[jillsParticipant]

Hi all,

I haven't posted for a while but do read regularly. I am carer for my Mum (age 83) who was diagnosed with IgA MM in 2007 and went through quite a few cycles of CTD (tablets) during 2008/09. She then achieved a 'plateau' and has been on a small maintenance dose of cyclophosphamide for a couple of years with just regular blood tests. Yesterday at her regular checkup the consultant said the levels of PP were starting to rise again at 17.9 with lambda light chains of 4,000 (at diagnosis these were PP 39 and light chains 10000 but during plateau the readings were PP around 11 and light chains around 2000). He wants her to start having weekly velcade injections (sub cutaneous)for a three/four month period. We have an appointment on Monday at the Heamatology Clinic to go through the details and sort out the consent.
The problem is that Mum is much frailer than she was before the previous treatment and so my concern is about how she will manage, she lives near me but alone and is pretty much housebound. I may need to organise some extra care for her at home I guess, I am very anxious to try to ensure she doesn't end up in hospital due to side effects being poorly managed – this happened at the start of the previous treatment. Her kidney function etc has remained good so underlying health is reasonable.
I know it will be trial and error but would be interested to hear of others experience with velcade therapy particularly in terms of side effects please? I think she will also have Dex and Cyclo tablets.

Sorry for long ramble! Any advice or comments would be helpful….

Thanks,

Jill

[mhnevillParticipant]

Dear Jill

So sorry your mum now needs the extra treatment at her great age. At least she is having it by injection which I uinderstand reduces side effects. Do hope so. It must be a real worry for you, but there are good caring schemes to help. Make sure you speak to the hospital social worker if no one else is suggesting it.

All love to your mum.

Mavis x

[eveParticipant]

Hi Jill
My husband has just finished a course of Velcade which he found ok,except for the hospital visits at your mums age they will only do it once a week,but first it,s blood then velcade and it can be combined with her Zometa so one less hospital visit. It does depend on what hospital you attend some can do the whole process under 2 hrs.some take all day,not very good if you are a sick person,i have yet to understand why my hospital takes all day.:-(

Injection takes less than 5 seconds if it,s subcut,I would push for that,the rest is time making it up,and checking blood,only side effects Slim had was infection in scrotum but your mum will not have to worry there LOL and he suffers with twitchy legs massage helps. Hope this helps.Eve

[jillsParticipant]

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 has to take on two days each week. She also has all the other drugs – anti fungal, anti viral and omeprazole as part of the treatment cycle. The worst part is the trek to the hospital each week which was worrying for her at first. Apparently she is the oldest patient there having this treatment!

Just thought it might be worth giving an update for anyone who is interested in the subcutaneous Velcade treatment.

All the very best to you all,

Jill

[DaiCroParticipant]

Hi Jill,

I am so glad that your Mum is receiving her Velcade by subcut.:-D

The procedure is so simple with no battling for entry for a cannula which can be both painful and stressful… also the side-efects are lessened by up to 50% or so I am told.:-) 😎

I wish her well and you peace of mind.:-)

Dai.

[tomParticipant]

Hi Jill

I am pleased your Mum is doing good on the velcade 😀 and i hope it stays that way.

All the best to you and give your Mum a cuddle from me xxxx

Love Tom "Onwards and Upwards" xxx

[jillsParticipant]

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

[MariParticipant]

Hi Jill,

Sorry I have only just seen your post. My husband Stephen is just starting his 5th cycle of sub cut velcade. He has been having two injections a week, Tuesday and Friday and dexamethasone on the day of the injection and the day after. He has had very little in the way of side effects from the velcade but does notice some from the dex. The dex picks him up but drops him down when he comes off it so Thurs and Sunday are low days with much less energy.He has not experienced the absolute exhaustion he experienced with CDT in the latter cycles. He has been able to work, commuting to London on non hospital days and working at home on the days he is having treatment. He is a great deal younger than your mum of course, 55. He has managed to cut down the time of his hospital visits by phoning ahead to check the drugs are ready. They are happy to accept the blood test from the previous treatment day to prescribe the next lot of drugs. This will not be so easy of course if your mum is only having weekly doses. The treatment has proved very effect however, pp down from 23 to 12 after two cycles, and we get the new pp levels on Wednesday.

If there is anything else that would be helpful, please let me know and in the meantime i hope the treatment continues to go well for your mum and provides some good results,

Much love,

Mari x

[jillsParticipant]

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

[Author]

Posts