Many hanks for your  reply, helped a lot, just bothered if they put me on Thalidomide, was terrible on that when I as on the CDT, unless they can put me on a smaller dosage.  Hope everything goes well for you. Will let you know how I go on, thank you gin for your help.

Sue

I am on my 4th cycle of VCD, was fine at first, no side effects, protein had gone down from 24 to 19, now been told it has gone up to 28, I am thinking they could have made  mistake, got me mixed up wishful thinking I am finding it hard going now with the 4th cycle very tired and no energy, ok on my dex days, wish I could be on those all the ti…[Read more]

I was diagnosed in August 2012 I was put on CDT for 6 cycles, I did not go through with the SCT, I had 14months remission, then PP started to rise, I am now on the same as you VCD, my 5th week of first cycle, I have an injection once per week for a month then 2 weeks off. The nurse comes to my house to give me the injection. At the…[Read more]

I agree with you regarding SCT, I am 66 and decided against it was diagnosed in 2012, was so ill with the treatment CDT first time, I to believe in quality rather than quantity, I am now on my 2nd line of treatment, VCD after relapsing after 18 months, so far no side affects, keeping fingers crossed.  I say why be ill for around 4-6 m…[Read more]

Need some advise please, anyone know If I am ok to take Garlic tablets and Omega 3 Fish oil while on VCD treatment , I have stopped the Curcumin but not sure about the others help appreciated,

thank you

sue

Thank you for your reply, just thought I hadn’t seen him on here for a while.

Sue

Just wondering anyone know about I think his name is Tom, always signed off with the above, not seen him on here for a while, I do hope he is ok

Sue

Sorry forgot to mention Velcade  injection once per week.

Sue

Do you mind me asking what dose of cycloph. and dex were you on, and what dose are you on now, jus interested, have  just started on cycle 1 day 3 I am on  cyclophosphamide 30mg and dex 2mg, no effects so far but early days.

Before I relapsed the first treatment was thalidomide 100mg  cyclop.500mg and dex 400mg made me feel gh…[Read more]

Just been reading your post, on the VCD, I am starting that treatment today, I am worried sick of the side effects, are they as bad as what they say.  I went through the CDT 18 months ago and was really ill, so I am terrified once again, I decided not to have the SCT because I was so ill with the treatment, I felt I could not  have c…[Read more]

Thank you for your reply.

Sue48

Thank you very much for your help, I have emailed the myeloma Nurse, very kind of you to reply.

Many thanks

Sue48

I am starting Velcade , Cyclophosphamide and dex  (VCD)on  Wednesday, does anyone on  VCD also inject with Fragmin, my Doctor says I don’t need that, but looking around most people seem to be on fragmin, also are the side effects on VCD as bad as what you read, I will be on weekly velcade , am  dreading it, any help would be very much ap…[Read more]

Thank you for your reply regarding velcade and dex, Do you mind me asking what was your paraprotein please, my went up to 19, so I start the VCD, I am going to ask can O knock the cyc off, see how I go on, it made me feel horrible the first time on the CDT.

Thanking you

Sue

Thanking you.

Sue48

just been reading your post, you say you are on velcade, are you also on cyclophosphamide and dex, VCD , by reading on this site not many people who have relapsed seem to be on all 3, I start treatment net week, but the only thing that I am concerned about is the Chclophosphamide, your reply would be appreciated.

Sue48

Are you on the VCD   Velcade/Cyclophosphamide.dex or just Velcade, I know I keep going on about side effects, but reading some comments they sound horrendous , like I said the CDT was bad enough, ill for most of the time.

Sue48

Sue

Thank you for your reply.  My Consultant never seems to give me my blood results, she just says they are normal, you are right it is a pain having to wait for the PP results I have to wait about 10 days, it’s a pity they don’t do the PP when they do the zometa.

I take the 3 capsules Curcumin  a day, I have to admit, I have never fe…[Read more]

I am 65  and was given the choice of a  SCT but decided against it, I too didn’t want to gamble quality of life for what could be a short remission, I know everyone is different, but that is my opinion, they are bringing out different drugs different drugs out all the time.

Good Luck

Sue

I started off with a bad back, suffered for months, my GP kept telling me it was wear and tear then muscle trouble, I suffered so much I asked for a second opinion, it was then he said I would have a blood test which came back abnormal, so he sent me for a MRI scan  then a bone  biopsy that is when I was diagnosed with MM, so I would i…[Read more]

Thank you very much for your reply, I have just got it into my head  that if I don’t go ahead I will not survive for long, but you have just given me a little bit of  hope with the new drugs. My pp went up to 7.4 but on last visit it had gone down again to 7.2, do you know of any people who have not had the SCT and are doing ok. Glad y…[Read more]

How many people on this site have not had a stem cell transplant, I opted out being that I was so ill with treatment, I  am so worried and wondering if I have done the right thing, would feel happier if I could have some opinions.

Think this is a great site, you all seem so very friendly.

sue