[PatGParticipant]

Good morning all,
I may be jumping the gun here, and I really hope I'm not – but – I have to say that the first lot of VCD did not produce anything like the side effects I was prepared for. 😀 I had a bit of toe cramping Tues night and of course the Dex means the sleep was difficult, but appreciated the extra energy levels produced. Fingers crossed it will stay at this level 🙂
I have had to get a pill organiser though as otherwise I would never keep up with all the other stuff you have to take. Made me feel like an old lady and I know I am 67 but have never considered myself in the 'old' bracket, but to compensate for those feelings I have just put a colour on my hair to brighten things up a bit! I refuse to be old until I am at least 80 I will take heart from the Jenny Jones poem 'When I am an Old Woman', although I have to admit I DO wear purple, but only because I like it 😉
Hope everyone is faring well and keeping cheerful.
Love and hugs
Pat
xx

[meganjaneParticipant]

Hi Pat,

I am so glad to hear that things are going so well. My husband Phil is also using a pill organiser to keep track of things, it is amazing how easy it is to forget if you have taken everything, especially when there are so many to keep track of!:-) Phil has also been surprised by the relative lack of side effects – long may it continue for both of you!

Megan

[PatGParticipant]

Hi Megan,
It's encouraging to hear that Phil is also getting very few side effects. I echo your thoughts on the long may it continue 😀
Pat

[BADGERParticipant]

Hello Pat

I am 65 and refuse to grow old gracefully I wear purple and bright pink and I dont think a colour rinse comes amiss now and again dont think much differently from when i was 40 only on the days when i had DEX which turned me into a tyrant not on any treatment at the moment things do get a bit better 😉 I had CDT not VCD bit the same I suppose
Keep well
Love Jo x

[PatGParticipant]

Hi Jo,
Nice to speak to someome with the same attitude towards this stupid age thing as myself. It made me laugh when you said about wearing bright pink – guess what I bought today? A bright pink fleecy top to cheer me up now it is getting a bit cooler and pair of purple jeans. Let's hear it for the never get olds 😀
I don't have Myeloma, but AL Amyloidosis, which while not cancer, has essentially the same treatment as the bone marrow produces proteins which attach to organs as opposed to MM where the bones are affected. The journey is the same though. I have had to have VCD as my heart is involved which apparently ruled out CDT but the drugs do the same thing just in a different way. Glad to hear you are not on any treatment now – can't wait to say the same, but with 7 more cycles to go that is a little way off yet.
Look forward to speaking to you again and keeping up to date with fashion tips 🙂
Love Pat x

[BADGERParticipant]

Hi Pat
had a consultant app yesterday wore my purple jeans and a pale lilac fleece
very fetching:-P My bones were not effected but I had renal failure so if its not one thing its another:-(
Love Jo x

[PatGParticipant]

Oh Jo, what a shame:-( My kidneys are affected too, but are so far holding their own. What are they going to do about it?
Love
Pat xx

[BaldersParticipant]

Hi Pat.

It is good to hear that you have had a good experience with your first VCD. My Mother in Law starts today and is very worried about the side effects. She is in a similar position to you in that she has heart and kidney problems as a result of the MM.

Unfortunately, she is in hospital at the moment but we're hoping she will be coming home soon once they stabilise her heart.

I really hope she doesn't get any side effects either.

Good luck with your treatment.

Pia

[BADGERParticipant]

Hello Pat

I see a kidney consultant every two months the only treatment I can have is a small dose of steriod ad a large dose of sodium bicarb kidneys are at about 20% but fingers crossed hanging on
Love Jo x

[PatGParticipant]

Routing for you all the way Jo 🙂 🙂

[clarabellParticipant]

Hi Pat,
Sorry I haven't been on here for sometime I'm just catching up on posts, my Dad was diagnosed with AL amyloid and MM a year and a half ago and you are correct both are treated the same way. My dad had a course of CTD which gave him a complete response. He will be starting velcade in the next few weeks after AL levels have reared there ugly heads again and like you he'll do anything to zap the little b@@@@rds invading his system. He has been told velcade will help with the myeloma as well as the AL. My dad has deposits in his tongue and kidneys.

I will follow your posts regarding velcade effects as any info would be great, if you want to ask me anything I'll try my best to answer as I know AL amyloid patients are few and far between its such a rare condition, My Dad is tired out but still manages to work 2 days a week as he's not wanting to retire yet but he might need to review this as he's going to have a SCT for AL early next year velcade is one step in the process to his SCT.

Good luck and best wishes

Clara xx

[PatGParticipant]

Hi Clara, Thanks for your reply. Unfortunately I was being very optomistic and I have had every bloomin' side effect in the book since then! I also got a chest infection and spent a week in hospital then last week spent a day in hospital rehydrating as the tabs given to reduce the swelling in my feet and legs were taking too much fluid out and left my blood pressure dangerously low. The consultant has reduced both the dose of velcade and dex to once a week and also reduced the dose. Having had the second one of the cycle yesterday I do feel that my body is handling this much better. I am very tired and weak and at 67 feel that work can wait until I am stronger. I make the most of my dex days when my appetite improves and I have more energy (well at least I feel I do)and am able to little jobs around the house. It feels like an experiment to get the right dose for each individual and velcade is still an experimental drug so I suppose we should expect that. Once they get the correct dose for your body it is not so bad. Having said all that there has already been significant improvement in my protein levels (down to 1) and a marked improvement in albumin levels – so something is working. 🙂 From reading the posts on here velcade is given as a second line treatment for MM and first line when there is cardiac involvement for AL. I wish your dad the very best of luck with this and hope they get the dose that suits him quickly. Do tell him to let the consultant know about any side effects as this may need adjusting. The sooner he is at the right stage for SCT the better.
Send him my best wishes and I hope all goes well.
Love and hugs
Pat xx

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