Hi Susie

No one has mentioned that it could have anything to do with Ixazomib. I really don’t think they could make that judgement after just one cycle of treatment involving it.

Will keep you in touch. Should know more in a few more weeks.

Helen

Hi All

I have had one cycle of Lenalidomide and Dex followed by a second cycle of Len, Dex and Ixazomib. This was prescribed after failure of SCT earlier in the year. Unfortunately I have encountered a few problems over the last few weeks, probably nothing to do with the new drugs but more to do with bad luck!  I  had a UTI (July 22nd)  ten da…[Read more]

Hi Peter, Sorry to hear about your stomach problems. I hope they manage to help you with this.

Let’s hope your LC take their time before reaching the point at which you need further treatment.

Like 007 I would be very interested to hear from anyone who has been/is being treated with Ixazomib, Lenalidomide and Dex.

Best wishes

Helen

Hi, I had my SCT in Jan but unfortunately it did not work for me. My myeloma is measured by lambda light chains. By June they were up to 1310. It was decided that I needed further treatment and so I was referred to Dr Ramasamy in Oxford by my Gloucester team. I started Lenalidomide and Dex immediately while the paperwork to access Ixazomib was…[Read more]

Hi Peter and all other contributors,

I think I described in an earlier post that once I stopped my course of VTD my light chains began to increase. Consequently, my SCT has now been postponed until the new year and in the meantime I am having two cycles of ESHAP. I was admitted to hospital on Monday this week to have a Groshong Line fitted to…[Read more]

Hi Toby

Thank you for your message. I still go into hospital on Monday as ESHAP is a five day inpatient treatment. I will have one week in hospital followed by two weeks at home x2. The transplant should now be in the new year.

I am glad your harvest went well and that you will be able to enjoy Christmas with your family before the transplant.…[Read more]

Hi Peter

I totally agree with you and am very aware that visiting certain websites can be dangerous! MyelomaUK is the one site I trust, the rest I may read but always return to this site for honest and accurate representation of the facts. At the moment my mood changes daily. I swing between accepting my situation, having utmost confidence in…[Read more]

Hi Jill

Thank you for sharing your mums results. Hasn’t she done well!

It proves yet again that we are all different. My head spins when I try to work out what published data and fellow patient experiences can tell me about my own myeloma. I’m quickly reaching the stage where I feel I should stop looking for answers……  (That’s if I can…[Read more]

Hi Peter,

The slide that you refer to was used purely to demonstrate the improvement in survival rates over a number of years. This is very old data and I believe further improvements have been and continue to be made. Although it is really tempting to try to predict our future there are no statistics out there that refer to our individual…[Read more]

Hi Peter

Since my last post I have attended the MyelomaUK Info day at Birmingham. The consultants who spoke gave the message as described by Dave and Jill. If you are interested their PowerPoint presentations from that day can be accessed by selecting ‘how we can help’ > ‘patient and family info days’ > ‘past info days’ > then select West Mids…[Read more]

Hi Peter

You’re right! I should be pleased my lambda light chains are down, it just seems such a long way off normal though!

In answer to your question. I had my first BMB in April when I was first diagnosed and the second one on September 6th at the end of my VTD treatment. I guess this was so they could measure my response to the induction…[Read more]

Hi Peter

I was also diagnosed in April this year with lambda light chains myeloma. Your understanding of kappa/lambda light chains and the ratio is exactly right as I understand it. I also had velcade thalidomide and dex as my treatment for 4 months (I also had one month on just velcade and dex at the start and thalidomide was introduced when my…[Read more]

Dear Dusk

THANK YOU for your clear explanation. That all makes sense!

I am waiting for an appointment to come through to meet the doctor at the hospital where I will be having the transplant. I just want to get on with it now!

best wishes

Helen

Hi all

Thank you for your messages.

The more I read the more confused I become! I thought the blood results (showing number of lambda light chains in my case) were an indicator of the activity of the disease but the BMB provided a more accurate picture of the amount of cancer. I was told I had 55% abnormal plasma cells when diagnosed and they…[Read more]

Hi

Does anyone else find having a bone marrow biopsy traumatic? Or am I just a coward?! I asked for a sedative this time but felt no sedative effects at all! The doctor carrying out the procedure said that some people felt nothing at all – I can hardly believe that as I find it so painful!! It’s less about bone pain but I seem to get nerve…[Read more]

Hi all

I had my appointment with the consultant last Thursday and am having a bone marrow biopsy on Tuesday. SCT is still planned for mid to late October.

When I asked about the benefits of SCT and the average length of remission I was told that the data that suggests an average of 18 months is already out of date as much of the treatment has…[Read more]

Hi Charlie

The iceberg is a great way to explain it!

I hope your appointment goes well on Thursday and you get to enjoy your friends birthday celebrations! I’m hoping that my treatment will allow me to celebrate my daughters 21st birthday on October 8th. I think the timing should be just right.

Where are you having your treatment? I will have…[Read more]

Hi Charlie

I am about to finish my fifth and final cycle of VTD this week before a SCT which is likely to be late October. I see my consultant this Thursday and one of the questions I had planned to ask him was what the options are if I chose not to have the transplant. I was diagnosed in April this year and had 3500 lambda light chains and my…[Read more]

Hi Ben

I am being treated at Gloucester Royal. I was diagnosed in April and have been under Dr Shields who I believe is the Myeloma specialist for glos/chelt. I see him every four weeks in clinic and I have a named specialist nurse who I can call at any time. She also runs a Myeloma support group at the Maggies centre in Cheltenham once a month.…[Read more]