My dad has passed away after 5 years of myeloma. He was so positive with his illness and didn’t let anything get in the way of living the life he wanted to live.

He went through all sorts of treatment and was always getting the cancer into remission. We thought he would outlive us all which is why we were so shocked. Our whole family still…[Read more]

Your husband will have plenty of birthdays ahead of him, dont you worry about that. I’ve been living with this for nearly 5 years now. They are always bringing out new chemo things so the average life span continually stretches out. What you need to do now is focus on each day and treat every one as a bonus. Make the most of every day…[Read more]

You are following in my footsteps. I’ve done the Revlamid/dex and then just Revlamid to keep the cancer at bay. It stopped working then I had a stem cell transplant. I’m now on my 6th session of Pomalidomide and Dex. I take 20 dex pills once a week as early in the morning as possible. I also take one Pomalidomide pill each morning for…[Read more]

Like you, I was pretty shocked when my cancer came back as I was hoping for remission a bit longer post SCT. I had my SCT last August and the cancer returned in July. I’m now on Pomalidomide and Dex. I take 20 steroid pills once a week and get about two hours sleep that night. The pomalidomide has given me no problems so far. I’m on…[Read more]

Good luck

Scott

I just noticed your post. I developed cataracts in both eyes and had to have operations to sort them out. I can see much better now long distance but still need reading glasses.

Good luck

Scott

As you say every day is indeed a gift and must be enjoyed to the maximum.…[Read more]

I’m reading your posts with particular interest. My SCT has stopped working and it looks like I’m going onto Pomalidomide and Dex. Have you been on that for the past eight months? What nasty side effects have you experienced? Has your consultant got anything on reserve if and when that mixture stops working?

Keep fighting

Scott

Cheers

Scott

No its not a trial. My kidneys are only working at about 20% and as such I’m not eligible for any trials. The drug companies want to test on fit !! myeloma sufferers only. People with impaired kidneys may have an adverse effect on any tests.

I’ve been through revlimid, lenalidomide, bendamustine plus the sct. I’m fast running out…[Read more]

I’ve not been on the forum for a while as I’m busy working my way through my bucket list. I know exactly how you are both feeling. I had my SCT last August and got complete remission. However two weeks ago I was told the cancer is on the way back as my light chain reading has jumped to about 250. I had another blood test and am due…[Read more]

Are you sure you don’t have a broken bone? Myeloma has given me osteoporosis in my spine and I broke a bone in 2010. I thought it was just muscle problems but it didn’t get better and in the end I got it checked out to discover not only a broken bone but this disease as well.

All the best

Scott

I’ve been worrying about you as you were so quiet for so long. I’m really glad you are still relatively OK. I thought my kidneys would be worse from the stem cell transplant, but so far thank goodness they are holding up. I’m due to see Prof Schey on Monday for an update. I’m hoping that between curcumin and oxygen, I will stay in…[Read more]

All…[Read more]

Good luck in your fight against this horrible thing.

Scott

My kidneys have leveled off at where they were when I started the SCT process ie at about 20%. They actually improved slightly while I was in hospital having the SCT. They said it was because I was on so many drips that the kidneys were well and truly flushed. There was never any mention of dialysis. Funnily enough I’m due to go to…[Read more]

What a huge disappointment that your Myeloma is creeping back. You were only telling me recently about taking curcumin to help keep it at bay. Have you stopped taking it now or are you sticking with it? I’ve only just started to take it and am hoping I might get two or three years remission. I’m on 1 pill a day at the moment but will…[Read more]

I’m really really sorry to hear your bad news Tom. Its like living with a time bomb. You can never forget that one day it will rear its ugly head again. Last time it came back for me I was put on Bendamustine. It was certainly better for me than Velcade. I’m still suffering from the peripheral neuropathy I got from Velcade back in…[Read more]

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

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]

All the best

Scott

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]

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]

Cheers

Scott

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

Good luck.

Scott

I'm due to go to the hospital on Monday so I'll find…[Read more]

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

As the song goes, things can only get better…

Keep fighting.

Scott

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]

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]

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]

Good luck.

Scott

All the best

Scott

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]

All the best.

Scott

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…[Read more]

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…[Read more]

Good luck with your fight.

Scott

I'm doing fine on the Bendamustine. Low energy and I get out of breath quickly but I think thats more to do with my dodgy kidneys. Hope you continue to do well on the velcade. It nearly killed me – I was hugely sick, had the trots, lost loads of weight, could barely walk or talk, fainted a few times, felt the cold badly, got peripheral…[Read more]

Do you see Prof Schey?

He has been looking after me for the past two years. I haven't had the SCT due to dodgy kidneys. Don't worry as he has been able to keep me going without it. He has put me on a new chemo regime recently as the cancer readings were going up again, but revlamid maintenance lasted for a year. I'm on…[Read more]

I hope you are coping OK with the new drug regime. I didn't do very well with velcade so I can only hope you have more luck. Keep fighting and keep going. You are an inspiration for me and probably a lot of others as well.

Good luck

Scott

I've just logged on again. To answer your question, I'm having no problems at all with the Bendamustine. I don't like the steroids, but who does. The dex is only once a week so I can cope with it. Hopefully the Bendamustine etc will get the light chain readings back down again, but then what? I don't fancy the Stem cell transplant…[Read more]

Glad to hear you are on the mend. I'm on Bendamustine, thalidomide and dex. I'm due my third bash of Bendamustine on Monday when I will find out if it is reducing the light chain readings. If not then maybe there is something else they can try. It was really tragic news about Paul I keep thinking about him. He was only in his…[Read more]

Well done to you. Coincidentally I have just come to my anniversary as well. Its now two years for me. As you say life is a roller coaster. I'm back on chemo treatment as the light chain readings had headed north again. Hopefully the new treatment will sort it out again. Thank goodness there are various options to try these…[Read more]