Hi Gary
Thankyou so much for your reply and I am so pleased that sue is doing so well.
I do seem to be having quite a few problems at the moment with my treatment and I just hope I start to see an improvement in my next cycle.
I seem to have this Mist like a brain fog over my eyes and I have a very red rash like a sun burn aswell as neuropathy.…[Read more]

Hi Helen

Ian had really good results, after 2 cycles his FLC are now 93. We should get the results of cycle 3 next week so fingers crossed it is still working. He has more fatigue with this treatment and had problems with his bowels but that has calmed down.

We were in Ambleside on 2nd May for a couple of days and had really good weather. We…[Read more]

Morning Jan

Thank you so much for your response and I will do as you have suggested and try and put things in place prior to treatment. I think we all have good days and bad but at the moment it all feels a bit rubbish.
Have a nice Sunday and please keep in touch.
Love Dx

Hi Jan
Would you mind if ask you about your hair ..did you lose any on your VCD treatment?.
When you had your stem cell transplant we’re you offered a cold cap or is not something that would work with the high doses of chemo.
I am so upset to lose my hair and I know it’s only hair and will eventually grow back but it just makes me feel so frighten…[Read more]

Hi there
I started my vtd last Tuesday with my 2nd injection administered yesterday and I have had extreme pain all through my back both times lasting the whole night and the following day. I can’t sleep at all awake all night probably because of the Dex even though that is taken 1st thing in the morning.
Anyone else having the same problems? I…[Read more]

Hi I am so sorry to hear your news..can I ask what chemo regime he is on and I would be interested as to what clinical trial he is on please.
I started my own chemo yesterday with VTD and I was told that I could not go onto clinical trials at this stage.
In answer to your question about age, I asked this same question at the hospital yesterday…[Read more]

Hi Vanessa
Could I just ask what your husbands paraprotein levels started at prior to treatment and what they are now.
Did he have any weight gain and any mood disturbances, and how were his hands. Did he experience any neuropathy.
Sorry to ask so many questions, I have been awake most of the night worrying about it all.

Thankyou so much
DX

Hi Vanessa
Thank you so much for your reply..I have read so much about the treatment and it’s side affects. Can you tell me how your husband has been and what he has experienced ?

Best wishes
Dx

Hi Helen

We went to see a specialist at The Beatson, Glasgow and he suggested that Ian start farydak, velcade and dex and if he gets into remission to collect stem cells. He will then get 3-4 days of radiation and then get his stem cells back. Ian is now finishing cycle 1, 2 weeks on and 1 week off which fits in with our trip to London. He…[Read more]

Hi Helen

Sorry to hear that your FLC are continuing to rise and I hope you get on the daratumumbab trial. Ian is in the same boat as pomalidomide has stopped working after 4 cycles and the consultant wants him to go on farydak, velcade and dex. We are going to speak to a specialist in Glasgow to speak about any other options but he has gone…[Read more]

Hi Stanley

Good to hear you are still doing well and in remission. I am not on technical terms with myeloma but do know a lot more now than on Ian’s initial diagnosis.

We have just returned from a week’s holiday in Playa Blanca and saw our (not) favourite consultant and Ian’s FLC rose from 295 to 331. We hope this is just a blip as he is on…[Read more]

My husband was diagnosed in October 2012 and we both suffered from anxiety. He was give a phycologist to talk things over with whilst he was in hospital but it didn’t help very much. He was put on anti depressants which calmed him down. Everyone has anxiety in the beginning but you learn to live with myeloma. Not the same life before diagnosis…[Read more]

Thanks Stanley, he doesn’t seem to have too many side effects yet apart from lack of sleep due to the dex. Hoping that pomalidomide will get Ian back into remission.

Hope you are doing well.

Maureen x

After a long talk with another consultant, we decided that the best way forward was to use the next treatment in line which is pomalidomide. The daratumumbab trial was full in our area and it was only as single use without dex etc.

We were very happy with our consultant as she took lots of time and explained everything we needed to know. If Ian…[Read more]

Hi Rebecca/Dean

We are going to ask to see the specialist myeloma consultant at The Beatson in Glasgow which is only 30 miles away. It will hopefully put our minds at rest and let us know why he wasn’t considered for the trial. If we aren’t satisfied, we will ask to get another opinion in London, although the funding in England is different to…[Read more]

Hi Rebecca

Ian has not had a whole lot of of combinations/treatments. He has had CTD, Velcade and dex and revlimid and dex then SCT. We don’t have a specialist in myeloma at our hospital so I have phoned Myeloma UK and asked some questions. There is a trial for early entry to daratumumbab near us but they said Ian wasn’t suitable so we will…[Read more]