[tmcintyreParticipant]

Hello,

My husband was diagnosed in December 2016 and followed the same route as your husband – 6 cycles of VTD which gave excellent blood results but bone marrow biopsy showed his levels were still the same., 2 cycles of Cyclophosphamide followed by Ninlaro and Revlimid which got him ready for SCT which he had in January 2018. After the recovery from SCT he was put back on Ninlaro as maintenance. Revlimid was not started again as he developed a rash at the end of his last cycle before SCT.

A few months ago he was told he was in complete remission. Unfortunately this month he was told that his light chains were rising again. His specialist nurse has been looking after him but the next appointment will be with the consultant to discuss the next course of action. His nurse has been saying something about a new analyser and everybody’s results showing higher levels so hey ho, we don’t know whats happening.

He does suffer with numb feet and slight tingling in his fingertips which can also be attributed to his Type 2 Diabetes which he was diagnosed with this year. He has put on a lot of weight and isn’t very active and its a bit of a battle to help him with his diet .

The latest results have pulled him down but on the upside his kidney/liver functions are all good and we are hopeful that a tweak in his treatment will help keep the light chains down.

Wishing you all the best,
Teresa

[tmcintyreParticipant]

Hi Tony,

My husband has been on this journey since xmas 2016. Induction treatment didn’t work for him but he was lucky to get a trial drug – Ninlaro (Ixazomib) which worked almost immediately and got him ready for SCT. He is still on it as maintenance treatment, reason being as he took so long to respond initially. He was told in June that he is in complete remission (remission hadn’t been mentioned before)

Its been quite exhausting for him so he took early retirement. Sadly I’m not sure it was the right decision as he seems to be spending his days either sleeping or watching tv. He has put on a lot of weight which is causing problems too but he doesn’t seem to understand that. I think depression might be at the root of it. Still, we have our first grandchild due any minute and I think that will give him a new lease of life.

Good luck on your journey, there are so many good drugs available now and treatment is not too harsh on the body. The rest is up to you and how you cope with life. AS you have read, some people can get back on with work and life, if they’ve a mind to.

Teresa

[tmcintyreParticipant]

Hi,

I tend to agree that we should let the experts worry about the blood tests but Myeloma UK have an info guide about blood tests

https://www.myeloma.org.uk/wp-content/uploads/2018/05/Myeloma-UK-Myeloma-An-Introduction.pdf

best wishes
Teresa

[tmcintyreParticipant]

Hi,

My husbands transplant coordinator sent a schedule of vaccinations to his GP and they phoned him to raange the appointments. They initiated Flu and Pneumonia jabs too. Quite a different experience,

best wishes
Teresa

[tmcintyreParticipant]

Hi,

When my husbands neuropathy started to trouble him the dosage of Velcade was reduced and he was prescribed Amitriptyline. These eased the symptoms a fair bit. Always tell the consultant how the treatment is affecting your husband as they can adjust it,

best wishes
Teresa

[tmcintyreParticipant]

Hello,

My husband had investigations due to constipation and was checked for bowel cancer. He too was anemic. It was a shock to learn he had Myeloma. Two years later he is still on maintenance treatment and doing quite well despite constant back pain which he has learned to live with and mobility problems which I think are exacerbated by a big weight gain.

If your brother is diagnosed with Myeloma he’ll be started on treatment very quickly and will soon begin to feel better

all the best
Teresa

[tmcintyreParticipant]

Hi,

My husband has his SCT in January 2018. He didn’t respond to initial induction treatment of VTD so had two cycles of Cyclophosphamide and Dex followed by three cycles of Revlimid/Dex/Ninlaro (trial drug). This had good results so his consultant decided to keep him on Ninlaro and Dex for the forseeable future as “maintenance” (he didn’t go back on to Revlimid as he devloped an upper body rash at the end of his third cycle) Presumably he will continue with this until it either stops working or he can no longer tolerate it.

Hope all goes well with you.

Teresa

[tmcintyreParticipant]

Hi
My husband has soluble Dex too, Glensoludex. The hospital pharmacy just switched him to it. Apparently adding squash to it makes it taste nicer.
Teresa

[tmcintyreParticipant]

Hi Tom.

Glad to see your “onwards and upwards” back. I was on the Facebook group but found I was compelled to be checking it several times a day so decided to come off it. The death of one of the regular posters was the final straw,

Teresa

[tmcintyreParticipant]

Hello,

Some hospitals have support groups and there is a section on here where you can look for anything in your area.

Support Groups

What area is your mum in, there may be members on here who would be happy to get in touch with her. Also if she is a Facebook user Myeloma UK have a support group on there where there is always someone to talk to.

All the best
Teresa

[tmcintyreParticipant]

Hi Stu,

How is your mum getting on?

best wishes
Teresa

[tmcintyreParticipant]

I’m so glad that Dr Jenner is looking after your mum now. He is a “facts and figures” kind of man so may come across a bit unsympathetic but his approach suits us.

Sending best wishes to your mum, she sounds amazing.

Teresa

[tmcintyreParticipant]

Hi Stu,

Such a bad time for you all. Are you able to wrap your mum up and sit her in the garden to enjoy a bit of sunshine. She must be a very strong person, I hope she is pain free,

all the nest
Teresa

[tmcintyreParticipant]

Hi Stu,

I am sorry to read your update. Do you know the results of the bone marrow test? My husband had 50% abnormal cells in his bone marrow when diagnosed and it was still 50% after his induction treatment of Velcade. Dr Jenner obtained a trial drug for him which then got him ready for SCT.

I remember your mum had Acute Kidney Injury – did the hospital help her to recover from this? Have they given you any indication of timescales?

Dr Jenner told us at the beginning that Myeloma is not curable but very treatable. Could you ask your mums GP to refer her case to Dr Jenner for a second opinion.

All the best
Teresa

[tmcintyreParticipant]

Also have a look at the SCT forum on Macmillan’s website.

https://community.macmillan.org.uk/cancer_experiences/stem_cell_transplants_for_blood_cancers/discussions

Teresa

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