Hi Brenda

I had 6 months of VTD (Velcade, Thalidomide, Dexametbasone) between March and Sept. of last year.  I was lucky in that I had no significant side effects. The Dex stops you sleeping and made me put on weight. The whole treatment made me feel a little woozy and not really with it, but this did not really start until the 3rd cycle. In the…[Read more]

Hi Helen

I was going to wish you the best for your SCT, but I see it might be delayed. I hope that you are well and that you are getting more knowledge of the EHSHAP – I have no info. to give 🙁

Had my Stem Cell harvest yesterday and Monday. All seemed to go well – just very tired now.

Toby

Hi Paz

Sorry to hear that you might have one of these conditions.

I would say don’t read too much negative into things. There is a wide spectrum of conditions in the MGUS; Smouldering Myeloma; Multiple Myeloma cycle. I hope that you are at the MGUS end and that you remain there for a long time. From MGUS you have a 1% per year chance of…[Read more]

Hi Dino

Thanks for the tip – I did read your post on the harvest and I hope that you are recovered. I couldn’t decide whether you were lucky or not to give up so many cells! It sounds as though there were some significant downsides. My wife is determined to come with me for the harvest despite my protestations saying that ‘I will be fine’.…[Read more]

Hi Graeme – Good luck in November. I am just behind you in the time line – Stem cell collection on the 9th /10th November with transplant early in the New Year.

I look forward to hearing from you that it all went well.

Hi Michelle – great news on the October results.

Hi Helen

Sorry to hear that the biopsy was traumatic. It is never nice having needles put into you, but as you say done for now!

I have only ever had the one biopsy and that seems a lifetime ago now but I guess there may be more with a transplant around the corner.

Hope all is good.

Toby

Hi Dawn – good luck for tomorrow. Wishing you all the best for a speedy recovery.

Toby

Thanks Helen – good luck for the bone marrow on Tuesday. It all begins to make more sense, slowly, doesn’t it!

Toby

Hi Michele

Thank you for your encouraging reply – I am relatively new to all of this and it is good to pull on others experience.

It is good to read your positive outlook and I am pleased you have had a great year.

I completely agree about diet. Whilst my diet was not ‘bad’ before diagnosis I have worked hard to change it over the last few…[Read more]

Hi Graeme

Thanks for this post.

I am going through a similar thought process at the minute. I am mid-way through my 6th round of VTD having been diagnosed in January and needing to have some radiotherapy on my pelvis to treat a large tumor that had appeared there.

However, all of those treatments are coming to a close and the next step in this…[Read more]

Hi Michele

What a great post that I have just stumbled across – great to read such positive news and I hope that things are still going well for you.

I was diagnosed in January and I am in the middle of my 6th round of VTD and it looks like I will only achieve a very good partial remission ahead of my transplant later this year. Slightly…[Read more]

Hi Helen and Charlie

Great news on zero paraprotiens Charlie – that must be very welcome. I don’t think that I am going to get there even after 6 cycles of VTD – I seems to be plateauing at somewhere between 1 and 2 which is I guess pretty low having started at 30. I have yet to understand practically what this means!

I hope that the appointment…[Read more]

Hi Charlie

I hope that you are well and treatment is working. What was your conclusion on the SCT?

I have just finished my 5th cycle of VTD and will start my 6th and last cycle on Tuesday. The suggested treatment is then the SCT later in the year and like you were back in June, I am beginning to assess my options.

Many thanks Toby