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]

Hello Andy

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

hello, I’m no expert but I have the same problem and its not always a sign of relapse, I have very dodgy blood counts sometimes,any chemo also plays havoc and sometimes a blood transfusion is necessary, but its always best to get it checked out thoroughly, best to discuss with your consultant.

Hello….have signed and shared on Facebook

Hello….<span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px; line-height: 19.5px;”> </span><span style=”font-family: Arial, Oswald, ‘Helvetica Neue’, Helvetica, Helvetica, Arial, sans-serif; font-size: 13px; line-height: 19.5px;”>have signed and shared on…[Read more]

hello Frances,

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]

Now into cycle 2 of bendamustine, but early days yet, don’t think they check it on until later to see if its working.

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]

Now into cycle 2 of bendamustine, but early days yet, don’t think they check it on until later to see if its working.

<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]

HI

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.

Hell Finn

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]

due to the changes in the way myeloma works it has stopped showing up in paraprotin and has now started showing

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]

was told at the end of cycle 3 treatment was not working, however had a ct scan which showed it is working !! so will now complete all 8 cycles, the mysteries of myeloma :).

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

Peter

Hello Maureen

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]

Hello BasingUnit

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]

Hi Jeff
I know I said I stopped gabapentin (GP) and as I said I was still unsure whether it was the right thing to do, well I have started again on a lower dose hoping the muscle spasms come back, mt problem is after a serious bought is shingles on my left leg and groin and the damage to the sciatic nerve cause by the the collapse of L5 vertebrae…[Read more]

Hi Annette
Thank you for all your comments, its always interesting for any information, Rev stopped working for me so I am now on Velcade,prednisolone.cyclophos.I am now into cycle 3 and all seems to be going well I feel fine with minimal side effects but apparently I have to wait until cycle 4 to know what my PP is.
The problem with all these…[Read more]

Thanks Dusk for your comments I have no reason why the change but treatment seems to be going quite well , bloods are OK, still waiting on pp results, but in the main I feel quite well(fingers x) I don’t feel elderly,:) at 74 but suppose I am lol, and after having 10 years of one treatment or another things will change.
Finn, I suppose that could…[Read more]

Thanks Dusk for your comments I have no reason why the change but treatment seems to be going quite well , bloods are OK, still waiting on pp results, but in the main I feel quite well(fingers x) I don’t feel elderly,:) at 74 but suppose I am lol, and after having 10 years of one treatment or another things will change.
Finn, I suppose that could…[Read more]

Hi Annette
Thank you for your post, all these drugs have some side effects some we know nothing about 🙂 but my consultan always he says I’m going to poison your system 🙂 he’s right of course, but it keeps me going.
Thanks again for your comment it is very interesting.
Peter

Due to the amount of comments of bad side effects of Dexamethadone on this forum I am surprised at the lack of comments, I have no idea of the difference between Dex and Prednisalone but it makes a big difference to me in coping with steroids, there may be a good reason why Dex is the preferred option, but it is an interesting question considering…[Read more]