Hi all, what’s shocking is that you can/do feel helpless in what drugs we can access. From what I understand NICE are priced focused even at the expence of the patient, the only blessing is that we seem to get the best drugs further down the line. From my prospective I want the best treatment and some of the new drugs offer real hope but the time…[Read more]

Hi Teresa, I was taking it first thing in the morning, as soon as I woke up. Then waited min of one hour before eating anything, there were a few times I felt sick but geneally I found the drug was less toxic than the previous ones I had been on. Had my biopsy yesterday and fully recommend gas and air, had three so far and this was by far the…[Read more]

<p style=”text-align: left;”>I live on Isle of Wight- diagnosed June 2016, had 8 rounds of VTD then three rounds of  Ixa. Dex and Rev. Have a bone biopsy next Tuesday to see if the treatment has worked.</p>
<p style=”text-align: left;”>I found the side effects much easier on the last treatment but as you said back on the drugs and daily…[Read more]

Hi Teresa, I to am being treated at Southampton, your husbands story and mine are similar. I have just completed three months of the drugs you are about to start. I assume you see Dr J

adrian

Hi Richard, you are not rambling this is fantastic feedback- I really appreciate it. How are you feeling now?

Hi Richard, God that happened all very quickly for you, you made it and home- is there a sense of relief?  Not having mine until August so more time to think, did you try ice for the mouth?  Really pleased you are still positive, what’s your plan for the next few weeks?

wishing you the best

adrian

No worries Ann, I hope everything goes well.

adrian

Hi Rob, I hope it all goes to plan on Monday and you don’t have any relays- it would be great to keep in contact.

all the best

adrian

Thanks Rob- really great info on what’s coming up, really glad to hear your ready for the transplant soon. have you had your Hickman line put it yet? Do you have to wait for a bed before you can start?

thanks

regards

Adrian

Thanks Kate, I guess it’s a case of wait and see, I’m not sure why this hit me- I have been very lucky and managed to work nearly all the days I have been on treatment and wanted to carry on right upto the last point, I’m self employed so it make life a little more challenging with finance.

Thanks again

adrian

Richard, thanks for you feedback, I will keep in contact with you,

Adrian

Thanks a lot Kevin- best wishes on your next treatment mate.

Hi all, please could I have some help- I was told there was more chemo before harvesting, is this correct? Also I was told I could lose my hair at this point? I know I will lose it but didn’t expect it at this stage- please could I have any thoughts on this- kind regards Adrian.

Hi Richard, so happy to see you are making good progress with this marathon of treatment (I still find the whole thing a bit crazy) you are now ahead of me on the treatment as I had two extra treatments (8months in total). Due harvesting soon and was looking for any feedback/tips please- not good with needles etc..

Not sure about the mini allo…[Read more]

Good luck tonight Deb, sorry I can’t make it. Gave my birthday money to Myeloma UK in March, set up a just giving page and nearly got £1000 so tried to do my bit. I will continue to raise awareness/money after my SCT in 2-4 weeks. Keep going Deb you really are an inspiration.

adrian.

Thank you James, what an uplifting story. Thank you for sharing, regards Adrian.

Hi Brian, on my sixth round of VTD, first 4 months were fine but as time has gone on I feel more and more tired. Had a few side effects but nothing to bad, slight sick feeling and ringing in my left ear but can’t pinpoint which drug is causing this. Currently on 100mg a day (started on 50)  of the thalidomide which I now take every day including…[Read more]

Hello Henry, I also live on the island, Godshill. It great to hear about St Mary’s and would agree that they have been very good. Glad to read you are doing well and hoping to get an update from Southampton tomorrow. Dr Jenner- any advice would be well received, regards Adrian.

Hi Brian, I hope you don’t mind me chipping in, like yourself I am facing a SCT and I am concerned about the whole thing, I started VTD in July and from then until now there has been an assumption that this is what needs to be done. Nobody has asked me if I want one! I see my specalist again tomorrow so I guess I might have to make my mind up…[Read more]