and am still treated) at the royal marsden in Sutton. When I met professor Morgan he said that the presentation of myeloma in lymph nodes is very rare. However, when combined with…[Read more]

Hi val

I’ve suffered from a very rare extramedullary presentation of a plasmacytoma in my lymph nodes. They are basically a build up of myeloma cells outside of the bone marrow. There are lots of treatments for them, but the best option in my experience is high dose melphalan as part of a stem cell transplant. If the plasmacytoma is localised it…[Read more]

Hi maureen

i had a sct in October 2013 with my para protein level at about 25, and the bone marrow at 5%. However I am an unusual case as the myeloma had collected in my lymph nodes rather than the bone marrow and I was told that the sct was the only chance I had of survival, as when the myeloma is outside the bone marrow it acts much more…[Read more]

Hi Amanda

it is the common treatment procedure to try and put the myeloma as close to remission with the initial drugs and then have the sct to try and put the myeloma into remission. Hopefully the sct does achieve that and the remission is a long one.

What JaneElliot says is true. There are lots of other drugs available to treat myeloma for…[Read more]

Hi Amanda

it is the common treatment procedure to try and put the myeloma as close to remission with the initial drugs and then have the sct to try and put the myeloma into remission. Hopefully the sct does achieve that and the remission is a long one.

What JaneElliot says is true. There are lots of other drugs available to treat myeloma for…[Read more]

Hi Amanda

it is the common treatment procedure to try and put the myeloma as close to remission with the initial drugs and then have the sct to try and put the myeloma into remission. Hopefully the sct does achieve that and the remission is a long one.

What JaneElliot says is true. There are lots of other drugs available to treat myeloma for…[Read more]

Hi Majic30

I just wanted to post because I have experienced DT-PACE (and Stem cell transplant which came after). I should stress I am an unsual myeloma case (and if you’re a regular at the Royal Marsden Myeloma Clinic I’m the very obvious outlier in the clinic as I look (and probably am) about 30 years younger than everyone else) so my…[Read more]

Hi Mel

I know that the bone marrow biopsy comes with bad reputation, but you shouldn’t fear it as the fear if it is much worse than the actual procedure. I say this as a veteran of the procedure (I have had 6 in the last 16 months). Having gas and air really helps calm the mind and once the local anaesthetic goes in you will only really feel the…[Read more]