Hi Amanda

I remember very clearly finishing four cycles of CTD in 2010 and after some blood transfusions, feeling much better. Coming off the drugs meant my energy levels returned and I lost many of the side effects of nausea, constipation and muscle weakness. However, like you, I then began to worry about the next stage in the procedure of the…[Read more]

I believe that you have to remain positive, if not for yourself, then for those around you. My paraprotiens were at 44 prior to SCT, three months after they were below 2, perhaps not what I wanted. I was/am on the myeloma XI trial, I opted for no maintenance drugs and two years later I am still on NO treatment, I visit the clinic every three…[Read more]

Hi Amanda, I am sure you will get quite a few responses to your request. Let me tell you how my SCT went. Prior to harvesting I was given four injections, one a day, to boost the blood cells, the evening before harvest I was given a final injection, very expensive, evidently. Was hooked up to the unit, and off we go, I spent two days having the…[Read more]

Hi Vicki.

I have been referred to Prof. Jackson at Newcastle Freeman hospital to see if an Auto SCT is now an option. I’m not counting on it but will wait and see what the Prof. says. A SCT could buy me more time for new treatments to come along since I’m nearly at the end of the drugs list. I’m not sure if my bone marrow has recovered enough to…[Read more]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood…[Read more]

Hi Vicki.

Velcade never worked for me. I was on PAD and it never worked but there again nothing worked for me till I was put on Revilimid and that only seemed to work once Cyclophosomide was added. I had 22 cycles all together before I was switched to Pomalidomide which I’ve just started my 14th cycle of. My PPs were 6.4 at my last blood…[Read more]

Hi Vicki,

I had Velcade with Cyclophosphomide last year but it only reduced my IgG down to 52 before they decided to stop. It didn’t really work for me and Revlimid was not seen as an option because after having just one course of PAD as the initial chemo, my Liver enzymes went through the roof. The medics were very concerned about Liver damage…[Read more]

Hi, your post is interesting. I am the opposite to your husband. I was on myeloma XI trial, had a SCT two years ago, after long discussions with consultant and trials drug nurse I opted for no maintenance. Have had one infection over those two years, pps never went much below 2.0 and are slowly rising currently at 4.9. No talk of any further…[Read more]

Hi there,

I had my SCT last January – 1 year ago tomorrow. Since then my PP’s have been stable at 23. Other indicators show that the MM hasn’t got any worse but they didn’t do a BMB post SCT because I didn’t want it and my Consultant agreed it wouldn’t really tell her anymore than she already knew. So, although no BMB, the course of action is to…[Read more]

Evening, had my SCT exactly 2 years ago. Was/am on the myeloma XI trial. See my consultant every 3 months, not on any drugs have penidronate infusion every three months, it is being changed to zometa this month. My Pps never went much below 2, last reading three months ago was 4.9. Other readings must be okay because consultant has not recommended…[Read more]

Hi Simon
I had thalidomide as part of my initial treatment over 3 years ago. I had 6 cycles of it and I responded really well. You’ll probably have to take an aspirin every day or something else to prevent clots, but it certainly worked for me and I’m in a complete, drug-free remission 3 years after my SCT.

It did have side effects but the…[Read more]

Hi Susie.

It’s important you let your dentist know your on Zometa the next time you visit. Tooth extractions would only be done as a last resort and hopefully after a minimum of three month break from Zometa. The problem occurs due to exposed bone and has to be avoided as it can lead to osteonacrosis of the jaw. Which is another little problem I…[Read more]

Don’t need to thank us, after all you paid into the system long enough and what you paid in helped someone else at their time of need. We just need the youth of today to have more babies so that the cash supply keeps coming. I suppose it’s like a big Pyramid scheme, you need more at the bottom to keep it all going.

Thank you Richard,that was kind,

I often think about Dai,and others and people who have stopped posting,like Jo .

Deb Bones lost her fight just after Christmas as well,it’s a sad year all round for many of us,but we do live in hope that away to control Myeloma is coming,plus we have the knowledge that all the people on the trials helped

I am…[Read more]

Hi Richard.

Just caught up with your post and agree with everything you say.

Every day is a gift.

Andy x

Hi Jean.

Infections can effect the results of blood tests and to only give Pomalidomide two cycles and expect a fifty percent reduction seems a bit harsh. Having said that I only had two cycles of Velcade for similar reasons! When I was on Revilimid my PPs didn’t show a reduction for four cycles till they added Cyclophosamide to the mix. I ended…[Read more]

Hi Valerie.

There’s not much I can add to what Richard has said. Everything you describe is pretty much typical of a myeloma journey. Dexamethasone is a demon but essential drug. I know as I’ve been on it for over three years now and tonight is my DEX sleepless night. As to how long will his agony last I’m afraid no one can answer that some get…[Read more]

Hi Suzi.

As Ellen says non-secretory myeloma is rare. I’ve been on this forum since 2011, I think, and can only recall one other case.

My knowledge is even though paraprotein monitoring is important the whole blood analysis is important and a good indication of myeloma activities.

Some can live with high PPs and smoulder whilst others have low…[Read more]