Dear Gill,
So sorry to hear your news. I am glad you were able to be there at the end with Stephen. There is a lot to do now which will keep you busy but remember you need some support for you once the immediate things are dealt with.
Take care,
Jillx
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 of yourself – Howard would want you to do that for sure,
Love, Jillx
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 quite depressed at the start of the treatment, I think this was due to relapsing and having to face more drugs. Could this be the problem with your Dad? – depression can result in fatigue and loss of appetite. Is he having the Velcade subcutaneously – Mum had this and it seems to have less side effect than the intravenous route.
The dex was the worst bit for Mum, it did make her quite confused and weepy. I have really noticed how much more cheerful and lively she is now the treatment has finished.
All the best,
Jill
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 with the condition have travelled to China or Mexico for what is described to them a stem cell treatment using umbilical cord blood. The costs of the treatment have been enormous – £50,000+ but for many of them the benefits appear to have been minimal and the 'science' behind the treatment is not supported by regular specialists in the US or UK. But as we all know the opportunity for a 'cure' is hard to deny especially when it is your child that is suffering. Unfortunately this can be exploited and it seems to me that a lot more research is needed as John says.
All the best,
Jill
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 the levels of blood sugar. I think what you are suffering is called steriod diabetes as a side effect of the dex but it would probably improve when you stop the dex. I am sure the dietician will tell you how to help it with diet.
Take care,
Jill
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 on reducing her MM levels so hopefully your Mum will find the same. Mum was a bit low about having to have more treatment at first but we are into the swing of it now, she lives alone so I take her to the hospital each week, the worst part is waiting around there! The main aim is to make sure the symptoms from MM are reduced (pain, anaemia etc) but without making them feel too rough from the medication I think. What other drugs does your Mum have? If she has dexamethasone as well this can make your moods very changeable. Lots of fluid helps.
Hope things continue to go well,
Jill
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 two more. She previously had CTD (tablets) which gave her a period of partial remission for a couple of years and did suffer with neuropathy and other effects from the thalidomide.
She is doing very well on the Velcade at the moment, no real side effects apart from a bit of up and down mood from the dexamathasone. After two cycles her PP levels have dropped and so it is working well and her consultant is very pleased. The worst bit is the weekly trip to the hospital for the injection – seems to take ages although the injection only takes a few seconds to administer! Our worst experience so far was a three hour wait….not ideal for an 83 year old and difficult for me to manage with my work!! But at least the hospital are keeping an eye on her as Eve says, previously with the CTD she was just sent home with a big bag of tablets.
All the best to your Mum, let us know how she gets on,
Jill x
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 to do well,
Love, Jill xx
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 monitoring every three months but her paraproteins (which are the indicators of myeloma in the blood) started to rise slightly (started at 17 and rose to 36) so her consultant started her on course of chemotherapy which was tablets – Cyclophosphamide, Dexamethasone and Thalidomide (CDT for short). You Mum's consultant will assess the paraproteins over a period of time to see if they are rising and there seems to be different approaches – some consultants will begin treatment earlier with the aim of tackling things before any symptoms develop. If your Mum needs treatment they will assess what to do on the basis of her general health, this is normally about kidney function, bone damage, anaemia etc. After initial adjustments to the various doses my Mum had a good response to the CTD and was in plateau for about two years which meant the disease was stable. She has recently started a course of Velcade injections as her levels started to creep up again (from 12 to 17) which is inevitable really as there is no cure for myeloma. With elderly people the aim is to keep them as symptom free as possible without giving medication at levels which cause unacceptable side effects. You mention anaemia – my Mum had a small blood transfusion this week for that and she is feeling very much brighter as anaemia can make you feel very low. Iron tablets are not the best option as they cause other tummy troubles. Mum is now also having a bone strengthening infusion (zoledronic acid)once a month which helps to bind calcium to the bones and keep them stronger – this is actually a very useful thing for all elderly women).
So there are lots of things that can help if the disease progresses and they are all available even to older patients provided they are fit enough to cope. In terms of long term outlook I believe it used to be much shorter but all the new treatments make a big difference and certainly my Mum is still reasonably fit and health, mobile and doing very well for her age.
Hope this helps but do ask any questions and I will help if I can! Remember to look after yourself as well as it can be hard for carers too.
Take care,
Jill
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 best not to ask….!
Jill
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 injections. She is still doing fine at the moment.
Interested to hear if you find out any more details,
Love,
Jill
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. She is a very emotional person so gets teary very easily at the best of times!! However, she is doing well and is really very good for 83. The hospital seem to make up the drug even before they do her bloods so it is quite a quick process, the longest bit is getting her from the car to the clinic!
Do let us know how Stephen's blood results are when you get them on Wednesday.
Love,
Jill
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
