[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

[tmcintyreParticipant]

Hello Leah,

Myeloma is very treatable and people can lead a fairly normal life with it. If your dad is being started on treatment he will be monitored closely and any problems will be dealt with straight away. My husband mainly had allergic reactions which caused upper body rashes, easily dealt with by tweaking his medication.

At the start of diagnosis you and your dad might feel overwhelmed by it all, there might be a seemingly endless round of appointments and daily tablets to get used to. It does settle down and becomes routine. My husband used to hate taking tablets, wouldn’t even take paracetomol, but he now accepts it is a very small part of his day.

There are lots of booklets you can download or order from here which help you understand what is going on.

All the best
Teresa

[tmcintyreParticipant]

Hello,

I can’t answer your question but I can tell you that my husband didn’t respond to induction treatment until eventually they found something that did work. It took 11 months to get him ready for Stem Cell Transplant. I think your husband will probably be tried on a different combination of drugs, there are several options available.

My main reason for posting is that there is a UK Myeloma Support Group on Facebook where there was a member who was also being treated in France. I think he left the group for a while but his wife was still posting. It might be worth your while joining the group.

all the best
Teresa

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