[tobygoParticipant]

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 end, I think that it was the Thalidomide that caused a little neuropathy, but that is clearing up slowly.

Hope that it works for you.

Toby

[tobygoParticipant]

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

 

 

 

[tobygoParticipant]

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 developing into Myeloma and so you can sit at MGUS for decades. As far as I am aware, MGUS causes no issues for you (other than perhaps needing to drink lots of water?).

I was diagnosed with MGUS back about 18months ago but the investigation kicked off after a routine blood test 3 years before that. It took a long time to get the diagnosis! I am now 44 with the initial test being made when I was 40.

Wait until you get the full results before jumping to any conclusions.

Toby

[tobygoParticipant]

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’. However, from what you say, that will be a good thing.

Many thanks

Toby

 

[tobygoParticipant]

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.

[tobygoParticipant]

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

 

[tobygoParticipant]

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

Toby

[tobygoParticipant]

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

Toby

[tobygoParticipant]

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 months to help my body along. Lots more vegetables, a little less fruit (and different fruits), more nuts, less meat, etc.

I hope that you can soon start to fill the pages of 2016!

Kind regards

Toby

[tobygoParticipant]

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 journey is the SCT. It looks like that I am only going to achieve a ‘very good partial remission’ with my PP down 1.5 or so (down from 35).

As such, it is good to see all of the replies to your post. From this thread and other areas of the site, it does seem as though the opinion is firmly in favour of having the SCT done.

I wish you well with your thought process.

Toby

[tobygoParticipant]

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 disappointing and confusing but your post has answered a few questions for me.

Thank you.

Toby

[tobygoParticipant]

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 goes well on Thursday. Post how it goes if you are comfortable with doing that but no pressure. Like Helen, I do like the iceberg analogy; it really helps to visualise what the process is achieving. I am beginning to learn how individual MM is!

I also hope that your appointment goes well on Thursday Helen. I too find the unpredictability one of the hardest things to cope with. Will remission be 6 months or 15 years!

I find all of the numbers a little confusing but I had thought that the light chains and para proteins were pretty much the same thing? I might well be wrong.

Many thanks both for your thoughts.

Toby

 

[tobygoParticipant]

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

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