[CarolBradley1Participant]

Hi everyone,

Sorry to be a bit glum but I am trying to be really positive at home but know I can be honest on here – after being in remission for a while my specialist tells me it is back and is putting me on PAD. I had three units of blood today. will have platelet treament and Hickman line in on Wednesday and hope to feel much stronger by the time they start the PAD routine on Monday.
This is all moving so fast I feel it is almost as quick as when the levels went up prior to treatment a couple of years ago so I would appreciate any news and or advice from anyone who has had a failed stem cell transplant and then a relapse treatemt:-/ by PAD and what I should be aware of or look out for!
Many thanks in advance and, once again sorry to put a downer on things – your help, as always will be really appreciated.
Many thanks
Love Carol xxxxx

[KeithH17Participant]

Hi Carol,
Sorry to hear the MM has returned. I've had 2 relapses and just had a BMB today to determine whether I've had no.3 which I will know on Thursday when I see the Consultant to discuss the result of the biopsy. The first sct in May 08
gave me 2yrs 4mnths the second only 7 months and I've been on Rev/Dex since June this year. I don't have any experience of PAD but like all treatments most of them have very similar side effects and it's a case of trial and error. I had Velcade for my second treatment which did the trick getting me into remission but only for 7 months.
The first time is nearly always the best but the further down the line you go the MM becomes wise to the treatments making the remission times shorter.

Best of luck Carol and I hope your next remission is more successful and longer than the first one.

Keith.

[BADGERParticipant]

Hello Carol

sorry about the relapse I havnt had an SCT but have just started treatment after a 3year 6month remission its a bit of a b***mmer for us we know it will happen but always hope it wont I have started VCT had two injections already with cyclo and the dreaded DEX but only 20mgs two days running last time i was on 40mgs four days running so not quite as fierce
Good luck with the PAD
lOVE jO X

[CarolBradley1Participant]

Hi Keith
Many thanks for the prompt reply – especially when you are going through the mill at present and over past years.
The general information is great but I suppose just hearing from someone in a similar position helps me to treat the situation in a calmer fashion too!
I'm very reticent about another transplant as mine didn't go too well and I spent a month in isolation and only GMX got the little stem cells moving again and I never seemed to ever get over the 'frail' stage properly.
Anyway, many thanks once again and best of luck with your results on Thursday my fingers are crossed for you.
Very Best Wishes Carol xxxxxx

[CarolBradley1Participant]

Hi Joe
Many thanks and lets keep thinking that yours is going to go on for years to come so relax and enjoy!!
I have heard from a lady in America who was diagnosed thirteen years ago and is still going strong, so it does happen.
Take good care of yourself
Love Carol xxxxxx

[HelenParticipant]

Dear Carol
Very sorry to hear its back, I really hope PAD does the trick for a very long time, look after yourself,
Love Helen

[CarolBradley1Participant]

Hi & Thanks so much Helen

As you can probably tell by the time of my reply I am on DEX and wide awake and twitchy!
Keep well you too.
Love Carol xxxxxx

[PerkymiteParticipant]

Hi Carol, Sorry to hear your bad news. I again have no experience of PAD not even sure what it is! However I suspect I may be heading down your route, or the route next to it, shortly so please keep us informed of how you go.

Kindest regards – vasbyte

David

[eveParticipant]

Hi Carol
I am so sorry Carol,cannot help with PAD,Andy is the one to help you as he had PAD but it did not work for him:-(

Your right,you do not have to put on a brave face here,we do understand,although Slims in remission,the brain says when do we have to start going through this again,never said at home but the thought is there,then I give myself a kick up the backside and get on with things and think,when it happens we will deal with it.So be strong.:-)

Good Luck for today,keep in mind they have caught it early,and they are going to hit it hard.sending you my best wishers for today and Monday.Love Eve

[tomParticipant]

Hi Carol
Aww am sorry you have had that MM kick back in 🙁 but hey am sure your Dr will get something to throw it to the back of your mind pretty soon 😎
Stay Strong.

Love Tom "Onwards and Upwards" xxx

[andygParticipant]

Hi Carol
Sorry to hear that MM has reared it's ugly head again. I had 2 cycles of PAD when I had no response to my original treatment CDT. unfortunately for me I had no response to PAD either or any other treatment till I was put on Revlamid, cyclophosphamide and Dex.
PAD for some reason is Bortezomib (Velcade) , Doxorubicin and Dex. Where they get the PAD from I don't know. You'll need a Hickman line inserted for the Doxorubicin. I hope it works for you. I didn't get any side effects but PN is a common side effect of Bortezomib (Velcade).
Good luck
All the best
Andy x

[adamsp41Participant]

Hi Carol…so sorry to hear that the damn thing is back…I have never heard of PAD but I'm sure your consultants will have your best interests at heart with the next course of treatment…and you will soon be back on the road to remission…stay safe…love Phil

[meganjaneParticipant]

Hello Carol,

So sorry to hear that your MM has made an unwelcome return. My husband Phil has just finished PAD as his initial treatment on the PADIMAC trial which is trying to see if using Velcade upfront could delay the need for a SCT. I am not sure if this PAD would be the same dosage as yours but Phil had six cycles and he did not have too many side effects. He only felt queasy for a few days during cycle six and he has suffered some peripheral neuropathy in his feet from the Velcade. Phil has described it as his feet always feeling cold even when they are not. The consultant reduced the last two doses of Velcade to avoid the neuropathy getting any worse.

Good luck with PAD, I hope it gets the MM under control quickly.

Megan

[CarolBradley1Participant]

Hi to you all
Thank you so much for your very kind thoughts – much appreciated. I knew it was back really by the fatigue and pain levels but we always hope for the best don't we?
Had Hickman in yesterday and will start chemo (PAD) on Monday so may not be on 'air' for a little while!

Best wishes to you all and fingers crossed that we don't have any more news like this too soon.
Chins up!!

Love Carol xxxxxxx

[DizzylizParticipant]

Hi carol,

Just going through the posts and came across yours sorry to hear that you have relapsed, not heard of PAD? But I hope it works for you.

Take care love liz xx

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