[bandityogaParticipant]

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 walked to Rydal Hall but Ian was very tired so after a coffee and cake we got the bus back. We also took the boat into Bowness and had a huge ice cream.

We visited a garden near Windemere which was lovely and run by volunteers.

Glad your mum had a nice birthday, we should have met up. I hope the daratumumbab isn’t causing too many side effects and works for you.

Ian has had an awful cough for some weeks so the consultant has put him on antibiotics. I have got a bad cold and hoping it goes soon.

Love Maureen

[bandityogaParticipant]

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 also suggested mephalan and ninlaro on compassionate grounds so we feel better that there are more treatments available. He hasn’t had too many side effects on this new treatment. The usual dex as he has 20mg, 4 days a week and his bowels are a bit loose but I pray that this works. The trial for daratumumbab has closed in Scotland so there are no trials at present.

I hope you enjoyed your trip to Amsterdam and also the celebrations for your mum’s 90th birthday. I hope that daratumumbab works for you and you get into remission.

We try to take one day at a time and enjoy life. I wish the weather was a bit warmer to get out into the garden but it is getting colder.

Let me know how you get on with the trial.

Love Maureen

[bandityogaParticipant]

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 through most of them very quickly. We were told that it would be unlikely for Ian to have another SCT so we too are coming to the end of treatments with no trials in Scotland yet and the SMC has declined the use of daratumumbab and carflizob (hope that’s how you spell it). Not ready to give up yet. We have a trip to London in March to see my daughter and going to see 42nd Street and eat in The Ivy (our Christmas present from my daughter). Trying to live from day to day but it is very very hard.

Enjoy your visit to Amsterdam, we haven’t been there but would like to see it. Your mum is doing great reaching 90, enjoy all the celebrations and know that I am thinking of you too.

Maureen x

[bandityogaParticipant]

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 pomalidomide and dex and he has had CTD, Velcade and revlimid, then SCT from which he had 18 months remission. I did ask what the next treatment would be and he advised on a trial of daratumumbab and perhaps another SCT. Ian hasn’t had Farydax yet, so we will ask to see another consultant and if we are not happy will ask to see a specialist.

We don’t have many trials in Scotland and the treatments tend to consist of 2 drugs rather than 3 which shows to work better.

Hope you continue to do well and get away on holiday too.

Maureen

[bandityogaParticipant]

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 but live one day at a time and try not to look too far into the future.

Talk overr your treatment with your consultant and ask if you are having a SCT if you get into remission. Find out all you can about your myeloma and keep asking questions. If you are not happy with your consultant you can be refered to another or ask for a second opinion. The myeloma nurses are really excellent so don’t be afraid to phone them (calls are free)Knowledge is good. Hope all goes well.

Maureen

[bandityogaParticipant]

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

[bandityogaParticipant]

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 gets into complete remission, he may get another SCT but it depends if he can harvest as he had difficulty first time around. He started the 4mg of pomalidamide with 40gm of dex on Tuesday and apart from a few sleepless nights, he seems to be doing fine but it is early days yet. I hope that it works and we are taking one day at a time.

Maureen

[bandityogaParticipant]

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 Scotland. Pomalidomide is available in Scotland but not England and there lots more trials in England.

The woman who went to London for her treatment lived in Inverness and her name was Eva. She was very knowledgeable and I spoke to her a few times. Sadly she passed away a few years ago.

I will keep you updated.

maureen

[bandityogaParticipant]

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 have to find out why as he meets all the criteria on the web. I also asked about mixing a combination of 3 treatments and was told they were only licensed for 2 treatments so I am thinking this would be end treatment. I will ask for a second opinion regarding combination of treatments.

Ian is a lot fitter than he was first diagnosed and I do pray that the treatment will work and give him many more years.

[bandityogaParticipant]

So sorry to hear your husband has passed away. I hope you have lots of support from family and friends. Grieve for him and remember all the good times you had together. You are in my thoughts and prayers.

Maureen

[bandityogaParticipant]

Hi Stanley

Hope all is going well for you and you are enjoying your holiday in Gran Canaria. We love Puerto Mogan, it is beautiful and quiet.

Ian’s FLC rose again and now at 441. He is having an MRI to rule out any bone damage in his spine. He did have a cold and he also stopped taking tumeric. I wonder if this is related to the rise in his FLC. All other bloods, kidneys etc are fine so no treatment yet and back to the consultant in 5 weeks.

Maureen

[bandityogaParticipant]

Hi Peter

When Ian relapsed the first time, he started treatment when is FLC reached 1000 but as you say, every consultant is different. I did ask about a PET/SC scan but the consultant thought it was too early and wouldn’t show up very much. If Ian starts to feel pain or there are any changes in his bloods, kidneys etc then we will press for a PET scan.

I watched a video from an info day which one of the consultants stated that there were no benefits from starting treatment early.

Maureen

[bandityogaParticipant]

Hi Susie

My husband has been on Zometa since 2012 but we did mention it to her today and she has now said that Ian can now have it every 3 months instead of monthly. If he relapses then he will be put back on monthly Zometa.

Hope this helps.

Maureen

[bandityogaParticipant]

Ian’s FLC rose by 70 this month but all other bloods, kidneys etc ok and he is feeling well with no pain so no treatment yet. The consultant says that if the FLC rise steadily he could have some time yet until treatment starts, so we are relieved.

He will be monitored monthly until any changes occur.

[bandityogaParticipant]

Hi Rebecca

Good to know you are still in remission, we’ve been on this journey around the same time.

I am staying positive and as you say the consultants will find a treatment which will work for Ian. There have been a lot of advances in Myeloma in the last few years and more treatments so I am hopeful and we are living life to the full before treatment starts.

I will let you know the results of his tests.

Maureen x

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