Hi Gail,

So sorry to hear about Howard, my condolences to you. Min is right you should think about joining a group of some kind to support you, family are great but as you say they are dealing with their own grief. You mention feeling angry and this is Ok, but it is better to have a way to let this out with others who understand.

Take care…[Read more]

Hi newbie,

Sorry to hear your Dad has had a relapse. My Mum has just finished four cycles of Velcade with dex after she had a relapse. First, just to say that the treatment has worked well and Mum is now back in plateau with pp levels reduced and stable so off treatment for a while.

Mum didn't suffer too much with the Velcade, but she was…[Read more]

I don't want to be the one with the bucket of cold water but I would just like to add a note of caution here. My son has a congenital disorder which means part of the centre of his brain is missing affecting various organs such as pituitary gland, optic nerves etc meaning lifelong medical intervention is required. Some of the parents of children…[Read more]

Hi Keith,

High doses of steroids do cause fluctuations in blood sugar levels as they affect the adrenal function. I know a bit about it as my son has no pituitary gland so has to take a whole range of replacement hormones, one of them is hydrocortisone (a steriod) which replicates the action of cortisol (from the adrenal gland) and so controls…[Read more]

Hi Rachael,

Glad to hear your Mum is doing better, it sounds like she is having a similar treatment to my Mum who is 83 and was diagnised with MM in 2007. Mum is having subcut Velcade, has had three cycles of one injection a week over four weeks with one more cycle to go. Just to say that even after one cycle there had been a very good effect…[Read more]

Deborah,

I get it by email so hopefully you will too now you have joined.

Jill x

Hi Deborah,

My Mum (83, diagnosed with MM in 2007) is currently having Velcade treatment, she has it sub cutaneously once a week together with dexamethasone on two days a week. She also has anti viral and anti fungal medications (prevents shingles and other nasties) as part of the treatment. She has had two 4 week cycles and is due to have…[Read more]

Hi Tina,

Glad to hear your good news. My Mum (age 83!) also had good news this morning, after just one cycle of sub cut Velcade her PPs have dropped from 18 to 14 and light chains from 4000 to 2000. So we keep going – she will have a total of 4 cycles. Consultant very pleased and she has had minimal side effects so far.

Hope you continue…[Read more]

Hi Michelle,

So sorry to hear your news but glad you were with her at the end.

Take care,

Love,

Jill xx

Hi Lexi,

My Mum is 83 and was diagnosed in 2007. She did not take the news well either and was quite depressed for a while, particularly as my stepdad had only just passed away. She also finds it hard to understand the disease and gets a bit confused so she needs a lot of help with it all from me. She had no treatment for a while, just…[Read more]

Hi Ellen,

Thanks for this interesting post. Maybe this is a stupid question but if Velcade is not licenced for subcutaneous use in the UK how come some patients like my Mum are receiving it in their local hospital this way? Her consultant seemed to have no trouble arranging it and I know there are others there having the same?

Maybe it is…[Read more]

Hi Mari,

Glad to hear Stephen's result were good. Mum had her injection yesterday as usual, last one of the first cycle and they booked her in for the next cycle, no mention of problems with sub cut administration. Could it be a local problem in your area? I hope there isn't a wider issue as i am not sure Mum would cope with intravenous…[Read more]

Mari,

Thanks so much for your reply, I am glad the velcade is going well for Stephen. I was pleased the sub cut option was available for Mum as I don't think she would have coped with IV treatment. Agree that the dex is the worst bit, Mum is very cheery on the Thurs and Fri after her injection on Wed, but by Sunday she is a bit low again.…[Read more]

Thanks Dai and Tom for your kind words. Dai – peace of mind is difficult but I work on it! Tom – I will pass on the cuddle which she will enjoy! I will let you all have an update on how things go when her bloods are checked next month – I hope it will work well for her.

Love,

Jill

Hi all,

Sorry, I don't post much but I do read regularly and find all your posts and information really helpful as I am carer for my Mum age 83 who has MM. She has now had three Velcade subcutaneous injections (once a week) and so far it seems to be going OK, not much in the way of side effects apart from those from the Dexamethasone which she…[Read more]

Thanks for all the suggestions here, very difficult to encourage my Mum (age 83 with MM) to drink enough as she lives alone, I just remind her whenever I speak to her. Elderly people are not good at drinking enough anyway and I certainly notice it even in her voice on the phone if she is getting dehydrated.
David – I understand that tea and…[Read more]

Min,
So sorry to hear your sad news. My thoughts are with you.
Take care,

Jill

Gina,

I was wondering how your Mum is getting along – haven't seen any mail from you for a few days? Hope all is well,

Take care,

Jill