These drugs, and Revlimid especially, are routinely used for myeloma patients and therefore I think that the approach by Myeloma UK to get these drugs funded from the NHS normal drug funds instead of the special CDF fund is a correct one. I hope they will get this approved in the next two months!

Hi Susie

I did not have constant pain but what I would call an annoying and painful ache while walking, bending etc. Sometimes my femur and hip were aching during night when sleeping on one side for too long. I would not worry about it (easier said than done), and maybe you can take some painkillers for it? Best

Hi

Unless you do not mind taking drugs continuously (maintainance), it is recommended to have SCT as it deepens your response to the induction therapy and should delay relapse. Like you, I had VCD treatment first which dropped my PP values from 60 to 30. After that, I had quite a few cycles of Lenalidomide and Dex that lowered my PPs to under 10,…[Read more]

Hi Susie

Yes, I had similar pains after Zometa infusions! Mine started maybe a week after the infusion and got worse for two weeks before getting better just before it was time for a new infusion. My lower back, left hip and femur were really achy. I always assumed it was caused by Zometa going into bones and taking minerals such as calsium with…[Read more]

Hi Pisces

Sorry to hear about your husband’s troubles. I was wondering, have they scanned his stomach area to rule out plasmacytoma in the guts? If I remember correctly, they are commonly found there too. Best of luck with the treatments

Hi Simon

I remember having similar pessimistic thoughts after my SCT. It must be something to do with your body recovering from all the drugs and treatments and not knowing what to do. Also, you have been concentrating on getting through it all and now after the SCT you have nothing to focus on. However, in my case this passed after about a year…[Read more]

Hi Vicky

So sorry to hear that bendamustine did not work for your husband. I am a bit puzzled why his doctors are thinking of using Mephalan, as it works the same way as bendamustine (see “Bendamustine and Mephalan kill myeloma cells similarly through reactive oxygen species production and activation of the p53 pathway and do not overcome…[Read more]

Hi

Don’t despair yet. Things look bad now but it does not necessarily mean that the disease is overly aggressive and untreatable. In fact, if your sister in law has had only Velcade treatment, it is very possible that some of the other drugs work better in her myeloma and that she will get longer remission. There are plenty of drugs to try!

Hi Peter

Nearly missed your post as it is hidden among the others. I am so sorry to hear that your myeloma cells have changed and seem more unpredictable. Really hoping that the treatment works well for you. Have you tried all the other available drugs? All the best

Hi

Do you mean that your husband’s paraproteins are not coming down as quickly as expected? That is quite common. I had 6 cycles of Velcade, Dex, and Cyclo that only halved the level of my PPs, after which I had 6 cycles Revlimid and Dex. Finally the PP levels were low enough  (PP 5) and I was ready for SCT after a year of continuous therapy.…[Read more]

I am so sorry to hear of Scott’s passing. He wrote several posts here that were always very optimistic and he was so upbeat about life in general. He seemed to live his life to its fullest. I am shocked he is gone. My heart goes out to you and your family in this difficult time.

Hi Vicki

Please ask for another consultant, yours does not seem to know much about current treatments! There is no way that after trying just Velcade and Bendamustine you have run out of options. Maybe the way these drugs work is not right in Colin’s case, so maybe better avoid proteosome inhibitors (Velcade, Kyprolis) and alkylating agents…[Read more]

Hi Tom

The first two cycles of Rev and Dex were the most difficult to me, then it got easier. Although I did not get nausea as a side effect, I did get back pain and headaches like you. Nausea I have had if the blood calsium levels have dropped too much because of Zometa. Maybe you have felt worse because of the infection you have? I am not in…[Read more]

Hi Vicky

I am so sorry to hear that Velcade did not work for your husband. I have similar thoughts as Ali here; how about suggesting the consultant to add cyclo to the Velcade and Dex treatment? Has he been on Revlimid yet, and if it worked, how about using it again? Or trying to get Pomalidomide like Andy? I thought Bendamustine is not used…[Read more]

Hi Andy

That is great news! I have been following your progress and finally things are going so well for you. I have this theory that the more slowly the PPs go down, the longer it takes them to come back after the SCT (mine went down quite slowly and it took a year of chemo to do it, so I needed to make a positive theory about it to keep me…[Read more]

Hi Val

I had swollen ankles too when on Dex, it causes water retention in the body so everything swells up. I returned to my normal shape when I finished treatment with steroids. Best

Hi Dave

I had those too! I never knew what caused them but maybe it was Revlimid. I always thought they were bed bug bites as they appeared in the night, but I got more of them even when I changed the bedding and pyjamas. I had them once on my legs and once on my face. Eventually they just disappeared. They did not cause me any other problems so…[Read more]

Yep, the sickness lasted for 6 weeks for me, even with 3 different anti-nausea tablets. Quite horrible but eventually it did go away! Hope she feels better soon

Hi Peter

I think Dexamethasone is stronger steroid than Prednisolone so that if you take 1mg of Dex you need to take about six times more (6mg) of Pred to get the same effect. Then again, if Prednisolone has the required effect on your myeloma cells then that should be enough.

That is great news Michelle! May I ask you what were your PP numbers after SCT? Was there a steady decline on the numbers or did they just suddenly drop to zero? Hope you’ll have a very long complete remission!