Hi Maureen

We are in Vllamartin, near Torrevieja. Flew into Murcia airport yesterday to escape the English weather. Guess what – it's raining here today. Thank goodness the forecast is hot and sunny tomorrow. My wife is happy though. There is a new shopping centre here called La Zenia Boulevard so she is spending the afternoon there.
Adios
Scott

Many thanks Jo and Ozzy for support. Like Ozzy I'm not feeling too great after all the stuff injected into me. Me and Linda are off to Spain now for a couple of weeks that had been booked. I'll post what happens next. It may be that I won't have the stem cell transplant. Do you know, I'll have mixed feelings. I really wasn't looking forward…[Read more]

Hi Sarah

What a great forum this is. Its so helpful to see what happens to others in the same position. I was at Kings yesterday for my harvest. This followed chemo, 6 GCSK injections plus another one given to me on Wednesday. My reading was only 4 though and as you say it needs to be about 10. I'm also now on a break and will see what the…[Read more]

One other point about the trials. I was told I wouldn't be eligible whatever the trial. This is because my kidneys are only working at 20% and the drug companies want the best results from the trials so don't use people like me. This limits my options in the future.

All the best

Scott

Hello Dai

Its great that you can try something else. Pity you can't have another SCT. Do they not think they can harvest enough cells now. I hope and pray that the new treatment works for you. I'm due to go to Kings tomorrow for my bloods plus some injection and all being well go back Thursday for the SCT harvest process. I guess thats the…[Read more]

Hi Dai

I managed 8 sessions of Bendamustine before it hit my Neutrophils etc and that was that. As I posted the other day, my next step is to go for the tried and tested SCT. I'm due to have a chemo infusion tomorrow as step one towards the harvest. Good luck to you with whatever plan your consultants put together. There seems to be fairly…[Read more]

Many thanks all for the messages of support. My goodness I really hope the harvesting will be done in one day. But I guess if it takes another day or so then it has to be done. I was told it's not easy to read so maybe I will be able to look at my ipad instead.

Cheers

Scott

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

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

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…[Read more]

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

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

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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

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

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…[Read more]