[scott9Participant]

Hi Dai,

Many thanks for your good wishes. I had no idea how Bendamustine works, but Keith has provided a pretty comprehensive answer to that one. I also have no idea what happens after the Bendamustine. I'm due to see the Prof for my next Bendamustine infusion on Monday so I will ask him then. Last time I asked him, he said he was considering the options which included SCT. I was actually thinking of going that route until I saw that poor Paul died shortly after his SCT. It is a lot more risky for me as my kidneys are badly impaired.

All the best

Scott

[KeithH17Participant]

Hi Scott

Haven't you not yet had an sct ? You're right to be concerned about your kidneys because it does put a lot of strain on all your organs but in particular the kidneys. If they thought a transplant was a possible option thorough tests would be done 2-3 weeks before the procedure went ahead. I went in for a day to be tested before both transplants
but the second one only lasted 7 months. It does feel great not having to take any drugs at all and after my first sct
which lasted 2yrs 4 mths my visits to the hospital were at 6 month intervals as the disease was under control and the only drug I took daily was Bonefos for bone strengthening. This was fantastic but then one morning I woke up and could hardly move and that was the start all over again. The sct is great if it works but after you've had one and then relapse you never ever attain that same level of good health. If you get 18mths-2yrs that's an excellent result,approaching 3yrs and more is better than winning the lottery and nearly as unlikely. I know the doctors all wax lyrical about the sct but the future of the MM fight must be in the development of maintenance drugs or even antibodies that could be injected into the bloodstream to help the immune system fight the disease. Embryo research also looks an interesting option if we can keep the opposition quiet. As far as I'm concerned Scott they can throw what they like at me and I'll take it all because I just want to live and I'm pretty sure you and lot's of other sufferers feel the same. The one thing we don't want to hear is "there's nothing else we can do"

Stay well mate and keep fighting.

Keith.

[PerkymiteParticipant]

Hi Keith, really enjoyed your post. Keep going buddy just keep going.

Kindest Regards – vasbyte

David

[AliParticipant]

Hi Andy

I agree with the others, not the best news – but we never know whats round the corner. Good news is the RCD seems to be pecking away at the pps. Stay positive Andy and keep up the good fight.

I think Vicki might be right about the meal and wine – you and Steph deserve it:-) Just dont shout too loudly about the drugs;-)

Love Ali x

[mhnevillParticipant]

Hi Andy

Like the others, I am gutted thst you can't find a donner match. However, I'm glad the drugs are working. The donner transplants don't sound like a walk in the park, so maybe, with your battered bone marrow, going other routes may not be such a bad thing, IF they can find a combination that whacks the blasted MM into touch.

Very best wishes to you and Steph.

Mavis x

[Author]

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