Hi Jan

Wishing you a Happy and healthy New year. Ian’s cough disappeared just before Christmas so we had a lovely time and ate too much at my son’s for Christmas dinner. The grandchildren were delighted with their presents and Isla has been out most days on her roller skates. I now have to lose some weight but can’t resist the chocolates we…[Read more]

Hi Jan

Good to hear your treatment is still working. I wouldn’t like your heating bills but if it works why not. Ian also had a hard time harvesting stem cells but eventually got there. I hope you do manage to harvest and have a successful SCT.

Ian is still doing well although he has had a cough for weeks but the doctor is not concerned as it…[Read more]

Hi Val

I bought hand gel and made each visitor use it at the door. I also used wipes for light switches and door handles. Wash all fruit and take the skin off where possible but try to lead a normal life as possible.

Hope Peter is feeling well.

Maureen x

Hi Andy

We did think about meeting up when we were at Rockcliffe Hall but thought you weren’t up to it. It is a lovely hotel and you should treat yourselves to a night away. They often have offers at different times of the year. The spa is wonderful and they have a huge hydrotherapy pool.

We saw the consultant today and Ian is still in…[Read more]

Hi Jan

We had a lovely break away, one day in Harrogate and 2 days at Rockcliffe Hall near Hurworth. It is our favorite hotel and we usually go once a year. This year they added a garden spa which was wonderful, only 6e people are allocated the spa at one time and the weather was beautiful. We also paid a visit to Beamish and I found it very…[Read more]

Laura

I am so sorry that your husband has passed away due to his SCT. My husband had his SCT in May and although we were told there was risks we didn’t really take heed of them. He had no ill effects from SCT and is in remission. I am sure you thought the same and it must be awful for you. I hope you have lots of support from family and…[Read more]

Hi Liz

So pleased to hear Kev is out of hospital and I hope he continues to improve and you too can get away to the sun.

Jan

I hope you are not suffering too much on velcade and it is bringing your FLC down for your second SCT. Ian’s tummy was bruised for months with the velcade injections.

I did ask Maggie about adding chylophosphamide to…[Read more]

So sorry to hear your husband passed away. You are in my thoughts and prayers.

Maureen x

hi Jan

Hope the treatment isn’t too harsh for you. Ian had velcade but only with dex. It worked for 3 cycles then FLC started rising. I asked for cyclophosphamide could be added and even got a second opinion but we were turned down and Ian went onto Revlimid and dex. It worked again for only 3 to 4 cycles but reduced Ian’s FLC to 500, no…[Read more]

So good to hear your hubby is doing well. My husband had SCT in May and his FLC are now normal. We just returned from Santa Eulaliah in Ibiza and now planning a short break in the uk.

Hopefully they will both have a long remission.

Maureen x

Hi all

We had a lovely holiday in Santa Eulalia in Ibiza. We both really enjoyed relaxing by the pool and Ian got into the pool for the first time since diagnosis, he can only swim back stroke as his spine is damaged but it gave him great pleasure to be able to get into the pool.

Jan

So sorry to hear you have relapsed but hopefully velcade…[Read more]

Hi Eve

Good to hear you are off on your travels, if you are ever around our way, give us a call, it would be nice to meet up.

I was sorry to hear about Jo and miss all the people who helped me when Ian was first diagnosed as I wasn’t coping at all. You helped me a great deal as did Dai, Eva, David and Scot. I haven’t heard anything from David…[Read more]

Hi Jean

Sorry to hear Mike has been in hospital but good to know they have got the infection under control. It would do him no harm to have a rest from treatment until his neutrophils are a bit better but ask his consultant. Encourage Mike to stop smoking, I did it 12 years ago and feel so much better.

Hope you thoroughly enjoyed your cruise,…[Read more]

Hi Liz

It is a difficult time for you both but try not to worry too much. It must have come as a shock to be told Kev was going to have his SCT so soon. I hope all goes well and Kev will be home soon.

Maureen x

Hi Liz

It is a difficult time for you both but try not to worry too much. It must have come as a shock to be told Kev was going to have his SCT so soon. I hope all goes well with and Kev will be home soon.

Maureen x

My husband Ian was also very moody and impatient when he was on treatment. He also had surgery to remove a tumor which was compressing his spine, then radiotherapy. He was diagnosed in October 2012 and although we have not had an easy journey, his FLC are 16 following a SCT in May this year.

I used to go out for a walk or meet up with a friend…[Read more]

Hi Fi

Ask your dad’s consultant what they intend to do regarding harvesting stem cells. He can be given an injection to produce stem cells and if that fails they have a drug called pelixafor which can produce thousands of stem cells. My husband had problems producing stem cells until he had this and then produced 4000.

Maureen x

Hi Peter

My husband is 59 and has Lambda FLC. I do not think you are too old for a SCT as a friend of ours had one at 71. As long as your bloods are ok and you are fairly fit, you should be offered a SCT. Ian’s FLC were 540 when he harvested. Can I ask what your FLc are?

We are now under a different consultant and feel a lot happier.

Good…[Read more]

I found our consultant to be very negative too. My husband had CDT which gave him 1 year’s remission, then 3 cycles of velcade and dex which didn’t work, 4 cycles of revlimid and dex brought his FLC down to 54 but consultant said, his words, we were in a very bad place, no SCT as he was refractory and he would have to think about a trial. We…[Read more]