Don’t be to down hearted I had a SCT in 2005 and it only worked for just over a year but since with the help of the various chemo available i’m still getting on not to badly some of them worked some didn’t, Velcade gave me the longest remission, unfortunately at the moment I am waiting for the latest one “Panobinostsat” which becomes…[Read more]

I did go to Day Case unfortunately my consultant is away but they got my records checked me over but as I am due to see him next Tuesday gave me some oramorphand and MST i must say it has taken the edge off the pain so it was worth going and next week i can sort it out proper.
Thank you foryour comments ,most helpful
Regards. Pete

I’m confused as what to do, I am waiting to start another drug in April,  unfortunately I had some bad pain in my arm and shoulder so my consultant put me on steroids which did help for a little while but now the pain is getting quite bad at times, I have tried all types of painkillers but nothing seems to work at all. Having had several bone…[Read more]

Just to let you you pom has made me quite ill and have had to stop, but my consultant has a plan B thank goodness, as my MM has started to get active again with pains in my arm and shoulder.

as this new drug is not available until April I am just on Dex which I tolerate quite well and don’t get many side effects except feeling a bit…[Read more]

So now I wait to see if this new drug due soon will be better.

Been on Pomalidamide for 2 cycles but unfortunately it gave me a lot of problems even put me in hospital with infection so was on IV antibiotics 4 days CRP was very high only came down when stopped chemo which made me feel very tired and breathless.

When I saw my consultant at the end of C2 we agreed I would take a month off and decide if i…[Read more]

Been on Pomalidamide for 2 cycles but unfortunately it gave me a lot of problems even put me in hospital with infection

so was on IV antibiotics 4 days CRP was very high only came down when stopped chemo which made me feel very tired and breathless.

When I saw my consultant at the end of C2 we agreed I would take a month off and decide if i…[Read more]

Peter

Yes I know how you feel,  but having MM is like being on a roller coaster as far as and when it likes to get active again I am sure your consultant will have a plan , I have been on this roller coaster for over 12 years and sometime I feel the ride is coming to an end when my consultant comes up with another plan so keep positive, I try…[Read more]

It really is worrying when there is a lack of feedback, perhaps you should try and see the myeloma nurse most haematology dept  have one and normally you should know who it is. I have a phone no of mine who I can contact if I have any problems or queries.

Yes Andy my consultant is really switch on, he has now been treating me for 11 years, its not always a easy ride as you know but I always feel he does the best for me. i’m afraid I am one of those that ask many complicated question i just put my trust in him, he always explains when things are going good o…[Read more]

Looks like my bloods have recovered to start cycle 2 of pom, but he’s has cut the dex in half , the only side effect I was getting was bad night sweats, strange with most users it seems to keep them awake but I don’t to be getting that problem yet, in fact it makes me quite tired. Still only time will till the further down the line

Hello Andy & Vicki

It looks as if it pom is working to well, as my bloods are all over the place, Had to have a BT last Thursday so feeling a little better they were tested yesterday and have greatly improved but now seem to have a bout thrush.

I think all along it was his plan to try bendamustine first but as it did not improve things and…[Read more]

That is some number of cycles, it looks as if I have run out out other options and have just started cycle 1 on Pom/Dex so I hope it works as well for me.

Diagnosed in 2004 have survived on various regimes of Velcade,Revlimid, Bendamustine and the horrible Dex which seems to have a mind of its own.

wish me well (EDIAG)

Peter

I am also on Zometa and currently undergoing com dentistry but only fillings, I know that anything that involves the jawbone (ie extractions) have to be done at the hospital dental dept. Most dentists know this and if you are on Zometa and tell you. If this is the same for all hospitals i dont know So I would speak to your myeloma…[Read more]

Side effects a bit weird tired, bit of nausea, but the biggest problem is the pain in my back  for which I seem to be taking a lot of morphine but in general I’m doing reasonable ( well must be every time I see one friends they…[Read more]

<address>Side effects a bit weird tired, bit of nausea, but the biggest problem is the pain in my back  for which I seem to be taking a lot of morphine but in general I’m doing reasonable ( well   must be every time I see one…[Read more]

I live in Exeter and as soon as I was diagnosed i saw the consultant the day I was told and he did a Bone marrow biopsy the same day. The Heamatology  Dept at the local hospital is second to none.

Early days yet just had first cycle of Bendamustine, other problem is back pain using all sorts of pain killers but only helping a little think I will have to take it up on Tuesday with consultant On Tuesday.

Other drugs used so far Velcade, Revlimid, both have worked and given periods of remission but second time around were not being…[Read more]

osseous growing  outside the bones in the chest area……so my next treatment is bendamustine which started last week so just hoping it works………..the only way to find out is another ct scan in a couple of months.

other pr…[Read more]

its going fairly well except for some back pain so fingerers crossed…….

Peter

I get my HBO from the local MS therapy centre I go every week, but I suppose I am fortunate as my wife works there and I also help in trying to raise funds to keep it going.

I seems to keep me going been doing it now for 8 years, has it helped !! think it keeps me going as do all the treatments I get from our excellent hematology…[Read more]

What a strange thing is myeloma, everyone seems to have different experiences, I have just finished cycle 4 of Velcade, cyclo, and prednisolone with only side effects are an aching back plus the usual so far, so I must count myself fortunate.

Last month when I saw the consultant he was going to stop treatment as according to my…[Read more]

I can’t make up my mind about gabapentin, I have been taking it for several years following shingles and sciatic nerve damage, but lately it has been giving me some bad side effects one is muscle spasm in my hands and neck  especially at night which prevents me sleeping if  I stop so do the shakes so I haven’t taken it now for a month o…[Read more]

I think its a good idea to go for the SCT, I know some can get a good remission from it.

I also had a vertebrae collapse in the thoracic area with wqs very painful at the time, but as it did not cause any damage all I had was 5 sessions of radio therapy and lost a bit more in height was 5’11” now 5’9″ 🙂 so tell Colin hes not a…[Read more]

I don’t mind you can ask me anything, My problems started in 2003, in 2004 I went private to find out what the problem with my back, after a MRI scan it showed a fracture of L5 vertebrae , transferred to the NHS the same surgeon found I had a plasmactyoma had an operation and radiotheraphy, in 2005 MM kicked in had a SCT in 2005 t…[Read more]

I hope…[Read more]

I have always been aware of it but never know if there is any truth in it, but I have grapefruit for breakfast regularly even when I am on on chemo, ( been on both Velcade and Revlimid over the years) but never had any problems.

Best ask your consultant I suppose but I’m not sure if even they know for sure.

Pete

I have just started cycle 2 of  Velcade, cyclophosphamide but this time the steroids are Prednisolone which I seem to tolerate much better. I am not getting many side effects to date (fingers crossed) which I did when taking Dex.

But not being a medical expert on the subject of steroids, I just wonder why its nearly always Dex if Pred has le…[Read more]