[scott9Participant]

Hi Colin and Vicki

No I chose maintenance when I was cleared up first time round but it only kept the cancer at bay for 11 months and then the readings went upwards again. I'm feeling in a better frame of mind for it now so I'll give it a go and see what happens.

Thanks also to Tony and Tom for the support.

All the best

Scott

[scott9Participant]

Well if there is a good reason for him not to have the SCT then maintenance is certainly an option if you have private cover. I was on Revlamid as maintenance for a year then it stopped working. I would ask if I were you.

Good luck.

Scott

[scott9Participant]

Zometa is not maintenance for the cancer. It is to help with the bone damage caused by the cancer. Mind you, I'm not even on that due to my having impaired kidneys. Zometa can cause damage to your kidneys and as mine are only working at about 20% there is not much room for further damage.

I'm due to go to the hospital on Monday so I'll find then out what might happen to me next. I know the SCT route works for most people but you do have to go through the wringer with that and if time is short, I want to be able to enjoy every day as best as possible. The SCT will make life difficult for some months. Ah well, if it has to be done then so be it.

All the best

Scott

[scott9Participant]

My light chains won't come down any further as I won't be getting any more chemo treatment now.

I did get maintenance treatment when I stopped the first round of treatment. I was on Revlamid for about a year and then the cancer came back again. I opted not to have the SCT at that time. Maybe now though.

All the best

Scott

[scott9Participant]

This is a tough old disease. You and Ian have my sympathy. If its any consolation, my light chains are down to 137 and that seems as good as it will get. I now have to cope with low (0.6) neutrophils and the associated bad feelings that go with it.

As the song goes, things can only get better…

Keep fighting.

Scott

[scott9Participant]

Hi Jo

Really sorry to hear you have been stuck in hospital. I thought maybe you were on holiday somewhere. Not quite the same! I hope you cope well with the Velcade. I've had seven cycles of Bendamustine out of eight, but the final one has been cancelled due to my Neurophils collapsing down to 0.6. I'm not feeling too great. Hopefully things will pick up soon. Not sure what will happen next. SCT may still be an option and to be discussed at next meeting.

Take care and keep fighting.

Scott

[scott9Participant]

Hello Dai

I've not looked on this site for a bit but you and the other fighters are always in my thoughts. Sorry to hear about your unhappy times. If it is any consolation my neutrophils have dropped to 0.6 and I'm not feeling too great. I was due to have my eighth bendamustine infusion on Monday but that was cancelled due to low neutrophils. I was told that my light chains at 137 are as low as they are likely to go. They were about the same reading the last two times. I have read that you are staying in and avoiding everyone. My goodness, I've been out and about and mixing with everyone. I was at a big family gathering Tuesday and Wednesday – 19 of us. We ate drank and made merry. I did my best even though I was feeling bad. As far as I'm concerned, life is too short now to stay shut away. If I can get out, then I will. I don't feel any worse for the experience.

I'm not sure what will happen for me next – maybe SCT.

Take care.

Scott

[scott9Participant]

Good question and one which is troubling me right now as well. My light chain reading is back down to about 130. I've been on bendamustine for the past 7 months and the specialist thinks that this is as good as it will get. I'm due to see him on 8 April as he wants to discuss SCT with me. I'm a bit reluctant as my creatnine is about 300 ie around 20% function. This makes the mortality risk higher as well as the chance of reduced kidney function. Against that is the possibility of medium term remission. I will probably take a chance and go for the SCT as there are no trials right now for maintenance therapy.

Good luck

Scott

[scott9Participant]

Hi Tom,

My local cancer support centre directed me to the Citizens Advice people. They helped fill out the forms for me. The forms are pretty complicated (to me anyway) and I couldn't have done it without their help. My suggestion is go to them for help. I didn't have a clue what I was entitled to and they sorted everything out for me.

Good luck

Scott

[scott9Participant]

I was on revlimid which is the trade name for lenalidomide. This is a derivative of the thalidomide drug. It worked for me for about a year and then the light chain readings went up again. I'm on bendamustine now to get it back down and then goodness knows what for the future. Stem cell transplant always an option I suppose.

Good luck.

Scott

[scott9Participant]

I've got light chain myeloma as well. I've had it now for over two years. I got partial remission for about 1 year and I'm on Bendamustine now to try to get the light chain readings down again.

All the best

Scott

[scott9Participant]

Hello Dai, I've not looked on the site for a while. Its always reassuring to see your posts. Keep going old chum. You tell a great story. One question. What do you do about eating during the long visit to the hospital?

I'm due my next bash of bendamustine on Monday. Hopefully it will start to have some effect soon. This drug seems to be flavour of the month these days as lots of us are on it. I guess it must work. Either that or its cheap!

Happy New Year to you and anyone else reading this. Lets hope we all make it to next year!

Scott

[scott9Participant]

Thanks Jo. I'll post a note as to what happens in the next couple of months. Hopefully it will be positive.

All the best.

Scott

[scott9Participant]

Hi Dai

I had my fourth infusion of Bendamustine on Monday. My bloods were OK so the prof has booked me in on 7 Jan for the next session. My light chain reading is at 330 so not as high as yours as yet. I'm hoping that with enough Bendamustine the light chain reading will go into reverse soon. I'm not having any problems so far with this. I also take two thalidomide pills every day. This hasn't affected my peripheral neuropathy. I got PN when I was on Velcade and it hasn't gotten any worse (or better) since then. I have to take ten dex pills once a week and don't get much sleep that night. Thank goodness its only once a week for that.
I get a cannula in my vein each time I have Bendamustine and as its only once every four weeks my veins are coping OK so far.
Good luck with your treatment and hopefully you will be OK with it.

Scott

[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

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