[petesilverParticipant]

Hello-

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 available at the end of April in the mean time I am just taking Steroids.

Peter

[petesilverParticipant]

I always get a copy of letters to my GP and normally within a week of my consultation,  as you say they are very useful and I have to say they are always a good report on what was discussed. I must say I do miss some things said so it’s always why I have a second pair of ears (my wife that is indispensable ) but yes the letters are yours to have without having to ask all the time tell them to put it in your records.

Regards.  Peter

[petesilverParticipant]

Hello Jeff

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

[petesilverParticipant]

Hello AndyG

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 tired, and some times just a little sleepness but not to bad.

I hope things are going well for you.

Peter

[petesilverParticipant]

I was only on 2mg to start with, but they really did cause me serious side effects as did the other tholidamide base derivatives.

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

[petesilverParticipant]

Hi Jan unfortunately the pom really made me unwell even put me I’m hospital for a week on a antibiotic drip because something they call CRP was showing I had an infection, and my appetite has gone and lost 2 stone since I started pomalidamide. But I really have to wait to see my consultant in 2 week then decisions have to be made. I am only on half dose of pom which is 2mg so I don’t think there is much room for reduction. I hate PN with all the different drugs I have had unfortunately it effects my feet permanently not painful just feel numb, it’s like walking on  cotton wool but you get use to it. Thank you for the info I will bear it all in mind.

Regards  Peter

[petesilverParticipant]

Hello Sarah I wish you well on your treatments, I have to say that I have had quite a few years of remissions from some of the drugs, my biggest disappointment was that my SCT only lasted about 14 months but Velcade actually gave me 4 years, but only had various results from Bendamustin, and lenalidamide, and now it seems I can not tolerate pomalidamide, still on a positive note they have kept me going with a reasonable quality of life so I can’t complain so i promise to try and keep a positive outlook.

[petesilverParticipant]

Yes Ann Lynn perhaps I am being over dramatic, I will really know more when I see my consultant in two weeks time, I don’t really want to carry on with the pomalidamide if it makes me feel like  I do, so I hope he can come up with something else. Thank you for your reply I will try and keep my positive head on.

Peter

[petesilverParticipant]

Hi Tina

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 but sometimes it wears me down.

Regards Peter

[petesilverParticipant]

Hello Avril

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.

[petesilverParticipant]

Thank you everyone for all your support,

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 or bad and what we we are going to try this time, so I can’t complain after 11 years.

All the best    Peter

[petesilverParticipant]

Happy new year all,

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

[petesilverParticipant]

 

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 pom was being taken off the CF it was the right time to start, but only time will tell, finished cycle 1, will see him on tuesday when I know he will delay cycle 2 for another 2 weeks, so fingers cross all will be ok,

All the best to everyone for Christmas

Peter

[petesilverParticipant]

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

[petesilverParticipant]

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.

[Author]

Posts