[bandityogaParticipant]

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 interesting how people lived in 1913. I could have listened to the stories the miner told all day. We are off to Puerto Mogan in Gran Canaria at the end of the month for a week as Ian is still ding well.

I was sorry to hear you had a night in hospital but the good news is the velcade is working for you and it will be worth it to get into remission. Do you know how many cycles you are having? I hope you afe not suffering to badly with the side effects.

You will have a high heating bill, but men and women differ in temperature. I am always colder than Ian and on goes the heating.

it is good to get some normality back in our lives, I have rejoined the Rock Choir, I go to an exercise class on a Monday and pilates on a Thursday and I also do some volunteering work for the church. We go out most days and have a coffee, followed by cake which we now share as we were putting on weight. Ian’s friend visits him on a Tuesday night and they have a beer and play football on the computer
Ian also goes to the gym twice a week and has built up his muscles again and feels good about himself.

Hope it’s not too long till you can get away on holiday too and forget about myeloma. I think it is dreadful that revlimid and pomaledamide have been taken of the CDF but it is still available in Scotland.

Maureen x

[bandityogaParticipant]

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 friends.

You will be in my prayers.

Maureen x

[bandityogaParticipant]

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 velcade and revlimid and she agreed that it should be added but doctors refused.

We are having a few days around Harrogate and might fit in another holiday abroad this year. Making hay while the sun shines Helen.

Maureen x

[bandityogaParticipant]

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

Maureen x

[bandityogaParticipant]

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 cyclophosphamide again. We were told by one consultant that he would not get a SCT as he was refactory but I asked another consultant and he was referred to Glasgow. His bone marrow results today were 5% plasma cells (what is the normal level?) and lambda steady at 11 and kappa 8. I do not know how our hospital could not give Ian cyclophosphamide but was advised that it wasn’t their practice. I feel we wasted 2 treatments and I hope that Ian has a long remission, enough for more treatments to be passed. Ian also had bad side effects with mouth ulcers, fatigue and nausea but it did work.

Wishing all the best Jan and hope velcade works for you and you can get another SCT.

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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 will get your FLC down to normal. Will you get another SCT?

Hope you are all well.

Maureen x

[bandityogaParticipant]

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 in a long while. I am now a stronger although still get anxious and have learnt a lot about myeloma. I hope I can help someone else although everyone is different. Ian’s consultant was very abrupt and not helpful so he now has a new consultant who is much better, although we do see other consultants.

Keep in touch.

Maureen x

We are in a good place just now as Ian is in remission 3 months post SCT and we are off to Ibiza soon.

[bandityogaParticipant]

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, we are off to Ibiza on Thursday for 10 days.

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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

[bandityogaParticipant]

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 for coffee to get some space when Ian was on dex.

Maureen x

[bandityogaParticipant]

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

[bandityogaParticipant]

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 luck with the treatment and let me know the outcome of the second opinion.

Maureen x

[bandityogaParticipant]

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 were both very upset at this news but when we asked another consultant at the clinic about a SCT she referred us to The Beatson in Glasgow and he had a SCT in May. His FLC are now 16 and we are hoping for a good remission. Booked a holiday to Ibiza next month and living life to the full.

If you aren’t happy with a consultant, ask for a second opinion. Find out all you can about myeloma and question anything you dislike or are not sure of. The nurses on myeloma.org are very helpful.

Maureen x

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